Journal History
Click here to go back to the main page.
Sunday, December 31, 2006 8:24 PM CST
Wishing you all the HAPPIEST AND HEALTHIEST 2007 !!!
God Bless You -
Alison
Monday, December 25, 2006 5:50 PM CST
Wishing each and every one of you a blessed and Merry Christmas. I hope that you all were able to find Christ in Christmas this year. I pray that you will give Jesus Christ the one gift for his birthday that He desires….YOU !!!!
I will update soon. I have a doctor’s appointment tomorrow. Addison and I have been sick and in bed since Thursday with the flu/bad cough. Not the best way to spend Christmas but we survived.
HAPPY BIRTHDAY JESUS and MERRY CHRISTMAS TO YOU ALL !!!!
-alison
Tuesday, December 12, 2006 7:46 PM CST
The blessed “stone” has not yet come to “pass.” Although it is a large one, it was close to the bladder so therefore the doctor elected to see if things would progress
“naturally.” We googled “kidney stones” to see what exactly they looked like. The kids, especially the boys, showed great concern as it did not look so much like a “stone” but a “pinecone.” Grant has another doctor’s appointment and CT scan today, so we shall see where things stand and keep you posted on Lil’ Rocky. He has tried several methods to expel the little sucker. This included many wives tales passed down through caring sources and of course, internet suggestions. There was the “beer drinking method” which even his doctor said to give it go. It made him happy and a frequent visitor in the bathroom, but not stone free. While doing my 4 hour glucose testing last week, a nurse suggested a method that was extremely effective for her husband when he was suffering from a kidney stone, and in the hospital for three days on morphine. Three tablespoons of organic, extra virgin olive oil, 3 tbsp. of organic cranberry juice, 3 tbsp. of organic lemon juice and off to the Health Foods store we went. Grant was skeptical of the “salad dressing like” remedy. I was all for the natural method vs. surgery. Well, this made a lot move south, but not the stone. I think he is now electing for a remedy even more natural, a.k.a. more WATER.
On my end, things are going okay. It appears as if I am anemic, hence my total exhaustion, and was borderline with gestational diabetes. So, I am pumping up the iron (um, via cheeseburgers) and reducing my little addiction (ahem, ice cream.) I am sure that part of my anemia problem has to do with absorption of the iron from my prenatal vitamins. That is because calcium interferes with the absorption of iron. Given the fact that I will soon be breaking the safety seal on my 6th bottle of maximum strength, 160 count, fruit flavored Tums, one could easily see where the problem lies. I have had an almost constant, severe case of heartburn since month 2. I suppose I will have some strong healthy bones from all of the calcium I am ingesting but don’t have the energy to climb a flight of stairs. I have also been having a ton of contractions for the last month, initially brought on by the stomach flu and a UTI…..simultaneous I might add. Complete joy to be on an antibiotic tearing up your already terribly troubled tummy. So, I am trying to take it very easy as to not start a train that no one can stop. With all this in mind, however, I do try and remain focused on the prize. I am all too aware of so many people feeling absolutely horrible due to physical ailments and there is no big bundle of joy waiting at the finish line. My house may be messy, the dust thick, laundry piles taller than you can imagine, halls are anything but decked with holly, but I am blessed and I am thankful.
Everyone in the Haddock family is SO excited about the baby and my ever expanding waistline. While snuggling with Addison before bed each night, my belly is pressed against her stomach or leg (twin size bed, not much room for “all” of us) and we giggle uncontrollably as she feels “baby H” (thought we would move away from the negative connotations of Li’ Stinker) kick and squirm. I tell her that her baby brother is not even born yet and he is trying to kick at her and cause trouble. To hear her stories of how she will teach him this or that, protect him, and lately has even proclaimed that she WILL change poopy diapers, is so precious. Eventually I use the fail-proof “roll method” to get out of her bed and I am off to Hayden and Hunter’s room. I then lay down with Hayden, (another twin size bed but lower to the ground and MUCH more difficult to get out of with my protruding abdomen) He always asks me how I am feeling, is the baby moving, if it is really as painful to give birth as they say? I always have to laugh at his line of questioning. Each night he leans over, holds and kisses my belly (large target) and says “Goodnight little Paco.” I have No idea why he calls him that, but think it is pretty darn cute regardless. I good swift yet gentle push from Hayden out of his bed and on to Hunter. Now, Hunter is very practical in our nightly ritual and talks. First we discuss everything about his day, from what he had for lunch, his grades, etc. Then he is always expresses his concern about me and my well-being. I think he is somewhat protective of me and it is sweet. After the initial joy of finding out a new baby was on the way, he asked “can anything bad happen to you when you are pregnant or giving birth?” I was bit alarmed the first time he asked this, however, given our history, I am sure he was just afraid that something could take his mommy away. He frequently asks if I am having contractions and quickly feels my belly and says, “whoa, you sure are.” He too must give a little push from the back side to get me out of his bed. It has become our little family joke. They really are thrilled about this new addition and I certainly hope the excitement does not wear off too quickly after his arrival. It is so different from the experience of having 4 babies in 6 years like we previously did. Of course we had “helpers,” but not like the HELPERS we have now. They are so funny about things now that they are older. Whenever I do have the energy to actually clean something in this house, they will say, “go lay down, you are doing too much.” They usually start pitching in to help. I must devise a way for their generosity to continue!!!
Grant has been amazingly wonderful. He has cooked so many meals because cooking the meals makes me physically sick much of the time. It sounds like a selfish ploy but really, I can eat it, just not cook it. He has done many loads of laundry and cleaned toilets too as that would put me WAY over the nausea edge at times. He has done countless hours of homework with the kids when I had a pounding migraine. Yes, Daddy-O has been a real trooper. But then again, he has always pitched in and helped around the house and with the kids thank goodness. This has just been one of those times I needed him to help out even more and he readily and happily (I think) stepped up to the plate. He has never complained or whined, he has just done what needed to be done. I know the kids recognize this and what an awesome thing for them to witness. Hopefully Addison will grow up and want to have a husband like her daddy who supports his family in every way, and the boys will aspire to be wonderful, helpful husbands and fathers.
Hunter just walked in from school and I must go for now and brace myself for what will come…..his daily band practice with the cornet (sp)….Lord give me strength….lol.
Please don't forget-
JESUS IS THE REASON FOR THE SEASON !!!!
Alison
Tuesday, December 5, 2006 1:05 PM CST
I am sitting here doing my darndest to NOT give birth to a baby (just yet), as my husband tries desperately to give birth to an 8 millimeter kidney stone. We are both consuming enormous amounts of water and are passing each other frequently on the way to the bathroom.
We had an ice/snow storm last Thursday and into Friday. Grant woke me up in the middle of the night in excruciating pain, sweating profusely, and vomiting with blood….you get the picture. I had taken an Ambien about 2 hours before this lovely event occurred (with the blessing of my doctor) so upon my arousal from bed, I felt like I was in the Twilight Zone (groggy and out of it) or an episode of CSI Crime Scene.
We deemed it necessary to seek medical care when he was pacing around our bedroom, mumbling incoherently and moaning in pain. When a man finally admits that he needs to be seen by a doctor, it is really WAY past time to go. So, we hopped in the car, and proceeded to make our way down icy roads and highways that also had a fresh covering of 6-7 inches of snow. Between the slap in the face freezing cold temperatures and the diet Pepsi I was inhaling, I was able to shake off the Ambien affects and focus on the treacherous roads. Meanwhile Grant was quite the back seat driver, yelling about too many bumps, where the ---- is the hospital, slow down, speed up. I got to experience what many dads must experience when they are driving their wives in labor to the hospital. Not fun. Remember at this point we have no idea what the source of this great pain was. We finally made it to the hospital and what a blessing, there was no wait. We walked in and immediately Grant was begging for pain meds. This from a man that has taken a few doses of Tylenol in his whole life. I am sure he looked like a desperate druggy as he pleaded with an older nurse to “hurry and put in an i.v. and give him something.” For a man who makes his living watching surgeries, he is, well, a big baby, when it comes to him and needles. So I thought I was quite comical that in all his 43 years, he had never had an i.v. and now he was downright pleading for one?!? The nurse asked, as she pointed to the pain scale, what his number was from 1-10. He quickly replied, “your pain scale does not go high enough.” “You see, my pain number is way up here,” as he held his hand a foot higher than the scale went. The nurse, rolling her eyes, proceeded to give him an extremely high dose of Delodid (sp) and said, “this will help.” After about 30 minutes, the nurse came back in and again asked what his pain number was. Grant said imploringly, “I still have a high pain number, and could I please have the “man’s dosage” not the “woman’s dosage?” She quickly explained that she gave him a dosage for a man twice his size. A man came in and told him he needed an MRI to determine the source of his pain. Grant insisted on walking there….typical male. They came out of the MRI and Grant said, “kidney stone.” Okay, well, we can handle that diagnosis. Several hours, later the doc said that he had spoken with the urologist and that he could forgo surgery right now. He sent him on his way with a bottle of Percocet and Toradol and said, “call us if the pain gets worse over the weekend and you can’t take it.” So, pain meds “on board” we left the hospital to head to the pharmacy. The roads were still bad but at least it was light out now so we could maneuver through the ice and snow better. He survived the weekend thanks in large part to his little precious pain pills. I have had great sympathy/ empathy for him and his circumstances due to the fact that they say passing a kidney stone is as painful as childbirth. Well, I still have to argue the whole 8 lbs. vs. 8 millimeter issue….but whatever.
We have an appointment today with the urologist to see if he should continue to “wait it out,” or proceed with surgery. It is a rather large stone, but it is close to the bladder so they thought it may pass over the weekend. No such luck.
I’ll keep you posted on the “stone situation” and fill you in on my many “contractions quandary” soon.
-Alison
Friday, November 3, 2006 3:40 PM CST
I am assuming from the 1000 visits to Alexandria’s website in the past few days, that some of you are looking for an update. Sorry for the delay and here you go:
First and foremost, PRAISES !!!
Matt Pearl is doing extremely well after weeks of struggling. So much so, that they are contemplating when they will return back to St. Louis. How exciting is that ?!?!?! I know how much they appreciate all the support everyone has given them while being so far away from home and dealing with Matt’s BMT. It will be such an overwhelmingly WONDERFUL homecoming for the Pearl family. YEAH MATT !!!!!
www.alexandmatt.com
Brett Mazur, the little boy who used to live next door to us, who was hit by a car a few weeks ago is HOME !! After 4 painful surgeries in 8 days, he is doing well. He still has a long way to go for complete healing, but he is on his way. YEAH BRETT !!!!!
Jessica Inchiostro, the 26 year old O’ Fallon mom to Aiden, and wife to Joe, is on Day 16 of BMT. She has had some ups and downs for the past few weeks, but her counts are trending upwards which could result in her going home sometime soon. What an awesome reunion for her to be with her two “boys” again. GO JESS GO !!!!
www.caringbridge.org/visit/jessicainchiostro
Hayley, Grant’s sister, had surgery this week to place a port in the muscle of her arm. This will make delivery of the chemo more bearable. They had blown out most of her veins since she began treatment and they were running out of options. It sounds as if it was a trickier than normal procedure as they do not typically put ports in the muscle of the arm. Her surgeon said she would be in pain from the procedure for a couple of weeks. She received chemo via the new line the next day, and good news, it was working properly. Please keep her in your prayers as she struggles from the daily affects of treatment and is still working to provide for her two sons. No rest for the weary in this case, but she is a tough cookie and is holding her own.
These are all such wonderful praises to God and answer to serious prayers on their behalf. I know each of these families has endured great hardship. As Christians, we are never guaranteed a rose garden. God never said, “Believe in me and your path will be smooth and without trials.” If you believe that, then your life will be even more difficult. Each of us, no matter how challenging, must accept the plan that God has for our lives. There will be wonderful blessings as well as hardships for each of us. Each triumph over trial leads us to have attributes in our character that we did not possess before. So, even in our darkest days, and our greatest sufferings, we can thank God for our newly developed strength. Paul teaches us in the Bible that, “We are pressed on every side by troubles, we are crushed, not broken. We are perplexed, but we do not give up and quit. We are hunted down, but God never abandons us. We get knocked down, but we get back up and keep going.” (2 Corinthians 4:8-9)
I believe that it is much easier to face obstacles with the presence of God in our lives. With Him, we have the hope and the faith to work our way through our circumstances. He also gives us the reassurance that life may be full of so many negative things but our eternal life will be free from all worldly pain.
Rick Warren says, “Every time you forget that character is one of God’s purposes for your life, you will become frustrated by your circumstances.”
Several times you have heard me praise Rick’s book, The Purpose Driven Life.” If you have not been one of the fortunate millions of people to read this book, I would once again strongly recommend it. After Alexandria’s devastating death, I was in the depths of depression that I wish never to return to. I was unsure if I was capable of ever living happily again. That particular time in my life was so dark, so lonely, so unbearable. I was at the lowest of lows. I never questioned God’s plan for me, or for Alexandria, but I certainly did not like the plan. This book was one of the resources that enabled me to crawl slowly and painfully back to life. This is not a book about grief, rather a guide giving you the overall BIG PICTURE on life. It has made such an enormous impact on my life. I often give it as gifts to people experiencing tough times in the hopes that they will find comfort, a deeper understanding of life in general, and the purpose for their being here on this earth.
Please keep the Rhine’s family in your prayers as yesterday marks 6 years of Kailie being diagnosed. Please also keep our family in your prayers as Tuesday, November 7th marks 6 years since Alexandria was diagnosed. I will update soon.
Have I mentioned the Cards ??!?!?
HOW AWESOME WAS THE WORLD SERIES ?!?!?!
Trusting in Him-
Alison
Monday, October 16, 2006 9:26 PM CDT
I wanted to ask for prayers for some friends of ours that used to be our next door neighbors before they moved back to Boston. Their 8 year old son, Brett, was hit by a car in front of their house yesterday and he had to be air-flighted to a local hospital. He has very serious injuries to his leg that required him to be in surgery for much of the day on Sunday. He is expected to make a full recovery but he must endure many more surgeries for complete healing. Please keep the entire Mazur family in your prayers. I know they would greatly appreciate it.
Thank you for your continued prayers for Matt Pearl. He has improved significantly over the past few days and the family is indebted to everyone lifting them up in prayer in their greatest time of need.
Please also keep Jessica, young mom to Aiden, who will be undergoing her BMT tomorrow at Barnes Hospital here in St. Louis, in your prayers as well. She has an amazing spirit and such great desire to enjoy every moment of life despite its current challenges. We should all be so blessed to have such an awesome attitude through such difficult trials.
Please continue to keep Hayley, Grant's sister, in your prayers. She is still receiving chemotherapy every couple of weeks for her breast cancer. She too, has a wonderful attitude towards life, her treatment and her prognosis. She has stated that she has an excellent role model in that department...her neice Alexandria. She also has a special guardian angel watching over her.
We are all good on this end. Everyone has felt the baby kick and they are all ecstatic about it. It is becoming more "real" to them after seeing the ultrasound and my protruding belly, and feeling him kick and poke around. Praise the Lord, I am feeling SO much better than I did the first 5 months. I actually feel human again after months of nausea, dizziness, and intense, almost daily, migraines. I was never that sick, for that long, with any of the other kids. I am still a little emotional and can cry with the wind change but the hormones have settled down a little bit. We are still contemplating names and probably will continue to do so until after his birth. Although I believe that he has already earned the nickname of "lil' stinker" for all the trouble he has caused his mommy thusfar.
Thanks to all of you who wrote to us with name suggestions. Some were cute, some were funny...some just plain scary (lol), but we enjoyed hearing from everyone. It was really neat for us to see people sign in from different parts of the country that we had never seen sign in before. It is such an amazing feeling that is hard to capture in words. To think that people that you have never met before have somehow been impacted by this website and our family's journey boggles the mind. I am grateful for each and every one of you that sign in frequently or never have before. You have all been such an essential part of our hope and our healing. I hope to be able to "pay forward" even an ounce of what you all have meant to us over the past, almost 6 years.
Well, it is off to bed for this prego momma, just wanted to update and ask for prayers for some people we care about.
In Him-
alison
Tuesday, October 10, 2006 7:14 PM CDT
I wanted to write and ask for prayers for friends of ours. We have asked for prayers on their behalf before but this time their situation is even worse. They have two children who have Fanconi Anemia. Their daughter Alex, received her bone marrow transplant 5 years ago, and their son, Matt about 90 days ago in Minnesota. For the last week Matt has really been struggling with a variety of medical issues. He is experiencing GVHD, sats that have dropped, intubation, extreme, uncontrollable pain, unresponsiveness, you get the picture. I can tell you from experience that being in the hospital setting for extended periods of time will just take you to the brink. You experience not only all of YOUR fears, pain, worry, fatigue, hopelessness, and helplessness, but you also must endure all of that through other families who are experiencing the same with their sick child. The cumulative effect is exponential. To witness the pain, suffering and sometimes untimely death of so many children is really more than one can bear. Then you take the Pearl family and you contemplate the fact that they have gone through this gut-wrenching ordeal with two children. It is almost too much for me to think about at times. I re-live much of our pain when I read the hauntingly similiar journal entries that they write. We pray for them several times a day. We pray for healing, that they have some ounce of peace and that they can feel the love and support of thousands of people. Please join me and add them to your prayers. I know they would greatly appreciate it.
www.alexandmatt.com
Please also pray for my friend Nancy's son, Aidan, who is in the hospital undergoing tests to determine why he is so sick.
In Him-
alison
Thursday, September 28, 2006 7:38 PM CDT
I AM SO SORRY FOR THE DELAY !!!!!
We had a baseball game last night and I was at a field trip today so I am just now getting to my computer....
THE BOYS HAVE IT !!!!!!!!!!!!!!!
WE ARE IN THE BLUE !!!!!!!!!!!!!
Now, we just have to come up with a cool "H" name to fit Hunter and Hayden's "H" names. Any suggestions feel free to e-mail me. I think that his middle name should be Grant because we did not pass on Grant's first name, only his middle name down to Hunter. So what sounds good with Grant??
Here are my favorite suggestions thus far (all joking)
Hugh Grant Haddock
Hans Solo Grant Haddock
Hank Grant Haddock
Huck Grant Haddock
I don't know if these can be beat but we are sure getting a kick out of it all.
The kids thought it was wild to see all that they could on the ultrasound. I do have to say that after 45 minutes of looking at all the body parts, the tech asked if we wanted to know gender and we all said "YES" in unison. She did not have to tell me, his "manhood" was quite obvious even to the untrained eye. I said, "It's a boy" and Addison put her hand down (hard) on the table and said, "I DEMAND A REFUND !!!!!!" I was laughing hysterically and said, "Addison !!!" She looked at me and said, "What I do, I DEMAND a refund." Out of the mouths of babes. That comment will certainly go down in the Haddock History Books. I suppose it is quite possible that she could have forgotten that "little talk" that we had before the ultrasound. The one where Grant and I said, "Now whatever the baby is, even if it is not what you want in your heart, let's not make a scene, and we will discuss it at a later time. That was all out the door. It has taken her a little extra time to soak in, but after talking to her at bedtime, and telling her that she will never have to share me with a sister....it is just her and I to shop, get out nails done, etc., well, let's just say she is coming around. She decided she really just wants a baby and is less worried about the gender. Hunter, the brave soul, had the audacity to say, "I think we should have one more and make it an even half-dozen." He was serious. So was I when I whipped my head around so quick I think I scared him and said, "Hunter, the next time you hear someone say, "I'm pregnant, it will be your wife, not your mom !!!!"
He has not mentioned that again.
Addison was SO cute during the ultrasound. She was holding my hand as I lay on the table. She had her other hand on my head as if I was her little patient. She turned to me when the nurse was out of the room and said, "Mommy, you are going to be right there with me when I have all of my babies, aren't you?" "You better believe it I said !!!" I could have cried it was so adorable.
Well, I must get my crew to bed but wanted to share our exciting news.
The Human Oven-
alison
Wednesday, September 27, 2006 8:45 AM CDT
Today is the day !! We will find out this morning the gender of our new little lumpkin. This one will be the official tie breaker of our two girls, two boys family. The kids are home from school and EAGERLY anticipating the event. Hayden keeps asking if we can go shopping immediately after the ultrasound and buy "our baby" some things. They all could not be more thrilled and it is really neat for us to see their excitement and listen to their comments. I am thankful that Addison's consistent and constant question will finally be answered. Grant and I of course have just been praying that everything looks good and there are no problems health wise. Please say a prayer for that. I will try to update later (after a
Babies R' Us visit of course) and fill you in.
Thanks for continuing to follow us on the journey of life-
alison
Monday, September 18, 2006 9:17 PM CDT
***** NEW PICTURES *****
It has been awhile since my last update. I always have the best intentions, my follow-through is the problem. I am finally, just in the past week, (week 18) starting to get my “Momma Mojo” back. It really has been a long summer of feeling crummy, and almost daily migraines, but I believe I am beginning to turn the corner, PRAISE THE LORD !!!!! I think having 4 kids in 6 years, my body was definitely used to “pregnancy mode.” Now that it has been off that mode for 7 years, I suppose it was in shock…..that, or now I am just older and the hormone situation is just completely whacked out. Anyways, my nausea has decreased significantly and I am not as “comatose tired” as I was, so life is good. We find out next week if we are “in the pink” or “in the blue,” and the kids could not be more excited. Every night when I am tucking Addison in, she says, “Mommy what do THINK you are having…I mean if you could only pick ONE!” Of course I tell her that we have a 50hance that it is a girl, 50hance it is a boy.” That is not really the answer she is looking for, but it is an honest one. I do have my suspicions, based on previous pregnancies, and how I felt with different genders. However, this pregnancy has been so different in other ways, that I am not relying on my “motherly instincts.” I think we are going to take the kids with us to the ultrasound as I really think that they will get a kick out of it. They are all old enough now to understand things so hopefully it will be a good experience.
The kids started school a few weeks ago. It was certainly a transition period for me. I am so used to having Addison go half-day kindergarten and this year she is at school all day. Last year I would pick her up at noon and we would enjoy a nice lunch at home or out and discuss the morning. Then I would take her on fun little field trips at least once a week. We would go to the zoo, the butterfly house, the library, the park, etc. I desperately miss that one on one time with her. It was just the two of us and we would have a big time.
You really get close to your children when you spend time with them one on one…no interruptions, no other friends or siblings to alter their behavior or personalities. I know that is why Alexandria and I became so incredibly close. We were inseparable. We did every single thing together. We went to the bathroom together (while getting chemo she needed help with this task…maneuvering the I.V. poles etc.) we slept in the same room and sometimes same bed, we had almost every meal together, we were alone at the hospital countless times and shared so many things there. We would pray together, read, do arts and crafts, listen to music, watch movies, play board games and Nintendo games. To this day, I cannot bear to listen to the music from some of those video games. I literally feel like I am going to vomit if I hear “Yoshi” music. That was the first game she ever played in the hospital after her diagnosis. Grant and I had previously vowed to not get those gaming systems for our kids. That went out the window when we needed a new source of entertainment for the hospital bound child or the one’s at home. All those hundreds of days we spent at the hospital over the course of two and a half years there were no outside distractions. Not people, not things….nothing to take my focus away from her. I am so thankful for that time. It was just the two of us and we would have a big time.
Hunter starting middle school was another big transition for me. It was that realization that he is getting bigger and older and darn it there is nothing you can do to stop the hands of time. I would have done that a long time ago if it were possible. The first day of school I drove him myself instead of carpooling. We talked and laughed about what a big day this was and that he was entering a new chapter in his life. I told him that this would be such an adventure and to enjoy the ride. We had taken pictures before we left the house and that was a good thing. When we pulled up and Hunter saw other parents making their kids “pose” for first day school pics, he said, “thank goodness we did that in the privacy of our own home.” He hopped out of the car and I was pleased with my “parental pep talk” but knew I would be remised if I did not utter the words that I always do when we depart from each other. “I love you SO much,” I mouthed through the mini-van window. He turned to me, not a care in the world of who could be watching, (not even his best friend James who had just gotten out the car in front of us) and blew me a big kiss !!!!!!!! This moment in time will be engraved in my memory bank as it was so incredibly caring, sweet, and just what I needed to get me through the day. It was just the two of us and we had a big time. Tears streamed down my face the whole way home. Tears for what was and for what could have been. The knowledge that if Alexandria were here, that she would be going to that same middle school was too much. She would be in 7th grade and Hunter 6th.
I then took Hayden and Addison to school but I am proud to say, I held in my tears until they were out of my sight. My friend Nancy and I kept it together, although the lump in our throats was ever-growing. We walked outside (of course after strolling by the kids rooms yet again to make sure they were okay) I was struggling. And my precious Heavenly daughter sent me a gift that she has been known to send before. Usually it has been in the company of Johnelle or Evelyn, both dear friends and fellow bereaved moms. Without warning, without rhyme or reason, I swear that the locks on my car doors lock after I unlock them. I can put the keys down on the ground, put them in my purse…but they will either lock or unlock without me touching the doors or the button. I used to think it was really freaky and it rarely happened, but it did seem to happen at times when I could really use a sign from Alexandria. Now I consider it a little gift. I smile and get a good laugh. I have even had the car/locks looked at before and there was nothing wrong with them.
Well, much more to update on, including before and after pictures of Addison and her 11 inch donation to Locks of Love, but it is getting to be the time when I tuck the kids in and find out more details of the day. It seems that my kids really let their guards down when the lights go down and share a great deal with me. I hope they never grow too old for this ritual. Just the two of us, one on one, having a big time.
A BIG HUGE HAPPY 10th BIRTHDAY TO HAYDEN PIERSON HADDOCK tomorrow, September 19th !!!!!!!
In Him-
alison
Friday, September 1, 2006 5:50 PM CDT
I hope everyone has a safe and happy long weekend spending time with friends and family......or just relaxing.
update soon-
Alison
Friday, August 18, 2006 7:49 PM CDT
I will warn you that this is one of those times that the weight of the world is on my shoulders, and that means that I am here for a good cry, a good venting session, and my weekly therapy. (don’t worry it does get better)
It seems as though life just comes in sporadic ups and downs. Up, up, up, and then down, down, down. It used to happen in three’s just like the old wives tale predicted. Now, there is no rhyme or reason. I think as you get older, the realization that life can be just plain hard hits you like a bullet.
Cancer is literally running rampant in our world. It seems like every one
we know is affected either personally, or through a friend or family member.
Grant’s sister, Hayley, was diagnosed with breast cancer a few weeks ago. She is 41 years old. That is too young to have cancer. Seven years old…it is too young to have cancer too. When is the time bomb going to go off…for all of us?
Suffering is not easy to go through, nor is it easy to watch others endure. I do really good for a while. I try to remain positive to prove to myself and to others that you can suffer the worst pain imaginable, the loss of a child, and live to tell about it. I try to get up and put a smile on my face and exude happiness to the world. (okay, I admit it, except now that I am hormonally challenged)
This is not an act, I truly believe that life is good. But there are those times that life just stinks. There will come times in all of our lives when we are overwhelmed with our own or others’ circumstances. When friends of ours have two children fighting leukemia or Fanconi Anemia, when a 26 year old mom with a baby is diagnosed with leukemia and is preparing for a BMT, when two dear friends of mine who have father’s who are very ill, when one of my closest friends has moved to another state and is struggling with all that entails, when two other friends are in the midst of the 1st and 2nd Angelversaries of their children, yet another neighbor’s child is battling lymphoma and the family is having a tough time right now,……..yes, my heart is understandably heavy. I guess it is because I care deeply about these individuals and I do not care to see them suffering. Suffering is a tricky thing. I do believe that what does not kill you will make you stronger. Then there are other days I think I must be half dead.
We did manage to get through Alexandria’s birthday on August 6th. We went to eat at one of her favorite restaurants. Ironically we were seated at a table for six. I did not say a word. Addison, with tears in her eyes, stood up and walked over to the empty chair. She pulled it away from the table and said, “Let’s just pretend Sissy is right here with us.” UGH….. My heart just broke into a thousand pieces. The boys started to well up with tears too and the subject was quickly changed by Hayden. He was talking about wanting to see the movie “Monster House.” I said, “No way buddy, WAY too scary, you all will be sleeping in my bed for a month. To which he replied, “I don’t get scared mom, I just “jump” into my bed at night so Frankenstein won’t get me!” It was hilarious and we all burst into a fit of laughter.
We launched 13 pink balloons to Heaven that evening and sang “Happy Birthday” to our Sweet Sissy Girl. I still cannot believe that she would be thirteen and entering 7th grade. (insert great big sigh here….but no tears thankfully)
I know I am just a tired, grumpy, hormonally overloaded momma right now, and that this too shall pass. I received the okay from my OB to go off the progesterone. I am sure the hormonal detox is not making my situation any better. Ladies, we all know the havoc that “outta whack hormones” can do to you (and your family!) So, my suggestion would be to run, okay, run fast, in the other direction if you see me coming, or at least have tissues in hand.
(or maybe a bat for me to borrow for my anger management)
I can think of some extremely positive things going on and blessings for sure. There is a cutie patootie baby tumbling around in my belly and we got to see him/her on Monday. After one hour of genetic counseling (remember I am now an official member of the “old mom’s club)” and one VERY full bladder, we went in for the ultrasound. The sonographer was in shock looking at the screen. I am thinking, “what do you see wrong with my baby?” “It is your bladder, it is so, so full,” she said in disbelief.
She basically told me to reduce my load by three cups and handed me one for handy-dandy measuring. So maybe this is all TMI, but it was really quite comical. Have you ever tried to “reduce by 3 cups” and only 3...then stop? It is a painful little procedure. Back out of the restroom, on the table and she laughs, and says, “you are still so full.” My bladder, which shows up on the screen as black, was pretty much consuming the screen. So much for viewing baby?!? So I complied with her request to reduce by 5 more cups…painfully, once again. Then this little stinker would not cooperate and she could not get the measurements she needed. I tried laying on my left side, right side, flat, to no avail. I was just about to try standing on my head (lol) when she said just walk around and then lay on your stomach for a while, I will come back. I did as she asked. The doctor decides to try her luck and baby temporarily complies. I repeat steps 1 through 5 and we try again. It appears as if the baby was trying to do the back stroke, kicking wildly and arms flailing about. It was so cute. We got measurements, I emptied completely, everyone was happy and we were on our way.
So the other blessings include the fact that a few weeks ago we had Vacation Bible School at our church. Want to hear something AMAZING ?????
315 children attended every night that week !!!!!! Isn’t that awesome?
It was so cool to see those little lives transformed and to witness the joy of a child learning about Jesus.
We have also been blessed in attending the Jeremy Camp and Casting Crowns concerts over the past few weeks at Six Flags here in St. Louis. Along with Mercy Me, these are our top three contemporary Christian music artists. Their concerts and songs are always uplifting. How inspiring to see their love of God and witnessing to crowds of over 5,000.
Then I had the opportunity to attend the Women of Faith conference. Natalie Grant sang “Held” (words were on a previous update) and I was thankful to God that I had packed a fair amount of Kleenex. The speakers were wonderful as always and I left feeling renewed.
These past few weeks have been mentally and physically exhausting but I must not lose sight of the hope that still resides within me. Really HOPE is all I need….it is all anyone needs. You can only find real hope in one place and that is with Jesus.
“The pathway is broken,
The signs are unclear
And I don’t know the reason why You brought me here,
But just because you love me the way that you do,
I’m going to walk through the valley if You want me to.
‘Cause I’m not who I was when I took my first step
And I’m clinging to the promise You’re not through with me yet.
So if all of these trials bring me closer to You,
Then I will go through the fire if You want me too.
It may not be the way I would have chosen,
But You lead me through a world that’s not my home.
But You never said it would be easy,
You only said I’d never go it alone.
So when my whole world turns against me and I’m all by myself and
I can’t hear You answer my cries for help.
I’ll remember the suffering Your love put you through
And I will go through the valleys if You want me too.”
Ginny Owens, "If You Want Me To”
So, I know that no matter what trials I go through, the obstacles that I, or someone I love must endure, GOD IS ALWAYS THERE !!!!! HE WILL NEVER LEAVE US OR FORSAKE US…..that is a PROMISE.
Please keep the following people in your prayers as they desperately need them. Please take the time to visit their websites and tell them Angel Alexandria sent you.
Grant’s sister Hayley: breast cancer. Starting chemo and radiation on August 29th. Website is in the process of being set up…stay tuned.
Jessica Inchiostro: 26 year old local mom diagnosed with ALL on June 1, 2006. Needs a BMT but still not in remission.
www.caringbridge.org/visit/jessicainchiostro
Khalita: 30 year old friend through Caringbridge who suffers from aplastic anemia and has for many, many years. She is having a difficult time right now with various things.
www.caringbridge.org/nc/khalita
And then of course are my two friends who have had their daughter’s and son’s Angelversaries this week.
Kailie’s was on August 14th.
www.caringbridge.org/page/kares4kailie
And Cody’s
Today, August 18th
www.caringbridge.org/va/cody
In His Hands-
Alison
Saturday, August 5, 2006 7:24 AM CDT
(written Friday)
What I was trying to explain in my last update, but did not do a very good job of it, is that although each of our first four children were planned out perfectly, this precious child is God’s plan. That is what makes it even more beautiful. Each child that enters this world is a gift from God and we are so thankful that God entrusted us with another blessing.
Addison’s 7th Birthday is today, and so……..
HAPPY BIRTHDAY TO YOU…….CHA CHA CHA
HAPPY BIRTHDAY TO YOU…….CHA CHA CHA
HAPPY BIRTHDAY DEAR ADDISON and ALEXANDRIA
HAPPY BIRTHDAY to YOU ……..CHA CHA CHA !!!!!!!!
Alexandria’s birthday is Sunday, August 6th. I cannot get my mind around the fact that Alexandria would be turning 13. I am not sure, I have read different things on how you age in Heaven. I am not sure if she is still 9 ½, has progressed through next years and will be turning 13, or if residents of Heaven get to choose what age they want to be.
Happy Birthday my Sweet Sissy Girl. I love you and miss you desperately.
For some reason Addison’s approaching 7th birthday has been a little difficult. I suppose it is because that is the last birthday Alexandria had that she was not sick. I remember the party we had for her at our home so vividly. It was a garden tea party. I had special little cupcakes made with flowers on them, pink lemonade instead of tea. It was beautiful. Then the rain came. I frantically took all the decorations down and got them inside so they would not be destroyed. The rains stopped as quickly as they began and all was good. I set out all the decorations again………ah perfect……..until the rains came …yet again. But in the end, all was well, and dry, and the party was perfect.
We have been so busy this week and it has been an emotional one, but a blessed one as well. I will share more on that later but have to run right now.
(how’s that for a short update)
In His Service- Alison
Sunday, July 30, 2006 7:32 PM CDT
*** PLEASE SEE NEW PHOTOS (FINALLY) ***
………..continuing the previous update from yesterday…………
Grant had to go to Arkansas for work the day I got home from Tahoe. He literally pulled the mini-van in front of the airport, I came out, we exchanged a hug, a quick “atta girl”, he unloaded, I loaded my luggage, and there you go. I felt so crummy that night aching bad and feeling nauseous. I thought, man, I REALLY over did it. The kids were so sweet. They all gave me massages and got me whatever I needed. I laid on the floor most of the evening, unable to move. Heat exhaustion, dehydration, or perhaps a case of severe stupidity?
I literally was on a mental, natural high from my endeavor, yet, physically felt like dog-doo all week. Grant got home and I told him I was still feeling bad. We both just thought I must have a bug, still not over the bronchitis, or did not properly prepare my brain and body for Tahoe.
Hayden woke me up one night and said he was coughing and could not get back to sleep. I got up, got him medicine, snuggled with him a while, came back down stairs to my bedroom and it hit me like a lead balloon. I almost did not make it to the bathroom….continuous vomiting for hours……what the ?!?!?
Well, ya think after 4 babies, I would be fairly familiar with the signs and symptoms…….a quick trip to Walgreen’s and the doctor that day and the news was pretty darn obvious……
SO…… many of you are already ‘in the know” but for those who are not, here it is the long awaited news…….
BABY HADDOCK # 5 is on the way !!!!!!!!!!!!
Yes, I rode my bike 100 miles, PREGNANT !!!!!!!!!!!
Did not know it friends……very scary !!!!!!!!
Now you know why it was even that more appreciated and miraculous.
I had an extra little angel with me all day and did not even know it.
There were a great deal of emotions that ran through me once this wonderful news was confirmed. I’ll admit that we are one of these overly blessed couples. Grant and I were told when I was 19 and diagnosed with endometriosis that we would probably not be able to have children. I suppose we proved those doctors wrong, huh? Anyways, each time we decided it was time to have another child, we began trying, and bada boom, bada bing…..baby. Yes, we had 4 babies in 6 years and that is how we wanted it. Everyone who knows me well, knows that we have been “on the fence” about whether or not to have more children for a long, long time. It is all personal decisions, but we wanted to make sure that we focused exclusively on Hunter, Hayden and Addison after Alexandria passed away. Not that we necessarily care what other people think, but we also knew we ran the risk of others thinking we were trying to “replace” Alexandria……um, hello, IMPOSSIBLE !!!! Our kids had been through SO much for 3 years through Alexandria’s diagnosis and passing, and we felt we owed it to them to have our undivided attention.
The REALLY interesting news is that it took some time, calculating, etc. but my doc, Grant and I finally figured out the due date. Are you ready for this????
Of all the 365 days in the year, my due date is February 16th, 2007.
I suppose this is irony at its best and bittersweet for sure. This is confirmation to me that my daughter is in cahoots with God. She was in on this sneaky little deal I know it. She obviously does not want me to be so sad at that time of year any more and helped by sending me this little gift. Grant said one morning, “this is so sad, this will be our only baby that did not get to know Alexandria.” With tears immediately streaming down my face, I said, “ I believe that this baby knows Alexandria very well.” I believed that she helped God choose this baby for our family. I think she hand selected it with His help. I envision her in her Heavenly “Hello Kitty” home, rocking this baby, holding this baby, kissing him/her while singing a lullaby just like her mommy sang to her. In my heart I know that God said, “yes my dear child, this one is perfect for them,” and Alexandria kissed that baby goodbye and they sent it straight to me.
Okay, so I am BAWLING right now, AGAIN !!! It is hormone HE double hockey sticks over here. I am on progesterone (pills only this time…with Addison I had to get daily injections delivered by the needle phobia Granty) Yes, he can watch any kind of surgery or medical procedure all day in his job and not flinch or be bothered, but getting a shot himself or giving one to me…..good Lord……can you say, “BABY!“ The progesterone is making me cranky momma and also makes me non-sleepy. Well we all know I have MAJOR sleeping issues any ways, so this is not helping. Although lately I have altered the time I take it and it has helped tremendously. It is also making me have wicked bad migraines :(
Grant was SO excited when I told him the news. He had the room situation figured out, had gone to baby names dot.com, and was contemplating pink or blue, before it even had time to register on my radar screen. About an hour or so after I told him the big news, he came out on the deck where I was sitting and said “are you showing yet?“ “Do you feel like you did with the girls, or the boys?“ I really just felt crummy. Doting Daddy, really cute. So, the sweetest thing was when we told the kids. OH MY GOSH it was hilarious !!!!!! We have to show the video tape here some day. Hunter did not even look up from the table where he was engrossed in his dinner preparations (a handmade pizza) and basically said that he would need proof before he would believe us. Um, hello who does this sound like?!?!? He honestly did not think we were telling the truth. Hayden said that “it was too good to be true” and “I am not going to believe you because if you are joking, I am going to be really sad.” So, we showed the unbelievers the ultrasound pictures (a little unrecognizable bean at this point) and they said, “that is good enough proof for me.” All the while Addison is 10 minutes into a 30 minute intense cardio workout jumping up and down screaming with excitement. The next line of questioning after the initial shock was, “Is it a girl or a boy?” We asked what each of them wanted. Hunter votes boy….Hayden votes boy, Addison said in the sweetest, most honest and precious voice ever, “I just want a healthy baby.” I thought for sure she would have said GIRL !!!! For just an almost 7 year old, it truly shows you how Alexandria’s situation has affected their lives….health above all. Hunter has since reversed his vote. Last week he said, “Mommy, I really want Addison to have a sister here with her, so I want you to have a girl.” Tears and more hormonal tears. It was SO sweet of him. I have explained that it is God’s choice on what the gender is and we will all be happy with whichever he has chosen for our family. HEALTHY is certainly what we want.
So it seems that God does not have fences. His decisions and plans for us and our lives, limitless. His love endless. His blessings overflowing. The Lord gives and he takes away….but I’ll praise Him in whatever He chooses for my life.
Trusting in Him-
Alison
Alexandria’s favorite Bible verse and of course now mine too….
Trust in the Lord with all your heart,
Lean not on your own understanding
In all your ways acknowledge Him
And He will make your paths straight. Proverbs 3:5
Sunday, July 30, 2006 7:29 PM CDT
******NEW PHOTOS ********
………..continuing the previous update from yesterday…………
Grant had to go to Arkansas for work the day I got home from Tahoe. He literally pulled the mini-van in front of the airport, I came out, we exchanged a hug, a quick “atta girl”, he unloaded, I loaded my luggage, and there you go. I felt so crummy that night aching bad and feeling nauseous. I thought, man, I REALLY over did it. The kids were so sweet. They all gave me massages and got me whatever I needed. I laid on the floor most of the evening, unable to move. Heat exhaustion, dehydration, or perhaps a case of severe stupidity?
I literally was on a mental, natural high from my endeavor, yet, physically felt like dog-doo all week. Grant got home and I told him I was still feeling bad. We both just thought I must have a bug, still not over the bronchitis, or did not properly prepare my brain and body for Tahoe.
Hayden woke me up one night and said he was coughing and could not get back to sleep. I got up, got him medicine, snuggled with him a while, came back down stairs to my bedroom and it hit me like a lead balloon. I almost did not make it to the bathroom….continuous vomiting for hours……what the ?!?!?
Well, ya think after 4 babies, I would be fairly familiar with the signs and symptoms…….a quick trip to Walgreen’s and the doctor that day and the news was pretty darn obvious……
SO…… many of you are already ‘in the know” but for those who are not, here it is the long awaited news…….
BABY HADDOCK # 5 is on the way !!!!!!!!!!!!
Yes, I rode my bike 100 miles, PREGNANT !!!!!!!!!!!
Did not know it friends……very scary !!!!!!!!
Now you know why it was even that more appreciated and miraculous.
I had an extra little angel with me all day and did not even know it.
There were a great deal of emotions that ran through me once this wonderful news was confirmed. I’ll admit that we are one of these overly blessed couples. Grant and I were told when I was 19 and diagnosed with endometriosis that we would probably not be able to have children. I suppose we proved those doctors wrong, huh? Anyways, each time we decided it was time to have another child, we began trying, and bada boom, bada bing…..baby. Yes, we had 4 babies in 6 years and that is how we wanted it. Everyone who knows me well, knows that we have been “on the fence” about whether or not to have more children for a long, long time. It is all personal decisions, but we wanted to make sure that we focused exclusively on Hunter, Hayden and Addison after Alexandria passed away. Not that we necessarily care what other people think, but we also knew we ran the risk of others thinking we were trying to “replace” Alexandria……um, hello, IMPOSSIBLE !!!! Our kids had been through SO much for 3 years through Alexandria’s diagnosis and passing, and we felt we owed it to them to have our undivided attention.
The REALLY interesting news is that it took some time, calculating, etc. but my doc, Grant and I finally figured out the due date. Are you ready for this????
Of all the 365 days in the year, my due date is February 16th, 2007.
I suppose this is irony at its best and bittersweet for sure. This is confirmation to me that my daughter is in cahoots with God. She was in on this sneaky little deal I know it. She obviously does not want me to be so sad at that time of year any more and helped by sending me this little gift. Grant said one morning, “this is so sad, this will be our only baby that did not get to know Alexandria.” With tears immediately streaming down my face, I said, “ I believe that this baby knows Alexandria very well.” I believed that she helped God choose this baby for our family. I think she hand selected it with His help. I envision her in her Heavenly “Hello Kitty” home, rocking this baby, holding this baby, kissing him/her while singing a lullaby just like her mommy sang to her. In my heart I know that God said, “yes my dear child, this one is perfect for them,” and Alexandria kissed that baby goodbye and they sent it straight to me.
Okay, so I am BAWLING right now, AGAIN !!! It is hormone HE double hockey sticks over here. I am on progesterone (pills only this time…with Addison I had to get daily injections delivered by the needle phobia Granty) Yes, he can watch any kind of surgery or medical procedure all day in his job and not flinch or be bothered, but getting a shot himself or giving one to me…..good Lord……can you say, “BABY!“ The progesterone is making me cranky momma and also makes me non-sleepy. Well we all know I have MAJOR sleeping issues any ways, so this is not helping. Although lately I have altered the time I take it and it has helped tremendously. It is also making me have wicked bad migraines L
Grant was SO excited when I told him the news. He had the room situation figured out, had gone to baby names dot.com, and was contemplating pink or blue, before it even had time to register on my radar screen. About an hour or so after I told him the big news, he came out on the deck where I was sitting and said “are you showing yet?“ “Do you feel like you did with the girls, or the boys?“ I really just felt crummy. Doting Daddy, really cute. So, the sweetest thing was when we told the kids. OH MY GOSH it was hilarious !!!!!! We have to show the video tape here some day. Hunter did not even look up from the table where he was engrossed in his dinner preparations (a handmade pizza) and basically said that he would need proof before he would believe us. Um, hello who does this sound like?!?!? He honestly did not think we were telling the truth. Hayden said that “it was too good to be true” and “I am not going to believe you because if you are joking, I am going to be really sad.” So, we showed the unbelievers the ultrasound pictures (a little unrecognizable bean at this point) and they said, “that is good enough proof for me.” All the while Addison is 10 minutes into a 30 minute intense cardio workout jumping up and down screaming with excitement. The next line of questioning after the initial shock was, “Is it a girl or a boy?” We asked what each of them wanted. Hunter votes boy….Hayden votes boy, Addison said in the sweetest, most honest and precious voice ever, “I just want a healthy baby.” I thought for sure she would have said GIRL !!!! For just an almost 7 year old, it truly shows you how Alexandria’s situation has affected their lives….health above all. Hunter has since reversed his vote. Last week he said, “Mommy, I really want Addison to have a sister here with her, so I want you to have a girl.” Tears and more hormonal tears. It was SO sweet of him. I have explained that it is God’s choice on what the gender is and we will all be happy with whichever he has chosen for our family. HEALTHY is certainly what we want.
So it seems that God does not have fences. His decisions and plans for us and our lives, limitless. His love endless. His blessings overflowing. The Lord gives and he takes away….but I’ll praise Him in whatever He chooses for my life.
Trusting in Him-
Alison
Alexandria’s favorite Bible verse and of course now mine too….
Trust in the Lord with all your heart,
Lean not on your own understanding
In all your ways acknowledge Him
And He will make your paths straight. Proverbs 3:5
Sunday, July 30, 2006 6:34 PM CDT
*** PLEASE SEE NEW PICS (FINALLY) ***
………..continuing the previous update from yesterday…………
Grant had to go to Arkansas for work the day I got home from Tahoe. He literally pulled the mini-van in front of the airport, I came out, we exchanged a hug, a quick “atta girl”, he unloaded, I loaded my luggage, and there you go. I felt so crummy that night aching bad and feeling nauseous. I thought, man, I REALLY over did it. The kids were so sweet. They all gave me massages and got me whatever I needed. I laid on the floor most of the evening, unable to move. Heat exhaustion, dehydration, or perhaps a case of severe stupidity?
I literally was on a mental, natural high from my endeavor, yet, physically felt like dog-doo all week. Grant got home and I told him I was still feeling bad. We both just thought I must have a bug, still not over the bronchitis, or did not properly prepare my brain and body for Tahoe.
Hayden woke me up one night and said he was coughing and could not get back to sleep. I got up, got him medicine, snuggled with him a while, came back down stairs to my bedroom and it hit me like a lead balloon. I almost did not make it to the bathroom….continuous vomiting for hours……what the ?!?!?
Well, ya think after 4 babies, I would be fairly familiar with the signs and symptoms…….a quick trip to Walgreen’s and the doctor that day and the news was pretty darn obvious……
SO…… many of you are already ‘in the know” but for those who are not, here it is the long awaited news…….
BABY HADDOCK # 5 is on the way !!!!!!!!!!!!
Yes, I rode my bike 100 miles, PREGNANT !!!!!!!!!!!
Did not know it friends……very scary !!!!!!!!
Now you know why it was even that more appreciated and miraculous.
I had an extra little angel with me all day and did not even know it.
There were a great deal of emotions that ran through me once this wonderful news was confirmed. I’ll admit that we are one of these overly blessed couples. Grant and I were told when I was 19 and diagnosed with endometriosis that we would probably not be able to have children. I suppose we proved those doctors wrong, huh? Anyways, each time we decided it was time to have another child, we began trying, and bada boom, bada bing…..baby. Yes, we had 4 babies in 6 years and that is how we wanted it. Everyone who knows me well, knows that we have been “on the fence” about whether or not to have more children for a long, long time. It is all personal decisions, but we wanted to make sure that we focused exclusively on Hunter, Hayden and Addison after Alexandria passed away. Not that we necessarily care what other people think, but we also knew we ran the risk of others thinking we were trying to “replace” Alexandria……um, hello, IMPOSSIBLE !!!! Our kids had been through SO much for 3 years through Alexandria’s diagnosis and passing, and we felt we owed it to them to have our undivided attention.
The REALLY interesting news is that it took some time, calculating, etc. but my doc, Grant and I finally figured out the due date. Are you ready for this????
Of all the 365 days in the year, my due date is February 16th, 2007.
I suppose this is irony at its best and bittersweet for sure. This is confirmation to me that my daughter is in cahoots with God. She was in on this sneaky little deal I know it. She obviously does not want me to be so sad at that time of year any more and helped by sending me this little gift. Grant said one morning, “this is so sad, this will be our only baby that did not get to know Alexandria.” With tears immediately streaming down my face, I said, “ I believe that this baby knows Alexandria very well.” I believed that she helped God choose this baby for our family. I think she hand selected it with His help. I envision her in her Heavenly “Hello Kitty” home, rocking this baby, holding this baby, kissing him/her while singing a lullaby just like her mommy sang to her. In my heart I know that God said, “yes my dear child, this one is perfect for them,” and she kissed that baby goodbye and they sent it straight to me.
Okay, so I am BAWLING right now, AGAIN !!! It is hormone HE double hockey sticks over here. I am on progesterone (pills only this time…with Addison I had to get daily injections delivered by the needle phobia Granty) Yes, he can watch any kind of surgery or medical procedure all day in his job and not flinch or be bothered, but getting a shot himself or giving one to me…..good Lord……can you say, “BABY!“ The progesterone is making me cranky momma and also makes me non-sleepy. Well we all know I have MAJOR sleeping issues any ways, so this is not helping. Although lately I have altered the time I take it and it has helped tremendously. It is also making me have wicked bad migraines L
Grant was SO excited when I told him the news. He had the room situation figured out, had gone to baby names dot.com, and was contemplating pink or blue, before it even had time to register on my radar screen. About an hour or so after I told him the big news, he came out on the deck where I was sitting and said “are you showing yet?“ “Do you feel like you did with the girls, or the boys?“ I really just felt crummy. Doting Daddy, really cute. So, the sweetest thing was when we told the kids. OH MY GOSH it was hilarious !!!!!! We have to show the video tape here some day. Hunter did not even look up from the table where he was engrossed in his dinner preparations (a handmade pizza) and basically said that he would need proof before he would believe us. Um, hello who does this sound like?!?!? He honestly did not think we were telling the truth. Hayden said that “it was too good to be true” and “I am not going to believe you because if you are joking, I am going to be really sad.” So, we showed the unbelievers the ultrasound pictures (a little unrecognizable bean at this point) and they said, “that is good enough proof for me.” All the while Addison is 10 minutes into a 30 minute intense cardio workout jumping up and down screaming with excitement. The next line of questioning after the initial shock was, “Is it a girl or a boy?” We asked what each of them wanted. Hunter votes boy….Hayden votes boy, Addison said in the sweetest, most honest and precious voice ever, “I just want a healthy baby.” I thought for sure she would have said GIRL !!!! For just an almost 7 year old, it truly shows you how Alexandria’s situation has affected their lives….health above all. Hunter has since reversed his vote. Last week he said, “Mommy, I really want Addison to have a sister here with her, so I want you to have a girl.” Tears and more hormonal tears. It was SO sweet of him. I have explained that it is God’s choice on what the gender is and we will all be happy with whichever he has chosen for our family. HEALTHY is certainly what we want.
So it seems that God does not have fences. His decisions and plans for us and our lives, limitless. His love endless. His blessings overflowing. The Lord gives and he takes away….but I’ll praise Him in whatever He chooses for my life.
Trusting in Him-
Alison
Alexandria’s favorite Bible verse and of course now mine too….
Trust in the Lord with all your heart,
Lean not on your own understanding
In all your ways acknowledge Him
And He will make your paths straight. Proverbs 3:5
Friday, July 28, 2006 0:07 AM CDT
Well here it is one of two long overdue updates. I will warn you, this is really long.
"Tales from Tahoe and the Little Engine Who Could"
I DID IT !!!!!! I finished the 100 mile Century Bike Ride around Lake Tahoe !!!!!
It was not without emotional and physical pain….thinking of Kailie, “trying” to support Johnelle (I was a blubbering idiot and hardly a source of comfort for her and John and this will make sense later)
The trip began at the St. Louis International Airport, with someone backing up in the parking garage and hitting my bumper. Thank goodness it was a nice man and we were able to exchange info quickly and move on our way. I will admit though that I was concerned that this was a sign of how my weekend was going to go. I arrived at Southwest Airlines…..and handed John a disclaimer. I asked him to sign on the dotted line that if he took ANY photos of me from the waist down, in my bike shorts, I would sue him in a court of law….I happen to know a lawyer who would take the case for free. LOL!!!! So, I was semi-joking about that and he nicely agreed.
The flight over the mountains and through the woods was absolutely spectacular. I am always amazed at how quickly you can feel so small in this great big world when your view and perspective is from 38,000 feet.
We took a bus from Reno to Lake Tahoe, winding up and down and all around and I felt sweaty and nauseous. I chalked it up to the mega dose antibiotic I have been on for the bronchitis, and being tired from not sleeping AT ALL for several nights before we left. I walked into my hotel room and I immediately dropped my luggage and just stood in absolute awe at the view from my window. The mountains and lake were so incredibly beautiful. I thanked God for creating all of it. We were then off to assemble our bikes and I realized that I had a flat tire….bumma…but have spare, can ride, no worries. Off to bed to hopefully get some much needed rest.
Well, not so much, but oh well, I tried.
Saturday we ate a HUGE breakfast (this was really stupid of me to do) and then began to hit the trail for our “test run.” Of course the rest of the group passed Johnelle and me. When we got to the top of the first mountain, I began to gasp for air. I mean, absolutely, positively could NOT get a breath in. Johnelle did not know what to do with me, but it definitely got her attention and she was concerned. The altitude changes plus the fact that I still had bronchitis and I was still on medications…not such a good combo. I was offered an inhaler from an unknown fellow bike rider who happened to see my dire situation, (which I declined for fear of reaction) and proceeded to have a quasi-panic attack. Of course this was because I could not breathe and it scared the you-know-what out of me. I said to myself, “Um, self, maybe this whole deal is just not your thing, ya think?” So, Johnelle, my mentor, my trainer and dearest friend suggested that we head back the 15 or so miles we had gone. I wholeheartedly agreed. I made a surprisingly quick recovery—thankfully-- and we were on our way…….down. We stopped at a Memorial Garden for children who had passed away, and, you guessed it…. I bawled.
So it was Saturday night, and the ride was Sunday. We all had dinner together as a team. We went back to the room where our bikes are being stored. I know in my heart that John is going to say something about Kailie, our honorary Angel teammate, and then either Chelsea’s mom Carla, or her uncle who was on our team, would give us a “go get ’em pep talk.” They all did. Every single one of the 30 people in the room, were so deeply touched and honored to be riding in honor and in memory of these girls. 15 year-old Chelsea has been through SO much. She relapsed last year after a 5 year remission from leukemia. Her second battle has been purely uphill. She has suffered several life-threatening infections in which she was placed on the ventilator for months at a time. She had to learn how to walk again, but she was motivated by being our honorary teammate. She wanted to walk by the time we went, and through much dedication and determination, she did just that. Absolutely inspiring and humbling to all of us. Needless to say, all thoughts that perhaps I would be a cheerleader and not do the ride, evaporated. I would do it, I would not quit, I would not miss one mile out of the 100, I would not be SAG’d forward….NO MATTER WHAT.
This was not about me, but me representing those who conquered more in their short lives than any of us will ever know. I was determined and those who know me know what that means. Get out of the way, here I come.
I did not want the Rhine's to see me crying (I was sitting on the floor underneath them so they could not see me) so I quickly made a b-line to my room. Somebody must have told Johnelle because shortly thereafter, there was a knock on my door. We shared a good cry between friends and bereaved moms, pulled ourselves together (after my profuse apologies for not being supportive of her), wiped off the mascara, and headed out for a refreshment restocking. That would be Gatorade and h20.
Off to sleep, again, not so much, but I tried.
The ride began at 6:00 a.m. Sunday morning. It was not long into the race when we began seeing several people who were severely and critically injured. Some of them had to be airlifted out of there. There were head injuries, head on collisions, heart issues, and I soon began to wonder what in the heck I was doing risking life and limb in this endeavor. Most of the team had passed Johnelle and me, leaving us in their dust when we had a mandatory 45 minute stop because there was a woman with a critical head injury and they were having a hard time getting the helicopter in there to get her out. I pulled over to the side of the road as we were asked to do, and I laid my head down on my handle bars. Others around me chatted, concerned about the delay, but I blocked all of that out and began to ask Jesus for her healing. Here this woman who was supporting the Leukemia and Lymphoma Society’s Team in Training (a wonderful cause by the way) and now she was in trouble. I don’t know how long Johnelle and I prayed because I lost sense of time. We were probably 100 feet from where the accident took place, and it was a chilling experience. As I rode my bike right through the accident area, I began feeling sick to my stomach at the blood and other things I saw. I could not shake those images for the next 80 miles and that woman remains in my prayers to this day.
It was difficult to fully enjoy the scenery while trying to stay on the road because the no-guard railed, rocky drop offs, were, oh, 150 feet give or take. There were cars whipping past you because for 95f the ride, the roads are not blocked off. Of course there are other bike riders who do not believe in going slow and “cautious” is not in their vocabulary. “Beware of these individuals, and seek ground away from them,” I began to think. The first 50 miles of terrain, however mentally challenging to get through due to all of the accidents, would be a walk in the park compared to the last 50 miles which were physically challenging beyond any comprehension. We stopped for lunch and I did a “Superman quick change” in the port-a-potty. Ah, layers shed, food tank filled, and I was a new woman….life is good. I knew the dreaded and never-ending “Spooner Junction,” would come soon. Therefore, I began my silent prayers. Johnelle asked if we wanted John to SAG us forward and I quickly said, “Absolutely NOT, we are doing every single mile of this thing. That was the answer she wanted to hear. Shortly after we began Spooner I thought, “This is not so bad. “ Ignorance is bliss people. It is the longest climb known to mankind …or at least it felt like it. There was a teenager who with very little effort was making his way up the mountain and saying to us, “your almost there!” “This is the worst part of it!” “You can do it!” We saw only his tail-end as he sped past us. Somehow, we encountered this young, healthy whipper-snapper on several occasions on the mountain. I began to get severely annoyed with his taunting of “You did it; worst part over; almost there; I promise this time.” I made a quick suggestion that if he was lying, he better peddle quickly away from me or I would have to hurt him. I think he feared me…we did not see him again.
It was about that time that my chain came flying off. Ah crud, this is not good. Johnelle would have to help me get it back on. We were unsuccessful, but some wonderful buff man happened to be going up the mountain a ways, and then circling back down, and then going back up to help others who were struggling either mentally, physically or had bike malfunctions. My first thought of him was: Show Off. My second thought was that he was a little angel sent straight to me in my time of need. He got the chain back on in no time…hooray.
When the pain and exhaustion was almost unbearable, I began the mind exercises.
With each peddle of that bike, I would say the name of one of the kids fighting this disease or another life-threatening disease, or who had gained the ultimate prize and was rewarded the gift of eternal life it Heaven.
“Alexandria” (pedal) “Kailie“ (pedal) “Matt” (pedal) ”Alex” (pedal) ”Chelsea” (pedal) “Jessica” (pedal) “Sarah” (pedal) “Cody” (pedal) “Meghan” (pedal) “Gina” (pedal) “Julianna” (pedal) “Jacob” (pedal) “Mackenzie” (pedal) ”Andy” (pedal) “Gooch” (pedal) “Jacob” (pedal) “Benjamin” (pedal). It was my little version of “The Little Engine Who Could” and “I think I can, I think I can.”
And the list of children unfortunately went on and on. I would visualize each of their precious faces in my head. The picture of Kailie standing next to the Lake two years prior was ingrained in my head.
I then focused on my yellow Lance Armstrong bracelet and the words embossed on them, “LIVE STRONG.” I wondered if I might “die strong” too. Horrible thoughts ran through my head, Alexandria died on a Sunday, Kailie died on a Sunday. Today was Sunday.
To shake those thoughts from my head I began to resort back to my “Dory Days” when I would say to myself, just to get through the day, “Keep on swimming, Keep on swimming.” Now it was “Keep on Spinning, Keep on Spinning.” I practiced positive self-talk. “You can do it; you CAN do it. Don’t give up; don’t give in.” I was my own personal cheerleader. I pictured Alexandria on my shoulder, pink angel wings flapping madly helping me through the hard parts. I kept telling Alexandria in my mind, “Help your momma out baby, or momma’s coming to see you sooner than later. “ Thank goodness there was no mind readers around or I would have been committed on the spot.
I was not sure if Johnelle thought I was just completely out of my mind, but I began to make up songs to familiar tunes. Then I began to sing them out loud. Anything to pass the time away, right?
Here’s just a sampling of one as I contemplated whether to walk a while up the mountain:
“These cleats ain’t made for walkin’
So what am I supposed to do?
These cleats ain’t made for walkin’
And John has my flip-flops too.”
And of course the melody that follows.
This was kinda an inside joke as John spent the majority of the day with the “professionals” and left the amateurs. With him, was my much needed allergy medicine, more water and Gatorade (I had completely run out and had to borrow some from Johnelle who was also dangerously low) and my flip-flops which would have enabled me to walk instead of ride for a short bit. It is nearly impossible to walk any distances with bike cleats. I realize John is not around for a reason, I was not meant to walk.
There were tempting SAG STOPS every couple of miles but we declined the offers and before long we realized that we had crested the top of Spooner….We had conquered it !!!
Climbing for miles and miles and peaking at an altitude of 7044 feet above sea level, we had done it. And we all know, what goes up, must come down. We realize it is mile 88 and the rest is almost all DOWN HILL…..two of the most beautiful words. Praise the Lord!!!!
And down I went at speeds exceeding (even though I was braking frequently) 40 mph. Yes, 40 mph. and nothing but pure Nevada air between me and whatever I came in contact with. Bugs, cars, trees, pot-holes, dead animals, barricades, road blocks were some of the things that came to mind and several became a reality. Of course, things began to whirl about in my mind like “what if my brakes go out?” and “what if I lose control of my bike?” Remember there are winds coming off the lake, so then you have cross winds. So, I begin praying again that my God and my flock of angels will protect me.
The sites were so amazing that I felt this was one of those places that most resembles Heaven. There were warm temps where we were riding, yet snow-capped mountains in the distance. The color of blue of Lake Tahoe was gorgeous. Riding past bubbling brooks and the rushing water of the rivers, however difficult to fully appreciate, were still noticed. Lord, please don’t let me die amidst all this beauty.
We went through the tunnel and around the mountain, and there it was. My eyes had never seen such a glorious sight…..Was it a desert mirage? No it was….none other than THE Harvey Hotel. My mind and body recognize that there, within that parking lot, stands the most wonderful thing I could ask for…..THE FINISH LINE!!!! Tears of joy begin to well up in my eyes; the end is in sight….PRAISE THE LORD!!!! We had gotten a call on Johnelle’s cell phone from John stating that the whole team was waiting for us at the end. Of course, they did not get caught up in all of the misfortunes that we did, and therefore they had showered, had a meal, probably gone for a swim and read a book by the time we rolled in. No worries. We had arrived alive, and I cannot explain the feelings that resided within me. We approached the finish line, which of all things was uphill (just one more little one to remember the ride by). I said to my dear friend, we MUST cross the finish line together. Side by side, Johnelle and I did just that. Just as our girls did…..they crossed the finish line of this thing called life, to join their Heavenly Father for all of eternity. Our team was there, cheering us on and high-fiving us as we pedaled those last few feet. Many of the Team in Training from St. Louis cheered us on as well. The feeling I had…indescribable, knowing my sweet Sissy girl was in Heaven watching and protecting me throughout the day…..priceless.
I knew how difficult this journey had been on Johnelle. How desperately she wished that Kailie was standing there at the Finish Line in body instead of spirit. She had feared this moment I know. We dismounted our bikes and I hugged her with all the might left in my very weak, stinky body. I cried out, “She’s here; she’s here; I can feel her.” I could feel the presence of Kailie and Alexandria with every ounce of my being. They had watched us all day, laughed hysterically at their two 37 year-old mom’s and their “quest for a cure.” And now they rejoiced and celebrated with us. We could not see them with our eyes, but we felt every bit of them with our hearts. We both shed tears and took in this brief moment in time for everything it was worth, the good, and the sad. We knew there was a party in Heaven going on with an ever-growing crowd of angels and our girls were the hostesses with quite a story to share. We thanked God that we made it and got quickly moved to pics with the team. Remember that they have the benefit of a little thing called a shower and were all in their street clothes. So, we laughed that the telling pictures revealed quite obviously who finished the race last on our team. Hey, I want you all to know that there were ALOT of people that crossed that finish line after us….darn it.
So then we have to get back on our bikes and ride a mere block. UGH!!!!! I was sore in places I did not know existed on my body and I could not fathom the thought of it. But I did it anyways. Now we have to take our bikes apart and pack them to be shipped because we are leaving early the next morning. Can you say?: “Someone throw that darn thing in a box and be done with it or even the Lake for that matter.” At that point all I wanted was to be clean. Chris, our team coach, offered to disassemble it for me and I quickly accepted. I helped a little bit, but not much since I was still on a natural mental high from my accomplishment and a most uncomfortable physical low.
I retreated back to my room where I proceed to take the longest shower known to man. I thought for sure I would get a call from the hotel manager telling me I was draining the hot water tanks. I then quickly make a phone call to Grant. He was at home with the kids and I was very sad that he was not able to be there to cheer me on or to see me cross the finish line. I had spoken to him briefly that morning after the second bad accident when I told him he should begin praying for my safety. I am sure he was extremely worried, even more so than he was before. I was crying so hard while telling him “I did it.” “I did it for Kailie, for Alexandria, for Chelsea, for each and every one of those precious children affected by cancer. For every drop of chemo, for every rad of radiation, for every poke in their arm, for every spinal tap, for every fever, for every infection, for every lost hair, for the isolation away from friends and family, for every bit of fear, for every ounce of courage, for each and every thing that our daughters had to endure….we did it for them.”
I have not heard the exact dollar amount that was raised with 3500 riders, but I want to thank anyone who contributed even one single dollar to the cause. Our efforts WILL make a difference. Cures must be found so that more and more children do not have to suffer like our circle of friends. Whether they are in the survivors category or those eternally healed, their lives have been touched and forever altered by childhood cancer.
If you are reading this and you have helped further the cause, I thank you from the bottom of my heart. For those who have not, perhaps this note will inspire (not scare) you to run in a marathon, participate in “America’s Most Beautiful Bike Ride,” volunteer for the Leukemia and Lymphoma Society, donate to local foundation’s such as Kares 4 Kailie, Friends of Kids with Cancer, and of course the Alexandria’s Angels Foundation. We all have similar goals in mind: money for research, helping kids and families along the way in their cancer battle, and ultimately, CURES so that none of these organizations need to exist.
I was MORE than happy to support my dear friends and Kailie’s Krew. Although there were concerns at times, in the end, it was all wonderfully justified and worth every drop of blood, sweat and tears.
Okay, so I’ll admit, it is NO “Tour De France” in which bike riders endure more than I care to think about for 3 long weeks. However, in my mind, my accomplishment is something I am proud of. It was a little tiny way that I can give back. It is one of the ways to make good come of a bad situation. Helping others along the path in which you were chosen to take….it seems so simple.
I am blessed and therefore want to be a blessing to others.
And this update has gotten outta control long, so I will continue tomorrow with some interesting and exciting news.
God Bless You All-
Alison
Thursday, July 6, 2006 6:53 PM CDT
Some dear friends of ours from here in St. Louis, have a son who suffers from Fanconi Anemia. His name is Matthew Pearl, and he and his family are in Minnesota awaiting a life-saving bone marrow transplant that is not a perfect match. He and his sister both have Fanconi Anemia, a fatal, genetic disease, unless intervention, like a transplant, is performed.
Matt has a simple wish……Matt wants to get to 500,000 hits on their site before his transplant on July 13, and wants everyone to mention how they are "connected" to him. The website “hits” was almost at 416,000 today at 6:00 pm.
So many people from all over the country are participating in this endeavor that the number increases thousands a day since they started just a few days ago.
His sister Alex has already had a transplant, so this is the second one this family will have to endure.
Please take the time to send Matthew a note via the kids’ website at :
www.alexandmatt.com
and wish him good luck, etc., the state you live in, and tell him “Alexandria’s Angels” sent you. Feel free to pass this on to everyone in your address book.
I cannot thank you enough for your participation in this effort. Our family knows ALL too well how hard it is to endure long periods of isolation in the hospital, and a little gesture such as this would really boost their hopes and spirits.
I really cannot imagine what they are going through at this time, knowing that Alex literally "died" five times during her transplant, suffered a stroke, and was down to 29 lbs. She made it, but still has a 1000% greater chance than you or I of getting cancer or leukemia! This family could use all of our support.
Okay, it was gut-wrenching to read Grant’s journal entry from last week. I cried and cried as I read it. I know it was hard for him to write and I applaud his decision to share it with you all. He wrote it back in February, but was not satisfied with the end result, so he was not going to put it on the website even though I encouraged him to do so. You just never know who may read our words, and our goal is to help anyone we can out there who is going through the grief process. I support his decision 110 % , to not hide his pain over the last three years. He will cry when he needs or wants to cry no matter who is around. He is not afraid of the stares or that people may be uncomfortable around people who cry, and even more so when a man cries. Real men do wear pink and they are not afraid to cry!!!!
It is not a sign of weakness, but rather strength in
character .…the ability to be accepting of the true feelings in which you are experiencing. I can honestly tell you that if Grant had felt the need to hide his pain through the loss of Alexandria, we would probably have some big issues right now. It is because he always allowed me, and others, to see his pain that we have remained so completely connected through this challenge. If he hid it deep inside and did not include me in on his grief, or worse, denied it himself, I cannot imagine how this story would have played out. So I thank God frequently, that we have grieved similarly and we have let each other into our valleys of grief.
Please also keep my friend Khalita in your prayers as she is facing some physical challenges associated with her aplastic anemia. She has been in the hospital for two weeks now suffering from some very serious infections and bone marrow issues.
Stay tuned for the upcoming journal entries entitled:
Tahoe Tales, and I’ll Praise the God who Gives and Takes Away. It is a pretty amazing story.
In Him-
Alison
Wednesday, June 28, 2006 10:05 PM CDT
*** I know that Alison is working on the post-Tahoe journal entry; stay tuned for the details of that amazing ride! ***
My Dearest Alexandria,
Three winters have passed since you left us to join our Heavenly Father and my heart is still breaking.
I know you will indulge a melancholy father with one little request, though. Now close your eyes Sissy and imagine for a moment. A hospital room. An all-night vigil. Outside snow is falling filling the streets silently; inside your mother’s tears fall silently. The lights are dim and the vaguely painful sounds and smells in your hospital room, at your deathbed render the room surreal. My left hand underneath and my right hand on top, I hold your sweet, warm hand. With head bowed in my mind’s eye, I hear a piano, a violin, and a cello playing softly and slowly and sadly. Along with the music, I hear the words:
“Father, hear my prayer.
I need the perfect words.
Words that she will hear,
and know they’re straight from You.
I don’t know what to say.
I only know it hurts.
To see my little girl,
Slowly fade away.
So, maybe this time,
I’ll speak the words of life
with Your fire in my eyes.
But that old familiar fear
is tearing at my words.
What am I so afraid of?
‘Cause here I go again,
Talkin’ ‘bout the rain
And mullin’ over things
that don’t live past today.
And as I dance around the truth,
time is not her friend
this might be my last chance…
this could be my last chance…
this will be my last chance
to tell her that I love her.
I love her; I love her.”
And I do. Of course, the words that I now hear with my eyes closed remembering your face are from a song (Casting Crowns) that was written after the Shepard led his lamb to Heaven, but these words were certainly on my heart that day and so many days since.
If only the right words, in the right prayer, the “words of life,” could have helped you to regain your health and made you better. That’s what we use in this world: “words.” We write about the hurt, and the dreams, and the good times and the bad. We talk to people we know well and some that we have just met about the little girl that we used to hold in our arms, and watch laugh and play and sleep. These “words” do help and they do heal our wounded hearts, but they cannot bring back health and they will not bring back the “happiness” that once sat in the throne of my heart. So, I take this heavy heart and write a little about those last few days now so vivid in my mind in the hope that those memories, as painful as they are, will not fade.
I remember those last few days so well. I know you didn’t feel very good. Your legs were starting to hurt when you moved and you didn’t get out of bed much. Your appetite started to fade. We did our best to make you comfortable not knowing which day would be your last with us. You had an appointment at the clinic on Friday, February the14th at the Hematology/Oncology Clinic at Cardinal Glennon Children’s Hospital. They were going to “tank you up” with platelets and red blood cells to get you through the weekend. On Monday, we were supposed to bring you back in to try some other drugs on your leukemia. We knew that we could not save you, but we thought we might be able to keep you with us a little longer. We were quickly reminded that cancer laughs at plans and God’s will and the will of Men are never necessarily the same.
As I said, I remember that Friday so well. We had to get to your appointment, but you didn’t feel like going. Always faithful though, you let me gently pick you up in my arms, my left arm carefully cradling your shoulders and my right behind your knees. I walked with you from the bedroom on the first floor, out the front door, and eased you into the backseat of the Camry. After spending the better part of the day in the clinic getting your transfusions, we all agreed it was best to begin the medicine that very day rather than wait until Monday. We took you up to one of the two bone marrow transplant units and the nurses began the pre-medication process.
After the medications designed to make the chemo drugs tolerable for you were given, but before they started the chemo, your heart rate suddenly plummeted. I knew that the “Do Not Attempt Resuscitation” order that we signed while you were on hospice had lapsed; I also knew that a whole gang of nurses and doctors would probably rush into the room and ask your mother and me if they should try to bring you back from this episode. You resolved the problem for us when somehow your heart rate stabilized. The doctors said that you probably had some kind of cerebral vascular event, that you had hemorrhaged into your brain. From that time on, the only thing that you could say to us was: “wa-wa.” You were asking for “water.” With all the steroids that you were on recently, you started to be hyperglycemic and your thirst was nearly insatiable. I would dip a little green sponge on the end of a plastic tube into water and try to give you just a little bit. I was afraid that you might not be able to swallow too well, though. Your mother spent most of her time in bed with you singing different songs and whispering in your ear that it was okay to stop fighting; go to Jesus. One song she sang to you then that she sang to you as a baby went like this:
“Sleep baby, sleep
please, don’t you weep;
Mommy loves you;
You know it’s true;
Yes I, yes I do.”
She sang this song in your ear so many times. I wonder if you knew it was your mother or if you thought it was an Angel singing to you.
Your spirit sailed away to Heaven at 10:20 PM February 16, 2003. Your spirit left the earth in the most peaceful possible way. Mommy and Daddy were holding your hands and you had “Moonbeam” the magical unicorn on your hands, too.
After your spirit flew, we both held you and talked to you and gave you some new, clean clothes to wear. We stayed with you for hours, and then we let you go and slowly drove home over the cold, snowy roads.
Three years have passed. How many times have I thought about you? There are about 94,608,000 seconds, give or take a few thousand, in three years and I have thought about you at least twice as many times as there are seconds.
And so, for now, I hold your little sister’s hand because it reminds me of holding yours. This weekend, after church, as I lay on the couch watching some show on TV, I asked little 6 ½ year old Addison to come over and give me a big hug. She came over to hug me and I pulled her right on top of me and started to rub her back ever so gently with just the tips of my fingers. Within seconds, she fell fast asleep. What an amazing gift; there she was as close to me as she could be. She chose me for a bed for a little nap! After our little nap, Addison’s Mom said that Addison must have really been tired. Puzzled, I asked her why and she replied that the loud snoring (from her dozing Daddy) so close to her head must have sounded like a freight train.
Well, there is so much more I could say, but I will close with this: The shadow of your disease has brought light to so many and especially to me. So, I will keep searching for the “words of life” and stoking the “fire” in my eyes. I will continue to cherish that last time that I carried you, that I held you, that I was with you. I will close my eyes and dream of the young woman, on graduation day or the beautiful bride that might have been carried over the threshold of her first home by a handsome, kind, gentle, and understanding husband. And I will continue to search for the Man who carried you last… to Heaven.
Until we meet again, I am
Your loving Daddy
Tuesday, June 6, 2006 11:05 PM CDT
BIKED IT
LIKED IT
-TAHOE 2006-
...........OR, SHOULD I SAY.........
BIKED IT
SURVIVED IT
-TAHOE 2006-
The weekend was full of so many incredible moments and things I want and need to share, so come back and visit soon and do not forget to bring your tissue.
God loves you all and so do I-
Alison
Sunday, June 4, 2006 11:20 PM CDT
It's offical: Alison made the entire 100 Miles of the Century Ride at Lake Tahoe! We are so proud of her amazing accomplishment and we are anxious to have her back home to fill us in on the details. More from the little rider that could soon....
Grant
Friday, June 2, 2006 0:15 AM CDT
I am not sure if you all remember or not, but this is it, this is the weekend.....the Century Ride at Lake Tahoe.
100 miles in ONE DAY....this Sunday.
I am leaving with the rest of Kailie's Krew tomorrow bright and early. I am very nervous about riding for several reasons. 1) I have not gotten in NEARLY the training time I need to for such a major event.....the weather did NOT cooperate for a long while and we were unable (or unwilling) to ride in 15 degrees and then there were many unexpected things that came up that kept me from training more 2) I have had bronchitis and laryngitis since last week. I just got my voice back fully yesterday. So.....as you can imagine I am fearful that my body may not be able to pull of this GIGANDA Marathon. I am going to do the 25 mile test run on Saturday and see how I feel and let that be my determining factor. Grant was going to come to cheer me on, but that did not work out. So, John Rhines will just have to be my cheerleader. That's okay, his deep faith and wonderful praying abilities will do just fine.
I really want to do this..... for Kailie, for Alexandria, for Meghan, for Cody, for Benjamin, for Chelsea...for all the kids who have fought the battle or still are fighting. At the same time, I don't want to kill myself in the
process !!!!!
Please keep in your prayers the Rhines family as this will surely be a difficult trip to make. I know it will be so hard for Johnelle to not have Kailie physically waiting for her at the finish line.....but this time she will have a guardian angel to help her out the whole race. Two years ago Kailie got very ill at the end of the Tahoe weekend and they came home and went straight to the hospital. Kailie went home to be with Jesus weeks after that in August.
I am not worried about whether or not I ride nearly as much as I am worried about my dear friend Johnelle and how emotionally difficult it will be on her.
We shall see how things go physically for me but just wanted to ask for prayers....We are certainly going to need them !!!!
I will write when I get home (or from the hospital)
on Monday and let you know.
Well, it is very late (as you can see from the time on this entry). I am off to bed as I need to get a couple of hours of sleep before we go.
In Him-
Alison
Thursday, May 18, 2006 11:21 PM CDT
I Wish I Could Tell You
Grant-
I wish I could explain to you the pain that I am feeling
I know you are feeling it too.
The accomplishments you have made,
The sacrifice
The amazing dedication
I wish I could tell you about this hurt….. this longing like no other
She should have been there tonight…..
Once again, there was one person missing
Table for 5,
one less seat filled in the car,
One less person at our table
But she was in all of our hearts
She was cheering you on tonight
Even though you could not see her
Did you FEEL her?
She is SO proud of you, so honored to call you Daddy
I wish I could tell you
that my heart ached so bad for you today,
And my heart hurt for me, for our other children
I wish that you did not have to cross that threshold
without the benefit of seeing your daughters face,
her beautiful, big blue eyes
I wish that you were in audience with me as she was graduating 5th grade, or 6th, or high school
I wish that you were walking her down the aisle and giving her away
Instead, three years ago, you held her,
you carried her in your loving arms to the threshold of her next Home
I wish that we were witnessing the birth of her first child
A baby girl with a name that started with “A”
I wish, oh how I wish.
I long, oh how I long, that this day would be different
When you started this endeavor, it was for you, for our children
After her diagnosis, you put all the shock and sadness aside.
You went to the medical library of Children’s Hospital the night she was diagnosed
And stayed until the wee hours of the morning
To learn every single thing you could about the news the doctors had delivered that evening
You wanted to fix it,
as all Daddy’s should,
make it right,
make it better
Tonight., as I drove the path that Alexandria and I took so many times before…..
Times when I told her to “hold on, that it would be okay”
that we would get her to the hospital quickly
“Take deep breaths honey, Mommy is here”
The times Daddy would hold her hand from “front-seat, to back-seat
I have never witnessed such love of a Father and Daughter in my life
Whether for yet another round of chemo, or a life-threatening infection
She held tight, she trusted in me, trusted in Daddy,
trusted in Him, and all was well in the world
What happens when you are unable to protect your babies?
You try. You do everything that is humanly possible, yet you fail,
or it is God’s plan rather than your’s?
I believe, I HAVE to believe it is God’s great and awesome plan.
Granty….
“Did you see the Angels beside you tonight?”
I saw them.
They gathered one by one.
Alexandria
Kailie
Sarah
Meghan
Jacob
Andy
Gina
Cody
Benjamin
The list, as you know is endless
They carried you across the platform.
(All those angel wings are so strong)
Did you see them?
Did you feel them?
I did……..we all did.
Hunter, Hayden, Addison…..we all saw them, we all felt their presence.
You walked across the great unknown of what your future holds…..
You walked across for you, for Alexandria, for your family, for Sarah,
who would have graduated in a few weeks from High School
You helped create Alexandria,
You gave her the gift of life, and
You gave her the gift of leaving this world to go to a better place.
You washed her hands before she left this world.
We held her hands
We held her feet
We held onto her heart
Did you see the sunset on the way home tonight?
What a gift !!!!!!!!!
It was a gift STRAIGHT from Alexandria and God.
A gentle reminder THEY were there with us all
We went to her grave tonight. The sun had set, and so had our hearts, but we remembered her.
Grant,
You have always been, and will always be, “our “Daddy-O”
We said on the way there tonight, “DADDY-O, LETS GO !!!!!!!!!!!!!”
When we passed Children’s Hospital where Alexandria got her treatment for years.
When we passed Cardinal Glennon where Alexandria and Kailie gained the ultimate reward of being
with Him…….we all cried. We all were saddened greatly by the loss we all have endured
But yet,
I am thankful…….
I feel blessed……..
For as much as we miss her, we would not have missed out on “the dance,”
the opportunity of being her “Mommy and Daddy”………..never…….ever……..
So, I applaud you Mr. Granty,
I thank you for having the courage and the strength to continue,
And to fight to do what your heart and mind told you to do.
Despite the odds, despite all that was against you
YOU PERSERVERED !!!!!!!!!!!!!
There is no degree,
No level that is measurable for the love that your family has for you
You are one of kind,
A diamond in the rough,
You are to be commended for your everlasting Faith and Adoration
For Him
and for a little girl named Alexandria….
Who loved you with all of her heart, with all of her soul as we all do
I love you-
-alison
Tuesday, May 16, 2006 10:23 PM CDT
Hello to All-
WOW 340,000+ How AMAZING AND AWESOME is that !!!!!!
If you were that person, number 340,000, please do share with us.
Well, it has been back to reality around here for the past several days. Grant was one of the top reps in the company he works for and the reward was an all-inclusive trip for two to Atlantis, in the Bahamas. It was just Grant, and myself, "THE Offical Bahama Mama." The kids stayed behind with MeMaw and PawPaw . There were other people that won the trip from around the country as well and some from the San Diego corporate office. I met some wonderful people and enjoyed the time we all spent together.
Grant and I began our trip with a little sign from our Sissy girl. There was the most beautiful pink-capped sunset just especially for us when we were driving to our hotel. I am sure she just wanted to remind us that she was there with us, even though the other kids were not.
Atlantis is AMAZING….and VERY expensive….like, um, Disney World expensive. We got to enjoy many things while we were there. We, (I mean ….just me, of course) made trips to the Spa, we snorkeled, went Jet Skiing, read books on the beach, took in all the sites, we wined and dined WAY too much for almost a week.
I was very apprehensive about leaving the kids. I knew they were in great hands with Grant’s parents, we just have not been away from them (both of us at the same time) since way before Alexandria passed away. I knew we desperately needed some “Alison and Grant time”, it is just so hard to leave. I prayed a great deal for God to give me peace about it. I felt like I was showing a distinct lack of faith, but I know He understands this whole Mom thing.
It took more prayer and a little bit of liquid courage, but I did get on the plane. Several times towards the end of the trip I contemplated coming home a day or two early. I thought better of it after some convincing from Grant and a little more beach time. The kids were doing great baking brownies and cakes, and I am sure enjoying grandparent time….all was well on the home front, so I needed to relax and enjoy.
Grant and I celebrated our 14th Wedding Anniversary (although we have been together for 18) while we were there. That was awesome!!! We went out for a very romantic, fancy dinner. We always recap our lives together, and thoughts quickly go to the best times and the worst times. Of course on that high-low list is always Alexandria (“high/low” is a game we play every night at the dinner table with the kids….what was your high/the best thing that happened to you today….and the low/what was the worst thing that happened to you today, and each person takes their turn…..by the way, you can find out some amazing things about your kids through this game!!!) Of course that topic of conversation was not without tears, especially with Mother’s Day around the corner (at the time), and missing the kids so much. We still had a wonderful evening. It certainly has been an eventful 18 years together with four children and all that we have been through.
While at Atlantis, we only had one “incident” and let’s just say my hubby was in A LOT of pain, bruised horribly and went to an orthopedic doctor the day we got home. (Lord knows we did not trust the docs there).
He did not even have the benefit of Rum Punch “on board” when it happened so that was bad too. Well at least the big boss got a good laugh ……Thanks Steve !!!!! Nice impression (and vivid) Grant left them all with. The sad thing was that he could have caught himself on the railing on the slick steps, and had his hands not been full with a camera and the four shells (one for each child) that he had to dive 15-20 feet down to get while he was snorkeling……ugh....darn steps…….who would have known they could be SO slick. I felt so bad for him, but we can all laugh about it now. ;)
We arrived home early last Friday and I have certainly been in a funk since then. We left the Bahamas and it was 87 degrees, got off the plane in St. Louis and it was 47 degrees and raining. YUCK !!!!!!! The temperature has not gotten much better, the rains keep coming, and I believe my mind and body are going into shock from lack of sun exposure. NEED SUNSHINE…QUICKLY !!!!! Talk about going from one extreme to the other.
We actually took the kids to Mexico for their Spring Break at the end of March. We swam with the dolphins and it had to be one of the most exciting things that ever happened to any of us. I also took the kids with my sister to Destin at the beginning of March…….so I REALLY have NO business whining.
So, I’m pretty sure that NONE of you are really feeling sorry for me… LOL.
I will try to get some picks on from our recent travels soon.
So, we have some other big things going on over here, that in due time I will fill you in on, it’s just not the right time right now. And once again peoples, as much as you all would love to see another little Haddock running around, that is not the news. (Thought I would clear that up before you even went there)
I am going to leave that one alone for now………….
Hunter, Hayden and Addison are all playing baseball and enjoying it. It is an absolute riot to watch a 6 year old play softball. She hasn’t a clue of what she is doing but certainly puts 110% effort into it. It is comical to watch the teams as they are trying to learn what in the world to do with that little ball, where to throw it and when to run. Addison has the cutest pink and black uniform and that is really what it's all about, right? Looking really cute in your uniform??? I remember vividly Alexandria’s one experience with softball….it was not so pretty. She was WAY more interested in the beautiful, yellow dandelions in the outfield than anything that was going on with the game. Another high-level of importance was the color of fingernail polish her teammates were wearing….which could have landed her in a great deal of trouble since she never watched where the ball was going (like her head) . The first time she batted she hit the ball without the tee (Yippee !!!!!!! Very proud parenting moment) She decided to take the ball, which was a grounder racing up towards first base, with her. Yep folks, she picked up the ball (which, hello, was headed the same way anyways !!!) and decided to give it a personal escort to first base. Proud parenting moment?????? YOU BETCHA !!!!! (And quite hysterical as well)
I guess this means you are caught up for now.
THANKS TO MEMAW AND PAWPAW FOR WATCHING THE KIDS SO GRANT AND I COULD GO TO ATLANTIS !!!!!! YOU GUYS ARE AWESOME !!!!!!
Happy Belated Mother’s Day to all the moms out there who have one less child to hold in their arms, but hold them in their hearts-
God Bless You all-
Alison
Friday, May 5, 2006 7:11 AM CDT
It is hard to believe it has been over a month since my last update. Funny how life gets so busy, and computer issues render it impossible to update the website, check on friends caringbridge sites, and even get/send e-mails.
If you have sent me an e-mail and have not heard back from me, I probably have not gotten it. Please feel free to re-send it....and I do so apologize.
Much has been going on here, but I will have to save that update for another day. We are doing fine and thanking God for the blessing of each day He gives us.
Just wanted to ask for you all to go to :
www.alexandmatt.com
Matt is a 9 year old boy who desperately needs a bone marrow transplant.......and soon. Right now they have not found a perfect match for him so that this can happen. They are having drives at different locations around the country....and they are free I believe. All the information is on their website.....PLEASE consider being checked......it is not even a blood draw anymore....it is SO easy and you could be saving a life !!!!!!!!!!
I will update soon, until then, God Bless you all-
Alison
Sunday, March 19, 2006 10:03 PM CST
*****Thanks to all who have visited the new website and signed in at www.alexandriasangels.com
Although the counter is not working properly and it is a work in progress with more to come soon, we are glad to have it up and running.
THANKS TO JOHN RHINES for fixing our Paypal button !!!!!
Well as always, my life proves to be eventful…..at least to me anyways. Well, here is the synopsis since I don't have time to write the whole melodramatic circumstances.
The run down ...
Hunter was having severe headaches... coming home several days a week from school after the school nurse called me, crying from pain in his head, nauseous and vomiting. Well, you know where this is going. Paranoid, crazy mom, (that would be me) tried for weeks to be patient, tried so incredibly hard to resist the temptation to run him to the pediatrician. I was strong. I waited. Until he was in so much pain that he BEGGED me to take him to the doctor and said that he thought he had a brain tumor it hurt so bad. Okay, in comes MAJOR SUPER FREAK MOMMY !!!!!!!! We were already going, if you will remember from previous entries, to go and get his stitches out from "the lighting accident." So, technically, I was justified in taking him to the doc. While we were there, I mentioned that Hunter was having these painful headaches and we discussed the possibilities...the good, the bad and the indifferent. He said that it could be a sinus infection and that sounded really good to me. I took his advice to give Sudafed during the day and Motrin for the pain as needed. And then I prayed. Lord, I cannot do this again...please Lord, I am begging. Not exactly the faith-filled response He was looking for I am sure, but it was what it was, and I knew He understood my anxiety. Hunter's frequency, duration and severity of the headaches all increased. In comes: CRAZY, PSYCHO, THINKING THE WORST, PRAYING FOR THE BEST, WORRYING, ANXIETY-RIDDEN MOM.
I called the doctor and said that we needed to go to Plan B. That would be the ct scan. We went to get the ct scan and of course the obligatory questions were asked previous surgeries etc. So I go over in my mind the whole BMT donor thing and my heart breaks yet again. Then the technician asks about it and I offer a response, knowing that Hunter was consumed by worry and anxiety over getting the i.v. for contrast. There is no time for that as she quickly moves into her mode and before he has time to think the i.v. is in. I stand. I pace. I feel like vomiting myself. "BE STRONG"...Alexandria's words to me. They ring clear in my head and I picture them written above the picture she drew of herself when she was going through chemo. If she can be strong, so can I. Watching Hunter's brain show up on the computer screen, I hold back everything in me that wants to scream and cry simultaneously. In a few short minutes (which seemed much longer) he was done. Now the waiting begins. I take Hunter back to school after a HUGE meal from IHOP since he was NPO for 12 hours. The nurse from school calls me a few hours later. Hunter is in severe pain, and is vomiting. UGH…in comes FRANTIC, BESIDE HERSELF, PACING, BORDERLINE HYSTERICAL, FLAT OUT CRAZED MOM THAT WILL NOT BE CONSOLED. I called Grant and told him he MUST call our pediatrician and ask him for the results of the ct scan. He knows our history and will surely understand my agony. He is a great doc and called us back about an hour later.
Grant was walking into our home office and said, "Okay, who exactly should we see for this?" I said, "Grant, what is it?" Grant said to the pediatrician, "okay, Dr. Hanson." I say the words louder in a total panic-stricken voice, "Grant what is it?" "Grant tell me, my voice quivering... "Dr. Hanson?", I say in total disbelief and shock.
Well, Dr. Hanson is one of the pediatric oncologists at St. John's, where many of our friends children are being/have been treated for cancer. I COMPLETELY FREAK OUT at this point. Grant looks at me as if to say..."what is it?" He apologizes to the doctor for me and looks at me as if I am crazy. He did not put it all together. He says, "Dr. Hanson, the ENT, doctor...he gets it I get it...
Needless to say, I fell to my knees in prayer...a prayer of thanks that things could have been so much worse, and thankful they were not.
Well, Hunter has had a horrible sinus infection that has required two rounds of very strong antibiotics, thus far. He has had many a severe headaches since then and we will go see the ENT (Dr. Hanson) in early April. I will take a sinus infection over the alternatives any day.
Another sad thing is that we missed the 2nd Angelversary of Sarah Johnson and balloon launch because Hunter had come home in pain that afternoon, and could not be left alone.
I know Evelyn and Gregg and Adri understood, and that was important to me, but I still wanted to be there nonetheless.
Well, I will conclude here and will update soon. Much more to write about but enough drama for one night.
Thanks for checking in, thanks for caring. We are still in awe of the support we received at Alexandria's 3rd year Angelversary. We were even treated to dinner with pizza and ice cream by our dear neighbors, the Andrasko's. We are forever grateful to those who continue to reach out to us.
Grace and Peace to Each of You-
Alison
Please help the Alexandria's Angels Foundation by making a secure online donation today
Wednesday, March 8, 2006 4:26 PM CST
FINALLY...........
I do so apologize for not updating sooner and did not mean to keep you hanging. That was quite the cliff hanger I do admit.
There are two bits of information to share….neither of which involve a pregnancy for all of those who are interested. I had many an e-mail interested in knowing if there was going to be an addition to the Haddock clan. I am not sure yet about that….the jury is still out for Grant and I both……depends on the day. Although, Grant had the interesting thought after seeing Cheaper by the Dozen (2) in January, that maybe it would be nice to have a “team” too. I then thought it may be a good idea to sleep in Addison’s room……...indefinitely. No really, I appreciate your concern and thank you for your inquiries….however, the exciting news to share is that after months of work, we have a new website. The caringbridge website (and my journaling) will remain open and we are eternally grateful for the many blessings it has bestowed upon this family. However, this new website, specifically for the Alexandria’s Angels Foundation, allows us to do a bit more. The new website is :
www.alexandriasangels.com
Please visit the new site, pass it along to friends and family, and feel free to leave a message in the new guestbook. In order to read other people’s guestbook entries you have to hit “Regular View,” (unlike caringbridge where you can see all of the guestbook at once).
The second bit of wonderful news is that the foundation is being featured in a new book called, Raising Kids in St. Louis. It is the second in a series. The first book is entitled, Raising Babies in St. Louis.
The book can be purchased soon by going to :
www.raisingbabies.net
The book will also be available and many retailers all over the St. Louis.
The official book launch was this Monday night and Grant and I were so humbled to be honored in such a way. Our daughter’s legacy will live on and on through the generosity of Anne Wells, the publisher, who contacted me over a year and a half ago. She had heard about our foundation and asked if we would be interested in participating. We were elated as we knew this could mean an opportunity to help more families in the St. Louis area affected by childhood cancer.
It is really weird to see your family’s picture in a book and to read the two pages of the story, written about Alexandria’s life. It is like you are reading a novel about someone else and then all of the sudden, the tears flow as it hits you. You remember these things so vividly because they happened to you, to your daughter. It was sad to think of why were in the book to begin with…..because we lost our daughter to cancer. It saddens me that an organization such as ours must exist. However, I don’t think childhood cancer will be completely eradicated any time soon, therefore, I suppose it is our job to help those families who need us until that time comes.
Let me know your thoughts and suggestions for the new webpage. It is a work in progress and new things will be added in the very near future, we just wanted to get the word out now.
Thanks for continuing to follow our long journey.....
In Him-
Alison
Wednesday, February 22, 2006 9:07 PM CST
First of all, I wanted everyone to keep a dear friend in their prayers as she recovers from surgery for uterine cancer. She is a wonderful, selfless person who has helped many of us traveling on this difficult road of childhood illnesses.
I would also like everyone to keep the Johnson family in their prayers as they endure their daughter, Sarah’s, second “Angelversary.” Sarah was our babysitter, and their family is near and dear to my entire family’s heart. Having been on the roller coaster for the past few weeks myself, I know what they are in for, and my heart aches for what they will have to experience yet again, and for the rest of their lives. Please visit their website and let them know you are thinking about them.
www.caringbridge.org/mo/sarahsmiles
We survived this past week due in large part from all the prayers and support that we have received from so many wonderful people, (probably YOU, if you are reading this.) The phone calls, e-mails, guestbook entries, cards, letters, home visits, have been an overwhelming encouragement for us. I honestly do not know how we would have made it through the last three, no five years, without all the love, compassion and concern that our family has received. It is really hard to put it into words. The day in which we said our last goodbyes to our daughter at her funeral, held three years ago today, is always cause for reflection. It is interesting to see who reaches out to us in this time period and who does not. Once again, Grant and I realize who our real friends truly are.
I know that God has held me during this temporary separation from my daughter. I know that no matter what comes my way, my faith in Him will NOT waiver. We have to Trust Him no matter what the outcome of our prayers or how they were answered. Thy will be done, not our will. As hard as that is sometimes, I know that is what is best for me, for any one who believes. God will use ALL of us, the broken, the hurting, the weak, the
and everyone in between to further His kingdom.
We have some exciting news that we will be sharing soon so check back in the near future. I apologize for not responding to all the wonderful e-mails I have received lately. I am dreadfully behind as my server/e-mail has been having major issues for weeks.
For each thorn, there is a rosebud…
For each twilight- a dawn…
For each trial – the strength to carry on,
For each stormcloud –a rainbow…
For each shadow – the sun …
For each parting – sweet memories
When sorrow is done.
-Ralph Waldo Emerson
God’s Blessings to you all- Alison
Tuesday, February 14, 2006 9:35 PM CST
There are feelings, emotions, things I cannot even begin to put into words, that run through me this week. This day, February 14, 2003, marks the beginning of the end of our sweet Sissy girl’s life on this earth. It is as if it happened five minutes ago. We were at the BMT unit of Cardinal Glennon Hospital here in St. Louis. Alexandria had relapsed and we were full of hope with the opportunity to start a new experimental drug that Dr. Kurtzberg from Duke had suggested to our new doctor, who was at least willing to try it. She had been premedicated for anti-nausea purposes. We had been told earlier that day that she had decreased air flow in one of her lungs. Her heart rate dropped suddenly from 130 to 30, and Grant screamed out of nowhere, “they are going to code her, they are going to come running in here any second Alison !!!” He was in shock. I was in shock. Without hesitation, without any single conscious thought, and as if I were having an out of body experience, I immediately jumped to Alexandria’s bedside, laid my head next to hers and whispered softly, yet confidently, in her ear that she need not fight any longer, she could go to be with Jesus.” I told her that Mommy and Daddy and her brother’s and sister would be okay, that she was free to fly with the angels. I begged her to run to Jesus, thinking that it would be a quick and painless transition from this world to the next. A nurse ran in and said, “you are doing so good mom, you are doing exactly what you need to do.” “Keep talking to her, tell her it is okay, you are doing so good mom.” I shed not one tear, not wanting to scare Alexandria or make her want to stay any longer than she should. I tell you, this was God, our Lord and Savior, speaking straight through me. I would never have the strength to do that. Never. As long as I have been alive, I have never had an experience like that, and I don’t believe I ever will again. A peace that surpassed ANY and ALL understanding.
Something in my heart told me that she would not leave us that night, not on Valentine’s Day, despite the doctor telling us to call all of our family and have them come say their “goodbye’s.” Someone told me that she would hang on. The events of the next few days are heart-breaking. Some are vivid, some are hazy. I remember telling Grant and my sister Michelle, (who did not leave our sides that weekend and I will be eternally grateful for….she was my rock that weekend) to not let me fall asleep. I simply REFUSED to be asleep when Alexandria took her last breath on this earth. I needed that. I needed to be awake, alert, aware of everything. I did not move from her side that weekend except to go to the bathroom which was in her room, and to update the website quickly on the nurse’s computer right outside her hospital room. I was there the second she came in to this world, and I would see her out. I will never forget when Nancy brought in Moonbeam that Saturday. I will never forget friends gathered around her that Friday night, as I held her and rocked her in my arms, singing “Amazing Grace” a song I still cannot make it through without bawling uncontrollably. Three long years later and it is still surreal. I talked to a friend last night who lost their son thirteen years ago. He said it is still like a nightmare he cannot wake up from. Thirteen years. It is proof that this pain will never cease, I will just continue to learn how to deal with it.
Last week was “Disability Awareness Week” at the kids’ school. Hayden’s 3rd grade class was performing in an assembly. He came to me every night the week before saying that every time he practices the song with his grade, he has to really try hard not to cry. He said the song reminded him of Alexandria, and how kids used to make fun of her or stare at her when she lost her hair. Hayden Pierson Haddock, this precious 9 and a half (coinsidence?) year old child is one of the most compassionate kids, with a heart of gold, that you will ever meet. I will share the song which they also did in sign language with you…….
Don’t Laugh At Me
I’m a little boy with glasses
The one they call a geek
A little girl who never smiles
Cause I have braces on my teeth.
And I know how it feels to cry myself to sleep
Don’t laugh at me, don’t call me names
Don’t get your pleasure from my pain
In God’s eyes we’re all the same
Some day we’ll all have perfect wings
Don’t laugh at me.
I’m the beggar on the corner
You pass me on the streets
And don’t think I don’t notice
That our eyes never meet
Don’t laugh at me
Don’t call me names
Don’t get your pleasure from my pain
In God’s eyes we’re all the same
SOME DAY WE’LL ALL HAVE PERFECT WINGS, DON’T LAUGH AT ME !!!!!!!!
I kept telling myself over and over and over, “my child needs me, be strong and that I COULD NOT cry. My heart raced on performance day as I sat in the audience amidst all the other parents and teachers. The lights came on the stage, and they were shining directly in Hayden’s eyes. I do not need to tell you that I then felt completely at ease to release the tears. He had no clue….I am the queen of Kleenex and all tears were gone by the time I saw him and congratulated him on making it through the song. He never knew that I didn’t…….
Thanks to all who remembered that this day, until burial day is very painful. I sincerely appreciate your thoughtfulness and concern for us.
HAPPY VALENTIME'S (Addison's pronunciation) to the man I have spent the last 18 years with and love dearly...my rock, my soul mate, the only person (besides God) who loved Alexandria as much as me....my loving husband, wonderful father of our children, Grant. I love you more than words can say !!!!
Blessings and Happy Valentines to you all-
Alison
Tuesday, February 14, 2006 9:35 PM CST
There are feelings, emotions, things I cannot even begin to put into words, that run through me this week. This day, February 14, 2003, marks the beginning of the end of our sweet Sissy girl’s life on this earth. It is as if it happened five minutes ago. We were at the BMT unit of Cardinal Glennon Hospital here in St. Louis. Alexandria had relapsed and we were full of hope with the opportunity to start a new experimental drug that Dr. Kurtzberg from Duke had suggested to our new doctor, who was at least willing to try it. She had been premedicated for anti-nausea purposes. We had been told earlier that day that she had decreased air flow in one of her lungs. Her heart rate dropped suddenly from 130 to 30, and Grant screamed out of nowhere, “they are going to code her, they are going to come running in here any second Alison !!!” He was in shock. I was in shock. Without hesitation, without any single conscious thought, and as if I were having an out of body experience, I immediately jumped to Alexandria’s bedside, laid my head next to hers and whispered softly, yet confidently, in her ear that she need not fight any longer, she could go to be with Jesus.” I told her that Mommy and Daddy and her brother’s and sister would be okay, that she was free to fly with the angels. I begged her to run to Jesus, thinking that it would be a quick and painless transition from this world to the next. A nurse ran in and said, “you are doing so good mom, you are doing exactly what you need to do.” “Keep talking to her, tell her it is okay, you are doing so good mom.” I shed not one tear, not wanting to scare Alexandria or make her want to stay any longer than she should. I tell you, this was God, our Lord and Savior, speaking straight through me. I would never have the strength to do that. Never. As long as I have been alive, I have never had an experience like that, and I don’t believe I ever will again. A peace that surpassed ANY and ALL understanding.
Something in my heart told me that she would not leave us that night, not on Valentine’s Day, despite the doctor telling us to call all of our family and have them come say their “goodbye’s.” Someone told me that she would hang on. The events of the next few days are heart-breaking. Some are vivid, some are hazy. I remember telling Grant and my sister Michelle, (who did not leave our sides that weekend and I will be eternally grateful for….she was my rock that weekend) to not let me fall asleep. I simply REFUSED to be asleep when Alexandria took her last breath on this earth. I needed that. I needed to be awake, alert, aware of everything. I did not move from her side that weekend except to go to the bathroom which was in her room, and to update the website quickly on the nurse’s computer right outside her hospital room. I was there the second she came in to this world, and I would see her out. I will never forget when Nancy brought in Moonbeam that Saturday. I will never forget friends gathered around her that Friday night, as I held her and rocked her in my arms, singing “Amazing Grace” a song I still cannot make it through without bawling uncontrollably. Three long years later and it is still surreal. I talked to a friend last night who lost their son thirteen years ago. He said it is still like a nightmare he cannot wake up from. Thirteen years. It is proof that this pain will never cease, I will just continue to learn how to deal with it.
Last week was “Disability Awareness Week” at the kids’ school. Hayden’s 3rd grade class was performing in an assembly. He came to me every night the week before saying that every time he practices the song with his grade, he has to really try hard not to cry. He said the song reminded him of Alexandria, and how kids used to make fun of her or stare at her when she lost her hair. I will share the song which they also did in sign language with you…….
Don’t Laugh At Me
I’m a little boy with glasses
The one they call a geek
A little girl who never smiles
Cause I have braces on my teeth.
And I know how it feels to cry myself to sleep
Don’t laugh at me, don’t call me names
Don’t get your pleasure from my pain
In God’s eyes we’re all the same
Some day we’ll all have perfect wings
Don’t laugh at me.
I’m the beggar on the corner
You pass me on the streets
And don’t think I don’t notice
That our eyes never meet
Don’t laugh at me
Don’t call me names
Don’t get your pleasure from my pain
In God’s eyes we’re all the same
SOME DAY WE’LL ALL HAVE PERFECT WINGS, DON’T LAUGH AT ME !!!!!!!!
I kept telling myself over and over and over, “my child needs me, be strong and that I COULD NOT cry. My heart raced on performance day as I sat in the audience amidst all the other parents and teachers. The lights came on the stage, and they were shining directly in Hayden’s eyes. I do not need to tell you that I then felt completely at ease to release the tears. He had no clue….I am the queen of Kleenex and all tears were gone by the time I saw him and congratulated him on making it through the song. He never knew that I didn’t…….
Thanks to all who remembered that this day, until burial day is very painful. I sincerely appreciate your thoughtfulness and concern for us.
Blessings and Happy Valentines to you all-
Alison
Sunday, February 12, 2006 10:36 PM CST
The Lord of the Journey
Lord, I come before You tonight,
Heavy of heart and weary in soul.
This road we are walking together
Just seems to keep going on and on,
A continual, arduous climb.
I find my feet stumbling on the rocks,
My body crying out with exhaustion.
But each time I fall, You gently pick me up
And encourage me to keep climbing.
You hold my hand, pulling me over the roughest spots.
You carry me lightly when the path all but disappears.
I look up now and again,
Surprised at the heights which we have traversed,
Awed by the view of the great expanse.
The top of the mountain is yet wreathed in mists,
Hidden away from my eager eyes.
I know not how far or how steep
The rest of the journey will be,
But I know that even here on this tiny piece of cliff
That I can find joy enough to dance before You,
To raise a song of worship and of praise.
The very rocks themselves join in the chorus,
Singing forth the song that is older than they.
You are the Lord of the journey,
And I place my trust in You
I place my trust in Him and Him alone....ALWAYS....but that does not mean my heart is not breaking.
Please keep all of our family in your prayers as we face this week of Alexandria's Angelversary, already proving itself to be difficult for many reasons.
To Cindy, to Debbie, to Elaine, to Lynn, to the many bereaved mom's, and to the countless friends who have written to me with their very personal stories about how Alexandria has touched them, words escape me right now. I am in awe of you all and what each and every one of you means to me. I am in awe of God's great and wonderful power to connect us all by circumstance...by one single person's life. It is no accident that we are all drawn together, our lives intertwined by the grace of God and all of His mercies.
The sorrows may last for a night, but joy comes in the morning.....
Blessings to you all-
Alison
Monday, February 6, 2006 8:39 PM CST
Happy Half Birthday to YOU....CHA CHA CHA
Happy Half Birthday to YOU....CHA CHA CHA
Happy Half Birthday my dearest Alexandria
Happy Half Birthday to you.....CHA CHA CHA !!!!!!!!
12 1/2 years old you would be on this very day.....
The half birthday is a very important event, especially if you know your child will not live to see the day of their actual birthday. If you know you will not be blessed with the gift of spending that next birthday with them, the half birthday is a day to be cherished. And it was.
I remember the events, the conversations of that day vividly. Daddy called me from Toys R Us. He got you Barbie Secret Agent Cd-Rom and a Hello Kitty doll house for her and her "Hamtaro friends" to share. We did not question how Hello Kitty and the hamsters would get along, we simply complied with your wishes. The memories of your brothers on the bed playing with you because they just wanted to be near you is etched in my mind forever.
The last time we celebrated, we did not know you would have only ten days left on this earth. However, we knew our time together would probably be limited and so we literally "enveloped you" with love and hugs and kisses constantly.
Oh what I would give....one more day...one more hour.
No more words tonight, just plenty of tears.
In Him-
Alison
-there is also an update from yesterday
Sunday, February 5, 2006 7:45 PM CST
"Pain is temporary. Quitting is forever."
~Lance Armstrong
Pain is not a pleasant thing and after the “spinning” class I participated in the other night, I have pain in areas that no one should !! To top off the pain and sheer exhaustion that this high-intensity work out brings, there is good ‘ol humbleness. As Johnelle and I gasped for air, got cramps in our feet and legs, and dripped sweat from every pore in our body, a little firecracker “spun” next to us. She was, oh, around 75 years old. I AM NOT KIDDING YOU !!! She “ran right over” the young women less than half her age. I don’t think she sweat until the end either. What’s up with that ?!?!? All I can say is “YOU GO GIRL !!!” She was amazing.
Being the wimp that I am when it comes to being cold (not NEARLY as bad as my sister’s Stephanie and Michelle though), I did not train outside yesterday with other members of Kailie’s Krazy Krew. I think my first long bike ride needs to be with better weather conditions, (at least 30 degrees) or it will make it that much more difficult (to come back the next week, that is.) It was 25 degrees standing still, I cannot imagine what it was with the wind chill. Speaking of the team, Chelsea, our krewmate is doing much better. Thank you to all who have visited her site and left words for her or her mom. You do need to make a password on the hospital website, it is not a caringbridge site. It will automatically send you an e-mail when there is an update which is really cool.
So yesterday, in lieu, of the outdoor bike ride training, I chose to do the old fashioned “spring cleaning” work out. The glass doors in my shower were starting to look like frosted glass with all that soap scum build up. One thing that kept creeping into my mind over and over again…a question I have pondered for years actually. We can put man on the moon, have unbelievable technological advances, even self-cleaning ovens, yet where is the Einstein when you need a self-cleaning toilet ....times 4. I am telling you I would be the richest woman in the world if I could create that one...and the happiest. Come on, you girls know what I’m talkin’ about. Three boys in my house and that about does it for me. The word “aim” must not exist in their vocabulary. Oh the joys of motherhood.
Well, here it is, another February is upon us. Where again is that fast-forward button? Someone hit it QUICK !!!! This February 16th marks the three year “Angelversary” for Alexandria. Could it possibly have been that long ago? Some days it feels like a lifetime...others days, like just one single moment ago that I told Alexandria that is was okay to let go, okay to go be with Jesus....fly far, far away from this world with the angels that had come for her. My heart is dreadfully sad when those thoughts come creeping in.
We will be doing something this year that we have not done for three....we will celebrate Valentine’s Day. We just have not had the heart to do it...but this year we will, for our other children, we will do it, despite the pain it brings.
Please take this opportunity to go to Meghan’s website (link at the bottom) and let Carol know that you are thinking of her. February 7th, will be 3 years since Meghan went to be with Jesus as well. I imagine that Alexandria is lovin’ on little Ms. Meghan 24/7 and being her “big sister.”
Well, better run, I have some commercials to watch.
My goal is to update more frequently, so we’ll see how I do. Thanks for coming by, it means more than you know. I am in utter amazement when I see how many visits this website gets weekly. You guys are awesome !!!
In Him- Alison
Wednesday, February 1, 2006 10:17 PM CST
First of all, I must explain. My last entry was a bit confusing and when I re-read it, I can see where you all got the impression that I was the donor and I do so apologize……...However, it was a letter written to my friend Diane, from someone whom she did not know, expressing how they were going to be a donor to a 15 year old. This person was explaining that they registered for The National Bone Marrow Registry (NBMP) after being inspired by Alex and Matt Pearl’s story. Both children have a bone marrow disease called Fanconi Anemia. Alex had her transplant…Matt needs a transplant but does not have a perfect match. PLEASE GO GET TESTED…you just may be his match. There are an estimated 3,000 people in the United States waiting for that perfect match and a second chance at life at any given time, 30 in the St. Louis area alone. Oh, how I do wish that someday I do receive that phone call, that written letter informing me that I could give the gift of life, or at least the gift of hope to another family. THAT WOULD BE AWESOME !!!!!!!!
Now here is the form letter written to me:
DEAR ALISON,
Thank you for submitting your application for the 15th Annual "America's Most Beautiful Bike Ride - Lake Tahoe". We look forward to having you join us on Sunday, June 4, 2006.
This may prove to be the last thing I do on this earth (as I am sure it could very well kill me …lol). I am riding in the 100 mile bike ride around Lake Tahoe, with Kailie’s Krew, in memory of beautiful Kailie and in memory of my precious daughter, Alexandria….and Meghan, and Cody, and Benjamin, and Matthew, and Emily Ann, and Jessica, and Jacob, and Andy, and Gina, and Lexy, and Janie, and Frannie, and Abby, and Jake, and Anthony, and Cheyenne, and Olivia, and Robert, and Reese, and Savannah, and Seth, and Tara, and Tyler, and Cassidy, and Anna, and Lauren, and Allie, and Tyler, and Brant, and the countless other angels we know. If more money is raised for this dreadful disease, maybe the angel list would not be so lengthy.
We are also riding in honor of our “krewmate” Chelsea. Chelsea is a wonderful 15 year old girl. She had cancer before. She beat the odds. She was cancer free for 7 years……7 years !!!!!! Then, completely unexpectedly, she relapsed last year. I know the family was devastated. Especially due to the fact that they had lost Chelsea’s dad in a car accident the year before. It is hard for me to fathom how one family can experience such pain, such hardship, so many personal trials and live to tell about it. It makes me so incredibly sad. I do not question God, nor do I let my anger take my eye of the ultimate prize. However, there are times when you think that no one can withstand such tragedy so many times in such a short period of time. My heart is so easily weighed down with the sorrow and pain of others who must endure that which we have endured. Please pray for Chelsea. She has been in septic shock, on a ventilator, having blood pressure issues, etc., for almost two weeks. Things have been very tough for Chelsea since she relapsed. Last spring, she became septic from the chemo and having no immune system and was on the ventilator for 80 days. She has had a rough year learning how to walk again and do things that we take for granted.
Her website is :
http://www.carepages.com/ServeCarePage?cpn=chelseaherbet&uniq=917076
(If this link does not work properly, copy and paste the entire URL into your browser's address window)
Please feel free to leave her or her mother Carla a message so they will feel the love and support that they so desperately need at this trying time.
Don’t forget…MORE DONORS ARE NEEDED NOW. To enroll in the NMDP, you must be between the ages of 18 and 59 and in good health. The Heart of America is the affiliate organization in this area that screens donors and submits them to the NMDP. They will ask medical questions in the screening process and take a simple blood sample to send for processing. This process takes four or more weeks. It has nothing to do with your blood type and takes less than 30 minutes.
DRIVES SAVE LIVES… MIRACLE MATCHES HAVE BEEN FOUND:
The Pearls’ have been personally contacted by over 100 people tested at the drives in their children’s honor that have been identified as potential bone marrow matches for other families in need. Those 100 people made a big difference in the lives of 100 people !!!
I will update in a few days so stay tuned and God bless you in the meantime.
In Him-
Alison
Sunday, January 22, 2006 10:01 PM CST
I just want to take this opportunity to thank each and every one of you who have taken the time to write me personally or write in the guestbook. Sometimes I begin to believe that someone out there is hitting the “refresh” button literally a thousand times a week and not that many people really come here. It means a great deal to me that
people still take time to come to Alexandria’s website and see how we are doing. Your words of comfort, empathy, sympathy, and kindness inspire me daily. I stand in awe of what this link to all of you has meant in my life. The beacon of light it has given to me on my darkest day is difficult to articulate.
In my last entry I spoke of how this life is not about you or me, and ALL about HIM and giving Him the glory whether you are on the mountain top or deep, deep in the valley. It is my personal belief that we do not get to Heaven on good deeds and services, but a simple accepting of Jesus Christ as our Lord and Savior. That being said, good deeds sure do make the world a better place. It seems as if we are all trapped in this “me” afflicted world. Everyone seems to be worried about themselves, moving up the ladder, the quick fix, instant gratification. I admit, I too, fall victim to this disease. It seems as if I work out and eat right for a week, and I instantly want to be fit and trim. (Hey, a week is LONG time). I want prayers to be answered on my time, not His. My will, not His. We all have been conditioned to think of ourselves and our families first, others second. I agree that one must “take care of the home team” but it is equally important to think of others. No matter what your calling, (God’s calling for you) we all have a contribution to share with others and God wants us to do just that. What good does a blessing do if it is not shared with others? You may have a talent for working with your hands….how awesome it would be to share that God-given talent with the people at Habitat for Humanity building houses for those less fortunate. God may have blessed you with tremendous amounts of patience and heart of a saint and your calling may be to help the physically or mentally disabled. You may have been touched by cancer either by a family member’s battle or your own, and you are inspired to volunteer for the American Cancer Society, or a specific cancer. The Red Cross, The Humane Society, the possibilities are endless.
Whatever your passion, whatever speaks to you or God has laid on your heart….please do not let that call go by the wayside, act on it. Step out of your comfort zone and know that God smiles down on those who help others. He is pleased greatly by watching His children aid His other children in a time of need. There is no better time than now, for you may not be given the gift of tomorrow. If you have any doubt that a single person can make a difference, please know that you are mistaken and you underestimate God……our God is bigger than that. He will guide you. Sometimes it is a calling of your choice. Other times, God just makes it so abundantly clear what He wants you to do. He made it clear to me that He wanted me to help other kids with cancer and their families. It is not one that I would have thought 6 years ago would have been my mission. I am not sure I would have chosen it for myself had I not been so deeply touched and affected by my daughter’s and dad’s battles with cancer. I thank God for revealing His plan to me, despite it being the most difficult thing I have ever endured. It is hard to empathize with what we do not fully comprehend. I can fully comprehend childhood cancer, the ups and downs, ins and outs, and the great loss and grief that others may not fully be able to appreciate. Just as someone who has been homeless, can fully relate to those who are in need of shelter.
What I am trying to say as I babble on here, is to not turn your head and look the other way to those who stand in great need for our assistance. We have either been there, or could be there someday. Wouldn’t you want someone to do the same for you? If you think that you are just a grain of sand in the big sea of life and you cannot make a difference, I challenge you to challenge yourself. You can make a difference.
I will share with you a letter written to a friend of mine, Diane Pearl, whose two children, Alex and Matt, have Fanconi Anemia. Alex had her bone marrow transplant 5 years ago. Matt is still in need of a bone marrow transplant but after searching the world, a match has not been found.
"At the risk of creating a lengthy, boring entry, I thought I would share a part of my life that might be of interest to many of you, especially those with kids. About three weeks before Christmas, I came home after a really crappy day at work, and found a letter in my mail from a regional blood bank here. I opened the letter and was stunned to read that I had been tentatively matched up as a possible donor for a bone marrow transplant. Just reading the letter sent chills down my spine. It was totally out of the blue. I had remembered that back in 2000 or 2001, I had read an article in the local paper about the Pearl family from Missouri. Two children in this family had a rare blood disorder which would ultimately require a bone marrow transplant. The kids’ grandparents lived near me in Sullivan, Illinois, and they were asking for volunteers to be tested as a potential match as a bone marrow donor. A fundraiser was to be held in Sullivan that next week. So pretty much on a whim, I decided to make the 30 minute trip down to the fundraiser to be tested. I knew it would be a long shot, but I thought what the heck. I saw the parents and kids, and had the blood work done, all in all a very simple procedure that was not unlike having your blood tested at the doctor’s office. Unfortunately, neither I nor anyone else at that fundraiser was a potential match for either of the children. Later, I received a letter from the National Marrow Donor Program (NMDP) thanking me for being tested, and indicating that my info would be kept in their data base for any potential matches in the future. Even at that point, there was no doubt about it in my mind I would help. So I called the blood center the next day to ask what the next steps were. I was told that I would have to have confirmatory testing done (along with any other potential matches) to make sure of the match, and to also make sure I was a suitable donor. Again, this just involved a visit to the local Red Cross to have four vials of blood drawn. The samples were then mailed Fed Ex, one set to the blood center in Urbana, Illinois and the other to a center in Pittsburgh, Pennsylvania. The blood would again be tested and matched up again to find the best possible donor. Well, last night I came home and there was a message in my voicemail from the regional blood center asking me to please contact the program director there. I called her last night, and she informed me that it was now official: I had been confirmed as a matching bone marrow donor for a 15-year-old boy with acute myelogenous leukemia (AML). Again, she told me that I had to now think about it, talk it over with family members and make an informed decision. I stopped her in mid-sentence and told her that I had already been thinking about it for a month now, and I was definitely in. I’m awaiting the necessary informational and consent forms to be mailed to me, and on Monday (January 23) I have another phone meeting to verify my decision to go forward. In a nutshell, all that’s left is a complete physical and then at some point the actual bone marrow extraction itself, which I’m told will be done in Indianapolis, Indiana. A thousand thoughts have been going through my mind since last night. The most overwhelming thought has been about the precariousness of life and events and how they interrelate to another. Even the most seemingly insignificant acts can and do ultimately lead to major life events. For example, what if I hadn’t read the newspaper that day about the Pearl family? What if I had had other plans on the date of the fundraiser? Or what if I had just decided it just wasn’t worth my time or effort? Any of those possibilities might have occurred. But because they didn’t occur, I’m here where I’m at now. As overwhelming as I feel now, I can only imagine how the family of the 15-year-old boy now feels. I don’t know yet whether they’ve been told there is a match out there (something tells me they have been told) but for a child with a potentially fatal illness the only thing they’re looking for is hope. There are no guarantees in this, but at least there is hope, another chance, another good chance. And I am truly blessed to be a part of it."
Unbelievable, undeniable, proof that gifts are meant to be shared, not kept. The joy of giving is an expression of thanksgiving to God. Within each and every one of us resides the capacity to offer hope to others. The gift of blood or bone marrow, the gift of time, the gift of prayers, the gift of knowledge are all priceless and immeasurable contributions. When we do that, we are looking beyond ourselves to others who inevitably have it worse than us. It is hard to feel sorry for yourself and wallow in self-pity when you are at the aid of another.
My blessings run deep, my cup runneth over and I am honored to share here with you. I am honored that you care. Is God whispering your name? Is He shouting it? Are you listening? Are you being obedient?
2 Corinthians 3-4
Praise be to the God and Father of our Lord Jesus Christ, the Father of compassion and God of all comfort, who comforts us in all our troubles, so that we can comfort those in any trouble with the comfort we ourselves have received from God.
Peace to all-
Alison
Saturday, January 14, 2006 0:54 AM CST
Update Saturday 9:30 p.m.
***Although the picture does not do it justice, Alexandria's pink and purple tree is on the photo page, along with some other cute pics of the kids. We placed the tree under the oil painting that we had done right after she passed away. Of course she is beautifully adorned with her pink-tipped angel wings, is wearing the dress she wore on her 7th birthday, and is holding a dove. I walk by that painting a thousand times a day and a thousand times I think of her and how she looks in Heaven. Daddy, Hunter and Hayden were being silly on New Year's Eve and the boys got their first mustaches. We were a little too liberal with the white icing on our gingerbread house, and we ran out of it, so we had to switch to chocolate icing. As you can see this was a most delightful treat !!!****
Unlike others that have gone before me and so eloquently spoken of their resolutions, I have chosen to put them off until now. Proscrastination. Yes, my first New Year’s Resolution realized….Thou Shall NOT procrastinate !!! I choose to think I needed more
time to reflect and truly understand what goals needed to be met for the approaching year of 2006. Actually, there are countless ways in which I want to improve myself. Lose weight, (it is easy to gain weight when food is your comfort through grief) volunteer more at school, help more kids with cancer, help more people in general, be a better mom, a better friend, a better wife, be more organized, do laundry more frequently and for goodness sakes MATCH THE SOCKS AND PUT THEM AWAY (after all their home is not in a laundry basket). All these things may be all good and well for making Alison who she thinks she should be, but the real question is, what does God want me to be? What does God want to see from Alison Haddock in 2006? How does He want me to grow? Who does He want me to help? What does He have in store for me? Who does He want me to share His word with ? The possibilities are endless. He wants me to go where I have not gone before. He wants me to walk where I have not walked before. He wants me to walk on water….He wants me to get out of the boat….and that is where I will meet Him. Just ask Peter.
So, instead of asking myself, what do I want to accomplish this year? What goals do I have? My question is what does God want to see from me? What does God want to accomplish THROUGH me this year? Those who say “yes” to the calling of God do NOT walk perfectly, but will grow, learn and help others by agreeing to His word.
So, again I say, let this next 365 (okay 350) days be about Him and glorifying Him to the highest…..not about you, not about me, ALL about HIM !!!!!
Last night we had an eventful night. Grant had taken the boys over to Hayden’s coaches’ house to sign up for baseball. They heard a loud crash in the basement and Grant’s heart sank as he feared something bad had happened. It did. A fluorescent light fell down on Hunter and shattered. He had a deep gash in his forearm. After Grant’s somewhat concerned phone call to me, I rushed home from dropping off Addison at Dawn’s house for a sleepover with her Katie bug, to see that the wound was, well, deep, very deep. So, off to the E. R. we went. Funny how the show E. R. was on in the waiting room. The last time I watched that ridiculous show was when I was pregnant with Hunter and the mom gave birth and she died, the baby lived. Problem was, I was watching that show from the comforts of a Labor and Delivery suite at St. Lukes Hospital here in St. Louis. Yep, I was in the midst of giving birth to Hunter when I saw that episode…….uh …….wrongoooooo………bad timing !!!!!! I specifically remember the nurse asking if she could change the channel because she thought I was crazy to be watching such a thing at that particular time. The nurse that was checking us in asked if Hunter had had any surgeries or allergies. I said he was a Bone Marrow Donor for his sister, and gave her the heavy eye-brow look, shook my head, so as not to ask. She knew. She understood immediately without words. She commented on his bravery. She then noted that she had a Stem Cell Transplant …..23 years ago at Cardinal Glennon, the hospital that Alexandria passed away at. She had Ewing’s Sarcoma. It is a very bad bone cancer, and very difficult to beat, and certainly 23 years ago. She is definitely a miracle.
So, Hunter is doing well. He may have been a bone marrow donor, but he has never had stitches, so I suppose he needed to be indoctrinated into that “boy’s club.” I hate the smells of a hospital. I do not like the sounds of a hospital. My eyes ache at the sight of all the equipment, so familiar, so painful. It takes great prayer, mercy and strength from our Savior to venture back to “that” place. Haunting memories. vivid recollections. But for Hunter, I fight the demons welling up inside. For my sweet son, I say, "look at mommy, not at the doctor", as they stitch his skin, and my heart back together again. I hide his eyes as I hide my heart so that others may not see the pain that resides there.
There are some funny things that happened there and we will tell those stories too. In the mean time, PLEASE, let us know you were here. You only need to sign your name if the words do not come to you....we are grateful for your visit. It would just be nice to know who visits the webpage on an average day or two.
Well, all’s well that is well…..(Addison’s quote)
In Him-
Alison
Monday, January 2, 2006 5:22 PM CST
With the New Year upon us, and 2005 coming to a close, this is always a time of reflection for me. I remember all of the wonderful things and people that God has blessed me with. I think about the precious people who are no longer with us on this earth but that we now carry in our hearts. I reflect on all the devastation the last year has brought to so many. The tsunami, Hurricane Katrina, Hurricane Rita…..life-changing events with so much loss and heartache. The enormity of it all is so overwhelming to me. Most of us feel helpless to change these circumstances other than to give monetarily. The after effects are still present with much rebuilding and heart mending to be done.
I, of course, think about all the families who are going through the grief process due to losing their child to cancer or other childhood disease. For many, this, the second Christmas without their child, was even more difficult than the first. I believe, you still have the buffer of “shock and denial” to shield you from experiencing all of the pain fully that first year. You are only given as much as you can emotionally and physically handle. Although some are further along, and some are just beginning their journey, all are the same in that they have lost a precious child. Each of them is enduring a lonely, long road, and my heart breaks for them. Please know that I hold each of you experiencing this trial, in my heart and I pray daily for peace for each of you. I also apologize to some of you for the Mercy Me song playing, I Can Only Imagine. I know it is an extremely emotional song that conjures up a great deal of memories. So, at least you now know to turn your sound down BEFORE you come here so you do not have to “go there.”
This Christmas, I give thanks for the gift I was given, once again. The gift of giving. Through wonderful sponsors of the Alexandria’s Angels Foundation, we were able to put many smiles on the faces of children with cancer. It truly gives me such joy, such purpose, to be able to help these families who have been affected by childhood cancer. To play “Santa” means that Alexandria’s legacy lives on, and that we are offering hope to these families. It truly is the highlight of the Christmas season for me and I am honored to represent my daughter in this way. Thank you to all who share in our mission and donate to our cause. If I could bottle up and share this gift I have been given, I would grant it to each of you so that you may experience that same love and appreciation.
Everyone here at the Haddock household had a wonderful and extremely relaxing Christmas break. We did very little on Christmas day and barely managed to get out of our jammies. It was wonderful. Grant has had the week off and we have just been enjoying some family time together making new memories. We have been renting movies, going to movies, playing board games, playing Gamecube (I have become quite addicted to Karoake Revolution…..don’t mess with a mom and her microphone, and the kids are getting their coordination skills honed with Dance Revolution.)
Hey, WE ROCK !!! The boys got guitars from Santa, and Grant, (my oldest child, haha), has become quite addicted to playing with them too. May the good Lord bless me with the benefit of a sound proof room in the basement during their “learning stage.” We also went roller skating which was quite a site to behold. My husband mistakenly believed that he was still 16 and playing goalie in hockey. He made the unfortunate decision with his now “unflexible self” to do the LIMBO. I am not sure what would possess a 42 year old man to think that he was still capable of such a feat, but it sure proved to be entertaining for the spectators in the crowd…that would be me.
When those teenagers saw a 200+ lb man barreling down the rink full speed, the fear of death was upon them I’m sure. I am confident there was a strong temptation to drop the pvc bar and head for safer ground. However, the rather brave souls held their course, and sadly, Mac Daddy, was out in the first round. A shameful and embarrassing representation of the Haddock’s abilities for sure. However, there was still a chance that some member of the Haddock clan could take home the limbo championship. Hayden faired well, Hunter faired even better. But the shortest and most flexible member of the crew, Addison, won the contest, despite the disadvantage of the two inch tall brain bucket (helmet) that her mommy insisted she wear. Safety first, right? Thankfully for Grant we left the camera and camcorder at home. And you may be wondering where I landed in this line up……..I’m not stupid people, I watched the comedy hour on the sidelines, with the benefit of solid shoes and solid ground.
Well, “all’s well that is well !!” (A direct quote from Addison)
I’ll tell you, if you want to have some serious flash backs of your grade school or high school days, visit your nearest roller rink……scary !!!!!
Although we did have a relaxing and stress free Christmas, Alexandria was never far from our minds. Her tree is just beautiful and I know she would just love it. It was adorned with pink stars covered in glitter, enveloped in pink and purple princess lights, surrounded by loving angels, and decorated with white butterflies with glitter on their wings, pink jeweled garland and Hello Kitty ornaments. I will post a picture soon.
We placed the tree under the oil painting of her and it had an absolutely amazing glow. We kept the lights on day and night to enjoy its splendor. There was one thought that kept coming into my head time in the days before and after Christmas. Alexandria loved a song by Hillary Duff, and sang it quite frequently, and I cannot think of anything more perfect than the memory of she and I singing together………
“As long as there’s Christmas, I truly believe,
that HOPE is the greatest of the gifts we’ll receive….
BELIEVE !!!!!!!!!!!!”
Hope is an amazing thing…..Hope is a blessing, Hope is a gift straight from God.
Hope and knowledge that I will spend eternity with my Maker, Alexandria, and my dad, is all that gets me through some days.
I hope 2006 is filled with PEACE, LOVE, GRACE, HOPE and HEALTH for each and every one of you.
A sincere thank you to all that sent us Christmas cards and my deepest apologies, once again, for at least 4 years now, we have neglected to send them out. Well, there’s always next year.
In Him-
Alison
Tuesday, December 20, 2005 7:14 PM CST
Written December 19th, 2005
We have had a full blown “puke-a-polooza” around here for the last week. It has not been pretty. There were over 250 kids out at school with this lovely stomach bug and it was a doozy. The health dept. has even been calling everyone as they think it was the Norwalk flu. It is nothing serious, but no fun that is for sure. We were at the Johnson’s house last Saturday night and I was commenting on how Hunter had gotten sick the Sunday before, but no one else had gotten it. I BROKE THE BASIC MOM RULE !!!!!!! I even knocked on wood, as I knew as soon as the words left my mouth that I would be jinxing myself. I did. Hayden did wait until we were home and I had just gotten into a deep sleep. Frantically he woke me up and told me he thought he was going to be sick. I believe I told him, rather emphatically, that he was mistaken, that he was not going to be sick. He was. Funny thing about the Haddock’s we don’t mess around when it comes to throwing up. We are well equipped with pink “puke buckets” in every room in our house……you never know, right? My children learned from the best……Alexandria was the master. At one point Addison, and her little drama queen self, said “There is a war going on inside my body….there are the germs, and the other guys…and the germs are definitely winning!!!!” She really is a riot.
Every soldier in the Haddock platoon has fallen in some way, shape or form. We are all on the mend, PTL, but it is still going around rampant. Do you think people would look at me funny if I wore a mask around? I still have some left over from when Alexandria had to wear them. Don’t laugh, I have seriously contemplated it. I dare NOT go near the school right now. There really is not enough anti-bacterial gel in the free world to make me comfortable going there or any other public places around here right now. It makes it a little difficult to get shopping done, but oh well.
Today, is December 19, 2005, and three years ago today December, 19, 2002, we learned that Alexandria relapsed post BMT and our options were limited. I wrote in this journal:
Thursday, December 19, 2002 at 06:40 PM (CST)
Day + 79
I really do not have the words to explain the events of today...no way to describe the pain searing through my heart to depths of my soul. Alexandria has relapsed, again. We found out today she has 14 % blasts in her blood which means her bone marrow is packed again. Please pray harder than you ever have for my baby, my precious daughter.......this is the only thing that will keep her here with us, your prayers and the grace of God. We need a miracle here folks...there is just no other way. I am not not going to give up on her....I know she would never give up on me.....I will hope, I will pray that it is our Lord's will that she live. I can't bear to live without her.
God Bless you all-
Alison
I remember the day, I remember the sadness, I remember the anger. How could they just now detect that Hunter’s blood/bone marrow was only 8% and Alexandria’s leukemia-ridden blood was back with such a vengeance. It was a simple test to determine if the blood in her bloodstream was male or female dna and then we would have known. If only it had been done, if it had been done sooner…the cyclosporin could have possibly been stopped sooner creating some GVHD which is good. Only God knows if that would have made a difference but the sense of frustration and disappointment was overwhelming at the time and hard to think of even three years later. The next six weeks would prove to be the most difficult we had faced thus far in her cancer battle. That was before we knew how incredibly difficult it would be to face losing her.
As you can plainly hear, the song “I Can Only Imagine” is playing. That is compliments of Angel Emily Ann’s Dad. (and two Angels I understand). I cannot thank him enough for taking the time to do this for us. We truly appreciate it.
I close my eyes, and for a moment, I am still and quiet and “I Can Only Imagine”
What Alexandria must be doing in Heaven right now
The celebration they must be preparing for….Jesus’ Birthday
The unending happiness she feels
The beauty that fills her eyes every moment
The glory that surrounds her
The majesty before her
Timelessness
Praising God constantly
Peace permeating to the core of every single thing
The angelic chorus that fills the ears of all who reside there
Something so magnificent that our humanly senses could not handle it, our minds could not comprehend or grasp all of its splendor……
I Can Only Imagine when all I would do, is forever worship Him, and
Hold Her Once Again…….I Can Only Imagine……..
Although this is always a hard time of year, it is also a magical time, a wonderful time. I did manage to get into the holiday spirit and decorate my home. Yes, the halls are decked and the stockings are hung with care, and angels abound. I did not do my customary job of making sure each room was adorned, but it will suffice. We are decorating a special tree just for Sissy this year, and guess what color all of the ornaments will be? Pink? Absolutely. I will take a picture and share soon. In the mean time, check out the pictures that Grant added today (can you believe it ??!?!?)
I hope that you all are staying healthy in preparation for the holidays.
Please take the time to say a special prayer for those who are spending their first Christmas without their child. It is so incredibly painful to experience this and I know they would appreciate it if you dropped them a line.
Christmas Blessings to you-
Alison
Wednesday, December 7, 2005 10:36 PM CST
I suppose if you are here now, you are looking for an update, something new to read….the pilgrim to fade to black and the Christmas tree to appear. However, I am not quite sure why you still chose to come here since I am known for my incoherent ramblings and repetitive mumbo jumbo. In fact, I have now been dubbed by my husband as a “blogger.” “A WHAT, I asked?” You have got to be kidding me ?!?!? Not exactly the title I was looking for, but I suppose it could have been another “b” word, right? I was not sure whether or not to be offended by the comment, but flattered, I was not. I guess there are people out there that do so enjoy “blogging” by putting their daily happenings and personal details on the internet, but my goals are certainly different than show and tell and voyeurism. What started out as a means to keep other people informed about Alexandria’s health, has evolved into how we as a family are dealing with her death. Hopefully, something I say here is in some way, shape or form, helpful to another grieving family. They will know they are not alone in this journey. Maybe they will understand that they are not going completely out of their minds. Quite possibly they will see a sign, a small ray of hope from someone a little further down the road. That is my goal, that is my motivation. I cannot imagine not being linked via internet to all the bereaved families that I am. Talk about feeling isolated!!! Contrary to some of the tones of my entries, my goal, honestly, is not to blast people for what they have/have not done, it is to tell people how thankful we are for them and their friendship. We could never repay so many for the kindness they have imparted to us. And, sometimes, you just have to speak what is on your mind and heart because being honest is a form of healing and moving on with your life. It too serves a purpose that I believe others can learn from. Perhaps by my experiences being shared here, someone may act/react differently to a bereaved family because they have a different perspective now. God has also taught me how to have a forgiving heart, something I have certainly not perfected, but admittedly have been working hard on for several years. Therefore, it is not with malicious intent that I ever say anything negative.
**** FYI ……Grant meant nothing bad by calling me a blogger, I think he just wanted to impress me with his computer savvy (ha-ha) techno talk. *****
He is SO yesterday……
I think it is only now, almost two weeks post Thanksgiving, that I am fully recovering from my turkey-induced tryptophan, coma. We ate WAY too much, but that is what Thanksgiving is all about……..eating to show how thankful you are, right? Well, the Haddock family is VERY thankful judging by the food consumption that weekend.
So quickly we mow right over Thanksgiving to get to Christmas, that I think sometimes we do not fully stop to savor all we are truly thankful for. What better time than Christmas, the birthday of Jesus, to show your thankfulness for all of your blessings. It is that time of year when we all get caught up in the commercialism of Christmas and forget what this holiday season is really all about. It is hard to believe that we will be without Alexandria for the third Christmas. It seems impossible that so much time could have passed. In recent years it has been hard for me to “jump start” into the season. I have been reluctant to get out all of my holiday decorations. This year is no different. I have listened to Christmas music for the past week trying to get me into the “Christmas spirit.” It is just so hard knowing that someone is missing. Of course I do it for the other children and for Grant and myself too. We know that life must go on and Alexandria would want it that way, but it does not make it any easier, or your heart hurt any less.
Last Friday I watched the video of her getting Hunter’s bone marrow. I was shocked that I did not cry uncontrollably. Only a few tears. It was so good to see my baby. She was watching Space Jam the movie, with “Whoop There It Is” playing. She was dancing (in bed) like a bobble head doll ………….her head on ball-bearings it seemed. A request for chicken noodle soup was made as the infusion began. Here it was….. this monumental event, a pivotal moment in her life……and she wanted to eat…..compliments of steroids. Not to worry, one chicken noodle soup, coming right up. She was in a such a great mood in spite of being blasted with enough chemo and radiation to kill her if not for Hunter’s bone marrow to rescue her. Grant was doing the videotaping and hauntingly enough he was talking to the bone marrow, saying “come on guys, do what you gotta do” and things like that. Hunter was so proud of himself when we got home from BMT. I am not sure if I could ever let him watch that tape. I know it would devastate him. Despite our greatest efforts and those who handle these types of things professionally, there must be some degree of guilt associated with a child who gives bone marrow to their sibling and he/she does not live. Several times since she passed away, he asked if his bone marrow was not good enough or strong enough for his Sissy and that is why she died. We have told him that is simply not the case…her cancer was just a really tough kind to treat. It breaks my heart though to think for one second that he could blame himself. I think we have done a good job of making him understand it all, you just never know what is lurking around in their minds sometimes though. Nonetheless, the videotape was bittersweet to watch.
My sister from MS and her family were here for Thanksgiving. They brought a book of “before and after” pictures from hurricane Katrina and some of the devastation it caused. It is really unbelievable….and I am told that the pictures do not tell nearly the entire story. It is sad to think that these people lost everything, and are still dealing with all of the after effects. It is unimaginable to most of us who were not directly affected just minorly inconvenienced by high gas prices. Many are homeless to this day. Many lost loved ones and all of their worldly possessions. Much of the country has gotten back to their everyday business, gas prices have gone back down, but the people on the Gulf Coast, I’m sure are finding this holiday season especially difficult. In the midst of the melee and madness of the season, let us not forget these people who are not lucky enough to have homes to put a tree in. Though you may be tempted to keep up with the Griswold’s and deplete the electricity in your town, or buy the biggest, bestest toys for your clan, let us keep the true meaning of Christmas at the forefront of our minds.
******JESUS IS THE REASON FOR THE SEASON******
THANKS BE TO GOD !!!!!!!!!
Alison
Tuesday, November 15, 2005 7:51 PM CST
I just returned from a wonderful weekend spent with my sisters in Dallas. We were LONG overdue for “girls only” time. We shopped, ate, watched movies, ate, watched more movies, ate, looked at old pictures of us with big hair and braces, talked and did I mention we ate? There is nothing better than Tex-Mex, margaritas, and catching up with your sisters whom you love with all your heart. These are sisters that you share EVERYTHING with, call on the phone every day, and are your bestest friends in the world. Yes, friends may come and go, but great sisters you can never replace and will always be there for you. There are few that are lucky enough to have the kind of relationship we do. I am thankful for the gift of Stephanie and Michelle each day. It makes me sad to think that Addison will never get to have that relationship with her sister here on this earth. So, Stephanie and I decided that her daughter Sidonia and Addison are official sisters. Alexandria and Sidonia wanted to go to the same college so they could live together. However, we have not quite figured out how Addison and Sidonia are going to go to college together since they are 4 years apart. At least we have some time to figure it out, huh?
When I was flying there on Friday, which was Veterans Day, several thoughts came to mind and I jotted them down.
For those of us who do not have friends or family members in the Services, they are probably not always at the forefront of our minds, and that is a very sad thought. There are men and women who have fought for our freedom and most of us take it for granted……I know I sometimes do. So, we should probably have more than one day a year to remember those who gave each of us the right to go where we want to go and do what we want to do. Thank you to all the men and women who serve our country……for all you are doing here and abroad to keep us safe.
Then I began thinking that our country should have a day of recognition for our littlest soldiers. These are soldiers that fight the war not for rights, not the war on drugs, but the war on cancer. They should be our heroes too………
The Littlest Soldiers
The medals on our chests
Are port-a-caths for meds
Helmets won't stay on
'cause no hair is on our heads.
Our weapons of destruction
We take every day
We fight the battle within us
While we struggle on to play.
We fight with honor and courage
No marine could do as well
We are only little children
Living in this hell.
So bring on the medals
The Purple Hearts of Wars
The Gold Cross, The Silver Star
To place upon our scars.
For We are the Children of Cancer
No one has fought so hard
But every day we struggle on
Our life is our reward.
Author: Cheryl Jagannathan
Monday, November 7, 2005 10:19 PM CST
Five years ago today.....diagnosis day.....
Time flies
Time stands still
Five years. It was five long years ago this day on November 7th, 2000, when my daughter Alexandria was diagnosed with leukemia. It is amazing to me how my life is defined by several key moments in time. “Before diagnosis (b.d.),” and “after diagnosis (a.d.).” I miss things about that life b.d. I miss the innocence, or the ignorance, whichever you may call it, my life that did not include childhood cancer. The naïve life that did not see my child or other children suffering, or dying before my very eyes time and time again. The simple mind that did not understand cancer and chemo and BMT so well. Sometimes I just miss that person, and long for those simpler days. However, there are times when I am so incredibly thankful for the person that I have become…..the person that I have evolved in to. I have only God and my daughter to thank for that. You see, when Alexandria was diagnosed 5 years ago, Grant and I were believers. I was saved when I was 13 years old at a church retreat at Jekyll Island, Georgia called “Fun in the Son.” I still vividly remember the night when I asked Jesus to come into my heart. As long as I live I will not forget it. A life defining moment……the most important decision I could ever make. He has been working in and on my heart from that day until this moment. He won’t stop until I am with Him in Heaven. However, I feel like He has accomplished more in me in the past five years than all of my first years as a believer. I have grown more spiritually than ever before. Grant and I were both baptized and believed in the Father, The Son, and The Holy Spirit prior to our daughter getting sick. However, I don’t think we hungered for the Holy Spirit like we do today. I did not have that insatiable desire for more and more knowledge about our Savior like I do now. The past five years and all of the experiences it has entailed has transformed me. I am not just “a believer” anymore. That is not enough for me. The more I read the Bible the more I want to deepen my understanding of it, the more I want my relationship with God to grow. I want to learn more about where my daughter is and where I can expect to spend eternity as a Christian. 1, 825 days, and a great deal of life-altering experiences later, I still do all of the things I did before….I read the Bible, attend worship services, Bible Studies, Home Group Studies, and Christian concerts, it is just different now. It is done with a new appreciation and from a different viewpoint. My perspective seems to be so much more vivid and clear. I am much more thankful as a person and as a mom. I am much less selfish and much more compassionate. I am so thankful that He did not give up on me. He is such a merciful God and forgives me when I ask for forgiveness. How awesome is that?
In hindsight, I suppose I could have shut the door on Him…. believed that a loving God would never let a child suffer or die, or decided to be bitter instead of getting better and healing. However, to have gone in that direction (free will) would have been the exact opposite affect of what I believe God wanted for me and my life. He was showing me, showing so many of us, lessons we never would have learned if Alexandria did not take the path that she did. Are there some times I think quietly to myself that she paid a high price to show some of the rest of us the “BIG PICTURE?” Does it make me a little crazy when people are upset about the littlest things? I would be lying if I said “no.” But I do understand that until you have been given the clarity of what truly matters in life, your perspective may be distorted.
Here’s just a few things I have learned in the last five years:
People, in general, are good and are willing to lend a helping hand when someone is in need
No matter what I think, I am NOT ready for non-waterproof mascara, the tears still come without warning
Nothing is worse than hearing your children cry for their sister except for their father cry for their daughter
Writing down your thoughts and feelings is cheap therapy…….
THANKS CARINGBRIDGE !!!!
I can spot a shallow person from 5 miles away
I can sense a caring friend by the look in their eye
The best time to cry is in the shower….the tears just wash away
The people you can truly count on are not necessarily the ones standing by you when your loved one passes away, but the one’s standing by you years down the road.
True friends ask how you are doing, talk about your child, and truly still care
The only people who can 100 nderstand what you are going through are ones that have been there or are on the journey
Wherever you are at on the grief journey is where you are supposed to be, and it is okay.
God’s plan is perfect, He put you here for a reason, there is a greater purpose
Even though we cannot see all of God’s plan now, in time, on earth , or in Heaven, it will be revealed to us……..trust……..believe
Try your best to enjoy this day, it may be your last
Forgiveness is good, but just because you forgive a person in your heart and before God, does not mean you think it is healthy for you to include them in your life
Do not be so quick to judge those who are grieving. Unless you have lost a child yourself, you may not know what you would do under the same circumstances
Always carry Kleenex (even if you don’t need it that day, your great friends who are also grieving (Johnelle and Evelyn) may need it, and it is good to share !!!!!
No matter how much time passes, I will still miss Alexandria. I will miss her the rest of my life. I will never “get over this.” However, I know I have a guardian angel. I know she is waiting for me in heaven. She’s saving me a spot. In the meantime, while I am here on this earth, I know I need to continue her mission and her legacy to help other families who are going through what we have endured…….I believe that is part of God’s great plan too !!!!!
Thanks for stopping by and blessings to you all-
Alison
************************************************************************
Alison
Tuesday, October 25, 2005 9:26 PM CDT
(revised Wednesday, October 26th, 2005)
As I sit at my computer and type this now, my ears hear the most wonderful, most magical sound ….. a six year old girl, playing happily, not a care in the world. She has so much spirit in her, she is an “old soul” as some would say. She dances constantly, sings constantly. She is wise way beyond her years, and she can light up a room (or a stage) by her mere presence. She is quick with her wit, always on her toes, always carries a positive attitude…..sometimes to her determent. When things are going rough, her words are “Well, at least it’s not the end of the world” or, “At least no one died.” Such clear, yet somewhat sad perspective for such a young child. I wonder where she gets this from. She is the sister that Alexandria hoped and begged for, for so long. Perhaps she gets so many of her attributes from her older sister that she barely knew. They are not only sisters, but now, soul sisters. I think her attitude on life, to live it to its fullest, enjoy the moment, make the most of each situation, are lessons she teaches me, just like her older sister did. As much as one would think those lessons would be ingrained into my head, it is sometimes overshadowed by intense sadness that I feel from loss. It is hard to “savor the flavor” of life, when life is hard and the giant sized hole in your heart just won’t shrink. Time does not necessarily heal a wound, time just goes by, and only by the grace of God do we get through each day. I was brought to my knees today. I noticed something that I had overlooked for quite some time. Not to be graphic, but I saw in the mirror, a scar. The scar that runs from side to side of my stomach. It is from the C-section I had from having Alexandria. None of the other children were born by C-section, so it is the scar I bear from her, a sign on my physical body, of the precious baby that I carried within me for 8 ½ months. Although that scar is visible to the naked eye, the scars I bear from losing her, are not. They are scars deep within my heart. Scars that hurt far worse than any incision by knife. It is the pain and heartache that no one sees. Addison, and of course my other children, remind me to count my blessings. Sometimes I literally have to go to my foyer and read the beautifully in scripted sign, that says “Count your blessings” for it to actually sink in. I thank the Lord each and every day for each of my children and husband. They are the light of my life and what enables me to carry on. If it were not for the shear joy those children bring into each day, I don't know where I would be right now. They make me laugh, they make me crazy, they make me cry, but most of all they symbolize hope and that life can and does go on.
I know you will agree with me that I have no business doing this, but I have been viewing more video tapes of Alexandria. I know, I know, I am crazy. Actually, I have made it through many of them without shedding one tear. The kids and I gather around and watch as this amazing person, our hero, enlightens us with her charm, her wit, and her insights on life. The last thing I viewed, long after the boys had retired to bed, was a sweet, sweet song. Masterfully created, and sung by Alexandria, she accompanied herself on her guitar.......
(remember she did not know she relapsed or the seriousness of her situation when she made up this song on December 24th of 2002, however, her words clearly demonstrate her beautiful spirit)
Starlight In Heaven
After dark I looked out my window
For hopes and signs of Jesus
And all His Angel friends
I want to see Him one day
One day, when I went to bed at 12:00 midnight
I saw a wishing star
And made a wish that very night
I wish that I could tell you
But it’s already come true
I wished for everlasting happiness
And that’s what I got too
I’m glad I stayed up that night
Or I wouldn’t have seen that star
For Starlight that’s from Heaven
Is the BEST that there are !!!!!!!!!!!
After that wonderful song, she said, “ Thank you all, you all make me really happy.”
That’s when the tears came. Actually, believe it or not, tears of happiness, not of sadness. Addison wept beside me too as she watched her sister and I assured her that her sister was in Heaven and that we should rejoice. She agreed. What better place to be than with our Heavenly Father.
All you have to do is ask. It is a free gift. For you, for me. Just ask, and it shall be given to you. Ask Jesus into your heart and He will reside there forever and ever. He will never leave you nor forsake you and you will spend eternity with your Father, your Maker, with the Starlight in Heaven.
In Him-
Alison
Saturday, October 1, 2005 7:50 PM CDT
Wednesday, October 5th, 2005
Saturday, September 24, 2005 4:07 PM CDT
I feel lately I only update with bad news. Once again, I come to you asking for prayers for another child, another family. Jessica Johnson is at the PICU at Children’s hospital and it seems as if a miracle is her only hope. Her blood gases are not where they should be and her condition is worsening by the hour. Here is the latest update from her website:
Saturday, September 24, 2005 1:37 PM CDT
It is 1:40 on Saturday afternoon and Jessica needs a miracle!
Jessica's condition is now getting worse by the hour. The medical staff has provided wonderful care, but they are no longer providing any hope for recovery. The only chance now for Jessica is through a miracle.
I don't understand most of what this beautiful girl has been put through and I don't like it -- not one bit, but I do believe in and trust in God and know that a miracle is possible. Wherever you are, please stop and pray for Jessica and her family.
Right now, Vicki is at the hospital with a small group of closest friends and family. Kent and Jared are traveling back from Wyoming. They have requested a time of privacy and no additional visitors for now.
If you have any questions, you may call me at 314-406-8484.
Cindy
www.caringbridge.org/mo/jessicajohnson
Thanks to Eleasha for the beautiful unicorn background !!!!! I am not sure where she finds the time or energy to help us with Alexandria's website with the recent loss of Cody and all the other things she has going on.......but I am certainly grateful....for her, and for our friendship......
Wednesday, September 7, 2005 9:00 PM CDT
PRAISE THE LORD…….Hayden has felt good for a week now and I could not be more thankful. After feeling poorly for almost 3 weeks on and off, I am glad that it appears to have been a nasty virus that he had a hard time shaking. Although, I probably won’t be completely at ease for some time, as we know how these "things" can work.
As for my sister, she and her husband are doing well under the circumstances. Unbelievably, their home was still standing when her husband went back. They have no school, and all of the other schools were destroyed as well, so that is a great concern. They want their children to get back into school and have some normalcy in their lives. Many people in their town have lost everything, including family members, so it is important to keep perspective here. I am not sure whether or not my sister’s family will be staying in the area. Of course they are scared that this will happen again. They were going to try and come here for a while, but there is no gas to get here. They also do not want to be away from my sister’s husband as he must stay for a while to help on the medical front. It is all so unbelievable to me. I can sit here and watch it all on t.v. I can try to put the magnitude of it aside and allow myself to imagine if I was there, with my family, no food, no water, no shelter. I cannot. I cannot fathom how one survive’s. Even those that survived physically will be dealing with this for years..... financially, emotionally, spiritually. We all take for granted that we can go to our refrigerator’s and there is typically an ample supply of groceries. We have clean water to drink and bathe, a house to provide shelter which is comfortably cooled by air conditioning on hot summer nights. The rest of the country sits by helpless as to what we can do other than giving to important places such as the American Red Cross. The destruction of hurricane Katrina is beyond most of our abilities to comprehend and is truly a disaster of biblical proportions. Please keep all of the people in the affected states in your prayers.
Please also keep in your prayers Jessica Johnson as she is still in the PICU and still has some very serious issues.
www.caringbridge/mo/jessicajohnson
Also keep in your prayers Cody’s family as they are facing these extremely difficult first few weeks without him. Guestbook entries have subsided somewhat and that is hard. I know people are still checking on them religiously, but it is so comforting when the messages of support and concern are being conveyed to the newly bereaved.
www.caringbridge.org/va/cody
Please also keep my dear friend and decorating partner, Evelyn in your prayers as her husband Gregg has taken a job in Houston and they will be moving there. It is going to be difficult for them to leave St. Louis where they have so many friends that love them and was also Sarah’s last home. The boys were so sad when I told them that their friend Adri, Sarah’s sister, would have to move.
www.caringbridge.org/mo/sarahsmiles
In Him-
Alison
Wednesday, August 31, 2005 11:04 AM CDT
*****UPDATE Thursday September 1st*****
Please lift up in prayer Jessica Johnson who is in the PICU of St. Louis Children's Hospital, suffering from GVHD, a blod clot in her liver, fluid around her lungs, and a fungal infection.
Please pray for John and Johnelle Rhines who are headed down to Children's as I write this. It will be most difficult for them I know, but they are so strong and I know they will be able to comfort Jessica's family, as they have been comforted in the past.
Please pray for a miracle for Jessica that she is able to pull through such a difficult time.
www.caringbridge.org/mo/jessicajohnson
I know that many of you come here and are getting REALLY tired of not seeing an update. (Hey, if you think I am a slacker, note that the pictures have not been updated since Christmas, which is Grant's responisiblity)
Actually, I hesitated to write earlier but it has been a difficult few weeks. I have spent much of my time reading the Bible and on my knees……
For the past two and a half weeks Hayden has
Lost 6 ½ lbs.
Been nauseous on and off
Had leg pains
Headaches
Bloody noses
Has not eaten much
Had fevers
There have been days when he felt fine, other days he was pretty miserable.
I know that every caringbridge family, and those who know us, just felt as ill as I have felt for the past few weeks. These are the classic symptoms for leukemia and are exactly what Alexandria experienced. I have taken him to his pediatrician and his blood counts look normal thus far except for high neutrophils/segs (75 which means he is probably fighting an infection. We do know several people that have been diagnosed with normal counts and so of course, that concerns us. The possibilities are endless….a virus, viral meningitis, etc etc. One of the risk factors for developing leukemia, although only 10(love those statistics) is having a sibling with cancer. I sat here with my logical mind and explained away every single symptom; football practice, leg aches, stomach bug, fever, lack of eating, therefore nausea, headaches and weight loss….and the next moment I prayed with all my heart which was terrified and was beating rapidly. I prayed time and time again in the name of our Lord and Savior that Hayden had no illness that is not easily treated. It is hard to live without some amount of fear for our other children after what we have been through.
Last Thursday, he had a horrible evening with an intense headache which literally brought him to tears. My fears intensified instead of dissipated. While we were laying in my bed, I prayed with him that he would be healed and his pain would go away. He turned to me as he was stroking my arm and said, “If someone goes to our church and dies, are they buried behind the “Y.” Our church meets at the YMCA. Imagine my shock. I was speechless and held back the tears. I said, “No, someone that goes to our church would be buried at the cemetery.” I was afraid of the line of questioning that could follow and turned our conversation quickly to another topic. He has NO idea how worried Grant and I have been. Remember, we are non-award winning actors. We mastered that skill in the year 2000. I wonder if he remembered all the times that we prayed over and with Sissy for her health, and it scared him that I prayed for him when he felt so awful. After feeling bad off and on for 2 ½ weeks, missing several days of school, he has felt better now for a few days….PRAISE THE LORD!!!! I am cautiously optimistic. We are going to do a repeat CBC if any of his symptoms crop back up in the near future. I am hoping there is NO need for that. I will keep you posted.
Cody James Hoffman. A sweet, precious Child of God, went home to be with Jesus almost two weeks ago. I am friends with his mom Eleasha. We have kept in touch over the years since Alexandria was very ill in her last months of life. It breaks my heart that children are still losing their battle to the “good” kind of leukemia, A.L.L. THERE IS NO GOOD KIND OF LEUKEMIA !!!!!! There will be a Celebration of Life for Cody here in St. Louis and anyone interested in coming to show their support for this family, I would encourage to do so. Please continue to keep this family in your prayers as the shock wears off, and the reality and finality of it all sets in.
To see over and over again so many children suffering and fighting for so long takes its toll, and quite frankly, I am just sick of it.
MORE RESEARCH NEEDS TO BE DONE…. THE AWARENESS FOR CHILDHOOD CANCER NEEDS TO BE RAISED !!!!!!
The media is constantly talking about breast cancer, and every other cancer, and while that is important, it is also important to note that many children are dying every single day of cancer. When is the last time you saw something on the news about kids with cancer? There are very few childhood cancer awareness campaigns. The incidence of childhood cancer has risen SIGNIFICANTLY over the years. These are helpless children who must rely solely on their parents and doctors for treatment. You would think as a society, we would place more importance on helping these children. Instead, plans are in the works to cut spending as noted by Curesearch……
“We recently received notice that, due to budget cuts, National Cancer Institute funding for childhood cancer research through CureSearch COG will have an additional reduction of about $2 million dollars this year.”
How is it possible to CUT research dollars, when funding is lacking as it is !!!!!????
The whole thing is a mystery to me, one that I wish President Bush, who lost a sister to leukemia, would address to all these families who have a child with cancer or who have lost a child.
On another sad note, my sister Stephanie, husband Phil and their children, Sidonia and Sheldon, live in Ocean Springs, Mississippi. This is RIGHT next door to Biloxi/Gulfport which took the brunt of the hurricane Katrina. They did evacuate safely, but we fear that their home, Phil’s medical office, and the kids school were destroyed. They have not been in touch with several friends who decided to “weather the storm”, and we are all concerned for them. Although material possessions seem insignificant at a time like this, photographs are one thing that cannot be replaced or replicated. If their house is flooded or destroyed, this would be a reality. The devastation in that area is immense and unprecedented. Viewing CNN or the Weather Channel, one only gets a small glimpse of what the people of Louisiana, Mississippi and Alabama are enduring. The conditions are unfathomable. Lack of shelter, food, water…. I cannot even imagine what they are going through…the fear, the anxiety, the sense of loss must be overwhelming. My prayer for them is that the water recedes, they are able to begin the healing process and some day, are able rebuild their cities. It is all so tragic.
August 6th was Alexandria's 12th birthday, and the 3rd one she celebrated in heaven. That fact is hard to believe. It was a difficult time to get through as usual.
Kailie's one year Angelversary was August 15th...yet another sad day.
Well sorry to be all “doom and gloom” here. I am all for erasing this trying month. Hopefully the next time I update I will have better news to report. Until then, I will keep my eyes on Jesus and my heart filled with hope. Some day, we will not have to endure any of these horrible things anymore. For if you are a believer, you know that it will be heaven on earth, and you will have won the ultimate gift…..eternal life.
The Lord of the Journey
Lord, I come before You tonight,
Heavy of heart and weary in soul.
This road we are walking together
Just seems to keep going on and on,
A continual, arduous climb.
I find my feet stumbling on the rocks,
My body crying out with exhaustion.
But each time I fall, You gently pick me up
And encourage me to keep climbing.
You hold my hand, pulling me over the roughest spots.
You carry me lightly when the path all but disappears.
I look up now and again,
Surprised at the heights which we have traversed,
Awed by the view of the great expanse.
The top of the mountain is yet wreathed in mists,
Hidden away from my eager eyes.
I know not how far or how steep
The rest of the journey will be,
But I know that even here on this tiny piece of cliff
That I can find joy enough to dance before You,
To raise a song of worship and of praise.
The very rocks themselves join in the chorus,
Singing forth the song that is older than they.
You are the Lord of the journey,
And I place my trust in You
Thanks to Eleasha for putting together these pictures of Alexandria for the homepage. In all her planning for her Cody’s funeral and Celebration’s of Life, I am not sure where she found the time or energy to do it, but I am very grateful !!!
Wednesday, August 17, 2005 10:58 PM CDT
Bear one another’s burdens and in this way you will fulfill the law of Christ.” Galatians 6:2
God is the Curegiver
“Come to me, all you that are weary and are carrying heavy burdens, and I will give you rest.” Matthew 11:28
“Pray without ceasing"
1 Thessalonians 5:17
I have much to say, and many updates, however, all that is important to me right now is that we focus on a child and family who desperately need our prayers. Here is a recent excerpt written by his mom from his website so that you will know the situation…….Please pass the website along to other prayer warriors…….
www.caringbridge.org/va/cody
IF TOMORROW STARTS WITHOUT ME..........
Journal
Monday, August 15, 2005 10:15 PM CDT
I wanted to take the time to update before I went to bed...
The news today has been devastating...the doctors have told us that the disease in Cody's lungs, coupled with the renal issues are just too much for his little body to handle...
They have told us that there is nothing else they can do...
We have discussed this in great detail witn the PICU doctors, Dr. Owen and with Dr.K...the PICu team feels that our best efforts will only gain him a few extra days...the disease is just too great...
Dr. Owen has asked that we allow Cody to receive the next dose or two of Ontak (the experimental drug) on the outside chance that it may be able to miracuously turn him around...we have agreed...and we are hoping beyond all hope that this will in fact be the healing hand of God...
Our families have begun making their arrangements to come into town...my mom will be here tomorrow...Cody's dad will be here in the next day or so...
If nothing changes, we will be making the decision to remove support on Friday or Saturday...
In all of my life I have never had to face anything so horrible...and in all of my life I never thought I would know what it was like to endure such an enormous burden...that I would feel so much grief...that I could love someone as much as I love this child...
My heart is broken...my spirit is screaming in agony...my soul is crying out for mercy for my child...my life will never ever be the same...yet I wait and hope in the Lord...
I am forever praying that the Lord will heal Cody here with me...as selfish as that is...for the glory of heaven is a far better place...
Please join me in prayer for this precious child……..
In Him-
Alison
Monday, July 11, 2005 11:14 PM CDT
If pink roses grow in Heaven,
Lord please pick a bunch for me,
Place them in Alexandria's arms
and tell her they're from me.
Tell her that I love her and miss her,
and when she turns to smile,
place a kiss upon her cheek
and hold her for awhile.
Because remembering her is easy,
I do it everyday,
but there's an ache within my heart
that will never go away.
It is good to be home and away from the shark-filled, hurricane ridden waters. Each time we are driving back from Destin, I think to myself and wonder why we are living in land-locked Missouri? Well, I suppose there is a price to living in paradise as many Floridians are finding out the hard way. I feel so bad for those in the path of yet another violent hurricane, less than a year from the last one. My heart also goes out to the three families’ who had encounters with sharks recently. The 14 year old girl was killed less than a mile from where we stay. Needless to say, my sister and I were on “red-alert” for fins in the area where our children played. Shark attacks have been in the back of our minds for several years since Jesse Abrogast, (the young boy from my sister’s town of Ocean Springs and attends the church where her children go to school) was attacked and lost his arm. He is alive, but suffered significant brain damage due to blood loss. His quality of life is much different than before.
For those who have been with us for awhile, you will also remember 2 years ago when a bull shark swam VERY close to Grant and Hunter. Everyone was on the beach screaming “shark ……SHARK !!!!!” Everyone ran out of the water, but MY hubby decided not to make any sudden moves and lure him closer. It all happened in slow motion. On the one hand I was extremely annoyed that he had my son with him and did not make a b-line for the shore, on the other hand, he is still here to tell the story, so how could I be mad ?!?!? With two ultra-paranoid mommies, let’s just say that this trip was all about the SANDCASTLES on the beach and not the sand dollars in the ocean.
It is always bittersweet for us to be in Destin, the place Alexandria loved so much.
The beach, the ocean…..heaven on earth for us, and I am sure her heaven each and every day now.
I will update more soon but I did want to leave you with a website. I have posted it here before but for those who have not seen it, I thought you may enjoy it. It was made for Alexandria and our family by a group of “Angels” at Quilts of Love. I had not looked at it for some time, and of course, the tears come so quickly, so easily, viewing it tonight.
www.quiltsoflove.com/memorials/alexandria/alexandriamem.htm
then scroll to the bottom and look at “Alexandria’s quilt”
In Him-
alison
Tuesday, June 28, 2005 10:05 PM CDT
Here is a song by Natalie Grant on her new CD “Awaken”
It is played on many Christian radio stations. It is about the worst thing imaginable happening, the loss of your child, yet somehow, someway, you survive…..
How?
Just like “footprints,” Jesus holds you and carries you when you are suffering
HELD
Two months is too little
They let him go
They had no sudden healing
To think that providence
Would take a child from his mother
While she prays, is appalling
Who told us we’d be rescued
What has changed and
Why should we be saved from nightmares
We’re asking why this happens to us
Who have died to live, it’s unfair
Chorus
This is what it means to be held
How it feels, when the sacred is torn form your life
And you survive
This is what it is to be loved and to know
That the promise was that when everything fell
We’d be held
This hand is bitterness
We want to taste it and
Let the hatred numb our sorrows
The wise hand opens slowly
To lilies of the valley and tomorrow
This is what it means to held
How it feels when the sacred is torn from your life
And you survive
This is what it is to be loved, and to know
That the promise was that when everything fell
We’d be held
If hope is born of suffering
If this is only the beginning
Can we not wait, for one hour
Watching for our Savior
This is what it means to held
How it feels when the sacred is torn from your life
And you survive
This is what it is to be loved, and to know
That the promise was that when everything fell
We’d be held
Thank you for coming here today and visiting. I know I have truly been “HELD” for almost 5 years now…..by Jesus, by all of you……..
I know I keep saying that I am going to update more frequently, however, life just seems to keep me very busy and I don’t always have time to write. Keeping busy is a good thing until the mind finally catches up with you. Then you are forced to go where you have put off going. Unfortunately, there are SO many kids that are sick that I follow regularly, that by the time I go to there websites and check on them, there is no time left for updating Alexandria’s page. However, I am always amazed that we still get around 1,000 visitors a week here. Either that, or a handful of you are coming here a WHOLE lot !!! Well, we always have, and always will, welcome “stalkers” (a term Grant affectionately coined). That means that people still care about us and people still remember our beautiful daughter. That is so incredibly important ……that people remember her, talk about her…….say her name. Grieving parents, just want people to remember our child, keep their memories alive, because they are not here to make any more memories. If you cannot have your child with you physically, you at least want their memory to be kept alive and for people to not forget them.
Most of you that have been following us know that this grief journey, like Alexandria’s cancer journey, is a bit rocky at times. Some of what I share here is extremely personal. However, having this website has been good therapy for me as well as many other caring bridge authors. It affords me the opportunity to vent without repercussion. Thank you for allowing me to sit on my "pity porch" on occassion. I have good company there from other grieving parents from time to time, and rightfully so. If I do seem down at times, this is just how I am feeling at that particular moment. It does not mean that I am not “doing well.” Grief work is tough work, the toughest I will ever endure. I continue to plug along at this journey. Most of the time I feel like I am moving forward. I am able to laugh, smile, enjoy my children, enjoy life, something I was unable to do for a long while. There are still times I feel paralyzed with sorrow for my loss, and for others'. I recognize that both are equally healthy and all part of the process. When another family has to experience pain, loss and grief it is always difficult for me. One year ago, we began a journey with the Rhines’ family. Some of the details, I once again, conveniently block out of my conscious mind. On other days, I think about Kailie many times. I reflect on the time I was privileged to get to spend with her. I think about her tough battle and all that she endured. I think about her love for Jesus and willingness to spread God’s word. I marvel at how she led several young one’s to Christ. I am so thankful that I got to know her and her family better. I am a better person because of her, because of them. What a blessing they have been in our lives. I think about John and Johnelle experiencing all those horrible “firsts” and my stomache turns. There have been/will be a series of birthdays (including Kailie’s 14th birthday this Friday, July 1st) and other anniversaries until August 15th , when Kailie went home. Please continue to pray for them as I know they greatly appreciate it.
Several times a week I open my e-mail only to see a “sender” whose name I do not recognize. In that message is usually a lovely note from people all across the country, even the world. Most of these individuals we will probably never meet in our lifetime, yet they take the time to write to me. I am so thankful for each of these people and their words which are such a comfort to me. I save each and every one of these messages. I am just waiting for my internet provider to tell me that 1200 e-mails in my Inbox is way excessive. I just cannot delete them because I am so grateful for them. I often go back and read them again months later, that is how much they mean to me. The fact that anyone we do not personally know would take the time to write and tell me what Alexandria has meant to them, just astounds me. Thank you to friends near and far who still care and take the time to share it.
We are off to visit with my sister for a week or so for a little R&R before we gear up to begin planning for this years Alexandria’s Angels Foundation fundraiser.
Until we meet again-
alison
Wednesday, June 15, 2005 9:37 AM CDT
It matters not how long the star shines
What is remembered
is the brightness of the light
I apologize for not updating sooner. As per usual, things have been absolutely crazy around here. I had three display homes that I began as soon as we got home from Disney. Thankfully, my trusted partner in decorating crime, Evelyn, agreed to help me with her time and talents once again. We worked into the wee hours of several mornings, but the houses are nearly complete and we are glad to be finished with the project. Kudos to Evelyn who had to endure the “steroid ridden Alison” for several weeks. While we were in Disney, I came in contact with something (poison ivy, poison oak, something that the skin on my arms had a severe reaction too, or I got a severe sunburn on my arms, we are really not sure.) Anyways, the pain was intense, I could not bend my arms very well, I could not sleep, they were blistering and bleeding….not pretty….not fun. The dermatologist had given me some ointment to put on them and then I had an allergic reaction to that…….double the fun !!!!!! I have used Bactroban and Neosporin in the past but for some reason had a reaction this particular time…..lovely…..and not the best timing. So, she prescribed prednisone, 20 mg. 3x daily. That just happened to be the same dosage Alexandria was on. The dermatologist started to run through the massive list of steroid side effects when I assured her I was well aware of all of them and then some. However, I was not prepared to get that prescription. I was not prepared to open that bottle and see those orange tablets. Who would think that something like seeing prednisone would send me reeling into a hysterical fit of crying. Upon entering your body, prednisone makes you emotional and weepy. It makes you eat. It makes you jittery….makes you feel like you are going crazy. And now I know first hand. Two short weeks….14 short days, I took the dreaded prednisone. Now I know a little, tiny bit of what Alexandria went through on a regular basis and it made me even more sad. I think it is true that until you are put into a particular situation, you can not truly appreciate it. I cried on several occasions on the days that followed. I cried for what she had to endure and what she had to overcome. I cried for how brave and strong she was. I cried for how weak I was. I cried because I was so disappointed in myself. Every single day of her life for years, Alexandria dealt with pain, the effects of steroids, chemo, radiation, having no hair, not being able to go to school, living at the clinic and hospital. The list of negatives is endless. She had to be in a drug-induced emotional and physical hell yet she did not complain. She plugged along in her life and her protocol and trusted that she would get better. She did that because she had faith in God, faith in her mommy and daddy, faith in her doctors and nurses, that we could all make her better. She accepted her life as it was….a child with cancer and all that it entailed. And here I was, just those few short weeks, being a big, fat baby on steroids. I know I was on an emotional roller coaster from those stupid steroids and I was happy to complain, moan and groan, just ask Grant, my sisters’ and my close friends. I would close my eyes and think of Alexandria looking down from heaven saying, “Mommy, come on, you have got to be kidding me, toughin’ up already.” Then I would be smiling and crying all at the same time. That is why Alexandria is now and will forever be, my hero. Because she just accepted the hand that was dealt to her and went on. She did not gripe about taking more medicine than you and I will take put together in our lifetimes, or going to the hospital yet again, or getting ANOTHER spinal tap, or blood draw. I do not know where she got her strength only that she was given enough to get me through that time too and I am thankful to God for it. In fact, I am sure it was from Him. I will always love that child more than life itself, I will always be proud that I was her mommy, I will always be thankful for nine and one half years with her. After two years and four months since she went to heaven, I only miss her twice a day now……all day, and all night.
-alison
Please keep the Rhines family in your prayers as it was one year ago this week that they found out that Kailie had relapsed and that she also had HLH. I know this week and the weeks leading up to her "Angelversary" will be difficult.
-Disney update coming soon-
Thursday, May 19, 2005 9:45 PM CDT
Just got home from a week-long, fun-filled, thrill-seeking, over-sunning, over-eating, Mickey and
Minniepalooza........will update soon, from the laundry room........
Alison
Monday, April 25, 2005 10:39 PM CDT
Update Wednesday April 27, 2005
It is with a heavy heart that I share the news of yet another loss in just weeks. Lexy Flory earned her angel wings early this morning. Please lift her family up in prayer and visit her website and let them know you are thinking about them.
www.caringbridge.org/tx/alexiaflory
Sorrow looks back,
Worry looks around,
Faith looks up….
or so the saying goes….
I am not so sure that sorrow always looks back, I think it looks back, forth, up, down and all around, depending on the day, of course.
Faith most definitely looks up to God… for when we are in a state of despair, hopelessness and helplessness, there is one thing and one thing alone that can see you through. For in the valley there is but one glimmer, one pinpoint of light that enters into the darkness of your broken and shattered heart. That ray of hope is Jesus Christ who died and rose again. He is the comforter over all loss, all suffering. He understands the weight of this burden that so many of us carry during the loss of a child, yet, I do find myself, at times, feeling a bit overwhelmed with the suffering of others. My routine has not varied too incredibly much over the past five years. Each day I go to certain caringbridge sites of children who need a few extra prayers. I like to pray for each one of them specifically and it helps me to see pictures of them. I know many of you in "caringbridge land" do this as well. I know what a true Godsend it was for me to know that we were being covered in prayer when Alexandria was so sick and I want to do that for others. I will say, honestly speaking, as I am sure of you faithful caringbridge followers can confirm, that it does get to be a bit much at times. The news is not always what we hoped and prayed for. I know it is God’s will and not my own. However, I do feel a tremendous amount of sadness for the pain that I know other families are most certainly going through. I am sure that some of you may think how can she be so upset about Molly’s family from New York, or Lexy’s family in California, she has never even met these families. Well the truth is, once you have been inducted into this little “club” that none of us wanted to be a part of, you can empathize with other parents who are going through it, and it is hard not to be sad FOR them and WITH them, if that makes sense.
While the Jones’ family was losing Benjamin, I was laying in bed with Hayden and we were both sick as could be with a lovely 5-7 day stomach bug. As sad as it sounds, I kept thanking God for it. I thanked Him for that time I got to spend with my son. Although we felt bad physically, we got to snuggle a great deal, and I would not trade it. I knew that Anne was watching her son slip away before her eyes, and she was helpless to stop his destiny. I wept for her and what she was enduring and thanked God that for this moment in time, all of my children were healthy or eternally healed. Hunter, then Addison, then Grant followed with the sickness. More time for snuggling up with children. I was exhausted from lack of sleep, lack of hydration, but we were all here, all a family, all “healthy.”
I cannot begin to fathom how Molly’s (who has leukemia) mom, Donna, is functioning these days. It has been just three weeks since her husband Roly was killed at the train station in New York. How do you explain this to your children? How? My guess is that Donna is not even remotely aware of her own inner strength, faith, or whatever coping skills she is using, because I don’t know if I would have been able to make it out of my bed yet. She has had to take her daughter to the hospital and clinic many times and she probably has been so busy and sleep-deprived that she has not been able to take everything in. I am sure it is a self-preservation mechanism. I know it is foolish to think that there is some kind of “quota” out there for bad things happening. I am sure that God is not sitting up in heaven with a large notebook and deciding who gets one big trial in life, who gets only small ones, who gets to sail through life unscathed, who gets lots of "whoppers" to test their faith. I am confidant is does not work like that. I will trust that our sovereign God knows exactly what He is doing, but I would be lying if I did not say that there are times that I have got to get right down on my knees and ask for peace that surpasses all understanding. There are load limits to everything…and what is the breaking point? For each of us it is different. How each of us will react to these “whoppers” are very individual. Donna’s testimony, having survived such grief, will be great and a wonderful reflection of Jesus in her, but the process she must endure getting to that point is not without great hardship. Please continue to lift this family up in prayer and leave messages in the guestbook. I know she appreciates hearing from people and it does not matter if you know the family or not, it is always comforting to know that someone out there cares.
It gives me great peace that the sorrows of this earthly life will not last forever. I hold within me, deep within my heart, the promise of the glory yet to come because He has prepared a home for those who believe and follow Him. In the Praise and Worship sevice we attended recently, we looked at Romans 5:1
Therefore, since we have been justified through faith, we have peace with God through our Lord Jesus Christ, 2 through whom we have gained access by faith into this grace with which we now stand. And we rejoice in the hope of the glory of God. 3 Not only so, but we also rejoice in our sufferings, because we know that suffering produces perserverance, 4 perserverance, character; and character, hope. 5 And hope does not disappoint us, because God has poured out his love into our hearts by the Holy Spirit, whom He has given us.
In our small group, I was saying that I believe you are much more likely to grow in your faith in the valley than on the mountain. I think it is only in the valley that you can learn certain life lessons. Others can also be brought to Christ when they see that God carried us through our mournful season in the valley and guided us to higher ground. It is so easy to praise and thank Him when life seems to be rolling along smoothly, no bumps felt or in sight. However, how often do we (me included) thank Him for our pain because it will enable our faith to grow stronger....others faith to grow stronger or encourage others to follow Him? We would probably not volunteer to be included on the "Pain and Suffering" list if God left it up to us. Let’s face it, we would all say, “sign me up for the easy life please.” But it does not work like that, so we have to take whatever we cannot understand and turn it over to Him in prayer. As hard as it is, we must ask for His help to accept our circumstances/His plan and then fix your eyes on Him….there really is no other way, in my opinion, to survive the loss of a child. This is not to say that we are to ignore our pain and not deal with the reality of the situation. I just know His mercy is strong enough to heal me. I don’t pretend to have all the answers or even a fourth of them, I do not know how some survive such horrific life experiences like the little boy in Hunter’s grief group at school who lost his father and several siblings in a carbon monoxide accident and only he and mom are left……how do we explain this, how do we understand it……
.we don’t… we pray for peace the surpasses all understanding..
Be quiet and know I am God
PSALM 46:10
I will make an agreement with them that will last forever. I will never turn away from them. I will always do good to them. I will make them want to respect me so they will never turn away from me.
Jeremiah 32:40
Blessings-
Alison
Thursday, April 7, 2005 4:24 PM CDT
What an absolutely crazy week last week was. The kids were on Spring Break so I decided to work from home instead of working at the office so I could spend some much needed time with them. It was great to just hang out with them and catch up with their lives.
Monday Blaze went in for a little elective surgery. He got a little nip here, a little tuck there. He basically got a massive, permanent, manicure and, well, there will be no baby Blazes’ running around. Bailey could not be more content as she was just about over his shenanigans and being terrorized by him. He recovered quickly and I am quite sure that Bailey got the last laugh.
We took our kids and Adri bowling and out to dinner and had a great time. Adri even beat Mr.Grant and I the first game. She then let us in on her little secret that her uncle owns a bowling alley…..the truth come out !!!!!!
Tuesday brought about many emotions as I could somewhat sympathize with Terri Schiavo’s parents. Although I cannot relate to their exact circumcstances, I do know what it feels like to watch a child cling to life, to drift from this world to the next and it is painful to think of the extenuating circumstances surrounding this particular family. My heart goes out to these parents and all that they have endured in the past 15 years and especially more recently. No parent should have to go through that. No parent should have the decision taken from them on whether their child lives or dies. That is a WHOLE other subject, with many people disagreeing on and one that I won’t debate here tonight. However, it is one worthy of careful consideration. It needs to be discussed so that your family knows of your wishes should a similar situation arise.
We went to the zoo and it was a beautiful day. Half of St. Louis had the same idea. I actually did not know until Jan Livingstone (Andy, Gabby and Peter’s mom) put in the guestbook entry that we were in the St. Louis Post Dispatch. We were interviewed about the great weather that day, but I did not think the reporter would actually USE our quote!!!!
Wednesday was Hunter’s 10th Birthday !!!!!!!! It was a happy and bittersweet day. Our first child to turn ten on this earth. We went to Chevy’s with the Riendeau’s (Julie turned 8 years old….Happy Birthday Julie!!!) and then had a sleepover.
Thursday a group of us went to the Mercy Me, Jeremy Camp concert. There were two other Christian rock groups, The Afters, and Monk and Neagle. They were all amazing !!! Monk and Neagle sing “Dancing With the Angels.” There were many of us shedding tears while they sang that song….it is so beautiful. I close my eyes (except when I am driving of course) every time I hear it, and picture Alexandria….dancing with all of the other angels. What an awesome sight. It was great to hear them perform live, all of the songs that I have listened to so many times before. I got to meet them and get autographs that afternoon at One Way Book Store. They had partnered with “Baskets Of Hope” which is an organization that delivers baskets filled with goodies to children diagnosed with life-threatening or terminal illnesses at Cardinal Glennon Children’s Hospital. They were accepting donations on their behalf, and we donated Christian books, cd’s etc. to give back to an organization that had given to us in our darkest hour. Andy Benes, pitcher for the Cardinals at the time, delivered one of these baskets to Alexandria’s room at the clinic five days before she passed. She did not know who he was, or the amazing pitcher he was. None of that mattered to her. She thought he was a nice man (a nice, tall man), who brought her a basket filled with lovely things. She was in her own battle though….the battle of life and death. Fame, fortune, and pitching perfect games are of little significance to a young girl who has cancer. However, he was genuinely interested in her. He inquired about her and her status through me and was concerned about her condition. He even sent us a card after Alexandria passed away and we were so touched. That day he said that he had four children and you could see in his eyes what was going through his mind. It was just like that song Mercy Me sings “I Can Only Imagine.” This song is one of the best songs I have ever heard and evokes such incredible emotions in me every single time I hear it. It talks about when we get to heaven and meet our Maker, what will our response be, what will we do?”
I can only imagine
When that day comes
And I find myself
Standing in the Son
I can only imagine
What my eyes will see
When your face is before me
I can only imagine
I can only imagine
Surrounded by your glory
What will my heart feel
Will I dance for you Jesus
Or in awe of you be still
Will I stand in your presence
or to my knees will I fall
Will I sing Hallelulah
Will I be able to speak at all
I can only imagine
I can only imagine
Well, I cannot say for certain what I will do when I get to heaven……I can ONLY imagine. My first thought would be that I would want to sit down and have a long talk with God and get some answers. However, I am sure that it will be such a GLORIOUS occasion, that when I do arrive, the answers to all my earthly questions won’t even matter to me anymore. I do think that after I meet my Maker I will quickly run into Alexandria’s arms and I will hold her tight and I will never let her go….for this time it will be for eternity.
So many people make the statement to me on a regular basis,“I can only imagine what you all have been through and what you continue to go through since Alexandria’s passing.” I am not offended by the comment in any way. Of course they cannot imagine. It is every parents’ worst nightmare and it is my wish that no one would have to endure this kind of pain. It is all relative though, just as I cannot fathom the pain of the mother who has lost two children. Whenever I reflect on my loss, I think about Meghan’s mom and dad or Noelle and Nicholas’ parents. They had to bury two children within months of each other. I can only imagine the overwhelming emotions of the parents who must take their child off life support, or send their child off to fight a war, not knowing if they will ever return. I can only imagine witnessing a tragic death or accident and deal with those haunting images for the rest of my life. I can only imagine how horrific it would be if my child was kidnapped and I was living my life wondering if they were somewhere out there alive. I can only imagine the pain that Shana felt when her 28 year old husband died of lung cancer and her four year old daughter battles a rare cancer as well. I can only imagine the daily stress of the Ballard family having two children with cancer and on steroids at the same time (YIKES !!!).
I can only imagine the despair of Donna from N.Y. just coming back from their Wish Trip to Disney because their daughter Molly has leukemia, only to have their daddy go home to heaven the next week in a freak accident at the Subway. We cannot even get our minds around these things, to begin to understand unless we ourselves have been put in that position. The pain, the multiple losses, the suffering…… even with the loss of one of my children, I know that others’ have faced far worse circumstances. I don’t ask “why” anymore. The answer is not always revealed to us on this earth….or at least we don’t always see the answer. I don’t even think we are always supposed to figure it all out. We are to trust in the Lord with all our hearts. Christ suffered. He died on the cross. For you. For me. Mary suffered emotionally as she watched her child suffer physically. GOD UNDERSTANDS OUR SUFFERING !!!! He does not wish suffering upon us, only that we will go to Him during our trials, hardships and sufferings. We have to lay all of our troubles, our burdens down…..right at the foot of the wondrous cross because there is NO other way. I know this sounds so easy, so simple. I know I am two years into my grief journey, so trust me, I am not saying to the newly bereaved, or those going through difficult times that this is a simple, painless process. It has taken me a long time to get here….and I am still on the road. I have not graduated to the highway, I have just barely made it on to the paved road from the slippery gravel. There are days when I feel that I am still on unstable ground. There are times when I weep uncontrollably for other families and my heart aches for what they are enduring because I know. I know what hurt and devastation they are experiencing. However, little by little, step by step, I have traveled on this grief journey, that will ultimately last a life time, with my eye on the ultimate prize…..Jesus, and the promise of spending eternity with Him and a precious little girl named Alexandria.
Thanks be to God-
Alison
I do not know what the future holds
Of joy or pain
Of loss or gain
Along life’s untrod way;
But I believe
I can receive
God’s promised guidance day by day;
So I securely travel on.
And if at times, the journey leads
Through waters deep,
Or mountains steep,
I know this unseen Friend,
His love revealing,
His presence healing,
Walks with me to the journey’s end;
So I securely travel on.
-Author Unknown
Please pray for Benjamin and the entire Jones’ family as they spend their final days with him. Please pray for strength and comfort for Anne as she deals with the enormous range of emotions of losing a child and also carrying a child as well. Please pray that Benjamin is peacefully carried by angels to heaven with no pain and no fear. This is a very special family with a very special son. I have become close to Anne over the past few months and I know how much they appreciate all the support they are receiving via caringbridge visitors.
www.caringbridge.org/oh/benjaminj
Update evening 4-7-05:
It is with a heavy heart that I share that Benjamin Michael Jones went to be with Jesus this morning. I am sure he was greeted by Alexandria and the ever growing "Welcoming Committee" of Angels.
Also continue to pray for Lexy and her family. Lexy just got back from her Wish trip. They too have run out of treatment options for her neuroblastoma. Lexy is a beautiful little girl on the inside and out. Please visit her at:
www.caringbridge.org/tx/alexiaflory
Please keep in your prayers Molly and her mommy from New York. Molly has leukemia. Her daddy fell off the Subway platform in New York and was killed. The could certainly use your prayers and support. Please visit their website at:
www.caringbridge.org/ny/mollyg
I hope no one took me seriously when I said I was going to make my updates shorter !!!
Thursday, March 31, 2005 2:18 PM CST
EASTER SUNDAY ....HE IS RISEN !!!!!!!!!
HUNTER HADDOCK TURNED TEN BIG YEARS OLD YESTERDAY !!!!
HAPPY BIRTHDAY HUNTER GRAHAM HADDOCK !!!!
Tonight, Grant and I, and a group of others are going to the Mercy Me, Jeremy Camp concert, and two other Christian Rock groups and we all could not be more excited !!!!
Will update soon ....
God Bless Each of You-
Alison
Monday, March 21, 2005 8:08 AM CST
I don’t even know where to begin. So much has happened in the past few weeks since my last update. I have spent a great deal of time with Evelyn Johnson, mom to Adrianna and Angel Sarah. She helped me with the display homes I was decorating and we worked closely together for weeks. Don’t even ask her if she is sick of me ‘cause I KNOW she is….she would have to be. She was not just my helper, but my friend, crying partner, confidant, window treatment maker, measurer, snack provider, diet coke break buddy, and basically my brain much of the time. It is quite comical to be on one of our shopping sprees or decorating sessions together. We laugh, cry, eat, share so many stories, listen to so many songs that remind us of our girls and without saying one word, can tell by the look on the others’ face exactly what they are thinking….and a hug is offered or tears are shared between two grief stricken moms. In the wee a.m. hours, I believe around 2’ ish, we were at Super Walmart (thank goodness for these 24 hour stores, they saved us !!) we were dodging the floor cleaning guy with his big, huge machinery. This happened time and time again. We had to practically scream to hear each other over it. We were slap happy and border line delirious. I thought for sure they were going to call security when I started balling in the office supplies aisles and Evelyn was way up the aisle looking at something else. She could see me, but could not hear me (due to the very loud floor cleaner.) “Wind Beneath My Wings” was playing over the loud speaker. The tears were flowing and all Evelyn can see is that I am crying in the Office Supply aisle for seemingly no good reason. Okay, so the song that my father and I danced to at my wedding was playing, I always told Alexandria that this was my song to her and she was my hero, I am staring at a “kitty” poster (Alexandria loved kitties) and Evelyn thinks I have lost my mind….again. Then I am trying to tell her the whole story over the loud machinery and the whole thing was just too much and I burst into a fit of laughter. Okay, so you really needed to be there to appreciate the comedy in all of this. All I can say is, we are two crazy decorator’s on Chestnut Hill Drive, and we may be shopping at your local Target, so stock up on your Home Accents because we don’t leave much behind us. You may want to protect yourselves and your children from us as well… things can get a little ugly when we see that little orange clearance tag. It’s all about the bargain people…..the hunt, the 50% off, and that nasty little “B” word……..budget.
All joking aside, Evelyn, I am indebted for our friendship. I am indebted to the friends and church family at Fellowship who have surrounded you, Gregg and Adri in the most difficult year since the loss of your sweet Sarah. I know how thankful you are for all of the support you have received and are still receiving because people have NOT forgotten about Sarah.
In the midst of all this chaos, Evelyn and Gregg managed to put together with the help of the American Red Cross, a CPR clinic as a “Celebration of Life” for Sarah Johnson’s Angelversary, which was Monday, February 28th. Their goal is to raise awareness through CPR clinics to recognize when someone is in trouble, CALL 911, and perform CPR !!!!! Time is SO critical in these types of situations and every second counts. There is no time for second-guessing and you need to be on auto-pilot. That is what CPR training enables you to do. It gives you examples of different scenarios so that if you are in an emergency situation you are able to remember what to do instead of panicking. I admit, with four children, I was embarrassed that I had not taken the class since I was pregnant with Alexandria. That is way too long and too many brain cells ago. I urge all of you to get certified, or re-certified….it may be your life that needs saving some day. And so it is just another one of those deals where the Johnson’s could have sat back, dealing with their own pain, but instead, they want something good to come out of their daughter’s death. They started Sarah Smiles, an organization that is going to save many lives I am sure. They want to protect other parents from enduring the same pain that they have endured. They are and will continue to make a difference by educating those of us who think we know what to do, how we would react, by putting together CPR clinics, getting AED’s put into local high schools, making sure that high school teachers are certified (yes, that is right, in Missouri, our teachers currently do not have to be CPR certified, only gym teachers since September of last year). This fact was alarming to me, especially when CPR and the use of an AED (automatic defibrillator) are so easy to learn and classes are offered throughout the community. Well, I know Evelyn and Greg felt good about the dent they made that Saturday towards their even bigger long term goal with over 80 people getting certified. How awesome is that? What is equally awesome is that all the Red Cross workers volunteered their time that Saturday. Also, the Wentzville Fire Dept. (Fire House One) who responded that day to the 911 call and took care of Sarah was there for moral support for the Johnson family. They were so moved on February 28th, 2004 by Sarah and what transpired. Many of them have shared what an impact that day has had on their lives with the Johnson family. It truly was an amazing day for so many reasons and I was honored to be a part of it.
Everyone in our family misses Sarah. Sarah was our children’s babysitter. The kids loved her….especially Addison. Sarah would fix Addison’s hair and play with her. They looked like Barbie and Kelly…..(but both with long, dark hair). The other night I was blow drying Addison’s hair and brushing it and out of no where she says, “Mommy I know about heaven.” I said, “Uh, uh, uh, okay, well, um, what do you know about heaven?” She said, “Sissy and Sarah were friends on earth, but in heaven, they are sisters.” I was utterly speechless. When I gathered my composure, I said, “is that right?” She said, “yep, their sisters up there, and I know lots of other things about heaven.” She did not elaborate any more that evening but I am quite curious what else she “knows” and will inquire soon. It never ceases to amaze me who God brings into my life. Who would have known that the Johnson family would move onto our street and into our hearts. My children adore both Sarah and Adri. Adri plays video games and sports with Hunter and Hayden, and Sarah, Addison and Alexandria would do girly things. I distinctly remember coming home one night after a date with Grant. It was late and Sarah and Adri were sitting on the couch asleep and Alexandria (due to steroids) was wide awake on the other couch….a beautiful smile to welcome us home. That vision of the three of them together that evening is etched in my mind forever. Bittersweet memories……..
Here is the prayer the Lord has put on my heart today. It was given to me on a bookmark at our Woman’s Retreat a few weeks ago. Which I will share more about in a later update.
OPEN MY EYES LORD, OPEN MY EYES
Open my eyes that I may see
Wonderful things in your law
Give me understanding, and I will keep your law
And obey it with all my heart…
Show me your ways, O Lord,
Teach me your paths;
Guide me in your truth and teach me,
For you are God my Savior,
And my hope is in you all day long…
That which I see not teach thou me: if I have done iniquity, I
will do no more.
PSALMS 119:18, 34; 25: 4-5 JOB 34:32 KJV
I will leave you now but will try to update more frequently so that the updates are not quite so lengthy. I will try to have an Easter update.
God Bless Each of YOU in the joyous Easter season-
Alison
Tuesday, March 1, 2005 10:51 PM CST
Hello to All-
A big, huge WELCOME to the month of March. January was crazy busy, February (official bereavement month for so many) was not great, and so I welcome a new month gladly. Grant, the kids and I survived the week of Alexandria’s Angelversary. It was not easy, but we survived. That next Sunday at church, (Fellowship Church, here in O’Fallon Missouri, services held at the YMCA) we heard what is sure to be one of the most moving, thought-provoking, life-altering sermons you have ever heard. The topic, GRACE. The impact, powerful.
Trey Smith, pastor at Fellowship has such a way about him. His words are executed so beautifully….so convincing that there is NO doubt whatsoever of what he speaks. Charlie Loften and Brian Agovino are equally talented in capturing the attention of the congregation, speaking the truth about our Lord and Savior, and illustrating so thoroughly His teachings. There are biblical references always, yet there is a practicality to the sermons given there. The messages are so completely relevant to our every day lives. I am all about the Bible and studying scripture regularly, however, people have to relate to the contents and meaning of a sermon or we cannot appreciate how it pertains to our lives in this century, two thousand years after Christ has died. This is what I receive at this church….nourishment for my soul. Through sermons, testimonies of faith by other’s, music, fellowship, our couples Bible study, the unending support, love, compassion and open arms we have received since coming there, have been such a comfort to Grant and I. So many members have reached out to us. So many members have offered to help with or be a part of Alexandria’s Angels Foundation. This means the world to us. I have been in attendance at Women of Faith and many other such conferences and seminars for years. Going to church on Sunday is like attending one of these events each week. I love to sing Christian songs that I hear frequently on Christian radio. This is not to say that I do not appreciate a good hymn from the hymnal every once and awhile. But the lyrics of today’s songs are so moving and appropriate for our lives. I think it is SO incredibly important to here the testimonies of others. Not many churches have people freely or frequently sharing their testimonies. Yet they are so incredibly important. Recently, 7 individuals were baptized at our church. Each testimony was so completely different yet all boil down to the same exact thing. To hear precious little one’s say that they had invited Jesus into their hearts or grown men profess their new found faith….is their anything greater than that ???!!!!
How rewarding for me to hear that the things we say, the things we Christian’s do in our lives are making a difference in others. We are bringing more people to church and to Christ. That is exactly what we are called to do, yet when we see with our own eyes, hear it with our own ears, countless people being saved before us, it encourages us to keep our eyes on Jesus, His plan, and working towards His goals.
There are big goals and plans being made at Fellowship Church as I write this entry and I would invite anyone who is sitting in their church services on Sunday feeling indifferent, nudged by your spouse to wake up, not growing spiritually, or not feeling like you are journeying down the best path, please come……come once…..and you are sure to be touched, moved to the core of your being, and part of something truly blessed by God. The truth is, God’s plan is SO perfect. Every single thing happens according to His plan. He wanted our family at that church. He called us there, He has kept us there. He always puts us right where we need to be. He surrounds us with the people that will offer support yet continue to let us grow. He allows us to endure hardships. After all, He never promised that this life would be easy, only that we could turn to Him and trust in Him always.
So, now that you understand a little of the background of where we have been worshiping the last 8 months, I will share with you more on the topic of GRACE. It reminds me of an old song, “What the world needs now, is GRACE, sweet GRACE.” Yes, I know the song states love, not grace. However, grace may be even more important than love. Actually, if it were not for the GRACE of GOD and so many others in our lives, our family would not be where we are today. We would not have survived. Grace as defined by the American College dictionary states that grace is 1) A disposition to be generous or helpful; goodwill. 2) Mercy 3) The state of being protected or sanctified by the favor of God. Grace is a gift, a gift of merit that you may or may not have deserved. The only thing that will fill you up is the grace of God.
2 Corinthians 9:8 And God is able to make all grace abound to you, so that in all things at all times, having all that you need, you will abound in every good work.
2 Cor. 12:9 My grace is sufficient for you, for my power is made perfect in weakness.” And, Hebrews 4:16 Let us then approach the throne of grace with confidence, so that we may receive mercy and find grace to help us in our time of need.
It has been in our time of need that we have been shown the grace of God through others. This is the blessing that has sustained us for two years since the loss of our sweet Sissy girl.
Of course in this particular service we sang “Amazing Grace.” Well, I would say “here come the tears” but actually it was “here come the tears AGAIN.” Grant and I had been crying throughout the entire service because we both were so moved by it. Well, we sang Amazing Grace to Alexandria as she lay dying in my arms. When I could sing no longer through my tears, Sister Judy, from Footprints (hospice) took over. We sang it at my father’s funeral, we sang it at Kailie’s funeral, and Sarah’s funeral. It was just too overwhelming to sing it again that day at church. I would have removed myself from the room by I was paralyzed with pain. Not in my legs, but in my heart. I could not control my sobbing…for me, for Grant..for Evelyn and Gregg for John and Johnelle and all the countless other families who have lost a child.
Evelyn and I have both heard Amazing Grace several times since that church service. We have seen it in different places. But what took me to my knees is when I looked at the work of the faux painter Evelyn and I are using in the display home we are decorating. Written at the bottom, next to the artists’ name was written…..”Amazing Grace.” I immediately asked her why she chose to write that and she said that her father had died one year ago and Grace was the only thing that had gotten her through. It turns out that I have several connections with this woman that I will elaborate on at a later date…utterly AMAZING !!!!!!!!!
I have also been amazed by the fact that we have had so many hits to the website lately. You will never know what this means to me, what it means to our family. To know that so many of you care about us and don’t expect us to be “over” our grief just because it has been two years is so comforting. It is a testament to our daughter and all that she stood for. The fact that we still cry in does not mean that we have a lack of faith. It merely represents the amount of love we have for our daughter. This hole in our hearts, this deep undeniable pain will never go away. We will only learn how to deal with it over time.
I have much more to share and will do so soon. I thank each of you for your continued love and grace. You will never know what your gift has meant to my life, my grieving, and my ultimate healing.
God Bless You All-
Alison
Wednesday, February 16, 2005 10:12 PM CST
Alexandria Nicole Haddock entered the gates of heaven at 10:20 p.m on this very night two years ago. Oh how time flies, oh how time stands still.
My sweet, sweet Sissy girl. Oh how I miss you. Oh how my heart and soul long for you. 730 days. 730 days since I saw your beautiful face and heard your voice. How I long to hear it again. I awoke this morning and my thoughts went straight to you and only you. What are you doing in heaven right now? Are you having an “Angelversary” in heaven? Is this your special day there, like a birthday here on earth? Is there cake, ice cream, balloons? Do the other angels sing, “Happy Angelversary to you…..cha cha cha?”
There is not one single day that goes by that I do not think about you. Your daddy, brothers and sister and I pray for you nightly. Actually, we pray for us, you do not need any more prayers in your heavenly home. We always talk about you, with each other, and with any one who will listen actually. We want to keep your memory alive and your legacy to continue. When people ask me “how many children do you have” it would be SO easy to say “4” and walk away. Or even 3. But almost every time I say, “I have 3 children on earth with me, and one who lives in my heart and in heaven.” I will never discount your life and what you mean to me; therefore I will never leave you out. I have been told that this makes people uncomfortable when I say this. Well, guess what? We do not really care how this makes other people feel…..that is of little significance to us…..this is not about them…..it is about you.
Do you see me sweet girl? Do you watch me as I take your pink scarf and wrap in around my neck and pretend that it is a giant hug from you. Do you see me in the dark of the night, quietly gather your animals……the Hamtaro’s, moonbeam the magical unicorn, or the hot pink Hello Kitty blankie..I snuggle up with them in bed and pretend it is you I am snugled up with. Do you gaze from up above as I look at the lavender dress that you would have worn for Easter or the hot pink shirt that I read "Angel" that was to be given to you on Valentine's Day 2003. I look at your brother Hayden and I am reminded of you daily. He looks SO much like you. His expressions, his dimples, his eyes, his laugh…..He darts a glance at me….gives me that same look that you used to give me, and he reminds me of you to a tee. I do not know who reminds me more of you, Hayden or Addison. It is a bittersweet daily reminder.
This morning I dropped off the kids for school and when I got back in car “Awesome God” was playing on 94.1 Joy F.M. This was one of Alexandria’s favorite songs. That song was quickly followed by “How Far Is Heaven?” Okay, double torture to start my morning off. I thought about that question for a good long time today. “How far is Heaven?” Well, IT IS WAY TOO FAR. No internet providers can access there. No phone lines that reach. No mail carrier that can travel there. I remember when my dad Johnny died. I sat there with Alexandria in my arms. She was a newborn. I was crying and Grant walked in the bedroom and asked why I was sad. I said “there are no phone lines to Heaven and I need to know that he is there and he is okay.” Grant has mentioned that conversation that we had that night on numerous occasions and how he was so moved by that statement. That is one of the things that keeps me moving forward. I am comforted by the fact that Alexandria is with the granddaddy she never got to meet on this earth, but now they share a heavenly home.
I worked all day today to keep my mind off things. Grant was sad, I was sad and we thought together we would be miserable. I was with Diane from House to Home Interiors where I am working now. She is such a Godly woman and wonderful Christian mom and grandmom. I know she would understand if I was sad, but I held it all in while I was with her. I am such a good actress at times. I think I should be eligible for an Oscar with my award-winning performances. I mean I am REALLY good at hiding the pain that my heart feels. There are those many other times that I am not good at hiding anything. I wear my heart on my sleeve and I am helpless to hide the heartache that is so evident.
Grant and I took the kids out to dinner after school. On the way, Hayden said “mommy look at the half rainbow.” It was sunny outside, not a raindrop or rain cloud in site…what was he talking about rainbows ?!?!?! Grant and I looked up in the sky and noticed a small rainbow. It was a small “half rainbow.” It was the most amazing light refracted from the sun. Grant and I agreed that we had never seen anything like before. We know it was heaven-sent from Sissy. She is so good at that. It is like she is looking down on us and knows we need an extra bit of comfort, and she sends it to us. Thank you Alexandria. We all went to the cemetery. We have gone there so many times, driven by so many times. It does not get any easier. After we got there, one of my dearest friends in the world, Jeanine came over to her gravesite. She had pink flowers in hand. I was so thankful that she came. My kids trust and love her and therefore were not afraid to cry in front of her. Thank you Jeanine, we all love you. She has lost her mother and her brother at a young age and therefore can relate to our pain.
We then took out Brittany's ashes. Briitany was our cat that we had for 15 years and she passed away last summer. After properly equipping my hand with a latex glove (for germ's sake) we sprinkled Brittany's ashes over Alexandria's grave. Ashes to ashes, dust to dust. I know they have already been reunited in heaven, and now they are here on earth as well. Of course, there were many questions from the kids about this that I cannot get into right now.
The other night as we drove past the cemetery which is right at the entrance of our neighborhood, Addison said with tears in her eyes and shaky voice, “Goodnight Sissy, I miss you and love you.” Talk about breaking my heart. My eyes welled up with tears. This evening as we all stood at her grave, hand in hand, tears streaming from each of our faces, we each prayed. We prayed not for her, but for us. My children said the sweetest prayers, and my heart broke all over again. To hear their precious voices utter such innocent words moves me to tears every time. They should not have to endure such hard life circumstances.
What also moved me to tears, but happy one’s……was the fact that so many people called me today on my cell phone and home phone, emailed us or left a guestbook entry on the website. THANK YOU !!!!!! To each of you who remembered us……. To each who remembered Alexandria today…..we thank you from the bottom of our hearts. I cannot put into words what it meant to me when I came home from work to find guest book entries from all of you……The Mazurs’, The Rhines’, The Johnsons’. The Rays’….cards from so many including, Cherie and Doug Danforth, Trey and Melissa Smith (our pastor and his wife from Fellowship Church), Charlie and Heidi Loften (another pastor and his wife), Pat Hunter (my dad’s wife and mother to John and Courtney Hunter), all the wonderful messages on our answering machine were so thoughtful….extra special thanks to Dawn and Nancy too!!!! To Angie and Terry Doughtery, I was so touched by your heartfelt words. Angie and Terry know all about childhood cancer as there oldest daughter, Ally, was diagnosed with t-cell leukemia when she was a baby. She just passed her 5 year CURE mark !!!!!!! Thanks be to God !!!!! We have known them for several years, but just recently are getting to know them so much better from our couples Bible study on Friday nights and church. I know I said it yesterday, but it never ceases to amaze me at how and who God brings into my life. The timing is impeccable, but isn’t God’s plan always right on???? I am so thankful to God that all of these people are still here, still remembering my sweet girl. Two years after she left this earth she is still impacting lives. Amazing……comforting…..a God–Send. Part of this is due to “The Alexandria’s Angels Foundation.”
We have had several inquiries from interested people wanting to help the Foundation grow and reach more children with cancer and their family’s. In fact, we were recently contacted by Fort Zumwalt West High School. Jeff Auten, who is a teacher there, presented a variety of worthy causes to his entrepreneur class consisting of 90 students. They unanimously agreed that Alexandria’s Angels was the organization that they wanted their efforts to benefit. They sold “hoodies” (hey people, I am so far removed from the “hip” scene, but I think this is a “hooded sweatshirt.”) Are you ready for this ?????
I mean REALLY READY ????!!!!!! They raised $ 4,400 for us. Can you EVEN believe this? Alexandria would be SO proud and excited. I am SO proud and excited and thankful to these teens who looked way beyond themselves and decided to help other’s that were diagnosed with childhood cancer and their families. People this is BIG. What a wonderful “life lesson” for these teens to learn. I never even heard of childhood cancer until my own child was diagnosed. I certainly did not expect teenagers to want to chip in and be so devoted to our organization. I am so proud of each and every one of them. Dawn and I will be going to the high school to give our acceptance speech for the contributions and thank each of them for their hard work and dedication. I have heard the newspapers and a news channel want to cover the story……we will keep you posted.
This will enable the foundation to reach more and more people who need our help…..what a blessing……..
I consider each and every one of you a blessing in my life. Thanks for coming along with us on the ride.
God Bless-
Alison
Tuesday, February 15, 2005 11:27 PM CST
I trust that everyone had a Happy Valentine’s Day. We celebrated here on Saturday night by taking our kids and three other families out for dinner and bowling. As you might imagine, it was difficult as well. Grant bought Addison two pink roses, just like he
always did for Sissy. She was thrilled and insisted they go in her room.
Well, I have been searching and searching for the “fast-forward through
February” button and have still not been able to locate it. I have, however, located carnivalcruise.com. Actually, I have been banned by Grant from the Internet due to my willingness to book a cruise without consulting with anyone if you will remember from last year. Whoop see !!! Hey, everyone was thankful in the end. Problem is we are probably still paying for it. Oh well, life is short now isn’t it ?!?!?
I was actually downstairs in my bed and I just could not stop tossing and turning. I am physically exhausted from running around trying to wrap things up with the old job while working full-time at the new place. However, my mind is working overtime. February 14-16th, 2003, plays through my mind time and time again. Some things I prefer to completely shut out because it is just too painful to go there. Then when I do let myself go there, it is that much more difficult to get through. I must say I have been under a great deal less stress since giving my notice. My new office is about 7 minutes away from our home so it is extremely convenient. I have been working on several display homes and it has been great fun. Interior design is definitely my passion and therefore I really enjoy this job so much. No traveling, no sales quota’s, no giving up the things that I cherish and hold dear to my heart……my family, friends, the foundation.
That is one thing I can be thankful for. Through this experience the “big picture” has been revealed to me. It is so wonderful that after a great deal of prayer about this job decision, God sent his answer and made it blatantly obvious, vividly clear. Usually it is an obscure way that He shows us what His plan is for our lives. Other times, it is neon flashing lights…..everything works out. Now, if only every decision could be on a big billboard so we all “get it” and there is no need for doubt or second-guessing. No matter what the mechanism of delivery is, I am just glad that I know Him, and I know that He will always put me exactly where I am supposed to be. Now if I could just trust Him with every single aspect of my life and turn it all over to Him. I am able to do this so much of the time, but I am only human and I revert back to my old ways on occasion. It is SO hard to let it all go sometimes. That loss of what we think is our control over things. However, we have little control over anything, we are just part of the Master Plan.
I have more to write but will have to continue tomorrow as I am falling asleep at my computer right now.
Please, Please continue to lift up in prayer the following families:
Alexia Flory
www.caringbridge.org/tx/alexiaflory
They are basically trying to keep her comfortable at this point. Pat, Lexi’s grandmother updates the website usually. They have another four year old grandchild in TX that has leukemia. I cannot imagine the difficulties placed on this family.
Benjamin Jones
www.caringbridge.org/benjaminj
He is the sweetest little boy and I have been corresponding with his mom to offer any support I possibly can. They basically need a miracle.
Angel Sarah’s family
www.caringbridge.org/mo/sarahsmiles
This was the kids’ 15 year old babysitter who passed away last February. They will be coming up on the one year Angelversary of Sarah. They are also planning a CPR certification class on Saturday morning, February 26th at Crossroads Elementary. More details to follow.
Angel Meghan’s family
www.caringbridge.com/fl/meghansjourney
My good friend Carol, husband and son lost their precious daughter to leukemia the week before Alexandria went to heaven.
Please keep all of these families on your hearts and in your prayers. Any words of support, hope or encouragement would be greatly appreciated and feel free to go to their websites.
Thanks so much to all of you who have e-mailed me or left a guestbook entry. I cannot tell you what it means to me that people are still coming here and that we surpassed the 300,000 mark this past weekend. Alexandria would be so proud, her mommy is so thankful and blessed.
God Bless-
Alison
Wednesday, February 9, 2005 10:47 PM CST
For I know the plans I have for you declares the Lord, plans to prosper you, not to harm you, plans to give to you and a future. Then you will call upon me and come and pray to me, and I will listen to you. You will seek me and find me, when you seek me with all your heart.
Jeremiah 29:11-13
God Sent To Me An Angel
God sent to me an angel,
It had a broken wing.
I bent my head and wondered,
"How could God do such a thing?"
When I asked the Father
why He sent this child to me,
the answer was forthcoming,
He said, "Listen and you will see."
"My children are all precious,
and none is like the rest.
Each one to me is special,
and the least is as the best.
I send each one from Heaven
and I place it in the care
of those who know my mercy-
those with love to spare.
Sometimes I take them back again,
sometimes I let them stay.
No matter what may happen
I am never far away.
So if you find an angel
and don't know what to do,
remember I am with you.
Love is all I ask of you."
Several, actually many, have inquired about the new addition to our family. Well, I had no idea it would cause such a stir, or I would have been more specific. The little addition to our crew has long white hair, blue eyes and has a very loud ……….PURR !!!!!!!!!!!!! Our cat, Bailey, has her brother (several litters since hers) here with us now. He is cute as a button and is a ragdoll cat. He is in to everything and we absolutely adore him. The kids have been asking for a kitten ever since Brittany (we had her for 14 years) died last summer. We had planned to get them one for Christmas, but it just never happened. So, several weeks ago, we got in the car, drove 4 hours to Kentucky, got a kitty and drove 4 hours back. I know, I know……it sounds crazy.
We gave Alexandria a kitty, “Bailey” on her 8th birthday. She was elated. I can still see her face in my mind. I had taken out a white stuffed animal kitty and gave it to her. I then brought Bailey out. She screamed with excitement. She loved kittens and cats more than anything in the world. We talk about how she probably lives in a "Hello Kitty" house in heaven and has thousands of cats. Knowing how difficult February would be, we decided this would be a good thing for the kids and adults alike.
Grant was in Houston on business. The kids and I ventured to our destination via 4 states. Missouri, Illinois, Indiana, Kentucky. Quite the adventure….quite the long day in the car for a mommy !!!!
We all decided that whichever gender we brought home, it would have to have a “B” name. The girls in our house are “A’s”, the boys “H’s” the cats “B’s” and then there is Grant who just does not belong. There were 2 boy kittens, and one girl to chose from. The girl never came out to play with us, so she was not a contender. The two boys were wild and rambunctious….as all boys are. One looked like Bailey, the other was WAY TOO cute as well. He had a little stripe down his dark face. He stole our hearts. He had a “blaze” of white running down his dark nose. He was the one….
On the way home, there was much debate and great conversation about what this little one should be called….some of the suggestions included:
Billy Bob
BOO BOO
BO BO
Beau
Billy Bob Bumpkin
I heard it all in the 4 hour journey home. I called my sister Stephanie to tell her of our wonderful little pumpkin. I described him to her and she said, “what about Blaze?” Well, a unanimous vote was tallied, and Blaze it was.
Blaze has been a wonderful addition to our home (contrary to Bailey’s belief). Bailey is slowly but surely tolerating him and his shenanigans.
Well, the only other thing that has been going on in this neck of the woods is that I gave my two week notice for the job I had since September. I have been working my tail end off, traveling all over Missouri in the footsteps of Lewis and Clark, put 18,000 miles on my mini-van, and traveled out of town several times. This job, although exciting for a period of time, made me compromise many things. With the crazy hours and job expectations, I felt as though I was a spectator to my childrens’ lives much of the time. By the time I got home, I was absolutely exhausted. The things that I enjoyed doing with them previously, such as reading books and hanging out, were much more difficult to do. I had endless amounts of paperwork, computer work and details that required so much time in addition to normal business hours. The responsibilities carried on way into the night and weekends. This was just not fair to my children. I felt like part-time mom, part-time wife, full-time career woman. I was missing Bible studies, family time, and friend time. This is just not how I wish to conduct my life. At this stage in my life I can honestly say that I have seen the “big picture.” I KNOW what is important in life. With this job I was not curing cancer, ending world hunger or really making any significant impact with what I was doing. I was selling “goodies” (home décor and giftware) to stores. Yes, it was fun, but not worth the sacrifice to my family. Maybe someday when the kids are grown this would be an appropriate job for me, but not right now. What is the most amazing thing is what transpired as I was contemplating this decision on whether to quit or stick with it. I was sitting here last weekend doing the mundane and repetitive task of paperwork, when the phone rang. It was the design firm that I have been working with for several months doing display homes. They had called to see if I could PLEASE work for them FULL TIME. They have been swamped lately and really need my extra help. Well, if that is not God just shaking you and saying, “hello”, this is My plan, this is the direction I want you to go. It never ceases to amaze me how God works. I am always in awe of His plan and how He makes it work. Here I was, worried about giving up this consistent and predictable income, and there He is saying once again, “trust me.” It is amazing to realize that when you let it all go, put all of your trust and faith in Him, what can happen, what He will do with your life. It is a hard thing to trust that He knows what HE is doing in our lives, but He created us, He is all knowing and therefore NO ONE is better equipped to give us direction for our lives.
Addison has been sick for the last several days so I have been home with her playing nurse, a job I do very well I believe. I have SO enjoyed her company and the time shared with her, even though she has not felt the greatest. It feels good to get back to being “me.”
THANK YOU to all who continue to come here so faithfully. You all are a “God-send” to me. I am indebted to your kindness and sincere compassion.
I will be updating more regularly......
God Bless each of you-
Alison
Thursday, February 3, 2005 9:14 PM CST
Dear Friends –
All those in favor of skipping February altogether, say “I.”
ME !!!!! Yes,I hear you too Carol and Evelyn !!!! Anyone else ???
This will be an incredibly difficult month that I am not looking forward to.
I must admit that I am so tired of heartache. My pain runs deep….others’ pain runs so deep. It cuts and runs through the core of our being.. The pain I feel for other families enduring what we went through and continue to go through daily, is so intense. My wishes and prayers have not been answered in the way I hoped. I have prayed a thousand times that a cure would be found…….that less children would be diagnosed, fewer children would die of these dreadful diseases. God always answers our prayers, just not always how we want or anticipate. God will always answers in one of the following ways: 1) yes 2) no 3) not yet. I am patiently waiting. I will continue to wait and pray for as long as there is breath in this body. But I cannot help but ask,, as any human would, when will there be an end to the website entries such as these???????
THURSDAY NIGHT AT ABOUT 9:30, LEXY WAS ADMITTED TO THE HOSPITAL AT SAN FRANCISCO CHILDREN'S HOSPITAL.
LEXY WAS IN SO MUCH PAIN, THAT WE HAVE ALL BEEN IN TEARS TODAY. LEXY WAS SCREAMING MY LEG, MY LEG AND SHE WOULD CALL OUT TO ALL OF US AND THERE WAS NOTHING WE COULD DO BECAUSE SHE HAD ALL THE MEDICINE SHE COULD HAVE AT THE TIME. LEXY'S LEG HAD BOTHERED HER A FEW DAYS BUT THE PAIN STARTED GETTING WORSE YESTERDAY ON WEDNESDAY.
THE PLAN IS NOT FOR A CURE BUT TO KEEP HER COMFORTABLE. DR. MATTHAY GAVE 4 OPTIONS:
(1) IV CHEMO IRINOTECAN
(2) ORAL CHEMO CYTOXIN
(3) ORAL CHEMO VP16
(4) KEEPING LEXY COMFORTABLE
THEY ARE TRYING LEXY ON A DRUG (PAMIDRONATE) THAT IS USED FOR BONE CANCER THAT HOPEFULLY WILL GIVE HER A LITTLE RELIEF FROM PAIN. IT IS GIVEN IV FOR 4 HOURS AND CAN BE GIVEN 1 TIME IN 3 WEEKS.
DAWN AND GREG DECIDED ON OPTION 1 WHICH IS THE IV CHEMO. DR. MATTHAY SAID THEY COULD TELL RESULTS IF IT WAS HELPING FASTER THAN USING ORAL MEDS. WE WILL KNOW IN A COUPLE OF WEEKS IF IT IS HELPING. LEXY DOES NOT QUALIFY FOR ANY OTHER STUDIES. HIGH DOSE CHEMO IS NOT AN OPTION SINCE HER COUNTS HAVE NOT CAME UP ON THEIR ON SINCE THE MIBG THERAPY LAST NOVEMBER. HIGH DOSE CHEMO COULD MAKE HER SICKER AND MAKE HER BE IN THE HOSPITAL LONGER AND NOT A GOOD QUALITY OF LIFE.
Thursday, January 20, 2005 9:05 PM CST
Hello Everyone,
Things have changed a lot with Joshua, he has been sleeping more these days and has stop eating and drinking. He has visable tumors on his head and one between his eyes . We went to Greenville on Monday to check counts and he had to get Platelets. Returned on Wednesday and they gave him some fuild, but counts were O.K., so we go back tomorrow to check counts again, knowing he will need Platelets, and possibly Blood. Thank you all for signing the guest book, it means so much to Jamie and Me.We don't know how much time we have with Joshua now.We are enjoying every second with have with him, holding him, loving him, talking to him . Please keep Joshua as well as Travis in your prayers We love you all, Love, Christine and Jamie
Joshua got out of the hospital yesterday evening, he has been in for eleven days now, he finish radiation up on both legs Thursday. He had radiation for five days. Joshua's disease is packed in the bone marrow and he is not able to make his own blood and platelets, so he is having to have them every two to three days. He is still on the waiting list for MIBG therapy. Dr. Maris e-mailed us and said he had an opening on Feb 8, but we would have to see how he is doing then. Time will tell us if it is meant to be. Joshua was in so much pain last week . He had a lot of break through pain, and it tore Jamie and myself up to watch him go through it. We might not can help get rid of this monster in our baby, but there is one thing we can do for him, is never let him go through that much pain again. When Joshua's pain started he would holler,"Devil get out of me", then he would hit his legs. He said,"Mommy I can't take it any more", so we promised him that we would make sure that his pain would be under control with pain meds, and if our meds was not enough, then we would get someone in to help us. He also asked if people had pain in heaven, and I told him,"no they never have pain in heaven". My heart is breaking, because Joshua asked a lot of questions this week that brought tears . Right after we got in the hospital last week, they did scans, but nothing showed anything different that we already knew. Joshua knew that we were waiting for results, and he said,"What if the Dr. says I'm going to die". I could not say anything, until he said,"huh mommy", then I said why Joshua do you feel like they are going to say that, he said, "kinda", I said are you scared baby, he said,"Yes", and then started to cry, and I cryed while holding him. I told Joshua,"Mommy wishes she could carry your pain and cancer for you, and he said,
NO MOMMY, I have to carry it for you ,Daddy, and Travis so yall don't have any pain". I thought to myself "Where did he hear this from, but I knew who was talking within him, and was speechless. Everytime he had pain, he said ,"Mommy lets pray for the pain to go away and he would put his sweet little hands up and pray, and he also prayed for the devil and said"Stop killing everybody". He wanted to talk a lot about Heaven, so we did, even though it hurt me, but I remember before Joshua was dx with Neuroblastoma, he wanted to talk about Heaven, he also told me back then that he was ready for God to call him home, and I got mad at him and changed the subject. I know it was wrong of me, but I couldn't handle talking about it then. So now when he wants to talk about it, we talk and I try to answer him the best I can.
Since Joshua has relapsed all I can think about is Neuroblastoma, I stay on the computer trying to find something new out there that would help Joshua. I can't get the word Neuroblastoma out of my head, wondering when are they going to find a cure, will they ever find one. They have to find a cure, they need more funding, they need us pulling together and getting the word out. I could go on and on, but I know I'm just beating myself up.
Chemo has been so harsh on Joshua's body and I thought maybe if they tried one more low dose that it could help. I ask Joshua, he said,"NO mommy I don't want to do anymore chemo", then he said,"I don't want to lose my hair again". Even though in the back of my mind I want to keep pushing for it, I know he knows what he wants.Some might think he's only five, he really doesn't understand, No! I'm sorry he is more mature than most adults including myself. Joshua said the other day that Neuroblastoma was the devil. I feel like we need a plan, even though I know GOD already has the real plan.
We will go back and forth to our local Dr's in Greenville and check counts, and we will see how Joshua does between now and Feb 8. We have the "H" nurses come out next week to sign papers, and if it gets to the point where the pain meds are not strong enough, then they will come in and help make sure he is pain free. I'm sorry I can't say the "H" word, it's a problem that I'm dealing with, but I know that they are wonderful people.I know I will be able to say it soon, it just takes me time with a lot of things.
I do know one thing that Neuroblastoma cancer will never win in this household, we won't allow it, so what ever road the journey takes our family down, Joshua and all will be winners, not Cancer!
Now you all see why I don't update that much these days, I ramble too much. please keep Joshua and all the ones going through this in your prayers. Thank you all for the cards and the support you have given our family, we appreciate it and know that we have been blessed with family and wonderful friends.
Any mommy that reads this will be moved to tears. I can hear the pain, the frustration and the sadness in these parents’ “voice.” I wish so badly that I could just take it all away. I would in a heartbeat. Please keep these families in your hearts and in your prayers as they need them more than ever.
Tomorrow is Addison’s 5 ½ year birthday. Alexandria’s half birthday will follow quickly on Feb. 6th. This is the last thing we celebrated with her. The memories of that day are both comforting and haunting. We knew in our hearts it would be the last birthday she would celebrate therefore we tried desperately to make it a good one. Memorable for us, yet she would not need memories of it. She would be in heaven.
There is so much more I want and need to elaborate on and will do so in the near future. However, Grant just got home from a 10 day business trip and all I want to do is curl up in his strong arms and collapse.
Please keep Grant’s mom in your prayers as she has been very sick over the last month and in the hospital. For the record, I must state that I have an incredible bond with Grant’s mom, Noel. I admire her for raising Grant, a single mom raising 3 children. She must have been one kind and nurturing mommy, because that is what my husband is. I was always told that you could judge a man by how he treated/the relationship he had with his mother. From day one, of the 17 years I have been with Grant, I knew she was one strong woman. I knew that Grant loved her more than anything, trusted her, and respected her. When we are in the car, or even next to eachother, Grant HAS to hold my hand. This nurturing, “touchy/feely” attitude towards me and our children is amazing to me……sometimes annoying, but always amazing. To this day, he has such a special love and admiration for his mom and all that she did for them.
I could give you example after example of times that she was compassionate and helpful to me, but no other could quite compare to this.
It was February 15th, 2003. Alexandria was clinging to life. There was a snow storm yet she and Dave, Grant’s dad, made their way to Cardinal Glennon Hospital. Before she left the next day, she walked over to Alexandria’s bed. I had been singing to her and talking to her for hours without really paying too much attention to who else was in the room. It was an “out of body” experience. Noel came up to the bedside in which I was laying with Alexandria with tears streaming down her face, for she was saying goodbye to her granddaughter, her first girl. She looked at me and said, “Alison, I love you.” “I love you as if you were my own.” Those words ring soundly in my ears on many occasions. I was so moved and touched, to hear her heartfelt sentiments. I was so thankful for a mom who cared about me. They were some of the nicest words anyone has ever uttered to me......ever. From the bottom of my heart and till my dying day, I will thank Noel Knott’s for demonstrating such an act of thoughtfulness…..kindness and compassion.
We have a new addition to our home that I will fill you in on later.
God Bless you each and every one-
Please …..go hug your children and tell them they are loved by you-
Alison
Thursday, January 27, 2005 11:34 PM CST
update soon
Tuesday, January 11, 2005 9:52 PM CST
Dear Friends-
I am leaving tomorrow to go to Atlanta to work the showroom for market, but I wanted to let everyone know that some families need special prayers before I go.
First, the Jones’ family. There son Benjamin is very sick and they have basically run out of options. He is being treated by hospice and receiving no further chemo treatments.
Mom is expecting a baby and suffering from morning sickness. Please visit his website www.caringbridge.org/oh/benjaminj and offer the family a word of encouragement.
Also, the Flory family is in need of prayer. They were in TX, MO (Ft. Leonardwood) , and are now in CA. Lexy’s neuroblastoma has returned and they are doing an experimental chemo as they have exhausted other options. Mom delivered her baby brother this weekend on the 15th floor of the same hospital that Lexy is being treated at. (She is on the 7th floor.) Her website is www.caringbridge.org/tx/alexiaflory
Please keep all the families who have been devastated by the tsunami in your prayers. I cannot even fathom how all those people are coping with such a horrific ordeal.
Please also pray for our troops who are fighting for peace in Iraq. It is a fallen world we live in. It is hard to understand how such tragic things continue to happen. We all are greatly affected, but are going on with our lives. It is business as usual here in the United States. Our children have schools to go to, homes, markets. Many have lost their entire family. They must be in utter shock, disbelief and denial. Couple that with being hungry and thirsty, no where private to use the restroom and their situation is unimaginable to us. We are still enjoying 3 full meals, endless amounts of clean water and a shower daily. I am so thankful that so many have found it in their hearts to give to the wonderful foundations and services that help these people out. 150,000 lives lost….unbelievable, absolutely unbelievable. As we go about our daily activities, let us all continue to pray for these people who have lost so much.
In Him-
alison
Thursday, January 6, 2005 8:45 PM CST
Welcome 2005 !!! Good riddance 2003 and 2004 !!!!!!!!!!
2003 marked the most horrible year of my entire life. Alexandria passed away February 16th, 2003. It was the end of her life on earth it was the beginning of her eternal life. It was the end of my life as I knew it. I have never known and I am sure will never know again, pain quite like that. I hope that I will never have to experience it again. Throughout the year, Grant, the kids and myself, tried to make sense of it all. We asked the unanswerable questions day and night. Those questions will remain unanswered until we meet our Maker. Initially, we closed out the world. We wanted to hide. We built up walls in order to shut ourselves in and put at a distance others that could never comprehend our grief. Our reaction, after the initial shock wore off, was to keep to ourselves sane and not bring the rest of the world down with us. We were judged for this. During that trying time and next phase of grief, we learned how to be great actors. We pretended to be okay, but we weren’t. Everyone else was able to move on, but we, as her parents could not. We wanted to remember her. Every detail. Her words, her smile, her courageous spirit. Every song, every picture, every single thing was a reminder that would start the tears flowing. That series of “firsts” was a nightmare. People don’t understand, nor did I expect them to. But I can clearly see from this vantage point, almost two years down the road, what happens. Other people move forward. It is the grieving parents’ that are stuck in the quagmire…..the funk that is unshakable. No one else’s life is impacted quite like the parents who took care of that child. Especially the mommy……. the mommy that was there for every single boo-boo……the mommy who slept with you when you were scared or sick. The mommy who rubbed backs and aching legs from chemo…..the mommy who sang lullabies to make things better, to comfort her little girl.. it is the mommy who carried this baby for nine months and loves her before she every laid eyes on her. The mommy’s give birth to their babies and nurse them at all hours of the night. Plenty of time for bonding. Plenty of time for thanking God for this gift. It is such a unique and amazing relationship that God created for us, the mommy’s and their babies. After enduring such a horrible 2003, we certainly thought that 2004 would be the year that looked up and onward. Of course, we vowed never to forget Alexandria, but that we would focus our efforts on others, to bring our pain and loss full circle. 2004 began with another loss in our family. Then, February 16th, marked the one year “Angelversary” for Alexandria. It was horrendously painful as we re-lived those last moments and days of her life. You are stuck between trying to remember every detail, to commit it all to memory, to never forget. The next moment you are trying desperately to forget….block it all out of your mind because the affects are too devastating. It is a balance really and the line is very thin.
In February 2004, we also lost our neighbor’s daughter Sarah. She was the kids’ babysitter and we are friends with her parents Gregg and Evelyn. This was such a shocking, painful blow that was unbelievable. Grant and I were in shock….for a good long time. To know that someone you care about is experiencing the same, devastating pain that you yourself have endured is awful. We re-lived our nightmare. The Johnson’s had no warning, no time to say goodbye. Sarah was gone at the tender age of 15 due to heart issues that went undetected.
As caringbridge participants, we have come to know many of these families over the years. Many of them we follow daily, just as others followed our journey through the unthinkable. We lost so many caringbridge children in 2004, 55 at last count. We have grown to know many of these families. We e-mail moms and dads to comfort them in their trying times. We follow the Bible verses of 2 Corinthians 1:3-4 and try to comfort others as we have been comforted. Yet, unfortunately, we once again, re-live our nightmare time and time again. The cumulative affect takes its toll.
This past summer, Kailie, daughter of our good friends’, relapsed with ALL and was diagnosed with HLH, a secondary blood disorder. The only cure would be for a BMT. Grant and I tried to be a support system for John and Johnelle. Initially, I wish we could have done more, but it was so painful to be at the hospital. Every smell, every sight, every thought made the memories flood through our minds. We prayed a great deal throughout that time. Once again, we asked God to help us comfort them, as we had been comforted by others. God provided for us. It was only by strength given straight from Him, that enabled us to go to the hospital regularly, to be there for them. July came and went, and Kailie’s condition worsened. “It cannot happen again." “Please Lord, not Kailie.” The odds seemed too great to be beatable, yet when you believe, you know miracles are possible. We thought that this would be such a perfect opportunity for God’s awesome powers to be revealed. Yet, these were our thoughts, not God’s plan for her. It was a Friday in August. There was nothing medically more that could be done for her. It was the longest, yet the shortest weekend for the Rhines’ family I am sure. Grant and I paced the halls, we begged for God’s mercy. Once again, we re-lived February 16th, 2003. We walked the same halls, had the same doctors. It was the nightmare that ensued for over a year, that was being re-wound, and played again. Kailie went home to be with the Lord and Alexandria in August.
Some people have been tolerable of us. Some were not. It is completely true that your address book will be re-written when you go through such a tragedy. There will be those that stand by you in light and a select few that will be there in the darkness. Those that you thought were there, that are not really. And then some of them REALLY fool you, and let you in on that little secret when you least expect it. Such is life. Things hurt us, people hurt us. We learn from those mistakes and move forward. The people who judge you are usually real good arm-chair quarterbacks. It is real easy to sit in judgment of others when you yourself have not been through such trials. These people are quick to judge and slow to forgive. How would they react to the same circumstances? I would never wish it upon them, but how would THEY cope ?????
My message is simple, although it has been said before, it bears repeating....until you have walked this path of grief through losing a child, which is every parents’ worst nightmare, please do not judge others.
With the onset of a new year, I am hopeful of all that 2005 could bring personally, spiritually, and professionally. We will continue to help other children and other family’s who have been devastated by childhood cancer. It is the only way I can find peace and understanding to this situation.
The Alexandria’s Angels Foundation has big plans for 2005. We have been contacted by individuals who share in our mission and this will enable us to further help our sponsored families. Thanks be to God for truly generous people who care.
So again, I say, “Welcome 2005 !!"
May it be a year filled with hope, happiness and health for you all-
Alison
Saturday, December 25, 2004 11:20 PM CST
All I want for Christmas is ………..NOTHING !!!!!!!!!!!!!!
Every single thing I need is in this home, or in my heart and heaven…….
The last few weeks have been such a blessing……a true Christmas gift to me. This is due to the wonderful people who give to the Alexandria’s Angels Foundation. You see, when the Foundation grows, so does our capacity to help other children with cancer and their families. I have gotten to play Santa many times in the past few weeks and the feeling is like no other. It is almost indescribable……that wonderful feeling you get when you know, that what you have done for someone isn’t just “nice” it has truly helped them. I say this with the humblest of hearts. I did not play Santa alone. You were all with me…….you were with me in my heart and in spirit, just as Alexandria is. One of our sponsored families furnace went out and they needed a new one in these single digit temperatures that we have been experiencing and we were able to provide that for them. We were also able to give all of our sponsored children and siblings Christmas presents that are sure to bring a smile to their sweet faces. We were able to pay for some big medical bills and I know that was such a relief to those families. Knowing the difference we have made in their lives has helped my heart to heal. It gives me a reason to keep moving forward. I want to once again thank all of you who are contributors to this worthy cause, not only for the benefits that are provided to the recipients, but for the growth it affords me. I would never be able to accomplish this on my own. It is only because of the generosity of others that I am able to do this. I can never thank you all enough. Being the recipients of these wonderful gifts, ourselves, I know what a God-Send they are. You cannot put a price tag on it. You cannot purchase it at the mall or even Toys R Us. It is the gift straight from the heart. The gift of caring for others and what they are enduring and showing it through acts of kindness. Most of you cannot fathom what it is like to walk in these shoes…..who would want to. It is hard to imagine your child getting sick or your child passing before you, the parent. To these families who are enduring such hardship physically, emotionally and financially, the smallest gift means so much.
This has been a wonderful Christmas. Yes, there is a hole in my heart that will remain until I hold my sweet sissy girl again. But I have truly enjoyed continuing Alexandria’s mission.
When at times I felt myself being stressed and caught up with the commercialism of Christmas….when I was fretting about presents and how I would get this or that accomplished…….I took time to sit….to pause ….to reflect….I reminded myself of the TRUE meaning of Christmas……it is about Jesus Christ our Lord and Savior……not about material things. Most of us will soon forget the gifts that were under the tree today, but we must never forget the gift that has already been given to us by Jesus.
We spent the day with Grant’s mom, dad and grandmother (thanks MeMaw and PawPaw!!!!). We had a lovely time. Tonight, when my children were tucked nicely in their beds and slumbering soundly, I took a drive to the cemetery. I, once again, wished Alexandria a Very Merry Christmas and “tucked her in.” It is so quiet there. It is fairly dark. Only the steeple of the church is lit. I can think there. And on this crisp December night, Jesus’ birthday, it is all crystal clear. All of life is put into perspective and I am, again, reminded, that in the end, faith, family and friends are all that really matter.
Wishing each of you the Blessings of this wonderful season-
alison
Dear Heavenly Father-
I know the heartache I experienced last Christmas, our first without Alexandria. The pain was unbearable. Although this Christmas has not been without the same longing for her to be here with our family, my thoughts go to others who are enduring their first Christmas without their child. Lord, please bring peace, understanding and a sense of hope to the Johnson's missing Sarah, the Rhines' missing Kailie, and all the caringbridge family's with angels this year. These "firsts" without your precious child, are so difficult despite the fact of knowing they are with You.
As I sang the words "Oh Come Let Us Adore Him" this Christmas, my mind drifted to what that first Christmas in Bethlehem must have been like. In the mere birth of the newborn King, they adored Him. He had not saved any lives, healed them, died for their sins, or taught them great lessons, yet they adored Him. We have learned so much about Him in these 2000 years. I know He is everything I need and therefore how can my own heart do any less?
In singing Silent Night, a feeling envelopes me. I am moved to tears in the thought of Jesus dying for me so that I could spend eternity with my daughter. Sleep in heavenly peace.......sleep in heavenly peace my child, until I can hold you again....
Amen
Thursday, December 2, 2004 9:28 PM CST
WOW !!!!
I cannot believe that as I checked the website tonight I was # 280,011 !!!!
I honestly do not even know, cannot even imagine who is still coming here. I really wonder if someone is repeatedly hitting the back/forward buttons. We are getting about 1,000 hits per week. I know most people are incredibly busy and do not have time to leave a message, but please know that this website is checked daily, sometimes twice a day and it warms our heart to see that people do still care and are still visiting. I do get many loving e-mails telling me on a more personal level how Alexandria has impacted their lives or how they have thought about us or prayed for us. That gives me such a sense of peace. It never makes me sad to think about Alexandria and all the good she brought to this world. I know she changed lives. Mostly mine. I am blessed because of her. Thank you to all that take the time to write me and share your stories. It is true what many say, as time goes on, people move on.....they get back to their lives. It is those of us that have suffered the loss that are stuck and remain in a holding pattern of grief-stricken turmoil. Thanks for still caring how the Haddock's are doing, it means a great deal to us.
In February, the website will have been up and running for four years. I am hoping that the count is up to 300,000 by then. I don't really know why, just do. Don't any of you out there get any ideas........I really want it to be an accurate count !!! I have not gone back to re-read any website entries from the past. I just CANNOT do that. I would be devastated to re-live all that pain. Maybe someday, but not now, not yet.
If you notice I did put a summary of Alexandria's story on the home page. I have been meaning to do this for a long time but never got around to it. Grant will be adding new pictures too , so check back soon.
It was recently brought to my attention that a very special family needs our prayers as they have just put their 8 year old son Benjamin back on hospice. Please visit his site and leave an encouraging word to his parents who could certainly use it right now.
www.caringbridge.org/oh/benjaminj
Well, I am off to bed as the Haddock clan has been stricken with the stomach flu, pink eye and colds this week.......someone hand me the Lysol.....I am a mom on a de-germing mission.....
God Bless-
Alison
Tuesday, November 30, 2004 11:26 PM CST
Dear friends-
Of course it is of no surprise to me that I left out crucial people in my thank you letter for the golf tournament. Things are crazy around here as usual. I am still doing some interior design work, working a full time job selling home décor products and giftware to half of the state of Missouri, and doing 4th grade and 2nd grade math and spelling each night with the kids. This does not include the many extra-curricular activities, such as earning badges, coming up with ideas for the latest and greatest science fair project, reading with the kids every night, preparing dinner (I use the word “prepare” figuratively), somehow managing to keep the house relatively clean,
(I use this word lightly too) and keeping the hubby happy too. When I say that there are two brain cells left at the end of the day, I really mean that. All of this, coupled with running a foundation, well, you get the point. Things are BUSY here.
I would like thank Bill Addison for an awesome job on the auction for the 4th Annual Golf Tournament. His auctioneer skills were greatly appreciated and he did an outstanding job getting top dollar for our auction items.
Guacamole’s Restaurant, here in O’ Fallon, Missouri, was extremely kind and generous. This restaurant donated their time, appetizers and margarita’s for all to enjoy the day of the event.
Rosanne Bachmann, who herself has a child with leukemia, went the extra mile to get other people to donate money to this cause, donate items for auction, and participate in the event as well.
THANK YOU THANK YOU THANK YOU to all of the people who “Donated to Make a Difference.” I can never fully or adequately thank you enough for your hard work and dedication to the Alexandria’s Angels Foundation. All of the families we sponsor are indebted to your willingness to help those affected by childhood cancer.
God Bless-
alison
Thursday, November 25, 2004 9:43 AM CST
FOR THIS I AM THANKFUL
~ For trying times that help me see the bigger picture and help me to grow
~ For all the little miracles I take for granted
~ For the unconditional love of my family
~ For my children who never cease to amaze me, confuse me and make me proud
~ For each new day that the Lord gives me
~ For my husband Grant, who has seen me at my worst, and in spite of that, continues to love me
~ For the friends who stand by me in sunshine and in shade
~ For all the people who inspire me to be the best I can be
~ For good health, good food, laughter and every once in awhile sleep
~ For FAITH and a belief in a Power greater than myself
~ For the forgiveness of my sins
~ For the promise of eternal life in heaven
with Alexandria, my dad, and other’s who have gone before us
With a grateful and thankful heart I wish you all a
HAPPY THANKSGIVING-
Alison
Tuesday, November 16, 2004 11:27 PM CST
The cry of my heart is deep. The cry of my heart is intense. I pray in the heart of the storm. These cries are deeply personal, yet I know these cries are not original to me.
The loss of gold is much.
The loss of health is more.
The loss of Christ is such
As no one can restore.
Author unknown, 1846.
November 7th, 2004.
Dear friends-
We have had one busy month here at the Haddock Homestead. Halloween was a wonderful time had by all. Addison was “Belle”
and Hunter and Hayden were “army guys.” Of course, this is always a difficult time for Grant and I as we reflect back on the past 4 Halloweens.
November 7th 2000. I remember that day vividly and crystal clear. I can not even go into details right now. That day entailed such an array of emotions. It was, by far, one of the worst days of my life. Upon reflection of the past four years, let’s just say, that my heart, Grant’s heart, are weary at this time. In some respects, it seems like a lifetime ago. Sometimes it seems but just a brief moment in time. The other kids are oblivious. They are consumed with their lives as they are now. Happy, healthy little one’s. And that is the way it should be. But it is we, the mommy’s and the daddy’s that must live with so much pain. The pain that very few can recognize. It is the pain of loss. The unbelievable hurt of losing a precious young child and finding the will to live after they are gone. Yes, I do move on. I do move forward. For the sake of my children here with me on this earth, I move in the path that is expected of me, the path I must go. It is not always easy. It is not always the path of least resistance. But it is the one that God has chosen for me and therefore I will endure it, except it, and move forward.
Last week I went with Johnelle, Kailie’s mom, to the 12th Annual Friends of Kids With Cancer Fashion Show. It is a WONDERFUL organization. I have spent a great deal of time with Johnelle, and I must inform you all of something I have known for a long time. Johnelle Rhines is the strongest woman I know. I REALLY mean that. I look at her stage of grief, and where I was at the same point in my grief, and I must say, we were worlds apart. During the Friends of Kids With Cancer Fashion Show last week, I was quick to tear up, quick to feel the strong emotions of the kids that were there, the fear, the hope that their parents were feeling. I cannot completely and adequately describe the emotions that were running through me. Johnelle I am sure, felt those same emotions ten-fold as Kailie was always in the fashion show.
Yet, her tears were held until she got home that evening. I am in awe of her strength. I told her that she should be my grief mentor as she was so much more strong than I.
I was so proud of Mackenzie for getting up there and doing such a great job. I was so proud of her mommy Shana, who recently lost her husband to cancer, yet she finds the strength to carry on each and every day for the sake of her daughter who needs her. These are the people who give me strength. These are the individuals who push me to “keep on keepin’ on.” I look at them with such admiration for what they are able to achieve in any given day. I think about all my heartache, my loss, my grief…..then I magnify that grief ten-fold, and that is what Shana is feeling. I wish I could take away all her pain….yet I cannot. I pray that the Lord gives me wisdom of how to help this family through such a difficult time.
Today is November 16, 2004. As you can see from the first part of this journal entry, things were hard. It is always the case when so many "anniversaries" come in quick succession. However, lately, now that these dates have passed, I feel renewed once again. I want people to understand. I want people to know there is hope in the face of loss. I update the website when things are not so good as a way of coping and working through the process. It is therapy for me. But I do want to be very clear. I am also very much living my life to the fullest. I am enjoying life. I am enjoying my children. This is what God wants for me, this is what Alexandria wants for me. Of course, there will always, for the rest of my life, be times when I am sad and missing Alexandria. That will never change. But I know my other children are watching me. I know they look to Grant and I to gauge what they should do. They need us to be strong. They need to know and understand that life is good....God is good and that we will perservere and the reward will be eternal life with Him and Alexandria.
So many times in recent weeks, due to traveling with my new job, I have been on long, winding country roads in Missouri. It never ceases to amaze me at how many crosses are so lovingly displayed on the side of the road in remembrance of a loved one who's life was lost there. Miles and miles I travel and I have seen hundreds of them. Crosses placed with love…….crosses placed with precious care. Each time I pass one, I pray for the family who is living each and every day without their son or daughter, husband or wife or mother or father. It honestly breaks my heart. It causes me to pause and to reflect and to be thankful that I am still here. I am still able to enjoy my children and their lives here on this earth. I am able to sleep (sometimes), to breathe, to be human and enjoy all that God intended for us to enjoy. God NEVER promised ANY of us a rose garden. He never promised us that life would be easy. He never promised that we would not have trials and tribulations. Yet, He did promise us many things and we should all take solace in that. He promised us an eternal life if we follow and believe in Him. He promised to never leave us or forsake us. He is there in our darkest hours. He understands our pain. He is ALWAYS there.
Thanks Be To God For All that He has given-
alison
Monday, October 25, 2004 10:19 PM CDT
I started this update over three weeks ago. I hemmed and hawed over the right words to use. I debated on how to so eloquently state what my heart was feeling. Then I realize that you all do not come here for anything other than to check in and see how this family is faring in the midst of such a loss, and I am comforted. The right words seem irrelevant……only to get my point across. Thank you to each and every one of you who e-mailed me and was concerned about how I was doing.
The last few months have been a series of highs and lows. We had Addison’s birthday August 4th, Alexandria’s birthday August 6th, Kailie’s death and funeral, Hayden’s birthday, the two-year anniversary of BMT and Grant’s birthday on October 1st, our anniversary, the golf tournament, I started a new job, went to training in Chicago for a week, the anniversary of diagnosis day November 7th is looming around the corner, the elections that took place on the day of diagnosis four year’s ago, Halloween……. So many times I think of Alexandria. I wish she were here to share in our lives on earth. I have been doing a great deal of traveling with my new job. It sometimes affords me too much time in the car to think. But it has also brought about comfort and hope. For instance, while driving home from The Lake one day, I was listening to songs that remind me of Alexandria. I sobbed uncontollably to the point I needed to pull over. After catching my breath, I looked into the sky and there it was. A rainbow. A FULL rainbow. And another half of a rainbow right next to it. I could not believe it. I have never seen a rainbow quite like it. Of course I quickly recall the rainbow I saw outside of Red Robin's on another grim day. At the time, I was not sure if that was a sign that Alexandria would be healed on this earth, or that I would survive God's plan whatever the outcome. Now I know. I also know this rainbow was sent from God and Alexandria as a sign to show me that in heaven, there are many rainbows. It is beautiful beyond our comprehension. That rainbow was a sign to me that there is hope, I will make it through this. It just happens to be the cummulative events that have made things so hard lately and the grief work still ahead of me.
Although the golf tournament is an extremely emotional event, the Alexandria's Angels Foundation 4th Annual Golf Tournament was amazing to witness once again. For legal purposes, I cannot disclose the dollar amount that we raised, but let me state for the record, that we far exceeded all years past. I AM ELATED !!!!!!!!! Grant and I could not be more proud at the outcome of this year’s Golf Tournament. The impact we can and will have on the lives of those affected by childhood cancer is ENOURMOUS !!!!!!!!!!!!! Grant and I are thrilled to be a part of something that is doing amazing things for the people that need it so desperately. If you were to look into the eyes of Jenna, of Kenny, of Mackenzie, of Kailie……of any of these kids we have sponsored you would know what I already know, and that is all you need. There is no need for a verbal thank you. No need for anything other than a hug, a look from parents that says “thank you, your gift is immeasurable, your gift means the world to us……someone knows, someone understands our pain.” That is all I need to continue my mission.
I say this all with the humblest of hearts. It is only by the grace, dedication and sheer determination of so many that we have achieved this unbelievable goal. It is always a team effort. There are countless people that we have to thank for the generosity, time and unwavering support of the Alexandria’s Angels Foundation. These people have been with us for several years. They did not cop out when the going got rough. They did not look for excuses to move on. They chose to continue the fight for those who did not always have the strength to fight for themselves.
To Dawn Dains, my wingman/wing woman, I cannot adequately express all that you have meant to me and this foundation and to the kids that we support. I know you follow many children on Caringbridge Websites on a daily basis. I know you care about them as I do. You leave messages on their guestbook’s, send them gifts and cards, support them in any way you possibly can. You, yourself, have never been affected by childhood cancer. You did not even know Alexandria before she died. Yet you care. You care about this foundation; you care about these kids and so many others as if they were your own. Whenever I called you to ask if you could do something, you did not say, “maybe”, or even hesitate, you immediately did whatever needed to be done. I thank you from the bottom of my heart for all of your efforts.
Kristen and Kevin Bly, you never cease to amaze me. Kristen, you single-handedly took care of every aspect of the silent and live auction. You and Bill did not complain about this enormous task, you just did what needed to be done. Words cannot adequately express my gratitude. Kevin, who just ran the CHICAGO MARATHON in ALEXANDRIA’S MEMORY…….WELL, YOU GO BABY !!!!!!!!!!!!!! He trained hard. He worked hard. He endured all the hills and mountains before him and raised a HUGE, WHOPPING, $ 6,500.00 for the Leukemia and Lymphoma Society. For those of you who do not understand the enormity of what this man (and his VERY supportive wife) did for us…….please know this…….IT IS UNBELIEVABLE what he accomplished for TNT (Team and Training). His efforts and contributions (along with his good buddy Rick) should be applauded !!!!!!!!!!!!!!!!!!!!!! These guys are awesome, and that is an understatement.
To Bill and Nancy Cole, THANK YOU, THANK YOU for everything you have done for many year’s for this Foundation. Alexandria is looking down on you and is so proud of you both. We love you guys and are so appreciative of everything you have done and continue to do. Nancy, despite a pregnancy that rendered you…….well, very sick and nauseous and completely worn out, you persevered. You made sure that this tournament would be a success.
MARGIE RICHARDS …………..YOU ARE THE WOMAN !!!!!!!!!!!! I am so amazed at what you are able to accomplish each and every year. Nancy you are so lucky to have your sister…..SHE ROCKS !!!!!!!!!!!!!!!!!!!
Heidi …….Margie’s partner in crime…….YOU ROCK TOO !!!!!!!!!!!!!!!
Wendy Riney, you worked so incredibly hard to help with the golf touranment which will help your brother's daughter Jenna. You went above and beyond and we were so thankful for your contributions and support this year. For every single effort and acheivement towards our goal, we thank you.
Jeanine Riendeau and Thom Shoemaker, once again…….YOU ARE THE MAN AND THE WOMAN. You guys are AWESOME !!!!!!!!!!!!!! You never gave up, never gave in. To the end, you sought out sponsors and donations. THANK YOU !!!!!!!!!!!!!
Jeanine, I value your friendship more than you could know.
Chris and Sheryl Andrasko, neighbors just do NOT get better than this. You guys are so amazing, helpful, and charitable. Thanks to Chris A’s Catering for an AWESOME boxed lunch for the second year in a row.
Thanks to Sherry Danforth for helping us the day of the golf tournament. Thanks to Evelyn Johnson and Shannon Raye for their help decorating the tables at Old Hickory. I cannot tell you how much I appreciate all of your help !!!!!
Pam Passwater…….You are AWESOME too and thank you for volunteering your time and talents once again. This woman not only dedicates herself to Dream Factory (the wish organization the granted Alexandria her wish of going to Disney) but she does this willingly and energetically without one cent of compensation for her time. That is right, Dream Factory representatives give of their time freely........literally. They should all be applauded for their undying, relentless efforts to help those who are afflicted with such devastating diseases.
There are SO many people that I know I left out. Please forgive me. I am overwhelmed at the generosity of SO many. We will be able to help SO many kids with cancer due to your kindness.
We are indebted to each of you who helped in our mission.
I will update more in the near future.
God Bless-
Alison
Sunday, October 24, 2004 7:24 PM CDT
Stay Tuned.........update coming soon.........
God Bless-Alison
Sunday, September 19, 2004 11:00 PM CDT
~from Safe Passage (Words to help the grieving hold fast and let go)
by Molly Fumia ....
"Beginnings"
Grief is a trail of dreams, fulfilled and unfulfilled, all that could
have been, never can be again. On this forlorn night walk, the path
to new promises is still beyond the horizon, awaiting the hazy, yet
inevitable, future.
I am disoriented by death. I do not know where I have been or where
I am going. The familiar landmarks are out of view, coldly covered
by death's icy grip.
My confusion has, at least, demanded that I cease moving. Standing
still will restore my sense of direction, and what remains of my
inner fire will warm the way toward healing.
I know that it has been a long time since last I wrote. My mind has been heavy laden with triumphs and misfortunes. As many of you know, Caden Ballard, Connor's 2 and a half year old brother, was diagnosed with ALL recently. Connor was diagnosed last year. My heart was saddened, my mind boggled at how this could be. How, once again, this family could be struck be lightening. After all, don't they say lightening can only strike once? Apparently for the Ballard's and several other families we know, the answer to that question is yes. I was in shock, denial, when Evelyn, mom to Angel Sarah, stopped by my house last Friday night to share this dreadful news. My closest friends were afraid to call me, afraid of how I would react to this horrible news. I remember Evelyn saying the words as I leaned in her car next to Adri. I quickly fell to my knees and uttered time and time again, "No, No, No." I just could not believe what she was saying. The Ballard's also have a young daughter and a newborn son. I cannot imagine their pain. I cannot imagine their suffering. I cannot fathom their fear..... two children with cancer. My heart has been hurting. My mind cannot comprehend this reality. How can this be? How can any family endure such difficulties? So, yes, my mind races back to dates etched in my mind. I worry for my other children. I think about Alexandria. I think about all of the hardships our family has endured since her passing. I wonder how much of an impact her life made on many.........what it did not do for others to change their ways. I think of how I miss her. With each tragedy, with each death, with each newly diagnosed child, things do not get easier. To the contrary actually. With Kailie's death, I was rocked to the core of my being. It was if I was re-living the nightmare of last year. I have felt so strong for so long, yet, how easily I am brought right back to February 16th, 2003. It does not take but a moment to revisit that time, that place. The pain is so intense it can take my breath away. It is if someone is ripping through my heart with a sharp, hot dagger. I do realize another reason for these emotions, for these uncontrollable feelings. Each year as the golf tournament approaches, I feel myself in this place. Recognizing the need to help others. Feeling their pain, their desperation. The first golf tournament that Ann Newsham single handedly put together, was just after a fight for Alexandria's life. She had just made it through a horrific infection and PICU visit. She won, that time. The next golf tournament was held by the Cole's, Zanti's and Whalen's working their tails off while we once again fought for Alexandria's life through relapse and BMT. Last year and this year's golf tournament, our family and countless others have come together to support our efforts to help other families. It conjurs up so many mixed emotions. I am SO grateful to help others, yet it is difficult as well. It means I am still living in this world of sorrow and sickness. I am still surrounded by children who are ill, who are fighting for their lives. That is never easy to watch, but I suppose all the more reason to carry on our mission to help them.
Tonight as we held our weekly Alexandria's Angels Foundation meeting, a child emerged from the hallway of Heidi's home. This child has wisdom way beyond yours or mine. He is brave, braver than you or I. He is happy. He is loved, loved by a brother who watched carefully over each step he took. He is positive and uplifting. He walks with a cane, yet he never views it as any thing other than his reality, his life. It is Kenny Shiels that I speak of. The foundation sponsored him last year and plans to sponsor him again this year. He cannot see with his eyes, due to a brain tumor and many surgeries, yet he see's with his soul and heart. He is amazing. He looked so good today, I was filled with gladness and hope for him. Upon seeing him initially, my heart and mind were overtaken by emotions. I had not seen him for almost a year. At that time, he was so frail. So different from the boy that stood before me now proudly wearing his "Alexandria's Angels" t-shirt. I was moved to tears and quickly exused myself to pull it together in the bathroom.
After the meeting, as I helped Kenny off the floor where he took a nap, he told me he loved me. He told me "thank you" for what I was doing. He told me that chicken nuggets from McDonald's were his favorite food and that his friend Katie from school was "cute, no beautiful." He told me that I made him laugh. My heart filled to the brim. He said he loved Margie and Heidi. A quick smile from this young boy and your heart is captured for sure. It all makes sense. I realize every call we make, every sponsorship we receive, every golfer who participates, every donation, no matter how big or small will make a difference in these children's lives. So innocent. So pure, these children of God.
I watched Kenny devour a bowl of cheetos and a glass of chocolate milk. Really, who needs more than that? People who love you, people who take care of you, chocolate milk and cheetos.....life is good.
Once again, this weekend, the life of a child with cancer ended all too soon. Carol called me from Florida to tell me that Cassidy had passed away. I just want it all to end. I want a cure to be found so that we can stop burying so many children. I want a cause to be found so we can stop having so many children diagnosed each year. Yes, my heart is heavy at times. It is full of sorrow for all that this disease has destroyed, yet I am still motivated. I am motivated more than ever to raise funds to help families destroyed by this disease. I am inspired to be a better person because of the example of these children, whose fight, whether they win on earth or in heaven, was done with such hope and faith. We should all heed their lessons.........
thanks be to God-
Alison
Many people are unaware that childhood cancer is the leading disease related cause of death in children, or that each year 12,500 children are diagnosed with cancer, or that the incidence of childhood cancer has increased every year for the last 25 years, or that tremendous progress is being made to find cures, but we have a LONG way to go.
September is Childhood Cancer Awareness Month. You have the opportunity to help raise awareness of childhood cancer in your community. You, your family, friends and neighbors CAN make a difference.
Many families with a chronically or terminally ill child face the loss of pay for weeks and months at a time, potential loss of employment, and even personal bankruptcy as a result of caring for their child. Families often face additional non-medical expenditures associated with traveling to and from the hospital, hotels, and meals away from home, as well as childcare for their other children. These non-medical out of pocket expenses associated with providing treatment for the cancer child have shown to average 38f a family's gross income. There are many families who need our support.
Since inception four years ago, the Alexandria's Angels Foundation has raised nearly $ 100,000 to help with the financial burden these families endure through long courses, sometimes years, of treatment. In recent years, due to the generousity of people like you, the foundation has paid mortgage payments, medical expenses, and supported Caringbridge, a service offering free web pages to those receiving medical care. We have given Christmas and birthday presents to not only the child who is sick, but to their siblings as well. We have also provided food to parents at St. Louis BMT units.
Our mission is simple; to help families in these situations by providing gifts, smiles and hope. We know in our hearts that our daughter is looking down from heaven and is proud that we have continued this mission in her memory. There are many things this disease took from our family, but much we have gained as well. The Alexandria's Angels Foundation grew out of the desire of friends and neighbors to help our family cope with our own overwhelming expenses. It is now the desire of my husband Grant and I, to continue to share with others the blessings that were bestowed upon us. Thank you in advance for any support to this cause and making a difference in a child's life. Each of you are "Alexandria's Angels," and for that we are grateful.
God Bless-
Alison
To send contributions to this year's cause the address is:
Alexandria's Angels Foundation
c/o Alison and Grant Haddock
241 Chestnit Hill Drive
O' Fallon, MO 63366
636-561-8680
314-503-5882
Friday, August 27, 12:20 A.M CDT
If I Had My Life To Live Over
by Erma Bombeck
I would have talked less and listened more.
I would have invited friends over to dinner even if the carpet was stained and sofa faded.
I would have eaten the popcorn in the 'good' living room and worried much less about the dirt when someone wanted to light a fire in the fireplace.
I would have taken the time to listen to my grandfather ramble about his youth.
I would never have insisted the car windows be rolled up on a summer day cause my hair had just been teased and sprayed.
I would have burned the pink candle sculpted like a rose before it melted in storage.
I would have sat on the lawn with my children and not worried about grass stains.
I would have cried and laughed less while watching television - more while watching life.
I would have shared more of the responsibility carried by my husband.
I would have gone to bed when I was sick instead of pretending the earth would go into a holding pattern if I weren't there for the day.
I would never have bought anything just because it was practical, wouldn't show soil or was guaranteed to last a lifetime.
Instead of wishing away nine months of pregnancy, I'd have cherished every moment and realized that the wonderment growing inside me was the only chance in life to assist God in a miracle.
When my kids kissed me impetuously, I would never have said, "Later. Now go get washed up for dinner."
There would have been more "I love you"... more "I'm sorry"... but mostly, given another shot at life, I would seize every minute...look at it and really see it...live it... and never give it back.
Oh, but are these not strong lessons to live by??? I think I will read them again and try to apply them to my own life.
Phil. 4:13 states: "I can do all things through Christ who gives me strength."
Here's the story:
A young man who had been raised as an atheist was training to be an Olympic diver. The only religious influence in his life came from his outspoken Christian friend. The young diver never really paid much attention to his friend's sermons, but he heard them often.
One night the diver went to the indoor pool at the college he attended. The lights were all off, but as the pool had big skylights and the moon was bright, there was plenty of light to practice by.
The young man climbed up to the highest diving board and as he turned his back to the pool on the edge of the board and extended his arms out, he saw his shadow on the wall. The shadow of his body, was in the shape of a cross. The man felt a strange feeling, like someone was speaking to him. Instead of diving, he knelt down and finally asked God to come into his life.
As the young man stood, a maintenance man walked in and turned the lights on. The pool had been drained for repairs.
Yes, I do Love Jesus. He is my source of existence and Savior. He keeps me functioning each and everyday.
"Without Him, I will be nothing. Without him, I am nothing but with Him I can do all things through Christ that strengthens me." Phil 4:13.
St. Therese's Prayer:
May today there be peace within. May you trust your
highest power that you are exactly where you are
meant to be. May you not forget the infinite
possibilities that are born of faith. May you use
those gifts that you have received, and pass on the
love that has been given to you...May you be content
knowing you are a child of God...Let this presence
settle into our bones and allow your soul the freedom
to sing, dance, praise and love.
It is there for each and every one of you.
Saint Therese is known as the Saint of the Little
Ways. Meaning she believed in doing the little
things in life well and with great love. She is also
the patron Saint of flower growers and florists. She
is represented by roses. May everyone be blessed who
receives this message.
THIS IS AN URGENT REQUEST !!!!!!!!!!!!!!!!!
7 year old Matthew Pearl from St. Louis needs a bone marrow match........
IT COULD BE YOU !!!!!!
His counts have dropped and he desperately needs your help.
Please come out and support Mike Matheny and your St. Louis Cardinals in the
2004 PITCH FOR LIFE BONE MARROW DRIVE
Date: Saturday, September 4, 2004
Time: 9-5 p.m.
Location: Carpenter's Union Hall
1401 Hampton Avenue (West Side between Hwy 40/44)
Cost: FREE TO THE FIRST 800
Special appearances by Cardinal players and give-a-ways during the event.
Saturday, August 21, 2004 0:44 AM CDT
Jesus, I heard you had a big house,
Where I could have a room of my own.
And Jesus, I heard you had a big yard,
Big enough to let a kid roam.
I heard you had clothes in your closet,
Just the right size that I wear,
And Jesus, I heard if I give you my heart,
Then You would let me go there.
Jesus, I heard about meal time,
When all your children come to eat,
I heard you had a great big table
Where every kid can have his own seat.
Jesus, they said there will be plenty,
Of good things in heaven to share,
And Jesus, I'd just like to tell you
I sure would love to go there.
Jesus, I heard in your big house
there's plenty of love to go around.
I heard there's always singing and laughter
To fill the place with happy sounds.
And I've been thinking that a friend
Who would give me all that he's got
Before I even have met Him
Well, He sure must love me a lot.
And Jesus, I'd just like to tell you,
I sure do love you a lot.
Kailie, I was honored and felt so priveledged when your mommy and daddy would call me daily to let me know how you were doing. I was so completely happy to come to the hospital to see you, to hold your hand, to watch over you while your parents spent time with your brothers Ian and Jaren. I could not have been given any greater gift than to spend so much time with you in these last few months. I will always treasure our time together. I know you were sleepy from your medicines, but when I would ask you questions and you would respond by squeezing my hand, the world seemed to stop, and my heart soared. I was captivated by your ability to hear me and to let me know that you understood what I was saying. If given the opportunity, the only thing I would change is that I would have spent even more time with you. Your ability to capture the hearts of so many is apparent. You are a true testimony of faith, hope, and the belief in Jesus Christ. I am so blessed.... blessed beyond words that I was one of the lucky one's. Lucky to have known you, lucky to know your parents. I cannot think of a more faithful family than the Rhines'. I am in awe of the strength they exude. I can so vividly see how you got your strength.......it is quite evident from watching your parents for the last months, and in the last days as well. This not only pertains to your immediate family, but extended family as well. To see your aunts, uncles, cousins and grandparents surround your brothers and parents this weekend was heartwarming. I have enjoyed getting to know your grandmother Elaine better these past few weeks. The love for her granddaughter and daughter is remarkable. The strength she displays is amazing. Hope radiates from her. She is one in a million and I would be proud to call her my own mother. Ronda, has been an amazing support system for your mommy. She has been there from the start, through thick and thin, by Johnelle's side to help her and guide her. She has provided a shoulder to cry on, an ear for listening and a helping hand whenever needed. God sent her to your family, thanks be to God for that. To John and Johnelle's many beareved friends at St. John's and elsewhere, it has been a priviledge to walk with you, walk with them on this most difficult journey. You all are to be commended for comforting them as you have been comforted by others in your time of grief. To my family, neighbors and friends who have continously asked about Kailie over the last few months, have prayed for her, or helped their family in any way.........GOD BLESS YOU !!!!!!!! I cannot tell you what it means to me that you cared so much about this family and were so concerned for her and her family. Many of you have called and e-mailed me in the past few days to see how I was holding up. Words cannot express the gratitude I feel when I see such acts of kindness and concern. So many of you are genuinely concerned about how Grant and I are faring through this ordeal that hits so close to home. I admit, these weeks have not been easy. There were times that we were quickly taken back to 18 months ago, and our own loss of Alexandria. Grant and I prayed together and God, as always, provided for us. He provided us with knowledge of what to say and what to do. Only God could give us that strength to make it through and we give Him all the glory. What a blessing, what a gift from above. Alexandria, no doubt, had a hand in this as well. I will glorify the Lord and give all credit to Him for anything and everything that Grant and I were able to provide the Rhines' family. While sitting with Kailie on numerous occasions, my mind would drift back to last year. It was a weekend in February that I sat in the bed snuggled up with Alexandria as her earthly battle came to an end and her eternal life began. Kailie's room was similiar to Alexandria's. The border around the room was the same. I walked the same halls. I saw and spoke with some of the same doctors, nurses and clergy. Painful memories flooded my mind, yet I felt peace. I knew Kailie was one of the lucky one's. She was going to be with Jesus. God and Alexandria were watching closely over me. They made it alright. I could never do what I have done on my own. I am not that strong. I tell you my friends it is only by the grace of God that Grant and I have been able to support this family. I take NO credit. When asked, "how do you all do it?" "How can you be so strong for them when you are still in the grief process yourselves?" Again, I reply, it is my Lord and Savior who comforts and gives strength to me so that I may reciprocate to others. I have met some incredible doctors, nurses, Team in Training folks, Leukemia/Lymphoma people, Friends of Kids With Cancer, and church members over the last few months. What an absolute BLESSING this has been to my life. I am so honored to know each of you. What an incredible support team this family has been blessed with. I have Kailie to thank for so much in my life. My faith has grown because of her journey. Many have been saved because of a 13 year old girl. THANKS BE TO GOD !!!!
I helped Johnelle go through years of pictures to make a collage for the service on Saturday. Again, what a blessing that I got to see so much of Kailie's life through the gift of photography and videos. Her smile, amazing. Her charm, endless. Her gifts apparent. Her love for Jesus, unending and immeasurable. What we all could learn from a thirteen year old young lady.........PRICELESS........absolutely priceless. As I spoke softly to Kailie in her final hours, I asked her to tell Alexandria hello and that I love her when she got to heaven. I did not tell her goodbye, but that "I will see you again." Kailie, I love you sweet girl, I love you as if you were my own. Tomorrow, your Service will bring about many emotions for all in attendance, but we will celebrate the life of a beautiful spirit, a gift to the world...... gone too soon but never to be forgotten.
Till we meet again-
Alison
Saturday, August 14, 2004 2:35 AM CDT
I am not sure if I will ever put this journal entry on the website, but felt I needed to write my feelings down. Tonight, Grant went with John Rhines, Kailie's dad to a Ram's football game, compliments of a WONDERFUL organization called Friends of Kids With Cancer. Grant was so flattered that John had asked him to go. Grant told me that he was thrilled that John would be getting a little break away from the hospital. As I lay in my bed this evening, in a state somewhere very close to sleep, the phone rang. I don't like for my phone to ring this late. It has taken me a long time to restrain myself from heart palpitations when the home phone or cell phone rings. Several times over the past few years, it was Grant, or a doctor delivering bad news. It was just like the "bad news room" at the hospital. You were okay with things until the docs asked you to step into this room away from the other rooms. It meant they had bad news. It meant there would be an emotional reaction to their information and they wanted to remove you from others and your child. I could not get to the phone when it rang, but when I saw caller i.d. say it was "SSM Glennon", my heart sank. I knew Johnelle's mom was with Kailie at the hospital because Johnelle had to take Jaren to get glasses tonight. My heart palpitations increased as I dialed the number to PICU and asked for Kailie's room. The young woman said, "I cannot transfer you, they are not in their room right now and won't be for at least 30 minutes." I felt immediately in my heart that they were in CT scan because Kailie must have had another episode. I was right. I called Grant on his cell phone and he said they had left the game and were at CT scan.
I am on my knees once again in prayer. Dear Heavenly Father, please let Kailie live, please let her be the one to defy the odds, to beat this monster. She deserves it. She is such a faithful servant, Lord. Please Lord, please comfort John and Johnelle. This journey is so hard. It causes so much pain and heartache despite our knowledge that "Thy will, will be done." I know your plan will be implemented. I know you have Kailie's best interest at heart. I know you love her more than all of us here on earth put together. It is so hard to fathom that in the midst of her being such a testimony of faith to so many, she could be called home. We all know that in our minds, just not sure our hearts have processed that possibility. It is 11:00 p.m., an hour and a half since I spoke with Grant. I feel sick to my stomach. My mind begins to wonder but I try to stay focused. I try to remain full of hope despite the statistics, despite the realities of the situation. I just spoke with John. Her eyes are fixed, they are unresponsive to light. This is not good news. The resident doctor said to John that Kailie had no brain stem reflexes. John did not know what he meant by that. "What does that mean?" "Is she brain dead" I thought to myself at the precise moment John said, " I wonder if that means she is brain dead?" He then quickly followed that with a "Kailie will pull through this, again, she is going to be fine." Oh my heart aches from the stabbing pain I feel for Kailie's mom and dad. I'm on my knees my friends and I won't give up hope..........
That was written last night, and now I sit, before my computer at 2:00 a.m. I have been with Kailie and her family since noon today. It is with the heaviest of hearts that I sit here at my computer 18 months after losing Alexandria and again, bring you such horrible news. I must share with you that God is calling Kailie home. Her pupils remained fixed and dilated all day. The doctors came in this evening and said that the HLH has basically taken over her brain. Only the brain stem which is controlling her breathing and her heart remained uneffected, yet temporarily. Later in the evening the neurosurgeons explained to John and Johnelle that the Kailie they knew would never be back, the damage done to her brain was irreversible. She will be taken off life support tomorrow after all family members have come to the hospital and say their goodbye's. There is so much more that I want to say, so much more I want to explain, but tonight, I just do not have the energy or the words. Please pray for strength and comfort for John and Johnelle and the rest of their families as they endure what is undoubtedly the most difficult time they will ever experience in their lives. My heart aches for what they will endure tomorrow and the days and weeks to come.
God Bless and thank you for your Kares 4 Kailie....
alison
Wednesday, August 11, 2004 8:54 PM CDT
Hope is the thing with feathers that perches in the soul and sings the tune without words and never stops at all.
Emily Dickenson
If I have no hope, I have nothing to live for. I sit, I ponder. I wonder quietly to myself, why so many children, why do so many have to die? Why are we not closer to finding cures? Why does a boy or girl have to lose his sister........a mother or father a daughter? I do understand to some extent why some are chosen to walk this path, yet perplexed by others. Multiple losses........unfathomable to me. I do not question God's plan, yet my heart aches for the outcomes. I see young girls, Alexandria's age run by my home. They are playing, laughing as girls should, and I long to see my daughter do the same. It will be a long while.......until I get to heaven. Why this journey must be so intense and all-consuming, I will not understand until I meet my Maker. In the meantime, I must pray and ask for strength and guidance for the rest of my days. I do not have to completely understand it all to appreciate it for what it is. This grief journey is long. It is a heavy burden to bear. But I am able to smile again, to laugh again.
On Easter of this year, we were dying Easter eggs, and talking with the kids. I said, "Remember last Easter when we colored the eggs "tie-dye?" Hayden said, "No Mommy, we dyed them, you did not help us last year." My heart sunk as I vividly recalled the previous year and how I stayed in my bed because I could not handle celebrating without Sissy. I wanted to shut the world out. I wanted to lock myself away from the torment of the past and her memories. It was too painful. I believe it was then that it hit me hard. I must live for my other three children. I must live for them, they need me, they need their mommy. It was then that it occured to me that I must try to move forward. I would never forget the past, but look to the future for their sake, for my sake. I have tried not to look back, but to the future. I know that blessing was sent from Alexandria who wanted her sister and brothers to have a mommy who was happy and not sad. Does it break my heart to tell my new friends our story? Absolutely. Does it crush me to walk through this journey with close friends who are enduring the same awful reality that we did? Yes !!! Does it physically hurt to think of the children that I have grown to love go through such physical pain? You bet. My heart aches for their families, for I know what they are enduring and it is SO difficult. Sometimes I feel that I cannot share all of my feelings. I would never want to jeopardize the trust and friendship of those we are so close to. It is, after all, their story, to share or not to share. However, I will say, that despite what it may outwardly appear, I am deeply troubled and deeply saddened by those that we are close to having to go through such hardship. I pray for them more than they will ever know. I lose sleep with concern I have for their families. I suppose the natural thing for a person in my shoes to do would be to walk (no, acutally run) away from this horrible reality of childhood cancer. And yes, there are days when I would like to do just that. But most days I sit back and remember. I remember sitting and waiting. Waiting long days at the hospital for tests to be performed, results to come back. I remember sleepless nights in the hospital. I remember feeling all alone. I remember feeling helpless and hopeless. I recall feelings of despair and sorrow. Yet, my child was alive, and I was thankful......I was blessed. I want to help others facing these uncertain circumstances. We need not walk alone in this journey...................
Let us hope and pray for the day that there will no more journal entries that read as follows:
Tuesday, August 3, 2004 8:50 PM CDT
Celeste will be cremated tomorrow, in the presence of her parents - Jer and I. Her angel dust will remain with us, until they will be intermixed with my own remains when my fate provides the appropriate time. We are going to find a very most special urn/container tomorrow, afterwards. This will be a very long, horrific day. Today, we visited with Celeste at the Funeral Home. I got to kiss her feet, hands, cry my tears on her little body...
Please keep Kailie in your prayers as she faces surgery tomorrow to remove her spleen.
Please pray for all the children facing this dreadful disease and the parents who must walk with them on this path.
God Bless-
Alison
Friday, August 6, 2004 8:18 PM CDT
THE ANT AND THE CONTACT LENS
A true story by Josh and Karen Zarandona
Brenda was a young woman who was invited to go
rock climbing. Although she was very scared, she
went with her group to a tremendous granite
cliff. In spite of her fear, she put on the
gear, took hold of the rope, and started up
the face of that rock.
Well, she got to a ledge where she could take a
breather. As she was hanging on there, the
safety rope snapped against Brenda's eye and
knocked out her contact lens.
Well, here she is, on a rock ledge, with
hundreds of feet below her and hundreds of feet
above her. Of course, she looked and looked
and looked, hoping it had landed on the ledge,
but it just wasn't there.
Here she was, far from home, her sight now
blurry. She was desperate and began to get
upset, so she prayed to the Lord to help her to
find i! t.
When she got to the top, a friend examined her
eye and her clothing for the lens, but there was
no contact lens to be found. She sat down,
despondent, with the rest of the party, waiting
for the rest of them to make it up the face of
the cliff.
She looked out across range after range of
mountains, thinking of that verse that says, "The
eyes of the Lord run to and fro throughout the
whole earth." She thought, "Lord, You can see
all these mountains. You know every stone and
leaf, and You know exactly where my contact lens
is Please help me."
Finally, they walked down the trail to the
bottom. At the bottom there was a new party of
climbers just starting up the face of the cliff.
One of them shouted out, "Hey, you guys! Anybody
lose a contact lens?"
Well, that would be startling enough, but you
know why the climber saw it? An ant was moving
slowly across the face of the rock, carrying it
on it'! s back.
Brenda told me that her father is a cartoonist.
When she told him the incredible story of the
ant, the prayer, and the contact lens, he drew
a picture of an ant lugging that contact lens
with the words, "Lord, I don't know why You want
me to carry this thing. I can't eat it, and
it's awfully heavy. But if this is what You
want me to do, I'll carry it for You"
I think it would probably do some of us good to
occasionally say, "God, I don't know why you
want me to carry this load. I can see no good
in it and it's awfully heavy. But, if you want
me to carry it, I will."
God doesn't call the qualified, He qualifies the
called. Yes, I do love GOD. He is my source of
existence and my Savior. He keeps me functioning
each and every day. Without Him, I am nothing,
but with Him...I can do all things through
Christ which strengthens me. (Phil. 4:13)
My dearest, sweet Sissy Girl-
Oh how I thought of you today. A million times my thoughts turned to you today, yet I did not shed a tear. I am not sure if they will come or not. I do rejoice in the thought that you were having a pink-filled, fairy princess birthday party, or a tea party, or are you too old at 11 now to do such little girly things? I know it must have been some kind of celebration. You always did love a good party. I can only imagine what yours was like today. Thank you Alexandria, for being such a wonderful daughter, sister, cousin, friend. You have blessed so many people by your faith and spirit. You are an inspiration to so many. Keep guiding us from your heavenly home. We all love you and miss you terribly. We hold on to the fact that we will see you again some day, and this time it will be for eternity. God Bless you and keep you my precious child, until we meet again.
I love you-
your mommy forever and ever
Friday, August 6, 2004 8:18 PM CDT
THE ANT AND THE CONTACT LENS
A true story by Josh and Karen Zarandona
Brenda was a young woman who was invited to go
rock climbing. Although she was very scared, she
went with her group to a tremendous granite
cliff. In spite of her fear, she put on the
gear, took hold of the rope, and started up
the face of that rock.
Well, she got to a ledge where she could take a
breather. As she was hanging on there, the
safety rope snapped against Brenda's eye and
knocked out her contact lens.
Well, here she is, on a rock ledge, with
hundreds of feet below her and hundreds of feet
above her. Of course, she looked and looked
and looked, hoping it had landed on the ledge,
but it just wasn't there.
Here she was, far from home, her sight now
blurry. She was desperate and began to get
upset, so she prayed to the Lord to help her to
find i! t.
When she got to the top, a friend examined her
eye and her clothing for the lens, but there was
no contact lens to be found. She sat down,
despondent, with the rest of the party, waiting
for the rest of them to make it up the face of
the cliff.
She looked out across range after range of
mountains, thinking of that verse that says, "The
eyes of the Lord run to and fro throughout the
whole earth." She thought, "Lord, You can see
all these mountains. You know every stone and
leaf, and You know exactly where my contact lens
is Please help me."
Finally, they walked down the trail to the
bottom. At the bottom there was a new party of
climbers just starting up the face of the cliff.
One of them shouted out, "Hey, you guys! Anybody
lose a contact lens?"
Well, that would be startling enough, but you
know why the climber saw it? An ant was moving
slowly across the face of the rock, carrying it
on it'! s back.
Brenda told me that her father is a cartoonist.
When she told him the incredible story of the
ant, the prayer, and the contact lens, he drew
a picture of an ant lugging that contact lens
with the words, "Lord, I don't know why You want
me to carry this thing. I can't eat it, and
it's awfully heavy. But if this is what You
want me to do, I'll carry it for You"
I think it would probably do some of us good to
occasionally say, "God, I don't know why you
want me to carry this load. I can see no good
in it and it's awfully heavy. But, if you want
me to carry it, I will."
God doesn't call the qualified, He qualifies the
called. Yes, I do love GOD. He is my source of
existence and my Savior. He keeps me functioning
each and every day. Without Him, I am nothing,
but with Him...I can do all things through
Christ which strengthens me. (Phil. 4:13)
My dearest, sweet Sissy Girl-
Oh how I thought of you today. A million times my thoughts turned to you today, yet I did not shed a tear. I am not sure if they will come or not. I do rejoice in the thought that you were having a pink-filled, fairy princess birthday party, or a tea party, or are you too old at 11 now to do such little girly things? I know it must have been some kind of celebration. You always did love a good party. I can only imagine what yours was like today. Thank you Alexandria, for being such a wonderful daughter, sister, cousin, friend. You have blessed so many people by your faith and spirit. You are an inspiration to so many. Keep guiding us from your heavenly home. We all love you and miss you terribly. We hold on to the fact that we will see you again some day, and this time it will be for eternity. God Bless you and keep you my precious child, until we meet again.
I love you-
your mommy forever and ever
Wednesday, August 4, 2004 8:57 PM CDT
You know you are tired when you not only spell the word dictionary wrong, but you don't even catch the mistake after proof reading it.....whoops !!!!
Also did not mean to exclude my dear friend and neighbor Jeanine........again, I was exhausted when I wrote it.
Well, just mainly wanted to say............
Happy Birthday to Addison cha cha cha
Happy Birthday to Addison cha cha cha
Happy 5th birthday dear Addison
Happy Birthday to you......CHA CHA CHA !!!!!!!!!
Mommy loves you Addison. You are the light of my life. (as well as the boys)
Alexandria, we are anxiously awaiting your birthday on Friday and wonder if you will be 11 in heaven, or if you stayed nine and a half? I bet your choice was to continue to grow older.
Grant was disappointed that he had to be away for a National Meeting this week. (don't anyone worry too much, he is in Malibu, CA) Anyways, we are doing just fine here and keeping very busy while daddy is out of town. We have been to the movie "Cinderella Story" and to the City Museum. Who knows what we will do next????
Please continue to pray for Kailie as she has many hurdles to get past. However, we will all remain hopeful for her complete healing on this earth. I know John and Johnelle are eternally grateful for the support everyone is giving their family.
Please continue to pray for
Cassidy, relpased post BMT, @ .........www.caringbridge.org/fl/cassidy
Matthew Pearl, a 7 year old boy who needs a bone marrow transplant, but no matches have been found on the registry.
www.alexandmatt.com
The O' Fallon family who lost their 28 year old husband/dad to lung cancer, and 4 year old daughter Mackenzie has cancer as well. Please pray for Shana (mom) that she has the strength to get through the next few difficult weeks and months ahead. If you would like to help any of these families out, please e-mail me.
God Bless-
Alison
Saturday, July 31, 2004 1:52 AM CDT
Let me repeat myself..............
GOD IS GOOD ALL THE TIME !!!!!!!!!!!!!!!!!!!!!!!
Kailie update:
Just as I write and beg for prayers, it is equally important for everyone to know that God is listening and is healing Kailie. It has been a few awesome days, filled with good news. She had her BMA, which showed no blasts, she was breathing above the vent, and as of today
IS OFF THE VENT !!!!!!!!!!!!!!!!! PRAISE THE LORD PRAISE THE LORD PRAISE THE LORD. Her cranial drains were removed, she is still responsive, she is still fighting with everything in her. It warms my heart to be able to bring this great news to you. It has been one setback after another and it is so refreshing to be able to give a good report. Thanks to each and every one of you who is helping the Rhines family in one way or another. I know they are overwhelmed with your support and generousity.
This past weekend Dawn and I attended the Women of Faith conference here in St. Louis. I left the conference feeling many things........
Renewed
Refreshed
Rejoicing to our Lord for all my blessings
Revitalized
Recharged
Reconnected
Relaxed
and Ready to spread the Hope that I received on to others.
That was the title of the 2004 conference:
IRREPRESSIBLE HOPE.........there is power in those words.
The American College Dicctionary states that :
"Irrepressible" is difficult or impossible to control or restrain.
"Hope" is the theological virtue defined as the desire and search for a future good, difficult but not impossible to attain with God's help.
Given my circumstances, I know many of you look to me and wonder how I can have any hope. Well, to answer your question, I must have hope. For if I did not have Hope, I would have despair, and I would be of no use to anyone. This is not to say that I am finished with my grief work. It has been 18 months, one year and a half. There are no strict timelines to grief. It will affect me as a person as long as I am in this earthly body. However, I feel Alexandria's presence alot. I will elaborate on this issue in a future post. But I do know, because of my faith, that she is in heaven. I believe she is completely healed, completely happy, and watching over us constantly. I know she would not come back even if she could. It is too wonderful there. Of course, no matter how much faith we have about where our child is after they are gone from this earth, we ARE humans. God created us, and therefore knows how difficult it is to lose a child. It is quite possibly the most difficult of all human circumstances. It is something we as parents will never "get over", we just learn how to live with it day by day.
The Woman of Faith Team, consists of women who have had a multitude of challenges in their lives, and, because of their hope and faith, were able to rise above tragedy and offer encouraging words to those of us on the "other side." I don't know the exact time, or place that I realized that this life experience made a great deal of sense to me. It has evolved over time. Given my history, and work with the Alexandria's Angels Foundation, I come into contact with many families. Some of them newly diagnosed, looking for hope, some at the end of the journey, and needing a bit of hope that they can be happy again. I think Alexandria had a hand in seeing that I "got it." Now, I cannot see the FULL picture of God's plan and His work through Alexandria and myself. But I can, with my mortal mind and understanding, see the good that has come from tragedy. I know it. I see it. I feel it. Let me state for the record this feeling has been in the making for a LONG time, it did not come overnight. Each of us is put on this earth for the duration of time that God has planned for us....until our mission is complete. When we have accomplished what He wanted us to do, He will bring us home. That is why I have such a problem with the statistics of childhood cancer. Honestly, they should not say, "your child has A.L.L., the good kind." THERE IS NO GOOD KIND OF LEUKEMIA. The way I see it, none of us knows God's plan and our duration of time here, so we all have a 50/50 hance of seeing another day no matter what. God can heal you of the worst kind of cancer, with 1hance of survival, or if it is His will, He can take you home with a 95hance of survival. I say this after a week of several friends of friends, have been diagnosed with breast cancer at age 39, dying of lung cancer at age 28 and his four year old daughter has cancer too.....it all does make you stop and wonder, "What is God's purpose in this?" "What good can come of such tragedy?" I believe good can come from each and every situation. I believe we are the tools God uses to help one another through tough and trying times. If you told me this 18 months ago, I would have called you crazy, yet at this point, I can see it. I sit before this computer writing feverishly, and I can tell you only a small portion of my blessings.....the good, the positive, that has come out of tragedy. I have formed tremendous friendships. Nancy, Dawn, Sheryl, Kristen, Tracey, Judy, the list goes on and on. Not that I did not have friendships before with some of these individuals, just not to the level it is now. I do not know what I would do if not for the love and support of these individuals. You have been an intricate part of my healing and grief journey. I AM BLESSED TO CALL YOU FRIENDS !!!!!!!!! I am blessed that I had this support system, so many are alone in this process. I am blessed for the deeper relationships I have with two of my sister's out of this loss. I know I have thanked my sister Michelle on numerous occasions for all that she did for me and my family while we were going through this ordeal. I distinctly remember calling her from the clinic of Children's Hospital. I told her of Alexandria's relapse. I was devastated. Without hesitation, she replied, "don't worry, I'll be there." The next day, she was on a plane coming to St. Louis. She took her kids out of school, and came to live with us indefinitely. No excuses, just a big sister taking care of her little sister in her time of need. It was a completely selfless act. Her love and support during such a horrible time in our lives was immeasurable. No words could adequately express my gratitude for what she did for us. Few have such a wonderful relationship, I am blessed. My sister Stephanie has also been a blessing. She is always there to listen to my ranting and raving, a long-distance shoulder to cry on in my times of complete and utter depression and despair. I am blessed. I have also been blessed with new found friends along this cancer journey. I have had the honor of meeting people such as The Rhines Family, The Pearl Family, Debbie H., Carol M., Janet S., Jane O., countless bereaved parents, a quiet young man and fighter to the end, Matthew H., Kenny S.
and family, the Olson family and the Blankenship family during BMT, Dream Factory, Ms. Pam, Ms. Debbie R., Give Kids The World, the caringbridge community, neighbors and friends who have gone above and beyond the call of duty to Alexandria's Angels Foundation.......the list goes on and on. More recently, with the onset of Kailie's relapse, I have been blessed to meet at St. John's Hospital, Dr. Bob, Dr. Rob, Jill, many Leukemia and Lymphoma Society Team In Training folks, Kelly E. from Friends of Kids with Cancer, Rachel and her mom, The Livingstone's, The Mosley's, Sheila S. Then there are those who have been faithful followers of the website , always leaving encouraging words or support for our family such as Lynn from N.Y., Debbie Nagy, once again, I could go on and on. These people were not obligated in any way, shape or form to reach out to me, yet they did, I am thankful, I am blessed. I doubt I would have ever met these wonderful people had I not gone through this. I see how God intertwined our lives, made our paths cross, all for a reason.
This website has been an absolute blessing in my life. Not only have I been able to write of our journey during treatment, but in this grief journey since Alexandria passed away. I think it may have helped people to understand on a whole new level, childhood cancer. People tell me they are blessed to have known Alexandria through this website or in person, how much she meant to them, how her testimony, faith, hope, and spirit has changed them. Her life left footprints on their hearts. I am humbled, yet I am proud. However, I am also receiving the wonderful blessing of feedback from so many of you via the guestbook. The encouraging, love-filled, compassionate outpouring of support we have received is overwhelming. A blessing indeed.
I appreciate the fact that I am in a place where there are SO many resources available. Whether it be internet, books, conferences, there are a wealth of resources at my disposal. Many people do not have these tools to help them learn from others. A blessing? Absolutely.
My faith and Grant's faith has grown exponentially. Our marriage has not been torn apart like so many are having gone through such a life-changing ordeal and loss. Our marriage has flourished, evolved to a whole new level. We vowed not to be the statistics they warned us about in the beginning. I love him more today than I did 16 years ago because of what we have shared together. He is the one person I can trust to completely understand my feelings, up, down or somewhere in between. We have been blessed to grieve similarly. I know that he loved Alexandria as much as I did. I can always trust that he has been thinking about her as much as I have on any given day. We can always share a memory whether happy or sad. He, above all others, knew her like I knew her....every little detail. He loved that child like no other father has loved a daughter. Their bond was amazing. To watch Alexandria with her daddy and know that they had such a connection, such a love for one another, again, a blessing.
So, you ask me how I can have hope, and I will reply, "don't look at what I have lost", look at what I have gained." "Look at the good that came from tragedy, a terrible loss, yet at the same time blessings evolve from it. And then I will tell you again, God is good all the time. It may not be our timeline, or our wishes, but He has a plan for you. Whether it is 3,405 days you are on this earth, as the case with Alexandria, or one tiny hour, your life means something to Him, who created you for a specific purpose. He see's you, He knows your pain, yet He will never leave you nor forsake you. I know we will all be inundating God with questions when we get to the other side, but that is what faith is all about....trusting what we cannot see.
Well, I have rambled enough for one evening. Thanks for listening, thanks for being my blessing.
Please continue to pray for Kailie to receive complete healing on this earth, and for her family as they endure this nightmare for the last 6 weeks.
Please pray for Cassidy in Florida, who also just relapsed post BMT, and may have run out of options in treatments.
www.caringbridge.org/fl/cassidy
Please pray for Casey in Arizona, as he also relapsed this week, 21 months out of BMT.
Please pray for a family here in O'Fallon whose daughter was diagnosed with cancer within weeks of her 28 year old dad's diagnosis of lung cancer. He passed away in his sleep last night. Please pray for comfort and strength for mom Shana, and for healing for Mackenzie.
In Christ-
Alison
Saturday, July 31, 2004 1:52 AM CDT
Let me repeat myself..............
GOD IS GOOD ALL THE TIME !!!!!!!!!!!!!!!!!!!!!!!
Kailie update:
Just as I write and beg for prayers, it is equally important for everyone to know that God is listening and is healing Kailie. It has been a few awesome days, filled with good news. She had her BMA, which showed no blasts, she was breathing above the vent, and as of today
IS OFF THE VENT !!!!!!!!!!!!!!!!! PRAISE THE LORD PRAISE THE LORD PRAISE THE LORD. Her cranial drains were removed, she is still responsive, she is still fighting with everything in her. It warms my heart to be able to bring this great news to you. It has been one setback after another and it is so refreshing to be able to give a good report. Thanks to each and every one of you who is helping the Rhines family in one way or another. I know they are overwhelmed with your support and generousity.
This past weekend Dawn and I attended the Women of Faith conference here in St. Louis. I left the conference feeling many things........
Renewed
Refreshed
Rejoicing to our Lord for all my blessings
Revitalized
Recharged
Reconnected
Relaxed
and Ready to spread the Hope that I received on to others.
That was the title of the 2004 conference:
IRREPRESSIBLE HOPE.........there is power in those words.
The American College Dicctionary states that :
"Irrepressible" is difficult or impossible to control or restrain.
"Hope" is the theological virtue defined as the desire and search for a future good, difficult but not impossible to attain with God's help.
Given my circumstances, I know many of you look to me and wonder how I can have any hope. Well, to answer your question, I must have hope. For if I did not have Hope, I would have despair, and I would be of no use to anyone. This is not to say that I am finished with my grief work. It has been 18 months, one year and a half. There are no strict timelines to grief. It will affect me as a person as long as I am in this earthly body. However, I feel Alexandria's presence alot. I will elaborate on this issue in a future post. But I do know, because of my faith, that she is in heaven. I believe she is completely healed, completely happy, and watching over us constantly. I know she would not come back even if she could. It is too wonderful there. Of course, no matter how much faith we have about where our child is after they are gone from this earth, we ARE humans. God created us, and therefore knows how difficult it is to lose a child. It is quite possibly the most difficult of all human circumstances. It is something we as parents will never "get over", we just learn how to live with it day by day.
The Woman of Faith Team, consists of women who have had a multitude of challenges in their lives, and, because of their hope and faith, were able to rise above tragedy and offer encouraging words to those of us on the "other side." I don't know the exact time, or place that I realized that this life experience made a great deal of sense to me. It has evolved over time. Given my history, and work with the Alexandria's Angels Foundation, I come into contact with many families. Some of them newly diagnosed, looking for hope, some at the end of the journey, and needing a bit of hope that they can be happy again. I think Alexandria had a hand in seeing that I "got it." Now, I cannot see the FULL picture of God's plan and His work through Alexandria and myself. But I can, with my mortal mind and understanding, see the good that has come from tragedy. I know it. I see it. I feel it. Let me state for the record this feeling has been in the making for a LONG time, it did not come overnight. Each of us is put on this earth for the duration of time that God has planned for us....until our mission is complete. When we have accomplished what He wanted us to do, He will bring us home. That is why I have such a problem with the statistics of childhood cancer. Honestly, they should not say, "your child has A.L.L., the good kind." THERE IS NO GOOD KIND OF LEUKEMIA. The way I see it, none of us knows God's plan and our duration of time here, so we all have a 50/50 % chance of seeing another day no matter what. God can heal you of the worst kind of cancer, with 1% chance of survival, or if it is His will, He can take you home with a 95% chance of survival. I say this after a week of several friends of friends, have been diagnosed with breast cancer at age 39, dying of lung cancer at age 28 and his four year old daugter has cancer too.....it all does make you stop and wonder, "What is God's purpose in this?" "What good can come of such tragedy?" I believe good can come from each and every situation. I believe we are the tools God uses to help one another through tough and trying times. If you told me this 18 months ago, I would have called you crazy, yet at this point, I can see it. I sit before this computer writing feverishly, and I can tell you only a small portion of my blessings.....the good, the positive, that has come out of tragedy. I have formed tremendous friendships. Nancy, Dawn, Sheryl, Kristen, Tracey, the list goes on and on. Not that I did not have friendships before with some of these individuals, just not to the level it is now. I do not know what I would do if not for the love and support of these individuals. You have been an intricate part of my healing and grief journey. I AM BLESSED TO CALL YOU FRIENDS !!!!!!!!! I am blessed that I had this support system, so many are alone in this process. I am blessed for the deeper relationships I have with two of my sister's out of this loss. I know I have thanked my sister Michelle on numerous occasions for all that she did for me and my family while we were going through this ordeal. I distinctly remember calling her from the clinic of Children's Hospital. I told her of Alexandria's relapse. I was devastated. Without hesitation, she replied, "don't worry, I'll be there." The next day, she was on a plane coming to St. Louis. She took her kids out of school, and came to live with us indefinitely. No excuses, just a big sister taking care of her little sister in her time of need. It was a completely selfless act. Her love and support during such a horrible time in our lives was immeasurable. No words could adequately express my gratitude for what she did for us. Few have such a wonderful relationship, I am blessed. My sister Stephanie has also been a blessing. She is always there to listen to my ranting and raving, a long-distance shoulder to cry on in my times of complete and utter depression and despair. I am blessed. I have also been blessed with new found friends along this cancer journey. I have had the honor of meeting people such as The Rhines Family, The Pearl Family, Debbie H., Carol M., Janet S., Jane O., countless bereaved parents, a handsome 3 year old named Kearby, a quiet young man and fighter to the end, Matthew H., Kenny S.
and family, the Olson family and the Blankenship family during BMT, neighbors and friends who have gone above and beyond the call of duty to Alexandria's Angels Foundation.......the list goes on and on. More recently, with the onset of Kailie's relapse, I have been blessed to meet at St. John's Hospital, Dr. Bob, Dr. Rob, Jill, many Leukemia and Lymphoma Society Team In Training folks, Kelly E. from Friends of Kids with Cancer, The Livingstone's, The Mosley's, Sheila S. Then there are those who have been faithful followers of the website , always leaving encouraging words or support for our family such as Lynn from N.Y., Debbie Nagy, once again, I could go on and on. These people were not obligated in any way, shape or form to reach out to me, yet they did, I am thankful, I am blessed. I doubt I would have ever met these wonderful people had I not gone through this. I see how God intertwined our lives, made our paths cross, all for a reason.
This website has been an absolute blessing in my life. Not only have I been able to write of our journey during treatment, but in this grief journey since Alexandria passed away. I think it may have helped people to understand on a whole new level, childhood cancer. People tell me they are blessed to have known Alexandria through this website or in person, how much she meant to them, how her testimony, faith, hope, and spirit has changed them. Her life left footprints on their hearts. I am humbled, yet I am proud. However, I am also receiving the wonderful blessing of feedback from so many of you via the guestbook. The encouraging, love-filled, compassionate outpouring of support we have received is overwhelming. A blessing indeed.
I appreciate the fact that I am in a place where there are SO many resources available. Whether it be internet, books, conferences, there are a wealth of resources at my disposal. Many people do not have these tools to help them learn from others. A blessing? Absolutely.
My faith and Grant's faith has grown exponentially. Our marriage has not been torn apart like so many are having gone through such a life-changing ordeal and loss. Our marriage has flourished, evolved to a whole new level. We vowed not to be the statistics they warned us about in the beginning. He is the one person I can trust to completely understand my feelings, up, down or somewhere in between. We have been blessed to grieve similarly. I know that he loved Alexandria as much as I did. I can always trust that he has been thinking about her as much as I have on any given day. We can always share a memory whether happy or sad. He, above all others, knew her like I knew her....every little detail. He loved that child like no other father has loved a daughter. Their bond was amazing. To watch Alexandria with her daddy and know that they had such a connection, such a love for one another, again, a blessing.
So, you ask me how I can have hope, and I will reply, "don't look at what I have lost", look at what I have gained." "Look at the good that came from tragedy, a terrible loss, yet at the same time blessings evolve from it. And then I will tell you again, God is good all the time. It may not be our timeline, or our wishes, but He has a plan for you. Whether it is 3,405 days you are on this earth, as the case with Alexandria, or one tiny hour, your life means something to Him, who created you for a specific purpose. He see's you, He knows your pain, yet He will never leave you nor forsake you. I know we will all be inundating God with questions when we get to the other side, but that is what faith is all about....trusting what we cannot see.
Well, I have rambled enough for one evening. Thanks for listening, thanks for being my blessing.
In Christ-
Alison
Friday, July 23, 2004 10:23 AM CDT
The Agony of Grief
by Stephanie Ericsson
Grief is a tidal wave that overtakes you,
smashes down upon you with unimaginable force,
sweeps you up into its darkness,
where you tumble and crash against unidentifiable surfaces,
only to be thrown out on an unknown beach, bruised, reshaped.
Grief means not being able to read more than two sentences at a time.
It is walking into rooms with intention that suddenly vanishes.
Grief is three o'clock in the morning sweats that won't stop.
It is dreadful Sundays, Mondays that are no better.
It makes you look for a face in the crowd,
knowing full well the face we want cannot be found in that crowd.
Grief is utter aloneness that razes the rational mind
and makes room for the phantasmagoric.
It makes you suddenly get up and leave in the middle of a meeting, without saying a word.
Grief makes what others think of you moot.
It shears away the masks of normal life
and forces brutal honesty out of your mouth
before propriety can stop you.
It shoves away friends,
scares away so-called friends,
and rewrites address books for you.
Grief makes you laugh at people who cry over spilled milk,
right to their faces.
It tells the world that you are untouchable
at the very moment when touch
is the only contact that might reach you.
It makes lepers out of upstanding citizens.
Grief discriminates against no one.
It kills. Maims. And cripples.
It is the ashes from which the phoenix rises,
and the mettle of rebirth.
It returns life to the living dead.
It teaches that there is nothing absolutely true or untrue.
It assures the living that we know nothing for certain.
It humbles. It shrouds. It blackens. It enlightens.
Grief will make a new person out of you,
if it doesn't kill you in the making.
How true these words ring in my head. Out of the depths of the depression, forging ahead with the valley of death closely behind where I have traveled, I am changed. I am a new Alison. A different friend. A different wife. A different mommy. A different sister. I am not saying it is all pleasant. For those of you close to me, I am sure you know of what I speak. I don't feel that I have the time or energy for shallow people who don't "get it." In some cases, it is not their fault they have not figured it out, so I try with all my might not to judge. For others, who have been down this or a similiar road and still don't get it, I feel extremely sorry for. It saddens me to think of what that life would entail. I don't necessarily expect those of you that have never lost a child to comprehend what it does to your thoughts, your feelings of sympathy, empathy, faith, hope, dreams. At the same time I lost my daughter, I lost a part of me. As most of my friends and family know, my life is engrossed and dedicated to helping others who are traveling on this similiar journey of childhood cancer and illness. Sometimes that journey leads to a full recovery for which we all stand, applaud, thank our Lord and Savior. Sometimes that journey leads to loss and then to an all-consuming grief that envelopes us after our child passes. I know how this journey feels. It is one of isolation. You look all around you and others are able to go on. Their lives are left intact. My family has been broken, a member no longer present. It takes months, some even years to put all the pieces of the new puzzle back together. I don't want anyone to have to walk it alone. I will do whatever humanly possible to help another person on this grief journey.
All of this is on my heart this morning as I reflect on the National Bereaved Parents Meeting in South Carolina a few weeks ago. It was informative and interesting to say the least. The weekend began by my meeting Carol, Meghan's mom, in the lobby of the hotel. We went upstairs to our room and Carol quickly brought out a gift for me. I could hardly speak I was overwhelmed with her thoughtfulness. She gave me stickers of an angel with Alexandria's birth and death dates on it. They were so sweet. Then she had taken picures of Alexandria from the website and on the back written some things that she said. I was so touched. Carol and I had an instant connection. We have been talking via cyberspace for so long, yet I had never spoken with her live. We talked for several hours that night. She is such a wonderful person. I think we learned a great deal that weekend. It was very emotional. The culmulative grief, the sheer pain of all those parents that had lost a child in that room was at times overwhelming at best. It certainly made us feel normal. I will share later, when time permits, of one particular seminar that seemed to really speak to both Carol and I. During the first day, I did keep seeing a woman that I knew I had seen before. I could not remember from where,(remember I am Dory, can't remember much of anything) but felt like I had seen her before. I finally approached her and asked where she was from, to which she replied, St. Louis. "How did you lose your child?" I asked. Leukemia, she replied. The next question I did not even need to ask, but did anyway. "What hospital was your son treated at?" "Children's." That's it, I remembered. Her son died shortly after Matthew Hallemeier of the same fate. Jane Oliver is her name, and it was her teenage son, Sean, that they lost. Carol and I talked to her for hours that night about doctors, medicines, cancer. It hit me later in the weekend. I VIVIDLY remember seeing them down at Children's in July 2002. Alexandria had a strep infection post very harsh chemo while they were trying to get her back into remission. Sean was also having problems and therefore they were in-patient as well. I remember knowing in my heart that they had received bad news. I remember seeing Jane in the hallways and could tell by the way she looked, things were not good for them. I often spoke to other families while in clinic or in-patient. I, unfortunately did not get to speak to her, and therefore we did not meet earlier. I am just so blessed to have met Carol, Jane and other bereaved parents that weekend. It proves to me once again that God works in such mysterious ways. How he has brought such wonderful people into my life, well, it amazes me. It also shows you that "yes", God does allow bad things to happen to good people. But more importantly, He wants everyone to learn and grow from our experiences. Thanks be to God, for out of valley of death, despair and loss, we emerge changed, recharged, full of faith, and able to help others as we have been helped. God is good......ALL the time.
I have received many e-mails and phone calls regarding Kailie. A sincere thank you to all that are concerned and are following her progress. I have had the honor and privilege of spending several hours with Kailie last weekend and this week. What I have witnessed it utterly amazing. She is responding. She was able to squeeze my hand, wiggle her toes, mover her eyebrows, and then when mom was speaking of her doggy Liza Jane, we even saw a slight smile. We all rejoiced. She is able to lift her arms up a bit. Her lab work is improving each day, she still has the catheters draining fluid off her brain, but it has slowed down a great deal. They turned down her vent several times yesterday to see hwo she would do. She actually at times is breathing above the vent. The doctors were so amazed at her abilities and progress. They are concerned about the white matter showing up on the ct scan and will do an MRI today to get a better look at what is possibly the culprit. Please say an extra prayer that for this test she is completly "out of it." It would be painful for her to have to experience it without anesthesia given her circumstances.
I consider spending time with Kailie a special priviledge. It warms my heart to be in her presence, to see her making progress, to see her responding after so long. I can only imagine how John and Johnelle feel. Elated would be an understatement. To witness mom and dad interacting with her, after being deprived of that for so long is so completely awesome, there are no words to explain it. She is one tough cookie. She has been through so much, yet, all she knows how to do is keep fighting.....and she does. Thanks to Dawn and Darryl for watching our children so we could be with them at the hospital. Kailie has a LONG way to go, but she has also COME A LONG WAY. This is due to the prayers that are being said on her behalf, the faith that her family holds on to in even the most trying times, and Kailie's strength, faith and hope. Let us all continue to storm the heavens on Kailie's behalf.
God Bless-
Alison
Tuesday, July 13, 2004 3:33 PM CDT
I'm back, home safe and sound. Lets just say it must not be "my time", and God thinks/knows I have a great deal more work to do down here on earth. I have much to write and fill you in on but I am knee deep in laundry (despite my wonderful husband's attempts at it and housework this weekend) and up to my eyeballs in work that I must complete. So please look for an update to follow shortly, however, please do remember, your shortly, and my shortly my be drastically different...............
Oh, by the way, did ya hear? Did ya know? GOD IS GOOD...............ALL THE TIME !!!!!!!!!!!
KAILIE HAS A WHITE COUNT AND WILL HOPEFULLY BE OFF THE VENT BY THE END OF THE WEEK!!!!!!!!!!!!! Our prayers have been answered, so do not stop now. Please check her site for updates, and let me also quickly say, "THANK YOU" from the bottom of my heart to those who have sent gift certificates, phone cards, gas cards, money, to Alexandria's Angels Foundation to go to Kailie and her family. I cannot tell you how much Grant and I are moved, to tears sometimes, at the love and support people are showing this family. You will be richly rewarded, in this life, or the next, for showing such wonderful acts of kindness to the Rhines'.
God Bless-
Alison
Wednesday, July 7, 2004 8:02 PM CDT
Ima leavin' on a jet plane.....don't know when I'll be back again.......
Sorry, I have been singing that song all day. Thanks for all the phone calls and well -wishing for strength, comfort, peace and travel mercies, as I travel to South Carolina (at the bright and early, okay, not so bright, just really, really early, 6 a.m. flight out of St. Louis). Although I am excited to get some MUCH NEEDED alone time, away from everything, it will also be an emotional roller-coaster at the Annual Bereaved Parents National Meeting. I am prepared. I am armed. I have kleenex boxes a plenty. Please say a prayer that Carol (Meghan's mom) and I survive this weekend and it is a source of peace, understanding, and hope.
I sit here at my computer tonight reflecting, deeply reflecting on all that the last 3+ years have brought and taken away from my life. I HATE to fly on airplanes. I have come to terms with it though. I am ready to go to heaven if that is God's choice. If the plane goes down, then I am going to meet Jesus, Alexandria and my dad again, so all is well. The only thing that remotely bothers me is thinking about the kids being without a mommy. That is difficult. After all, they have already lost a sister.
Back to packing......as always, please keep Kailie in your thoughts and prayers........
Until we meet again-
Alison
Thursday, July 1, 2004 5:53 PM CDT
PLEASE WRITE IN KAILIE'S GUESTBOOK AND WISH HER A VERY HAPPY 13th BIRTHDAY !!!!!!!!!!!!!!!!!!
I know she cannot read the messages now, but when she wakes up what an awesome thing to know that so many people were wishing her well on this special day.
I went to see her today at the hospital. If you ever need a reality check, or to get your priorities straight, please go see some cancer kids at the hospital. It will change your life forever......for the better. You will be more appreciative of every single thing around you.....your children, your spouse, your health, the blue sky, the birds singing in the back yard, the blue sea, green grass, the wide array of colors in flowers, a roof over your head, friends and family that love you, your ability to see. SO many things become crystal clear, so many things are put into proper perspective. Your faith will grow, and you, as a person, will grow by leaps and bounds. Volunteer for one day for the Leukemia and Lymphoma Society, American Cancer Society, ( or even Alexandria's Angels Foundation), or any of the various non-profit organization trying to desperately raise money so that these children will suffer no more. I am not trying to preach here, only suggest, that this is a life-altering experience.
I have been touched. I have been moved beyond words for the constant caring and compassion that those close to me have demonstrated towards Kailie and the Rhines family. My neighbors ask frequently how they are doing. It is not lip service, they are genuine people who care. It means a great deal to us, to them. You will never know what a simple card, handmade is best, will do for a family that is spending weeks at a time at the hospital. You could, thankfully, never understand what a gift certificate to a restaurant, or miniature golf, or a Bath and Body, or Walmart or Target, means to a family whose lives have halted to due the illness of a child. Just imagine... you are confined to a 10x10 hospital room, with no room to even move around due to a ventilator and several i.v. poles, are sleeping in a chair or on a couch with a room full of other parents with no privacy whatsoever. It is a harsh reality. I could go on and on. But I will leave you with this.........
YOU CAN MAKE A DIFFERENCE......
You can help these families......
if you cannot give the gift of life, blood, platelets stem cells or bone marrow, that is okay.
You can run a marathon, a triatholon, raise funds, raise awareness, send cards or messages to kids with cancer. There are SO many things that you can do. Even the smallest gesture is SO SO appreciated..........
Speaking of special people, here is what our kind and good-hearted neighbor Kevin Bly is doing for the Leukemia and Lymphoma Society in memory of Alexandria Nicole Haddock. His letter explains most of the story, but what it does not share is the untold story of how a wonderful family, Kevin and Kristen Bly have dedicated themselves to helping the Alexandria's Angels Foundation. Their support is SO appreciated, I cannot put into words. We have become very close to this family over the last 2 years and are thankful that God brought them into our lives. A special thank you to them, for all they have done for us and others. If the world was filled with people like the Andrasko's, Dain's, Cole's, and Bly's..........the world would be a much better place.
Here is the letter they recently sent out, thank you in advance for your support.
www.caringbridge.com/page/alexandriasangels
Dear Friends and Family,
Every five minutes someone in the United States learns that he or she has leukemia, lymphoma, Hodgkin lymphoma or myeloma – more than 300 people a day. Every nine minutes a child or adult is expected to die from blood-related cancers. This statistic represents 7 people every hour.
As many of you know, last year I participated in and finished the Chicago Marathon. It was such a great experience that I have decided to do it again on October 10, 2004. This time I will be training as a member of the Team in Training, sponsored by The Leukemia & Lymphoma Society. Team in Training provides coaching and training assistance to runners all over the country who have pledged to raise money for the Society’s research and patient services program. My goal is to raise $3,500 to help make a difference in the lives of the individuals with leukemia, lymphoma, Hodgkin lymphoma and myeloma.
I will be running in memory of Alexandria Nicole Haddock. Alexandria was a beautiful young girl who lost her battle with Acute Lymphoblastic Leukemia February 16, 2003 at the tender age of 9. Hers was a rare form of leukemia seen in around 100 children per year. Although I did not have the honor of meeting Alexandria, I have come to know her family very well and have unfortunately become acutely aware of the devastation this disease can cause. For Alexandria’s memory and the many other children and adults fighting this disease, we need your help.
Whatever you can give will make a difference. Your contribution is 100 ax deductible. Feel free to encourage your family, friends and co-workers to join you in support of the Leukemia and Lymphoma Society. If your company has a matching gift program you can include their matching gift form with your donation. Checks should be made payable to The Leukemia and Lymphoma Society. We ask that donations be returned in the enclosed envelope by July 12.
Thank you in advance for your generosity and encouragement as we help make a difference in the battle against cancer in our community.
Kevin Bly
248 Chestnut Hill Drive
O'Fallon, MO 63366
Thursday, June 24, 2004 3:28 PM CDT
Be careful for nothing; but in every thing by prayer and supplication with thanksgiving let your requests be made known unto God. And the peace of God, which passeth all understanding, shall keep your hearts and minds through Christ Jesus.
Philippians 4:6-7
On June 11, 2004 Kailie was diagnosed with HLH (Hemophagocytic Lymphohistiocytosis); a very rare blood disease.
On June 14, 2004 we found out that Kailie relapsed; ALL has returned. After count recovery, she will be having a transplant at Cardinal Glennon Children's Hospital in St. Louis, MO.
Journal
Monday, June 21, 2004 5:49 PM CDT
You must go!! You could help save Kailie's life!
National Bone Marrow Donor Registry Drive
Saturday, June 26
9:00am - 6:00pm
America's Center, St. Louis MO
Cost: $0.00 !!FREE!!
Dear friends-
Please consider going to this blood drive to potentially save the life of another person. Please also consider going to St. John's hospital to donate platelets to Kailie. She needs them daily to live. There is a shortage in the area. To schedule an appt. to donate platelets please call 314-569-6000, and ask for the blood bank.
Thank you all for your support and continued prayers, it means a great deal to all of us who Kare for Kailie.
God Bless
-Alison
Sunday, June 20, 2004 9:40 PM CDT
Just a quick update to thank everyone who wished Grant a Happy Father's Day. He enjoyed getting the messages. Granty, you are the bestest daddy in the whole world and thank you for everything you do for this family. I know today must have been difficult, I know Mother's Day was for me. But in spite of any pain you were experiencing, we managed to have a good day. To all the daddy's who have one less child to hold this year, one less hand-made card, or one less child to tuck in at night, we prayed for you today.
We also prayed for Kailie this evening as we learned that she developed another infection, spiked another fever, stopped breathing for a short while this morning and was then put on the ventilator. PLEASE PRAY FOR KAILIE AND HER FAMILY, THEY DESPERATELY NEED YOUR PRAYERS RIGHT NOW !!!!!!!!!!!!!!!!!!
God Bless -
Alison
Saturday, June 19, 2004 6:03 AM CDT
(written Friday night, June 18th)
Just checked the website and just hit 250,056 !!!!!!!!!!!!!
HOW EXCITING !!!!!!!!!!!!!!!
On the one hand, I wish I never knew about caringbridge, never needed its services. However, since I have been chosen to walk this road, I am thankful to those of you who have visited this site once, or a thousand times. WE LOVE STALKERS !!!!!!!!!!!!!
This website has been such a blessing to me for so many reasons. It now serves the purpose of keeping my daughter's memory alive, and also helps me to help others by passing on prayer requests. Many of you have been here from the start of this website in January 2001, some are newcomers, but you all are important to us. You are concerned individuals who have made a big difference in our lives. You came here, you cared what we were going through. You took time out of your busy lives to not only visit us via cyberspace, but many felt compelled to leave us a note of encouragment. 250,000 hits.....that is a lot of people. Many lives changed for the better because of Alexandria Nicole Haddock. She loved the Lord, she loved people. She would do anything to help anybody on earth. Yet, she is still helping people, changing their lives long after she has left this earth. What a legacy.
For those of you who have gone to Kailie's site and left messages or prayed for their family, a huge, "Thank You !!!" This means so much to them. To all you prayer warriors out there, please continue to join me in storming heaven on Kailie's behalf. She is dealing with a great deal of pain from one of her chemo's, and still has no immune system to fight infection. Her parents and two brothers will be tested Tuesday to see if they are a match for her BMT. Her church will also be having a bone marrow drive in her honor. I will post more details as they become available.
I spent the day with Kailie on Thursday. She is such a beautiful young lady both on the inside and out. She has such faith. She is a fighter.
These kids are stronger in spirit than all of us put together. While I was waiting in the hall to go into Kailie's room, the song on the radio playing at the nurse's station was "Calling All Angels." Fight the tears Alison, fight the tears. As Alexandria would say, "be strong", and I was. I would never put my sorrows before Kailie's or her family's need for support and comfort at this difficult time. While the song continued in the background, I thought to myself, "I am calling all angels." I am asking God and all Angels, including Kailie's friend, Alexandria, to watch over her, guard her and guide her. I am praying for total healing on this earth.
Johnelle (Kailie's mom) wanted to run out and get some new jammies for Kailie while I was there. She asked Kailie if Ms. Alison could stay with her for awhile. Without hesitation, Kailie said "sure" and my heart was filled. What a priviledge for me !!! She felt comfortable enough with me to have her mommy gone for a short while. I was so thankful that Johnelle got away from the hospital if only for a brief time. It is SO difficult to leave your sick child, but they are much needed breaks to recharge your battery, or just feel the warmth of the sun on your face. It helps you to be a better caregiver. Kailie and I watched Father of the Bride II. Well, actually, my movie partner quickly fell into the arms of Morpheus. I was thankful that she got some much needed rest. I watched this amazing, almost 13 year old girl, slumber soundly and peacefully. Life does not get any better than to watch a child sleep. I felt a peace come over me that day. As I listened to her angelic voice, marveled at her faith, and reflected on her burning passion for bringing others to the Lord, I felt peace. Although it is sometimes hard to envision and appreciate the Big Picture, God's Great Plan for Kailie, I know He will see her through this. He will never leave her nor forsake her whether His plan is to heal her on this earth or in her heavenly home. With all that being said, even knowing His great truth does not always shield us from the pain, nor tears, of these earthly trials and tribulations. We must realize that God is not finished working through the Rhines family. We all still have very important lessons to learn from them. Kailie, like Alexandria, is wise WAY beyond her years. Let us remember, through these times of struggle and heartache the wisdom of our children to live every day as though it was your last.........don't take even one for granted.
Thanks again to those individuals who have volunteered to help with the "4th Annual Alexandria's Angels Golf Tournament." It takes a great number of people and work to pull off an event of this magnitude. Each volunteer is vital to its success. Please know that this will be helping kids with cancer in ways you cannot begin to imagine.
God Bless-
Alison
Wednesday, June 16, 2004 9:30 PM CDT
I have a great deal to catch you all up on, but tonight, I just don't have the energy, so I will be brief. After driving home from Dallas, via Florida, last week, by myself, with 5 kids under the age of 9..........well, let's just say it has been a LONG LONG week. I'm drained and wiped out from running around, but even more so, I am emotionally spent. While traveling home last week, I learned from the Rhines family (our dear friends) that Kailie was in the hospital. Kailie needs prayers desperately. Not only has she relapsed with ALL, but they have discovered another blood disease called HLH as well. One or the other would be bad, but both, is really a double whammy. She will need a bone marrow transplant. Her two brothers will be tested soon. For many reasons, they have decided to have the transplant at Glennon vs. Children's. Kailie is also fighting a gram-negative infection with no immune system right now. She is in a great deal of pain. I went to see her the other day at St. John's. She reminds me SO much of Alexandria, which is both wonderful and difficult all at the same time. I will try and go see her tomorrow too. PLEASE PLEASE PLEASE pray for Kailie. Her link is at the bottom of this page. The family is devastated, yet they remain full of hope and faith. Please stop by their site (Kailie knows she has relapsed) and leave a note of encourangment. You have no idea how much this would mean to them. I will update soon.......
God Bless-
Alison
Wednesday, June 9, 2004 9:34 PM CDT
Hello to All-
The kids got out of school last week and we quickly bee-lined for my sister's house and the beach. We all needed the break and daddy even got to come with us this time. The kids were so excited to have special "daddy-time." They LOVE their daddy, worship the ground he walks on, and could not wait to spend quality time at the beach just hanging out. I will have a great deal to update when I get home, but must get some sleep for the big drive tomorrow. I will be driving to Dallas, Texas from Florida, to pick up my nephews Austin and Ethan, then head back to Missouri. Yes, I know, a VERY long drive, but, worth it nonetheless.
FYI FYI FYI FYI FYI FYI FYI FYI FYI FYI FYI FYI FYI FYI FYI FYI FYI FYI FYI FYI FYI FYI FYI FYI FYI FYI
SAVE THE DATE SAVE THE DATE SAVE THE DATE SAVE THE DATE SAVE THE DATE SAVE THE DATE.............you get the point......................................
THE 4 TH ANNUAL "ALEXANDRIA'S ANGELS MEMORIAL GOLF TOURNAMENT" WILL TAKE PLACE ON MONDAY, OCTOBER 4TH, 2004 AT THE MUCH SOUGHT AFTER OLD HICKORY COUNTRY CLUB AT MID RIVER'S DRIVE AND HWY 94. WE ARE SO EXCITED TO ONCE AGAIN BE ABLE TO PROVIDE A WONDERFUL GOLFING EXPERIENCE AND HELP MANY FAMILIES WHOSE CHILD HAS CANCER AS WELL !!!!!!!!!!!!!!!!!!! A BIG HUGE THANK YOU TO BILLY COLE FOR ARRANGING THIS EVENT AGAIN !!!!!!!!!!!!!!!!!!!!!!!!!!!!!
AS YOU ALL KNOW WE WILL ONCE AGAIN NEED MANY VOLUNTEERS TO MAKE THIS EVENT A SUCCESS AGAIN THIS YEAR. IF YOU ARE INTERSTED IN DONATING AN ITEM FOR AUCTION, VOLUNTEERING YOU TIME, OR PUTTING TOGETHER A TEAM FOR THE EVENT......
PLEASE CALL GRANT AND MY HOME PHONE
636-561-8680,
OR OUR CELL PHONES
ALISON 314-503-5882
GRANT 314-503-5879
Or send written inquiries to our home:
Alexandria's Angels Foundation
241 Chestnut Hill Drive
O' Fallon, MO 63366
WE WELCOME ALL INQUIRIES AND HELP, TO FURTHER THE CAUSE OF CHILDHOOD CANCER AND HELP KEEP OUR PRECIOUS DAUGHTER, ALEXANDRIA'S, NAMESAKE ALIVE AND THRIVING.
THANKS BE TO GOD FOR EACH AND EVERY ONE OF YOU WHO HAS FOLLOWED OUR FAMILY THROUGH THE YEARS, AND SUPPORTED US THROUGH GOOD TIMES AND BAD. WE ARE HONORED TO CALL YOU FRIENDS.
GOD BLESS-
GRANT AND ALISON HADDOCK
Wednesday, May 26, 2004 9:02 PM CDT
Monday, May 24, 2004 7:55 PM CDT
New journal entry Monday.
Dear Friends-
This journal entry was, for once, not written by myself. It was written by a dear friend of mine. One that over the course of a year I have gotten to know, and now, treasure our friendship. I have never seen her face in person or picture, nor heard her audible voice, yet, we share so much. We lost our daughters 7 days apart. Carol, my new found friend and fellow griever had to also bury another daughter in December. Two daughters in 2003. Gone, but never forgotten. This is her recent update. It moved me to tears. I thank God that even though we share a deep-seeded pain like no other, that we also share a friendship that few others could ever understand. God Bless Carol Mack.....Everybody loves Meghan, everybody loves Carol, her mommy forever.
Why Us?
Most women become a mother by accident, some by choice, a few by habit. Did you ever wonder how mothers of children with cancer are chosen? Somehow, I visualize God hovering over the earth selecting his instruments for propagation with great care and deliberation. As He observes, He instructs his angels to make notes in a giant ledger...
"Armstrong, Beth, son, patron saint Mathew" "Forest, Marjorie, daughter, patron saint Cecilia" Rutledge, Carrie, twins, patron saint Gerald. “He's used to profanity" Finally, he passes a name to an angel and says, "Give her a child with cancer." The angel is curious. "Why this one God? She's so happy." "Exactly, smiled God. "Could I give a child with cancer a mother who does not know laughter? That would be cruel." "But does she have patience?" asks the angel. "I don't want her to have too much patience or she will
drown in a sea of self pity and despair. Once the shock and the resentment wears off, she will handle it". "I watched her today," said God. "She has that feeling of self-independence that is so rare and necessary in a mother, You see, the child I'm going give to her has its own world. She has to make it live in her world and that's not going to be easy." "But Lord, I don't think she even believes in you," said the angel. "No matter. I can fix that. This one is perfect, she has just enough selfishness. The angel gasps, "Selfishness? Is that a virtue?" God nods. "If she can't separate herself from the child
occasionally, she'll, never survive.” Yes, here is a woman I will bless with a child less than perfect. She doesn't realize it yet, but she is to be envied. She will never take anything her child does for granted. She will never consider a step ordinary." "I will permit her to see clearly the things I see...ignorance, cruelty, prejudice...and allow her to rise above them." "And what about her patron saint?" asks the angel, his pen poised in mid air. God smiles and says "A mirror will suffice."
"Author Unknown"
Greetings Stalkers. As I’ve said before, I usually need something to compel me to write in this journal. Tonight I was compelled by a random thought I was having (which, if you know me…..I have lot’s of “random” thoughts (lol). Anyway, as I was doing my usual “checking in” of my caringbridge kids, something someone told me a while ago popped into my head and made me think a little deeper about what she said.
We had been talking about Meghan’s Fund and what exactly the money should go for and I was saying that I thought we should have “buddy families”. This would pair the family of an Angel with a family whose child is currently undergoing treatment. This would be helpful because as many of you know, hospital and clinic visits and just daily routines are very hectic and with the buddy family, we would visit new families recently diagnosed, bring them materials about resources they could contact to assist them, and basically be a support system as a kind of “been there, done that…got the t-shirt” go-between. I was told that although this was a “good idea”……she didn’t think it would work because we are their “reality” and they may not feel comfortable being around us. Now, you might say “oh, how awful…why would anyone not want to be around you?” The answer is simple. When your child is battling cancer, you rely on every last bit of hope, prayer, and yes, even a little bit of hiding your head in the sand to help you keep your sanity and the thought of your child not making it as far away from your thoughts as possible. When a child is newly diagnosed, a family does not want to meet someone, get close and as they tell you their deepest darkest fears, they ask you “how did you become involved?”…..”oh, your child “had” cancer?……how is he/she now????? She’s an Angel you respond…..she was one of the ones the “statistics” didn’t take into account. She is one of the ones that a bone marrow transplant didn’t cure. She is one of the ones who just like your child, started out so well, beating the odds, playing all day, eating well, never nauseated……she was one of the ones who didn’t make it. So, as you can see, that would not be something a family would want to know starting out in the crazy, mixed-up world of childhood cancer. So, the “buddy family” idea is evidently not such a great one. Even though we have experience under our belts and a long road under our feet….no one wants to wear our shoes. To get back to my original point, and yes folks there is one somewhere in this rambling mess, as I look around the caringbridge sites and I see all the guestbook entries of complete strangers who have peeked into our worlds and extended their prayers and well wishes to those newly battling this disease, and to those who continue their battle, I think you too, I’m afraid, are no longer “their reality”. They have entered a new world. There is the “perfect world” where your children are all healthy and happy. There is the “not so perfect world” where your child has childhood cancer and is undergoing treatment or in remission. And then there is as I like to call it, the “completely over the top, crappiest of crappy worlds” where your child becomes the Angel. This is the world where you visit other caringbridge sites and unless you are visiting the site of an Angel, you are an outsider. Not necessarily an unwelcome outsider, but a “reality bites” outsider. We are the mothers who always put angel wings around our child’s name, or always put “mom to Angel so-and-so”. And again I realize that this is our very strong urge to keep our child’s name alive. We do have our own little network too. In fact, it is growing by leaps and bounds. I think just this year we are at or over 25 new Angels into our network. Normally, growth is good right? Not so in our “reality”. Growth means another parent learning to breathe each morning. Growth means another parent with a hole in their heart the size of the ocean and beyond. Growth is another parent waiting for a sign from their child to know he or she is ok. Growth means another parent fighting back stinging tears when he or she hears that song that their child just loved. Growth means another parent picking out a headstone. A perfect granite or marble piece of slab in which to etch forever the name of your most treasured gift on earth. Growth means childhood cancer won again. I, along with many, many moms and dads out there will be out for revenge again this year as we beg, plead and guilt our friends, families and complete strangers to donate one, two, five, ten, twenty, one hundred dollars to the Leukemia & Lymphoma Society whose goal it is to bury cancer forever. No pretty headstone for that victim. No eulogy, no mass….. just the calm sense of knowing we, in the name of our child, took out our anger and frustration on the monster we call cancer, and we won.
-written by Carol Mack
Mom to 2 Angels
Meghan and Taylor
Carol........I could not have said it better !!!! Cannot wait to actually meet you in person in South Carolina this summer for the Bereaved Parents National Conference.
Hugs to you-
Alison
Tuesday, May 25, 2004 6:32 PM CDT
The Tapestry of Life
As I faced my Maker at the last judgment, I knelt
before the Lord along
with all the other souls. Before each of us lay
our lives like the squares
of a quilt in many piles. An angel sat before
each of us sewing our quilt
squares together into a tapestry that is our
life.
But as my angel took each piece of cloth off the
pile, I noticed how ragged
and empty each of my squares were. They were
filled with giant holes.
Each square was labeled with a part of my life that had been difficult,
the challenges and temptations I was faced with in everyday life. I saw
hardships that I endured, which were the largest
holes of all.
I glanced around me. Nobody else had such
squares. Other than a tiny hole
here and there, the other tapestries were filled
with rich color and the
bright hues of worldly fortune. I gazed upon my
own life and was
disheartened. My Angel was sewing the ragged
pieces of cloth together,
threadbare and empty, like binding air.
Finally the time came when each life was to be
displayed, held up to the
light, the scrutiny of truth. The others rose,
each in turn, holding up their tapestries. So filled their lives had been.
My angel looked upon me,
and nodded for me to rise. My gaze dropped to the
ground in shame.
I hadn't
had all the earthly fortunes. I had had love in
my life, and laughter.
But there had also been trials of illness, and
death, and false accusations
that took from me my world as I knew it. I had to
start over many times.
I often struggled with the temptation to quit, only
to somehow muster the
strength to pick up and begin again. I spent many
nights on my knees in
prayer, asking for help and guidance. In my life
I had often been held up to
ridicule, which I endured painfully, each time
offering it up to the Father
in hopes that I would not melt within my skin
beneath the judgmental gaze
of those who unfairly judged me.
And now, I had to face the truth. My life was
what it was, and I had to
accept it for what it was. I rose and slowly
lifted the combined squares
of my life to the light. An awe-filled gasp filled
the air. I gazed around
at the others who stared at me with wide eyes.
Then I looked upon the tapestry before me.
Light flooded through the many holes, creating an
image. The face of Christ.
Then our Lord stood before me, with warmth and
love in His eyes. He said,
"Every time you gave over your life to Me, it
became My life, My hardships,
My struggles. Each point of light in your life is
when you stepped aside and let Me shine through, until
there was more of Me than there was
of you."
Please pray that God will give LaKota the Miracle of a long healthy old life on Earth through the blood cord transplant taking place today, Tuesday, May 25th.
www.caringbridge.org/mn/laplafcan. This family has already endured the loss of her brother who had cancer.
Please pray for friends of friends, who's baby Louie is enduring chemotherapy for a recently diagnosed brain tumor.
www.caringbridge.org/ky/louie
Please pray for our old neighbors whose 20 year old daughter Kimberly, and one of our former babysitters, who was just diagnosed with leukemia after graduating college a few weeks ago with a 4.0 gpa.
Please pray for all of the moms and dads who are holding their child with cancer and tucking them in to hospital beds instead of their own. Please pray for doctors and researchers come up with better chemotherapy treatments that cure our children so we can stop burying so many.
God Bless-
Alison
Thursday, May 13, 2004 10:38 PM CDT
"Grief is not a sign of weakness, nor a lack of faith....it is the price of love."
Anonymous
Truer words were never spoken.......
Alison Haddock
Happy moments, praise God.
Difficult moments, seek God.
Quiet moments, worship God.
Painful moments, trust God.
Every moment, thank God.
Hello to All-
This day started out as any other. I stumble to my computer to check e-mail, the website and on all "my other caringbridge kids." Each morning, upon arising, I am greeted by a picture of Alexandria, and each morning I say, "good morning Alexandria." Funny thing is, Grant informed me the other day that every single night since Alexandria's passing, he has told her good night. So he tells her goodnight, and I tell her good morning, yet we did not know eachother did this for over a year. We are VERY close, and we share SO much, yet this particular thing we kept to ourselves until recently. Not sure why, probably thought we would think eachother was crazy. I am certainly not expecting any of you to understand. I suppose we probably try to protect eachother from any more pain at times.
There are days when I feel Alexandria's presence more than others. There are days when I see I sign that must be sent from heaven to earth, directly to me. How else could you ever explain a white dove flying across the highway right in front of my car when driving home from Mississippi in January? I was listening to songs that distinctly reminded me of my Sissy girl, and from out of nowhere, a perfect white dove crosses my path. I must admit, I don't see them just flying around all the time........a sign, no doubt. After many repeated journey's on this exact route, it also never ceases to amaze me, what a beautiful scenery it is. I have decided that one of these times I will actually count how many hawks I see on the fence by the road. They are so amazing. I think they are fond of these vantage points because there are many fields that mice run in next to the highway. It is perfect to stalk their prey. Somehow, between the hawks, the sunset, the butterflies, and the dove, I see signs of Alexandria. I can only imagine a fraction of what her eternity in heaven and all its beauty must entail. I can only imagine...........Speaking of signs, I also somehow do seem to attract butterflies. Just about every time I went outside last Spring and this one as well, there seemed to be a yellow butterfly fluttering about near me, again, a sign from Alexandria I believe.
Today, it was raining cats and dogs on the drive to our photo shoot for the magazine, for the showhouse. The rain miraclously stopped right before we walked in. Alexandria knew I was a little nervous about this big "photo shoot" thing. It is not necessarily my cup of "hoity toity tea" (but let me also state for the record that I could get used to it if pressed). Because of the rain, and my naturally curly hair, I was already having no good, very bad, frizzy hair day and not real thrilled about being photographed. We walked in, were greeted and asked if we would like anything to drink (I think she meant a soda or water, but I almost asked for a double scotch and water, hold the water). I don't think I have been to a "photo shoot" since my senior pictures, hence my uneasiness. We sat down on two stools ready for the big flashing lights and BOOM...............The lights flickered several times. Now wait a minute. I just said a little prayer and told Alexandria to help me out here. What did she do, she sent a little sign to let me know things were in God's hands, as they always are. My first thought was that this deal was over, we would not have power to take the pics and have to reschedule. But all was well, all was well. Alexandria reminds me of the important lessons of life yet again.....don't sweat the small stuff, and it is (almost) all small stuff.
I was originally going to wear all black (c'mon ladies, you know what I'm talking about, we wear all black to make us look slimmer.) I am thinkin' if the camera adds 10 pounds, then we have some serious takin' away to do here, and anything will help. I elected instead to happily, "WEAR PINK PROUDLY" to celebrate the life of and honor a special little girl. Oh yeah, Denise was with me, she wore purple. It is Alexandria's other favorite color. She had a stuffed animal rabbit that was pink and purple, and therefore affectionately called "Pink and Purple." Denise, of course did not know this, so it was perfect..... another sign. We were Pink and Purple.
I also just received an invitation in the mail for my niece Sidonia's 9th birthday. On the opposite side of the particular information about the party, she states, "In Loving Memory of my cousin, Alexandria, all gifts will be donated to local hospital's children cancer patients." Well, that was just about the sweetest darn thing I have ever read. I cannot believe a nine year old would give up all her birthday presents. Kids are extremely egocentric, and there is nothing wrong with that, it is very normal. However, when one decides on her own to do such a wonderful deed at her own expense, it is just amazing. It is a true testament to her faith and to how her mommy, my sister, Stephanie, is raising her. Sidonia loved Alexandria. Alexandria loved Sidonia. They were always sisters, never wanted to be called cousins. They shared a love of life, cats, dolls, barbies, art, and so much more. They are both sensitive, and I deem this as a good thing. Sidonia, now you are now "bestest of friends" with Hunter. You talk on the phone regularly and each time you hang up, you say "I love you." For you both know all too well how precious and sometimes short life can be, and take nothing for granted. Sidonia Elizabeth, your Auntie Alison is SO proud of you. I am so thankful that you never cared if Alexandria had hair or not, was grumpy from steroids, tired, peppy or indifferent. You loved Alexandria unconditionally and she will always know that. She will always watch over you and forever be your guardian angel. I love you so much, as much as my very own, and God loves you too.
Oh, by the way, as I was just tucking in my very own precious boys for bed, I asked "if they would ever do something as generous as their cousin?" Hayden quickly replied, YES, mommy, we should DEFINETELY DO THAT......for HUNTER'S birthday ?!?!?!?!? Ah yah yah !!!!!!!!!!!
Love and hugs-
Alison
Sunday, May 9, 2004 11:00 PM CDT
Happy Mother's Day to All of the Mom's out there. Big hugs to all of my caringbridge friends/moms who are enduring their first, or yet another, Mother's Day with out one of their children. Today was also Grant and my 12 year anniversary. We have been together for ALOT longer. We enjoyed a nice dinner out last night (thanks to Jeanine and Jim for watching the kids!!!) Grant absolutely LOVES to talk about Alexandria, and so many times I can share in this conversation without tears, but it was most difficult on this particular night. 15 months it has been since Alexandria went home. I have felt so strong, so good, so emotionally healthy for a while now. But as with any holiday, some are just more difficult to get through. I feel that I got most of my tears and my emotions out yesterday, cleaning off the driveway with the hose......a favorite pasttime for those who need "head clearing" and perspective. Just as in our old neighborhood, everyone knows when I am feeling like I need a "time out" from the world. I have done this for as long as I can remember. I vividly recall "hosing down" the back deck, side porch, and a very LONG driveway (we lived on 5 acres....I do mean VERY LONG driveway) when I was growing up. There is just something therapeutic about it. Call me crazy, I know, but it is about the only task I feel like I can complete sometimes, there is NO stopping me. Actually I only do it a couple of times of year, and our driveway is home to a great deal of crud in cracks......okay that did not sound so good. Anyways, I got in my therapy, amidst neighbors accusing me of watering my driveway and cleaning the whole freakin street for the city. They know me....
My day began with a delicious breakfast in bed......cherry poptarts.......my favorite. Actually Grant had offered to cook a big breakfast and serve me in bed. I also awoke to two young boys saying, "can we go to Six Flags, can we go to Six Flags.......PUH LEEZE !!!!!!!!!!!!" Well, how do YOU spell mom?"
Mother, Mommy, Mom, friend, confidant, boo-boo healer, taxi cab driver, girl scout leader, bible school teacher? Today this day, I spell it .........
S- U- C- K- E- R- !!!!!!!!!!!!!!!
Yep, I fell for it. A quick shower and I was lubing on the sunscreen for three kids and packing a back-pack. Grant, the kids, and the neighbors and their kids were off to Six Flags for a day of steaming, thrill seeking, line-braving, second-hand smoke breathing, people watching, dehydrating, "gotta go potty" every time I see the bathroom, Looney-tuning, belly-holding, death-wishing, heart racing, nearly puking, soaking to the bone from Thunder River, good 'ol fun day. This was THE year, THE time. Big, rollercoster riding kids now. As Hunter ran over to get a quick pic with Bugs Bunny, I flashed back to when we were there with just Alexandria and Hunter was a baby. He was sitting in the stroller next Bugs, who he was NOT thrilled about being close to, much less, photographed with. Wow, it seems like yesterday. Now, that Big Boy was riding the Screaming Eagle and for the record, he even braved........THE BOSS. Hey that is the Big league people. I would not even go on that one. Did I mention Addison got her head stuck in the wrought iron fence at Batman, The Ride? Oh yeah, we were waiting for the "big kids" (adults) to get back from the ride (I, of course, chose to stay and watch the kids, I had been jostled enough). Addison was standing on the wrought iron fence looking through it and the next thing ya know her head was stuck THROUGH IT !!!!!!!!!!! I tried tugging (carefully), gently pulling and twisting. As Addison began to panic and cry, Hunter screamed do you want me to get help?" At that exact moment Grant and Jim walked around the corner, saw Addison, and rushed over. Mr. Jim (aka muscle man), Grant, and a man just walking by pryed the bars wider, and out she came.........ugh, WAY TOO MUCH EXCITEMENT FOR ME. She was a little shook up, but no worse for the wear. The main point is that we did have a GREAT day. Hayden and Hunter braved some rollercoasters, some leaving them with a sense of pride, others with a sense of dizziness. Whatever the case, it made this day more fun to be with caring friends and a wonderful family. Yes, my heart ached, each and every time I saw pink cotton candy or a multicolored, huge, sucker. My heart sank when we rode the Mine train, Alexandria's favorite ride. To see the big bucket of water that is at Hurricane Harbor, which Alexandria LOVED as well, equally difficult. There will always be a sense of emptiness, incompleteness, a hole in my heart, which will remain until my dying day. But there was also happiness. There was a sense of thankfulness for the children that remain with me on this earth. A sense of joy at the thought of my gift from God of being a mom.........the greatest gift God could bestow upon me. Thank you Lord for letting me be a mom, and especially a mom to Alexandria. She was my first Mother's Day gift in 1994, ten year's ago today. If I would have known that first Mother's Day I celebrated with her, that I would only have a few more, I would do it all again. I would rather have loved and lost her, than to have never known her, loved her at all.
Now, go hug your kids, make sure you tell them you love them, let them eat desert first, just once, don't sweat it if they want to sleep in your bed, still wear pull-ups at four, take a binky at five.........life is TOO short, they are TOO precious and God gave them too you to love, just do it.
Blessings -
Alison
Saturday, May 1, 2004 8:39 PM CDT
A sincere "thank you" to all of the many people that have written me in the past several days. Wow, ask and you shall receive was never more evident. Thank you all for taking time to write. I kept thinking to myself, there are 1,000 hits to this website each and every week consistently. I am amazed when I see the number of visitors and have often wondered, "who in the world is still coming here?" Who still cares, who is still concerned?" "Is Alexandria hitting the button over and over from heaven?" To view the guestbook and realize that whether it is Alexandria's former teachers, old neighbors, new neighbors, old friends, new friends, caringbridge family, people from this country, people from countries around the world, they are people from all walks of life. Some have been touched by childhood cancer. Others have been devastated by it. But there is a common thread that binds each and every one of us together. Alexandria Nicole Haddock. I thank the Lord each and every day for each one of you who was not only impacted by my daughter, but those of you who continue to care, to show compassion and concern for our family. If I could only adequately put into words what this means to us. Some of the guestbook entries have touched me so profoundly. I am moved beyond words at the fact that people who never even met Alexandria would feel compelled to keep in touch with us.
Things are going absolutely awesome with my business. I recently merged with another interior design firm. They are a great group of women and things have been very busy since we joined forces. We submitted design boards for the St. Louis Symphony Orchestra Showhouse. We just got word that our design for the office/adjoining bathroom, were chosen unanimously. We were selected out of 9 other designers who submitted boards for the rooms. THIS IS GREAT NEWS !!!! If things were not good enough with that bit of news, we have also learned that we have been chosen to do the kitchen in the St. Charles County Dove House. We are SO excited to be part of this. The Showhouse will be open throughout the month of September, and all profits raised by the month-long event will go to the Dove Foundation to benefit the working poor and less fortunate in St. Charles County. What a wonderful cause to be associated with. As you can see, on a professional level, things could not be going better. I could not be more grateful to God for all the positive blessings in my life, blessings that will hopefully, in return, bless another.
Alexandria, I love you sweet baby girl. I know that any blessing in my life could never compare to the blessing and joy of having you as my daughter. There is not one single day, one single hour, that I do not think of you. We have lost so many caringbridge friends in the past weeks...........Savannah, Jake, Garnet......and many more. It breaks my heart to see so many families have to endure what we have. So many children suffering, so many families having to say goodbye to their precious children. I am sure that you and Sarah have put yourselves on the "new angel greeting committee." With your effervescent personalities and world class charm, I am sure you make wonderful greeters. Please watch over these newly bereaved families. Their long journey has now gotten even more difficult and unbearable. Please ask our Lord and Savior to give them peace and some sort of comfort in the following weeks and months.
In Christ-
Alison
Wednesday, April 28, 2004 11:49 PM CDT
Moved, touched, utterly amazed.........these are but a few select emotions that I feel on a continual basis each and every time I come to Alexandria's site. 240,000 hits to this website..............
Each and every week, this site consistently has 1000+ hits. That is 1000 people who are concerned, 1000 people who care, 1000 people who's lives are changed by the life of a nine and a half year old girl named Alexandria. It stirs my heart, it moves my soul.
Of course, there are times when I feel sorrow and self-pity. On these days, I contemplate. I question softly to myself.........I wonder, I am intrigued and perplexed by it all...........this thing called life, and all that it entails. Why did God make life so difficult? Things so hard? In the last week, Grant and I, once again, have had cause for concern, introspection on life. God's great plan. Another family member facing challenges, health issues, and it is all but a mystery. For we cannot see His divine and perfect plan. We can only trust. We can only trust in Him that He knows the plan He has designed and has intricately orcheastrated. We must just trust..........difficult, but necessary, most definitely. This is the prayer I say to myself frequently in the morning.
THIS IS THE BEGINNING OF A NEW DAY.
GOD HAS GIVEN ME THIS DAY TO USE AS I WILL...
I CAN WASTE IT, OR USE IT FOR GOOD.
WHAT I DO TODAY IS IMPORTANT, BECAUSE I AM EXCHANGING A DAY OF MY LIFE FOR IT.
WHEN TOMORROW COMES, THIS DAY WILL BE GONE FOREVER, LEAVING IN IT'S PLACE SOMETHING I HAVE TRADED FOR IT.
I WANT TO BE A GAIN, NOT A LOSS...
GOOD, NOT EVIL...
SUCESS, NOT FAILURE,
IN ORDER THAT I SHALL NOT REGRET THE PRICE I PAID FOR TODAY.
This speaks volumes and no other words are needed. This is how I view my life.
It was recently brought to my attention that many people still care. (thanks Sue, my stock brokers assistant) for making me realize that many people are for some reason, drawn to this website. I am not sure the cause, the reason. But I do know that my gratefulness for their concern is overwhelming. I will never stop praising God for all that He has brought into my life.......people, situations, whatever the case, I am thankful, I am blessed.. Out of tragedy and loss comes compassion, and sympathy for others. Some enduring the same fate, others, understanding without a word spoken. I am blessed beyond words for my life, my path.
Thanks be to God-
Alison
Please sign the guestbook, even if only your name, to let us know you were here, that you still care.
God Bless you each and every one-
Alison
Mom to Angel Alexandria
Thursday, April 15, 2004 11:25 PM CDT
updated/revised 11:00 a.m Friday, April 16th.
Updated again (can you believe it) Friday 6:00 p.m.
You take the lives of innocent, precious children. Some of them fought you hard until they had to surrender to you. We are not happy with your performance. You don't discriminate, even the most faithful are affected by you. You don't strengthen our team. You make people weak, physically, emotionally, spiritually. Your ability to follow directions and appropriate paths are unexceptable. You are asked to leave, but you come back time and time again, without warning and with a vengence. You lie, cheat, steal. We cannot trust you. Your goals consist of damage, destruction and despair which stinks, yet you have seem to have such a promising future. No one on this team likes you and at this point I have to say, "Cancer, YOU'RE FIRED !!!!!!!!!!! ", and by the way, "the tribe has spoken, the vote was unanimous, and you have been voted off the island." Even the Trumpster couldn't keep this beast from rearing its ugly head.
Well, it had to come, despite all efforts to stop it..........there were 35 candles on the birthday cake for me today, (14th), dang near started fire. So, I have decided I am 35 and holding (forever). Actually, today was a wonderful day. Thanks Nancy for taking me out for lunch and shopping, even if it was just Costco. It was one of those days that you feel Spring has Sprung. I love Spring. It is my favorite season, Alexandria's too. I am sure everyday is Spring for her in heaven.
I just want to thank the many people who have called lately to wish me a "Happy Birthday" and to check up on me. Sometimes I feel after I have laid out my heart for all to read, that one day, when I come home, there will be a crowd of well-wishers ready for an "intervention." I sincerely hope that everyone understands that I am continuing on with my life, life without Alexandria, as best I can. I have many a days that I am able to smile, laugh, sing, dance and "savor the flavor" of life. I know sometimes it appears that I must be wallowing away in self-pity and depression over here, but I have good days. I would go so far as to say I have great days. With faith, family and friends, I will come away from this life someday, having learned some of the most fundamental lessons one could ever learn.......and I learned them from a nine and a half year child. Amazing. ......Praise the Lord.
Of course, it is 2:20 a.m., and I suppose with that being said, it is quite obvious that I am no longer taking Ambien (sigh). Oh well, some day I will sleep again. This is the time that I spend wisely, I believe. If I am going to be awake, I mise well be productive. So, I check on my caringbridge friends. The thought occurred to me tonight (this morning, whatever) that I have quite the entarage of children and families that I check on. I decided to count the kids that I "visit" regularly. 146. Yes, you read right, 146 kids that I "know", and have grown to love. Many of the children are still fighting the battle hard. Many have become angels. This list grows, daily. It is sad, but true. Because of the MANY generous people who have supported the Alexandria's Angels Foundation, we will make a large contribution to CaringBridge, in Alexandria's name. What a wonderful, therapeutic, useful and helpful method of informing people and sharing thoughts this website/journal has been for me and for so many others. I know it has been a gift for SO many reasons and I am thankful. The outpouring and overwhelming support I have received via the internet, is astounding. Over 236,000 times we have been "visited" by concerned people via "Alexandria's Angels." There have been over 4,500 guestbook entries (and that was the count several months ago). People from all over the globe have come by to wish us well, lift us up, and let us know they continue to pray. The inspiration behind Caring Bridge (TM) came from the real-life expereince of a close friend. During her twenty-third week of pregnancy she developed HELLP Syndrome, a condition that threatens the life of the mother and her unborn baby. The couple living through this crisis has many friends and family throughout the country and in Europe. Understandably, everyone wanted to know how she and her baby were faring under such difficult circumstances. The Caringbridge team set up a web page to report the condition of both mom and soon to be born baby. The website became an invaluable tool to communicate information to a wide circle of people without disturbing the mother's need for rest or placing demands on a very busy hospital staff. The couple's baby was born at the beginning of the 24th week of pregnancy. While the mother was still in very critical condition, Brighid was in the care of the NICU. Weighing a little more than one pound, Brighid's struggle was hour by hour. News about mom and Brighid was posted daily and sometimes several times a day. An accompanying online guestbook provided visitors the means to send personal messages of both joy and encouragement to the family. Like our own story, Bridhid's story does not have a happy ending. After a nine-day struggle against tremendous odds, she died in surgery. Conveying even the saddest of news was somehow made easier by posting messages to the Web page. People were told of Bridhid's death and the Web site informed everyone simultaneously without the burden of numerous, emotion-wrenching phone calls. Brighid's funeral and cemetary information was also posted. The parents posted a final message in tribute to Brighid and all their dear friends and family. The family was so moved by the Web page response and the ability to communicate so quickly with others that they wanted others to have the same opportunity. A memorial fund for Brighid was designated to go towards supplying the NICU with a computer and internet access to allow families to create their own Web page. This, along with the encouragement from others, convinced them to develop a service that would enable patients and their families to quickly and easily build Web pages. The service Caringbridge was named in part after the little baby who started it all, Brighid.
Amazing......... Praise The Lord for parents who through their pain, were sent comfort and blessings and were then able to bring such a wonderful service, free of charge, to the rest of us fighting daily, uphill battles. Because of our experience I am rebuilding my "bridge" (myself,and life without Alexandria), brick by brick. The words of comfort and concern have been vital to my grieving process. The blueprints for my bridge are very different from what I thought it would be. But I know God is the ultimate planner, builder and architect. His plan and blueprint for Alexandria's life was just shorter than I had planned. God's project, her bridge, was completed in 9 and a half years. She went Home with the strongest bridge ever, one with an undeniably strong foundation......For if we all had that kind of foundation and unrelenting faith, we would all be better people for it. Thanks Be To God.
God Bless You All-
Alison
Sunday, April 11, 2004 6:13 PM CDT
My Mom is a Survivor
by Kaye Des'Ormeaux October 15, 1998
-Dedicated to the mothers who have lost a child and have somehow survived-
My Mom is a Survivor,
or so I've heard it said.
But I can hear her crying at night
when all others are in bed
I watch her lay awake at night
and go to hold her hand.
She doesn't know I'm with her
to help her understand.
But like the sands on the beach
That never wash away...
I watch over my surviving mom,
who thinks of me each day.
She wears a smile for others...
a smile of disguise!
But through Heaven's door I see
tears flowing from her eyes.
My mom tries to cope with death
to keep my memory alive.
But anyone who knows her knows
it is her way to survive.
As I watch over my surviving mom
through Heaven's open door...
I try to tell her that angels
protect me forevermore.
I know that doesn't help her...
or ease the burden she bears.
So if you get a chance, go visit her...
and show her that you care.
For no matter what she says...
no matter what she feels.
My surviving mom has a broken heart
that time won't ever heal.
My dearest Alexandria, my doodlebug forever-
How my heart is torn, distraught, aches one moment, proud and filled the next. I celebrate this sacred day and know that He has risen. I know that you are in a special place called heaven. I know you are with Him, and no greater joy could be had by anyone. There are days that I sail through, telling myself time and again, you are still, you are quiet, you are His. Then there are times, and days, that seem never-ending. I try so hard to focus so intensly on your siblings, on my work. I sometimes hide my pain from the one's closest to my heart. There are days that I remember.....those beautiful, sweet days filled with the memory of YOU. I long so deeply to be with you if for only one more moment in time. This pain runs so deep and is so completely all-consuming, utterly unbearable, that it is my wish that our good Lord not extend my life too far. For that is longer that I must endure this torture to my heart, my soul.
I look at pictures and study each part of you as if I was seeing them for the first time. I loved that little tiny bump on your left ear. You despised it, so I told you it was a "kiss from God" so you would always know He was with you. You had just a sprinkle of freckles upon your beautiful face. A reminder to me, you are MY daughter. You had long eyelashes and the biggest blue eyes. We shared the same color of hair, same skin tone, so much alike in physical form and personality to match. Your lips had a natural, perfectly pink tint to them. Your legs were long and thin, always tall for your age. God love you, you even had your daddy's long toes, which we always made fun of. You were as sentimental as your momma. You cried as easily as me. God knows every single, tiny thing about you was perfection magnified.
I miss those days at the hospital, just you and I. The coloring we would do, the games we would play. Each night before we went to bed I would read you a story, and you insisted I sing you a lullaby. I remember when you were getting fluids and had to get up to use the restroom 3 or 4 times and hour.......each time saying "Mommy, I am SO SO sorry, but I have to go again." Each and every time, I would quickly reply, "oh thank you honey, I am so glad, because I have to go too." I think I really had you convinced, I did not want you to ever feel bad. We never left your side except to run and get food, or to run downstairs and change shifts. I would have it NO other way. No regrets.....not one single second would I have not taken the opportunity to share your company. Oh, what I would give......
Lord see me through another day with pain only you could know as You watched from heaven as your Son, Jesus Christ was tortured and crucified. Comfort and guide me Lord to help others as I have graciously been.
I hope you had a wonderful spring-like day in heaven. I am sure that you were adorned with the most beautiful Easter dress, with jewelry and handbag to match. Addison wore the dress that matches yours today. She looked just like you and my heart wept. I wept for what I will never experience with you.......no more birthdays, no more holidays. For the day you passed, so did my hopes and dreams for you. A part of ME died that day.
I bet there was the biggest Easter egg hunt in heaven, ever. I presume that you tried hard to get the most eggs.
I know you shared this day with the many new angels that have come to heaven lately. It seems as if heaven must be getting fairly crowded with all the angels who have been recently admitted. I hope you are showing each one the ropes. I hope you are still looking after your Grandpa Johnny and he is looking after you. Sometimes, that is the only thing that gets me through is thinking of the fun and mischief you all are up to.
I know you understand, I know you know my heart. I love you with every fiber of my being. You see me, all of me. You know I have good days and hard days. With Hunter turning nine a few weeks ago and now Easter, I believe things are just a bit more difficult lately.
Alexandria, I am but one breath away to where you are, but it is too far right now, and I can't come there just yet. I will survive......if only for the mere thought that I will walk with you again, hand in hand, and this time it will be for eternity.
I am going to visit your grave now. I know you are not there, but it is sometimes the closest place I can get to being with you.
I love you to heaven and back-
Mommy
Wednesday, April 7, 2004 1:15 AM CDT
Much to my dismay and against my better judgement, we returned last week. I made every attempt to prolong my return. We typically follow the three strikes rule. After all here in Missouri, it was 1) rainy 2) cold and 3) many of the kids at Crossroads had a terrible stomach flu. Some even winding up at the hospital for hydration purposes. Well, I knew I could NOT go there, to the hospital that is. I cannot imagine having to go to either of the children's hospitals anytime soon. Unfortunately, after the kids had missed 3 days of school, all they could picture was the homework mounting higher and higher. School.......such a small, minor detail really in 1st and 3rd grade. After all, WE WERE AT THE BEACH !!!!!! We went to my sister's house in Mississippi and then all jaunted over to Destin for a few days. It is absolutely heavenly there. I love the ocean. I love being there and thinking about Alexandria and how she stood right there, at that spot, her favorite place in the entire world. I am quite confident that is what "her heaven" is. She probably sits on the perfect beach, with the perfect sugar white sand and enjoys it daily. There is the perfect sunset every day on her beach..........I can only imagine. I feel so at peace staring off into the vast open sea. I could listen to the sound of the waves all day, every day. It is so therapeutic for me. That is why it is so incredibly difficult to come home, so far from that glorious place.
It is midnight here and sleep is not to be had. Today at Addison's first soccer practice of the season, there was another little girl named Addison on her team. Of course, in typical soccer mom style, I began speaking to this mom and we were exchanging the usual "how did you come up with that name?", etc., and then the question so frequently asked, was uttered by another mom. How many children do you have? Oh boy. To be perfectly honest, I have never skipped a beat in answering that question. A quick reply of all my children here on earth and their ages, and then, of course, I include Alexandria, our nine and a half year old daughter in heaven. I usually save that tid bit of info for after I have told them about the other kids. I know if I start with Alexandria, they will be so shocked, have so many questions or comments, and I would never get past that point. So, here it is, first night of her new soccer team, and the question was posed before Addison had even broken the slightest sweat on the field. There were a couple of moms on the team who know the situation, and I am sure cringed when it happened. This time I was caught off guard. I froze. I did not mention Alexandria. That is the first time I have done that. I feel so guilty now. I feel horrible. I came home and prayed and talked to Alexandria. I explained to her what I know she already knows. I just did not want to go there. I did not really want to discuss the topic that would most certainly have followed. In hindsight, I do feel like it was selfish. To not mention her is to discount her entire life. On the other hand, sometimes I feel so awkward in that situation. There is always that desire to speak her name, to tell of her life and I do so frequently, to anyone who will listen. Grant and I both just need a semi-captive audience to go on and on about her. I can honestly say that it sometimes puts up a border. It is no one's fault, just probably a reality check for many. They understand and have compassion, but it is scary to them. It is a painful reminder that none of us know how long we, or our children, will remain on this earth. After all, if it can happen to a young child, it can happen to any one, at any time.
For the most part, Grant, the kids and I have been doing really well. There is a greater distance of time in between intense depression and constant flowing of tears. (once every 24 hours, as opposed to all 24 hours of each day). Amazing how the slightest smell of alcohol (flushing her line every night), a memorable song (one that we sang together, or speaks of angels), Addison wearing her clothes (a necessary evil), or a picture of her, can take me back so quickly. I am taken back to our long and most difficult journey over the past several years in the blink of an eye. Some memories are so comforting, others haunting. Either way, we continue to forge ahead with our lives for the sake of our other children. We keep the pain tucked nicely and neatly away until we reach overload, at which point it surfaces quickly, without warning, and summons the tears to flow freely.
I will try to write more tomorrow when my head is more clear, and my heart hurts less. Thank you to those of you who continue to check in on us. We greatly appreciate it and please know what a great source of comfort it is to know so many still care.
In Christ's love-
Alison
Monday, March 22, 2004 12:48 AM CST
It is sunny, 70 degrees and not a cloud in the sky in Mississippi........it is the kids Spring Break and guess where we are headed........SOUTH !!!!!!!!
We are off to visit my sister Stephanie and her family. Grant will be holding down the fort here in the Spring-like (NOT) 31 freakin' degrees here in Misery......Missouri, whatever.........
Many of you know we just put our house on the market to sell. UGH !!!!!!!!!!!!!!! The thought of moving, is, well, quite nauseating (sp) (you would think after having a kid with cancer for 3 years I would know exactly how to spell that word) . This is a TOUGH decision and very emotional to say the least. For financial reasons, it would probably be best. The last week since our decision was made, has been chaotic and an emotional rollercoaster yet again. It is not the house we care about......for that is a material possession and not in the least our concern. It is however, the last place Alexandria called home. Each and every morning that I awake, I know it is the exact spot where my daughter lay much of her time here. It turned out, in the end, to be a God-send that our master bedroom was on the first floor of this home. Alexandria did not have to walk up the stairs when she was not feeling well. Our room was closer to the refrigerator for all those midnight snacks of Lucky Charms we shared. She and I would curl up and snuggle closely in that bed for hours and watch t.v. Crossing the big green bridge meant we were getting closer to home, almost there. Our room was closer to the refrigerator. It is in this home where she got "scooter foot." (see update from a LONG time ago). Although she was sick so much of our time in this home, there are still so many wonderful memories. I can feel her presence in this home. It is a great source of comfort. I can envision her sitting on the couch. I can picture her at the table eating......and eating and eating, when she was on steroids. I see her in my mind and feel her in my heart here. She was initially reluctant to move here, for she had to leave her beloved best friend Abby behind in our old neighborhood. She made friends here quickly. We all did. This neighborhood, and many of our closest friends reside here......stood beside us through thick and thin. God brought us here for a reason and it will be difficult to leave. With all that said, if it does not make financial sense, we will be staying put, so we will just have to see what God's plan is for us. Things always turn out as they should.......maybe not what we want, or expect, but certainly how God wants them too (and maybe a little help from Alexandria). A GREAT BIG HUGE "THANK YOU" to, Dawn and Daryl Dains and kids, Don, Judy and D. Anne Vollmayer for all your hard work (and excellent cleaning skills) on Saturday. Hey, these guys are awesome. They wash windows, paint baseboards and walls, but are not for hire !!!!!!!!!! These people step up to the plate when ya need them most. They go above and beyond the call of friendship and realtor (Judy) duties. These are some serious "anal, organizing, neat freaks" (I mean that in the kindest possible terms). Being an interior decorator, I have kept trade magazines for, well, not proud to admit it, but ten years to be exact. YIKES !!!!!!!! (I am sure those guys had some other choice words as they were carrying them to the van to be recycled). It was time to get rid of them along with a ton of other stuff in our basement. It was emotionally draining to go through box after box. Almost each and every one had meaning, had significance to Alexandria and her short life. I went through all of her school work from kindergarten and first grade. All the work we had done when Ms. Pam and Mom were her teachers while she had leukemia was there as well. There were coloring books and drawings that displayed her artisitic abilities wonderfully, and many that will never be finished. Shoes and clothes not needed in her heavenly home.....pictures of her at her dance recitals, medical paraphenalia, notes to her mommy and daddy, diaries that will never be written in again, pink roses lovingly preserved in a vase from her daddy. I could go on and on but the tears are flowing. They were almost swollen shut Sunday after crying so much in the last week. Thanks again to all that had to witness my emotional self on Saturday and were so understanding. Thanks again to Dawn for driving me to be with Alexandria at her gravesite when I could take no more. For some reason, Dawn and I always get a good laugh there. Last time, she tried and failed GREATLY, to get me to borrow her already used kleenex........HELLO.........GERM FREAK ON THE PREMISES !!!!!!!! Now she knew I would NEVER, EVER, have taken her up on this crazy offer, but it sure did get us laughing. Saturday when we pulled in I commented on how I had brought such beautiful Spring flowers to her on Thursday. Much to my surprise, as we drew closer to her, I noticed an empty vase there instead. The cemetary sits up on a hill........the possible culprit........wind. Dawn went one way, I the other. From 100 feet away she yelled, "is this one?" as she held up a pink carnation. "Yep" I replied. She was red hot on the right trail so I quickly switched my position. Well, wouldn't ya know, another 200 feet away and down one steeply graded hill, lay the beautiful flowers. I am not sure why, but it was quite comical at the time getting down that hill and back up again. Between me giving birth to 4 kids, and her 3, we almost needed to make a quick jaunt to the restroom we were laughing so hard. Women, you can relate I know. So, there she was. My Sweet Sissy Girl, giving me reason to laugh, reason to live for today. I thank God and her for that.
Adios amigos, will write soon, actually, if you do not see an update from me in the next 2 weeks, we are not coming back............
Be well and God Bless-
Saturday, March 13, 2004 6:52 PM CST
Hello to all-
It has been a long week since I last wrote. Losing Sarah has devastated our neighborhood yet again. It is all so sudden, and it has quickly taken me back to a year ago. Only another grieving family could possibly know the pain this family has endured, and will surely face in the coming weeks, actually the rest of their lives. Many of you have inquired about the Johnson family and how they are doing. Thank you to the one's who have. I will pass it on to them and know they will be comforted by this.
Our principal was just diagnosed with cancer last week, and I'll tell you what, I am convinced it is not if you will or will not get cancer......it is just when in your life, and what kind you will get. It is really getting depressing.
Another young Angel takes flight, and so many were there to welcome Abigail Anne Rose Ortiz, yesterday, March 12, 2004. Thank you so much for praying for this family. I know they too feel comfort in your prayers. I will write more in the coming days..........Alison
Thursday, March 4, 2004 10:20 PM CST
The rain falls heavily outside, and for each rain drop, it represents a tear shed by the Johnson family for their beloved Sarah. This week has been difficult for our family, yet I would never compare it to the week their family has endured. As sad and unfortunate as it is, their family has joined our club. A group none of us ever expected or wanted to be included in. It is the group of bereaved parents. As I sat with Evelyn, Sarah's mom, on Saturday, just hours after Sarah had left this world and flew happily into the next, my mind traveled back to one year ago. It was surreal. I just could not believe this had happened. Grant and I always said that we did have a special gift granted by God. The gift of time. 48 hours. 48 hours to prepare for the inevitable. Time to contemplate and reflect on Alexandria's life, time to somwhat process it all, time to say goodbye. I cannot even fathom how difficult it would be to not have that opportunity. At times such as this, there is cause for question, for guidance, an answer to the "why's." I don't think we would be human if those thoughts did not cross our minds. But God knew. As Pastor Trey from Fellowship Church stated, our Heavenly Father knew from before the day Sarah was born, that she would be here for 15 years and 11 months. She would have turned 16 in April, her birthday to be celebrated in heaven. He knew how many years, months and weeks she had, her family and friends did not. Would we all live our lives differently if we knew what that magic number was.........exactly how long God would permit us to be here on this earth????
Of course, I can understand Greg's (Sarah's daddy's) perspective. I can respect his feelings and the depths of his pain. Yet, I can most certainly appreciate all too well, what my friend Evelyn, is having to endure for the last several days. There is nothing in life that could prepare you to get that phone call. There is nothing that could help you to understand how a healthy, young, full of life, Child of God, could be taken away without warning. A child that you carried for nine months and grown to love so deeply. Sarah was not your typical teenager. She had an extremely close relationship with her mom, she was such a thoughtful and giving person. Her, her mom and sister Adrianna go on mission trips every year......to help others. She loved the Lord and loved life. My kids always looked forward to the times when "Miss Sarah" was coming over to babysit. Sarah was a "girly-girl" just like Alexandria. She loved to do hair and nails. Addison LOVED this. The boys would beg for Miss Sarah to bring her younger sister because she was an "expert" Nintendo and Playstation player.
Sarah, so many people love you and miss you so much. We know that you are HOME now, but it is a tough thing for your family to bear. I know that Alexandria was waiting for you. I know she showed you around that beautiful and magnificent place called heaven. I am quite confident that you girls are doing your nails and hair right about now. Sarah, I know how proud you are of your family. They are all devastated by their loss, yet they are so incredibly strong, their faith unshaken. Thanks be to God for the gift of Sarah Elizabeth Johnson. Her life so short, yet, her impact so great. To the Johnson family, please know that having walked this path, Grant and I will always be here for you. Just say the word, and we will be there. We are praying for strength for you all and the gift of memories that you will hold deep in your heart until you meet your Sweet Sarah again.
God Bless-
Alison
Mom to Angel Alexandria
Saturday, February 28, 2004 10:47 PM CST
It is with the heaviest of hearts that I share with you the news of our 15 year-old babysitter, neighbor and friend, Sarah Johnson, has sadly, and unexpectedly passed away and joined Alexandria in heaven. The medical cause of her death is unknown at this time but it is believed that her journey to heaven was quick and without suffering. Our family is deeply saddened by this loss, and our children taking it very hard as they loved their "Miss Sarah." Please join us in prayer for this family who is struggling with the "why's", and the "how's" at this moment. Please also take this opportunity to hold your kids a little tighter, a little longer, and make sure they know just how much you love them, for none of us know when God will call us home........
God Bless-
Alison
Thursday, February 26, 2004 2:30 PM CST
I will post much more later about our trip as promised, just wanted to put out another urgent prayer request. There is a little girl named Abigail who is fighting for her life. She is really struggling right now. For more details please visit her website.
www.caringbridge.org/va/abbyallies
Thank you in advance for taking the time to pray for peace for this child who desperately needs it.
God Bless-
Alison
Tuesday, February 24, 2004 8:04 AM CST
Well, what can I say....it is great to get away, it is great to come home. After 2,000 land miles, and 2000 nautical miles........WE ARE HOME SWEET HOME !!!!!!!!!!! Due to recent news coverage, I am sure that many of you know about the horrible incident in the Port of New Orleans. Two ships collided and they closed the mouth of the Mississippi River, and in fact it is still closed for search, rescue and recovery of the ship. They made the announcement just before dinner on Saturday evening, that there would be delay in our arriving in New Orleans and that a ship had gone down. We did not learn more facts until the next day. We were originally supposed to arrive at 8:00 a.m., Sunday morning. Addison and I were sitting in the room during the announcement when they said "lives were lost", but they did not say how many. Addison and I immediately began to pray for those people aboard the ship and for their families. I called Stephanie's room to see if the cruise director really said what I thought he said. She confirmed, and we were both still in disbelief. I had visions of the Titanic going down. I kept thanking the Lord that it was not our ship. Addison and I met the boys outside the cabins, and as we walked the long corridor to dinner, there were many questions posed by the young ears who heard that message. How tragic. It was an absolutely wonderful vacation filled with rest, relaxation, reflection, sun, surf and sand, and now my thoughts were consumed by families missing their loved ones who had drowned in the Mississippi River. Word got around the ship that they had recovered 3 of the bodies and they have spotted the other two, however, it will take a great deal of time remove the ship from the river. The whole thing made me rather sick to my stomach. The next day we were told that there would be a delay of a couple of hours in getting off the ship. So, we thought, well, maybe noon at the latest, but it was not until after 4:00 p.m. that people started disembarking. There were many people that missed their flights home. It was rather interesting to witness the way different people handled the situation. Some were patient, and seemingly, completely understanding that this was an unforseeable and regrettable situation. Some were outraged at their inconvenience. Now, honestly, I can see where some people (like doctors in our party who were going to be on call and responsible for other human lives) would be upset and concerned. I can even understand if I had a flight to catch, had to pay $600.00 to change it, and had to pay for a hotel room for the night to boot, but there were some people in an absolute uproar over it. I, personally, had waves of intense guilt rushing over me because I had secretly asked Alexandria to extend our vacation. Surely she knew that my wishes were not to the extent and cost of human lives??!?!?!?!?
If my vacation was to last any longer, I would certainly wish to be stuck in Cozumel, where the water was crystal clear, a shade that looked surreal it was so beautiful. I would certainly not chose to be held hostage on the boat in Gulfport Mississippi, the place the Port Authority chose to come into. My sister who lives right next to Gulfport, had to wait all day to get off the boat, drive several hours back to New Orleans to get their van, and then drive 2 hours back. UGH !!!!!!!! Grant and I were supposed to drive back on Sunday, making the 10 hour trek in one day. Obviously, this was not possible due to our late departure. We got off the boat at 4:00 p.m., gathered our luggage, and had to carry them down the pier to the chartered buses. Lesson learned # 1.....NEVER, EVER pack more than you can humanly carry. We had 14 bags including purses, backpacks and suitcases. Way more than we had any right to be bringing with us, but you know the mother in me just gets the best of me and I pack anything that is not moving. Come on people, surely YOUR mom taught you that you never want to be in a situation without clean underwear. After a two hour bus ride, the busdriver, who was NOT from New Orleans, had not a freaking clue of how to get back to the Port Of New Orleans. Let us also keep in mind that "IT IS MARDI GRAS IN NEW ORLEANS !!!!!!!!!!!" We drove around, in circles mind you, for another 2 hours. Oh yeah, there was a Mardi Gras Parade going on, AND WE WERE ON THE PARADE ROUTE !!!!!!!!!!! Yes, we were traveling down St. Charles Street, the same street, but opposite way of the parade. It took us forever to go a few miles and only in a complete circle......very frustrating, and let me just add, I have the bus driver's name and number, and he should be afraid.....very afraid. Well, no matter how bad things stink, it stinks for someone else even worse. My sister and her family were on the bus in front of us, their bus driver was lost too. However, they had the added benefit of a woman barfing on the bus in the bathroom next to their seats, no air condition, everyone in the family needing to use the potty but could not due to the poor woman in there puking and all that it entailed. Yep, they win. They win the prize 'cause that would just have sent me right over the edge. I feel like I have a reasonable amount of patience, but that would have done it right there. No circulating air, and passengers hanging out the window of the bus during a Mardi Gras Parade. Let me just add, that, THE PEOPLE IN NEW ORLEANS ARE CRAZY !!!!!!!!!!!!!!!!! (I mean that in the nicest possible terms) They do not call it "The Big Easy" for nothin. Wow, thought I had seen alot of partying in my college days, but it was all put to shame by what lay before my eyes (and my children's) on St. Charles Street. Now, I for one, am usually up for a good time and a good party...........but I can guarantee that I would NOT take my baby and camp out with a pack-in-play in the middle of the city with the party animals that were there. You know things look bad when your almost nine year old (Hunter) says, " Mommy, is what they are doing really appropriate?" I ignore the question and quickly move on to something else. Everyone from very old people to 18 month old kids were perched on ladders (some of which were VERY tall ladders) on the side of the parade route to "get a better view." There appears to be an actual science to this whole thing and gives what most of us would call "tailgating" a whole new meaning.
Well, my children are ALL riled up and I fear it will take a great deal more effort to get them to bed tonight. I must continue later, for I am also suffering from the ill-effects of "Home and Garden Television" complete withdrawal, and lack of eating food every two hours withdrawals. Ahh...........the simple pleasures of life.......
Stay tuned, this episode of "Holiday Happenings with the Haddock's" to be continued..........
AHH
Friday, February 13, 2004 2:19 PM CST
Aruba, Jamaica, ohh I wanna take ya......
Bermuda, Bahama........
Oh, sorry, just daydreaming.......again.
We are frantically packing anything that doesn't move around here for our big trip. Actually, Bailey the cat is even trying to stow away with us (along with a large number of friends). Bailey keeps jumping into suitcases whenever I open them. Naughty little kitty..........Ms. Lauren Cole will take such good care of you, and Jordan need not fear the wrath (or bite) of Brittany this time. Thanks guys for the help, we really appreciate it. Nancy, Lauren and Jordan came over today to get the "inservice" on taking care of her. Nancy thanks for the cute book. Funny about friends, we tend to think alike. Nancy had gotten me a book, and I had gotten her one too. There would never be enough words to describe the thankfulness in my heart for all that Nancy has done for me and my family this past year. I could go on and on. I have been so blessed to have you in my life. You never judge me (at least not to my face.....haha), you are always there with a shoulder to cry on and a box of tissues, you went above and beyond in your help with the Alexandria's Angels Foundation Memorial Golf Tournament, again, sacrificing much, complaining not at all. You are such a warm, caring person, that so many people love. Mary Ann Ruckman, you raised a very fine young lady, friend, wife and mom, I am sure you are SO proud of her. (did you catch that Nancy I said YOUNG !!!!!!!!!!!!) I thank God daily for our friendship and all that it has brought to my life. I have never met someone who can cry as easily as I can, and gets the goosebumps as much as I do, until I met you. We are two peas in a pod. THANK YOU FOR ALL YOU DO !!!!!!!! Thanks also to Dawn and Judy and many others who have been such a solid support system. I could not have made it through this year without you.
SO many other people have remembered our family at this difficult time and I am SO appreciative of each note, each gift, each card, each e-mail, each phone call. It really shows the impact that Alexandria had on so many lives. Thanks to the Westrich's for the dinner gift certificates, my bible study for a cookie bouquet, Khalita, God love ya, thanks so much for the cd, book and remembering. A sincere "thank you" to Katie, Nancy's cousin, (compassion and giving obviously runs in their family), for the cd. We absolutely love it !!! I know I am forgetting someone, so please forgive me in advance. You see, I myself, suffer from a debilitating disease called "Dory Syndrome." (for those of you without young children, Dory is the character from "Finding Nemo." I AM THE FORGETFUL FISH !!!!!!!!!!!!!!!! That is why my new life motto is her's, just "keep on swimming, keep on swimming, keep on swimming." That is what we must do in life, despite the ups and downs, whether we have lost a parent, a child, a friend, a job, or marriage.........God wants us to keep on keepin' on. He put us here for a specific time, with a specific purpose for each of our lives. Some of us will accomplish that goal in record breaking time. Others of us will linger on this earth, longer than we expected or intended, but not God. His plan has a purpose, a very distinct purpose that will carry on until the mission is complete. There is real power in that. Many of you are probably reading The Purpose Driven Life by Rick Warren. There are MANY churches doing lessons, sermons, and bible studies on this book and rightfully so. It is an absolutely wonderful book that will put your ENTIRE life in perspective. I urge anyone, searching for your purpose, or nurturing your purpose in life, to read this book. It is life-altering, life-changing. When you realize, as I did after reading the book, that there are five benefits of Purpose-Driven Living ........1) Knowing your purpose gives meaning to your life...without God, life has no purpose, life has no meaning. "Hope is essential to your life as air and water." The message is, no matter HOW bad things get, God is always there for us......he will never forsake us. 2) Knowing your purpose simplifies your life, it defines what you do and what you don't do." It forces you to evaluate your life and which activities have purpose to help fulfill what God wants to accomplish in my life." 3) Knowing your purpose focuses your life......."you become effective by being selective." 4) Knowing your purpose motivates your life. "Purpose produces passion." 5) Knowing your purpose prepares you for eternity. (I think this just may be the most important one. If we realize, contrary to popular belief, that life IS a dress rehearsal........a dress rehearsal for eternity and how we will spend our lives there, then we "get it." The book gives a perfect example of this. "What people fail to realize is that all acheivements are eventually surpassed, records are broken, and tributes are forgotten." "In college, James Dobson's goal was to become the school's tennis champion. He felt proud when his trophy was prominently placed in the school's trophy cabinet. Year's later, someone mailed him that trophy. They had found it in the trashcan when the school was remodeled. Jim said, " Given enough time, all your trophies will be trashed by someone else." "Living to create just an earthly legacy is a short-sided goal........a wiser use of time is to build ETERNAL legacy." These thoughts displayed in this book, are so thought-provoking, so profound, it certainly deserves our attention.
Another point driven home in this book is ,"IT IS NOT ABOUT ME/YOU." "The purpose of your life is far greater than your own personal fulfillment, your peace of mind, or even your happiness." It is far greater than your family, your career, or even your wildest dreams or ambitions." It must not only begin with God, but He is the source of our lives. .........we must become what God created us to be. I recommend this book highly, as it causes us to think beyond ourselves and this short, 100 year at the most life on earth, but rather to focus on our eternal life.........which is much, much longer than this one. Pondering all these thoughts lately does bring me back to one year ago, almost to the day. Knowing Alexandria's grave condition, a Presbyterian pastor at Children's said to me, " this life is but a blink in time, our eternal life is what matters." Now, I will be the first to tell you, that at first assessing his statement I was highly offended. To myself, I quietly thought, "what if this was your child, lying here, full of blasts in her blood, dying before your eyes?" How would you feel?" Would you have the same opinion, the same recommendations?" It is a full year later that it has taken me to not resent his comments. First of all, he is a kind man, and would never do any harm purposefully, secondly, how true his words really are in hindsight. It has been a LONG haul to get to where I am now, excepting of her short life, and God's great plan for her. This life, IS preparation for the next.
A special "thank you" to Debbie Robinson at Children's and the cards you have sent over the past year. Knowing how much Alexandria loved you and trusted you with her life, gives me great comfort. Grant and I appreciate all that you did for our daughter, and for us. You are surely living out God's purpose for your life.
The last bit of information I will share with you is about Addison Madeline Haddock. Today, on the almost anniversary of her sister's passing, and in Alexandria's memory, she donated, 10 inches of her hair to "Locks Of Love." At first, it was against her will. She kept saying "Mommy, I want to be Rapunzel, I do not want to get my hair cut until I am five years old." Well, knowing full well that the cruise, and then summer are coming up, I strongly suggested to her that she may want to reconsider. I told her of a little girl who would appreciate her hair SO much, just like Sissy would have. Okay people, I downright bribed her. I told her that she must get her hair cut before the cruise. I am not proud of it, but it is the truth. I must admit that it will be MUCH less to take care of on the cruise and on daily basis. Her hair was almost to her bottom. Janet was our friendly hairstlyist at "Hairy Elephant" here in O' Fallon. They donate their time and talents to "Locks Of Love." KUDOS TO THEM !!!!!!!!!!!! What an awesome thing for them to do. Before we began, I explained the story to her. I could tell that several times she was fighting back the tears as I proudly captured videotape and pictures of the big event. Addison was in a daze. I kept thinking she was going to go ballistic when she realized her precious hair was gone. She sat patiently, not saying a word, which is highly uncommon for her. She gave me a smile several times as if to say, "It's okay mommy." I felt myself holding back the tears as well. Tears for a little girl who loved her long hair SO much, but gave it up, without a fight, to a child who did not have any. She was so proud, and commented that, "Sissy is watching and is proud of me." Good Lord, help me contain myself after this comment. I fought back the tears for my daughter's sake, but it was not easy. GOD LOVE ADDISON, for at the tender age of 4, SHE even gets it. In her world, helping another child is way more important than silly old hair.
Lord, please know how thankful I am for my three healthy children on this earth. I miss my Alexandria SO much it hurts sometimes, but I know she is with You. What could be greater than that??? Lord, please help me to realize my purpose on this earth, so that I may possibly help others on this long, winding road. I consider it an honor to do Your work, Your will.
God Bless Each of You for consistently coming here and checking on us and a special "thank you" to those who sign in and let us know you care. Thanks to each of my friends and family who have stood beside us in this most difficult year of our lives. We are so indebted to so many.
To my dearest Alexandria-
I know that on February 16th, 2003, all of your pain ended. I am thankful for that. However, my deep, dark pain and anguish was only beginning. I would give anything to see you just once again, to hold you in my arms for one moment. I do not know how long it will be until we see eachother again, when we will walk the streets of heaven hand in hand. I am looking forward to that day, but I suppose God thinks I have not finished my work here on this earth. Some days I feel strong, other days I feel so weak. I hope I have not dissappointed you in this last year. I know you know that your daddy and I tried everything we could to help you live. Daddy, Hunter, Hayden and Addison all miss you. We talk about you all the time, we will NEVER forget you. Addison said the other day that "Sissy will be going with us on the big, huge boat." She then quickly said, "Sissy is in my heart so I take her everywhere." We all take you with us everywhere we go ..........you DO live in my heart and in my mind forever. I love you my Sissy Girl. I know that only since your passing could you see the enormous positive impact you had and continue to have daily on so many people. I am so proud to be your mommy. Thank you for coming to see me in my dreams, I will cherish them......till we meet again my blessed child.
Keep your Grandad Johnny in line up there in heaven.
Alison Haddock
Proud mom to Angel Alexandria, Hunter, Hayden and Addison
Saturday, February 7, 2004 7:35 PM CST
I was not prepared for the feelings that this day, Alexandria's 10 and a half birthday would bring. The doorbell rang late this afternoon and my first reaction was UGH !!! Don't feel like talking or seeing anyone. I wisked Addison into the bedroom with me, until I could make myself presentable. I did a quick peek out the window, and much to my surprise, it was Pastor Lew. Grant had gotten home from work, only to have to run back out to the hospital quickly, while Pastor Lew was here. I had realized it was Alexandria's half birthday and the big celebration we had last year, but for some reason, I had neglected to remember that Pastor Lew was here one year ago, to the day to celebrate with us. That day was magical, absolutely unforgetable. Just before he left Alexandria asked Grant to get her out of bed, help her to the foyer. She came out of our bedroom and although she had not felt good for several days, she insisted on Grant taking her out of that room. She wanted to give Pastor Lew the chocolate chip cookies that someone had brought by that day. Gosh, she had the best heart, always so kind and thinking of others. She really trusted him, felt close to him and I believe it was her way of saying "thank you." Thank you Pastor Lew for all the prayers, thank you for the hope you have given my parents." At her "Celebration of Life" some of the video was taken that night..........she said " I am just so happy, I don't hurt here, or here, or here as she pointed to different body parts." He sang her several songs, we sang together. Grant and I quietly rejoiced in her short life, knowing that her days, unless God provided her with a miracle, were numbered. They could be counted on two hands at that particular point. 10 days, 10 days later she would earn her pink-tipped angel wings. Another Angel takes flight........a beautiful, sweet, kind-hearted, loving angel would slip away from this earth and soar into the arms of Jesus. That night after he left, the boys sat on my bed with their older sister. They played with her new "Hello Kitty" doll house. They did not care that it was a "girly" toy. They just wanted to be with her. They both hugged her so tight before they went to bed. Memories, such wonderful, blessed memories. After Pastor Lew left today, my tears could not be contained, and of course, I called Nancy. She insisted that I come over. We talked and cried, and cried and cried. I was certainly due for a good cry, and that is precisely what I did. I miss that girl SO much. I wish I could hold her right now.
Well, it has been snowing, sleeting and cold horrible weather for so many weeks here. We all know that it snowed the weekend Alexandria fought so hard to live, and gained the ultimate healing in heaven. I haven't really cared so much for the snow since. Instead of being comforting, it brings back too many painful memories. Well, there is only one thing left to do when you are down and out. That is pray. Pray really hard that you get an e-mail message from a travel company soliciting cruises and enticing you with VERY low rates. Then, when you book that cruise for 5 people, you pray really hard that your husband does not freak out at what you have done. You, of course, will explain, that you all need desperately to get away to a warm, sunny place. You share with your hubby that you are going to go freaking crazy if you don't go.........SOON !!!!!! Well, then you remind him that it is Valentines Day, we never did get to fully celebrate his 40th birthday.......see, there are SO many reasons to go. Then you simply Thank The Lord, that you married a good sport, who is very flexible, and loves the beach as much as the rest of us. Then you quickly praise God for His understanding and making all of this work out and thank Him again for not being a "judging God." I know it was a rather crazy, spontaneous move as we have not actually gotten our tax refund just yet. Yes, it is true. We leave out of New Orleans on Sunday February 16th, (one year to the day of Alexandria's passing) and return on 22nd, the day that her "Celebration Of Life" was held. I am so thankful that we will not be here. I am quite confident it will all be here when I get back, and I will have to deal with it, but for this moment, I am excited about our little excursion. We will hit Montego Bay, Grand Cayman Island and Mexico. The best news of all is that my sister Stephanie and her family have decided (okay, so maybe she was conned) to come along with us. My children are beside themselves to spend a week with their cousins on a "big boat." There is Camp Carnival for the kids, and myself, Grant, Stephanie, and Phil will be sipping margarita's pool side with an ocean view. Ahh.........................
I just may make it through February after all.
God Bless-
Alison
(this was written, Friday, February 6th, 2004)
Friday, January 30, 2004 11:18 AM CST
I know, I know, I don't write for two weeks, then twice in 24 hours?!?!?.........I just want to keep you all on your toes out there. I want to thank those of you who have written guestbook entries and e-mails today. I appreciate you taking the time to do that. It is so comforting to know that people still care. I really did hate to focus on the negative in my entry, and I know I have shared that before. I simply felt it is such a very important issue worth reiterating for those who may have missed the message previously. Most of you would be in shock if I got into the details of the stories behind these words, but I don't have the time or the inclination to "go there."
There are several more people who need prayers right now. Grant's mom has been in and out of the hospital for several weeks now with kidney failure and some other undetermined issues. Families in the area still need our prayers, the Cruse family who lost their son in September and Mackenzie's family (newly diagnosed daughter with cancer, and dad with lung cancer). Please pray for my friend Carol, who lost not only her daughter to leukemia last February, but lost a baby in December as well. I pray for strength and comfort on their approaching "anniversary" of Meghan going to heaven. Please pray for a caringbridge family whose daughter has relapsed ALL and their son was just diagnosed with ALL as well. Absolutely unbelievable. I do not know how these people do it with more than one family member ill. Please continue to keep Brendan's family and these other families in your prayers as these are very difficult times. I would love to give these families as much love and support that was given to us in our time of need.........everyone deserves that. It is those acts of kindness, generousity of others, that kept us going on many occassions.
Our cat, Brittney, died last week. She was 14 years old and she was Grant and my first "baby." She then became "Alexandria's cat." She slept most of the time on Alexandria's bed, then on her comforter after she had gone. They loved eachother so much. I was surprised she lived so long after Alexandria's passing. I really thought she would go sooner. Of course I was sad, my children and Grant sad as well, but there is great comfort in knowing that Brittney is reunited with her. Together again, this time for eternity......I am almost jealous..........
Life seems to be going on, February seems to be coming regardless of the fact that I would like to skip it. So, I will buckle down and brace myself because I know it won't be easy. However, after February 22nd, there will be no "firsts." Some say this is good, some say even more difficult. Well, one things for certain, time will tell, and until then I have my seatbelt fastened tightly for the potentially bumpy ride.
God Bless-
Alison
Thursday, January 29, 2004 10:22 PM CST
It is been over two weeks since last I updated, and I really just have not been up to it. The last few weeks have been a series of highs and lows. Sometimes I feel by updating the website I set myself up for criticism and ridicule. I will honestly say, an overwhelming majority of you come here and other caringbridge sites, not be "voyeurs into our saga", just genuine and caring people. I am so thankful for the wonderful postings not only in the guestbook, but for the many personal e-mails I receive on a weekly basis. So many caring people, encouraging words, that I will forever be indebted for. I have also received e-mails from moms who have shared their heart, bared their soul, only to be criticized for their actions, their words, their way of grieving. It really hurts to think that somehow, as parents who have lost, or whom are still in the battle, are someway asking for feedback. Last time I checked, this was not a chat room. Originally, this website was set up to inform all who were interested in Alexandria's fight against leukemia. It let people know what was going on so that many prayer warriors could pray specifically for her. In the year since her passing, it has been a way for me to let people, who were interested, know how Alexandria's family is continuing without her, surviving despite the huge, unbearable hole in our hearts. It is a way for me to vent, to release all the feelings and emotions that if kept bottled up, I would have to probably be committed. It is so disppointing to hear of people, having never walked this path, criticize those who have to bear this cross. I am so sorry for the parents who have had to deal with these type of people lately. It is bad enough to have to endure the loss of your child, but when people are around you, a large part of which are family, are not supportive (in the child's life or after their death), it is very disheartening. Some I have spoken with have such a lack of support of friends and family, it is unbelievable. At a time when you need people the most, they book on you. Now, I for one, have had to deal with this one. Listen, if someone is grieving the loss of their child, your job as a friend, even if you call them on the phone 97,000 times and they do not call you back..GET OVER IT !!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!! The friends that surround me now are the ones who did not complain or talk bad about me when I did not return their phone calls. They simply realized that I needed some time, some space, to just be alone. They did not fault me for this or say I was being rude, they simply realized it was NOTHING personal, just the way it is. It is called "losing your daughter after a 3 year battle", sadness, grief, depression, "not wanting to bring the whole world down with you." This problem is not an isolated event, believe me, I hear from ALOT of grieving parents. That is the reason I write these words here for all to read. Maybe it can help someone else, somehow. I am also not claiming to have all the right words. In fact, I myself, was just in the presence of someone dear to me, dealing with something very difficult. I can honestly say that Ieft many times, analyzing every word, every comment that I spoke to her. My worst fear, "did I say something that could have been misconstrued, my point misunderstood, my feelings and caring misinterpreted?" I would be devastated if I ever thought I hurt her feelings. I completely understand silence for fear of saying the wrong thing. But criticism, harsh feelings or ill-will .............that one, I do not get. I hate not to have written for two weeks, then have to write something negative, I just know the pain that others have caused some of my dear friends, myself and others who are grieving to the extent that they have closed the website for their children so they don't have to deal with it anymore. My heart breaks for their second loss, first their child, then the loss of the people that should care and be the most supportive.
I would also ask that you keep Brendan in your prayers as his situation continues to deteriorate and the family is searching for any alternate means/experimental therapies that are available for them to try. I do not believe that they are being selfish in their wishes to help their son to live, they will try at ANY resaonable chance to sustain his life. Grant and I were questioned by some about who were we saving Alexandria for ???,,,,,,,her, or our own selfish reasons. This is not anyone's judgement call but the parents, this is life and death, and it is up to the child's parents, their best advocate, to decide what is best for the child. If anyone is had success with any other treatments either palliative, curative, or any hope to offer whatsoever, please contact me, and I will be in touch with Brendan's parents. I have spoken to mom, Chris, several times in the last few weeks. I can honestly say, to hear her stories of their journey, what they have been through with other area hospitals and doctors, well, I am shocked really. I thought we were some of the select few that had to deal with egotistical doctors whose main goal was to further science along, not the overall well-being and survival of our daughter. Turns out, at one point, we shared the same doctor.............imagine that?!?! I knew her story sounded all too familiar, therefore, by the time she was through with her story, I did not even need to ask the obvious. What a shame........an awful shame that there are doctors out there that are practicing medicine under the auspices of a caring physician wanting to help children fight and defeat cancer. Shame on them !!!!
I do ask that you continue to keep this family in your prayers as they really need a miracle to fight this horrible disease. Thank you so much to the individuals who have offered to take meals, or babysit for this family. You will never know what it means to these families to have perfect strangers offering to help them out.
I want to say thank you again to the friends (Judy and many others) who continually check in on me, don't judge me when I am not able to return phone calls, and accept me for who I am and what I am going through. These are the friends that will last a lifetime.
I apologize for not writing sooner and thank you to the so much to those who still care, still e-mail us, still leave messages in the guestbook to support and encourage us. You are such a blessing to us in more ways than you could ever know...........
God Bless-
Alison
Monday, January 12, 2004 9:36 PM CST
Back to life.........back to reality........back to life.....back to Misery........I mean Missouri....oopsy!!!!! I will post much more in the coming days, however, I want to focus on what is SO SO very important right now. Prayers have been heard, prayers have been answered. Kenny's surgery went very well and I hear he continues to get better each day. I have not heard all the details on what they found, etc., but he made it through the surgery...dad says it went much better this time than last. I will post more details after I talk to the family.
Kailie is doing much better, has been giving the nurses at St. John's some trouble (she is SO entitled given the "time she has done there" for the last three years!!!) I am not quite sure if she has busted that joint just yet but I am sure I will learn soon and let you know.
I share first with you the good news....Kailie and Kenny, reason for praising our God, our heavenly Father, yet again for what He has done in our lives. It is because my belief in the power of prayer, that in the same update, I also come asking for all prayer warriors to join me in prayer. I am talking down on your knees, good ol' fashion, asking God for a miracle prayer. A little boy named Brendan who lives here in O'Fallon has been fighting neuroblastoma. His mom has contacted me via a mutual friend regarding this new development, and very grim prognosis. He will need nothing shy of a miraculous occurance to be healed here on this earth. Again, I will post more as information becomes available.
I was SHOCKED to come home to 2,000 hits to the website while I was gone. Not sure what that is due to, maybe just checking to see if I checked myself into a nice padded room in Farmington, (aka the funny farm, HaHa), or merely visiting a family member. It was a close call, a toss of the coin, believe me, as the last weeks have been MORE than rough, downright unbearable. I did go south, but not there. My reason for travel was not about me, so don't worry. It is upon my return, however, that I venture back into the world of hope and peace in my heart and soul, refreshed, renewed, ready to face whatever the next adventure God has in store for me...........thanks be to God !!!
In Christ-
Alison
Monday, January 5, 2004 11:26 AM CST
Just wanted to let you all know I am leaving town for a few days. While I am gone please keep in your prayers Kenny Shiels who is undergoing brain surgery this morning at St. Louis Children's Hospital. The longest we had to wait for a surgery/procedure was 1-2 hours from start to finish. It was nervewracking to say the least. I cannot even fathom how Kenny's parents will make it through today, maybe as long as an 8 hour surgery. I know I will pray without ceasing on a long drive today that Kenny does okay, and the results of the surgery are not as bad as it seems. I will keep you posted, but please pray with me for Kenny and his family.
Kailie Rhines who is in the hospital and her link is at the bottom of our webpage. They will be posting some news in the next few days so please visit and let them know that you are thinking about them and praying for them. Kailie is very uncomfortable and in some pain due to them draining her tummy. Thanks to Kris Ozmat and Dawn Dains who put together a wonderful package of Creative Memories stuff for Kailie. I appreciate it greatly, and KNOW Kailie did too. Thanks to Johnelle, who thanked me, but it was certainly not me......I was just the delivery person. Glad to know we got a smile out of her. That's good news. Her CT scan turned out okay..........PTL.
Please pray for a decreased amount of pain, and that they get a ticket out of there sooner vs. later.
God Bless-
Alison
Wednesday, December 31, 2003 11:35 PM CST
As I sit here and type this entry, it is but a few short hours away until the dawn of a new year........and God willing, it will be better than 2003, which pardon my language, genuinely SUCKED !!!!!!!!!! I am well aware that the year 2003, was the year of my life that I have grown the most. After all, we are much more apt to learn invaluable, life-long lessons in the valleys, and not on the mountaintop. That is a blessing whether we realize, want to embrace it, or not. I remember last New Year's Eve.........haunting memories of Grant embracing me on the stairs and saying "I believe our family will look very different this year." As much hope as we had that a miracle would be bestowed upon Alexandria, would could not deny not the very real possibility that she would earn her angel wings. It has been a long, difficult holiday season without my baby. The emotional pain in my heart hurts so bad at times that it actually, physically hurts. I do know this. There are many families right now that have pain that measures way beyond mine. They are sitting next to hospital beds, studying monitors that tell them if there child is breathing okay, holding their hands, kissing them goodbye one last time. Some have just celebrated their last Christmas with their child. I know that type of pain, the wondering, the not knowing what the next day would bring, the anxiety. That particular emotional pain for me, and physical pain for Alexandria is over. She is totally healed........completely happy, her life fulfilled, and would not want to come back if she could because it is so glorious in heaven. It is just the missing her and longing for her that the Haddock's must deal with for the rest of our days.
We did nothing extra special for Christmas, we are doing nothing extra special for New Year's. We have been in our own little world.......trying to survive this next series of "firsts" without one member of our family. The kids have been doing well. I know they miss their sister, I know the anger that she is gone is manifested in various ways, all of which are completely normal. I am thankful to Grant, most of all, who has "carried" me through the past few weeks. He played Santa (he wrapped every present by himself Christmas Eve), he cooked meals when I could not find the strength. He has cleaned the house and cared for the children when I had no energy to get out of bed. I have not been this way since her death, so I am not sure, but I think the Ambien is carrying over into the next day sometimes. I may need to reduce the dose.
There is much pain, but I refuse to find myself ungrateful for all that I do have. I have friends who still call, who still care. While some have moved on, many have stayed, and I am blessed for these true friends. I AM thankful for three healthy, happy children. We have friends that lost their only child to cancer this year......my mind cannot even fathom this and all the pain and life changes that entails. I am grateful and blessed to have this website to share my feelings, but more importantly, people........just like you, who are reading my words, saying a prayer for our family, or leaving the most lovely messages for us in the guestbook. It never ceases to amaze me how incredibly awesome people can be. So many kind and encouraging messages that literally help us to make it through the day sometimes. A million "thank you's" to those who take the time to write to us. I know this takes time, I know that many of you follow many caringbridge families, and it is hard to keep up with everyone. Not to mention, the depression factor. Believe me, I know, it can become very disheartening and downright depressing to see all of these families and what they and their children must endure. For those of you who hang tight and keep checking up on us.....God Bless you each and every one. I believe what goes around comes around and God will bestow upon you the same, if put into a similiar situation.
Thanks to the friends who invited us to 40th birthday parties, we are so sorry that we had to miss it. We know that you all completely understand, but still wish we could have been there to celebrate the big event with you. Thanks to the many others who invited us over for Christmas and New Year's Celebration's. I cannot tell you what it means to us that you would think of us and want to include us in your own family's traditions. I do not feel these people extended invitations out of some "obligatory duty or sense of responsibility." I believe they are just genuine, good-hearted and caring people that God chose so perfectly to put into our lives when we would need them the most. I suppose we just decided to take the easy way out, stay home, and silently wallow in our sorrow. But after tonight, we only need to get through and survive until February 17th, and all the "firsts" will be over. I have talked to many that are farther along in this process called grief who tell me quite frankly, yet lovingly, that it does not get ANY easier. This is not really what I wanted to hear. I know they are just trying to prepare me and mean no harm. They want me to feel normal if this should happen to me. Maybe a little white lie would be in order at this particular time. Some even say that it gets worse, the longer they go without seeing their child............UGH !!!!!!!!!! I cannot take it !!!!! I just have to keep believing that everyone grieves differently. There is no right or wrong way, just different. I will pray for peace and comfort not only for these indviduals but for myself as well. I know Alexandria would not want me to be a walking mass of depression, yet, I do think, she understands that at this particular time, things would be difficult at best.
I have been scouring over these pictures that Pat sent me. I am thankful for each picture, each memory. Alexandria looked a little like me when I was her age, somehow, that is comforting. It also reveals once again to me that much can change in your life, for the positive, or the negative. Sometimes things are going wonderful. Sometimes they aren't and you have to, "pick yourself up, dust yourself off, start all over again." Life is hard sometimes but we can all learn daily from the good and the bad. If I could take it all back, erase time, change the clock, would I ? A thousand times, "yes" ......in a split-second, if it meant having my daughter back here with me. Yet, through this experience, I have met some of the most wonderful people. I have met people who have done so much for my family and countless others without really knowing it. We all know the old adage, "it is better to give that to receive." I have never felt so strongly that this is SO true than this Christmas season. For all the negative this disease has caused, for all that it has taken away.........it has given much too. I have grown in my faith ten-fold. I have been blessed to have a more intricate role in Alexandria's Angels. I have been given the opportunity to give children who have cancer, or life-threatening diseases, special gifts. My role in this was actually very small compared to what all of you have that have contributed cumalitively to the Foundation. You gave money, time and talents to make our fundraiser just as successful as last year. What this did was put a lot of smiles on a lot of faces. You were sharing God's love. Please know that your generousity has helped far more than you could imagine. Connor will get a new computer. Can you imagine being "cooped up" for the winter? Can you imagine not leaving your home except to go to the doctor because your child's immune system was not capable of fighting anything off? I can imagine it..........I lived it. It REALLY STINKS sometimes, believe me. Now Connor and his siblings can enjoy playing on the computer, and mom can update their caringbridge site more frequently. HOW AWESOME !!!!! Kenny received some presents as well. For reasons his family is unsure of, he has been speaking of "his baby" for weeks. His brain tumor has grown, making even slight noises difficult for him to bear. So, he asks everyone "shh, shh, my baby is sleeping." Well, there really was no baby. He was pretending or "thought" he had a baby due to all the chemo, radiation, and probably the tumor itself and its effects on his brain. Grant and I, on behalf of "Alexandria's Angels Foundation" bought Kenny a boy baby doll for Christmas. I have heard through the grapevine he hasn't put that baby doll down. He pretends to feed it, sleeps with it, and carries it around with him everywhere. He named the doll "Max Steel." Do you even know what that means to me???? How we could give such a small gift, and how it is appreciated beyond words to Kenny and his mom and dad. It warms my heart and soul. Kenny's siblings also received some gifts. This disease effects the entire family and we believe all of these cancer-kid siblings deserve something special as well. Kailie and her brothers received Playstation 2, a basketball goal and a few other gifts that have not been delivered yet so I won't spoil the surprise. Johnelle and John (Kailie's parents) sent me pictures of the kids on Christmas morning opening these gifts. Kailie has felt horrible for several weeks now, but a smile was on her face at that particular time. I don't believe these kids are just smiling because of just the gift (or threats from their parents !!) They are smiling, because someone, many of you, cared. People have not, and will not, forget these children who are fighting so hard to live or died too soon. That's the blessing, that is MY gift, your gift......which is far greater than ANY material possession on this earth. This is what is so incredibly unbelievable my friends. Each of you that helped in October were a part of making this dream for Grant and I, for these families, a reality. These families have a little reason to smile along with all the pain and anguish they are enduring. Every penny raised this fall at the golf tournament is being put to good use. I cannot thank you enough for this and I know our sponsored families thank you as well from the bottom of their hearts.
Well, I have rambled on and on, once again. Thanks for listening, thanks for caring.
HAPPY, HEALTHY, New Year to you all-
Alison
Saturday, December 27, 2003 10:46 PM CST
Dear friends-
I know that I have not updated in over a week. I have not had the energy, or the inclination to write. Call it a pity party if you must........say I should be grateful for three other, healthy, beautiful children, but part of me, part of my soul, died on February 16th, 2003. I don't know if that person will ever be back or I will learn to live with the "new me." My sister was here for a few days over the Christmas holiday which helped, but they had to leave on Christmas Eve morning. Don't worry, I was a big girl. I bit my lip and put on my "show face" for the sake of my children. I would never ruin their Christmas. But I tell you this, it was no easy task. Pretending to be something you are not requires skill, and I suppose I have mastered that skill over the years. I wish I could help it, I wish I could control it, but this thing called grief is overwhelming at times, and bearable at others. It just depends on the time, on the circumstances. I want to be strong, Alexandria to be proud of me and how I have handled her death, that I have tried to help others in similiar predicaments but it is a huge request. I know I am not the first to lose a child, unfortunately, their are WAY TOO many of us. Don't even get me started about the fictious statistics they report of 75% cure rate for childhood cancer........let me tell you..........I don't believe that bullshit for ONE second, it just cannot be true, I just don't see it..........the stats that is. I have poured over countless studies, researched it for years, and just in my personal contact alone, I CANNOT believe these stats are true. I am quite confident they are saving more lives than they did in 1965 due to leukemia, but then again, let's HOPE they are doing better overall medically speaking, with new and advanced technology and knowledge.
It is not statistics that I really care about. It is people. It is families. Families that have been ravaged and broken due to an ugly thing called cancer. I took my dad away at the age of 52, on December 23rd, 1992, just six months after he walked me down the aisle to marry Grant. This disease took his life 3 short months after diagnosis at Barnes Hospital. I remember walking over the bridge that leads to the parking lot from the hospital. I remember, walking and then hardly able to move or talk as I wept uncontrollably at the news that my dad and his wife, Pat, had just delivered. It crushed me, it broke my heart. I had just been reunited with him. After many, many, long years, I had my daddy back, and now this disease was going to take him away. I remember his words, "Alison they found a little cancer." Well, we all know it takes "just a little cancer" to take your life. We buried him on Christmas Eve. I vividly remember the Christmas Eve service at our church that night. I felt lost. I felt alone. Surrounded by family, yet I felt alone. That is how I feel now. Surrounded by family, three children and a husband who love me, God only knows why, and I am still, at times, alone. I am sure that we all feel this way at some time or another. I am no different. It is at these times I just must pray a little harder. Speaking of Pat, my step-mom, or whatever she is technically called, I recently received a package from her. I cannot describe how I felt about this particular package that arrived on my doorstep. It contained pictures. Many, many pictures, of me as a young girl with her daddy. They are the only pictures of my childhood that remain, for reasons I won't get into now. My gratitude for her sending them is unending and I, as well as my children, will treasure the contents of that package until the end of my days. Pictures of me, as a young girl, of probably between age 5 or 6, riding on a horse. A horse named "Coffee", if I remember correctly. What awesome memories. What a vivid recollection of a family who loved me dearly. I was "one of Johnny's girls." The youngest of three, the baby. There were also pictures of Pat and Johnny's children, Courtney and John. I cannot believe how they have grown into adults. (I feel so old !!) There were cards Michelle, Stephanie and I sent my daddy on Father's Day. Letters written from my sister's to my dad. What a keepsake. A package of memories. A life encapsulated in a package. Oh, how I am thankful for this.
I sit here tonight, typing this entry by candlelight, remembering and trying hard to focus on the fact that my precious daughter is with him now........forever and always. He is taking care of her in heaven, I just know it. Pat also sent me a rosary that was my father's. I hope I don't offend her when I share the story of its existence. She writes, "Alison, let me tell you a little history about the rosary- Papaw (my dad Johnny's dad) was always going to a Catholic retreat somewhere (praying for all of us, I'm sure) and he brought back a rosary for Johnny many years ago. Johnny always kept it in his desk at work and I know he treasured it. This rosary was actually with your dad in the casket at his funeral, but I could not part with it." A few months ago, I had asked Pat to send me something, anything, that was my dad's to remember him whenever I looked at it. She did send me something so special. I WILL keep it always and pass it along to my children, as a gift from their grandfather, just as she requested. The most amazing thing is that in her letter she stated that Johnny has been telling her to send it to me, as his way of helping me get past this first and most painful Christmas without Alexandria. She said, "I bet they got together and came up with this idea, because I woke up one night and just knew, just felt, this was what he wanted, and it was the most intense feeling of, " I have to get the rosary, put it in a box, mail it to Alison." She explained to me that she has never felt Johnny was talking to her as clearly as he did that night. She got out of bed and found it right then. I wish there was some way to adequately express my gratefulness to her. This gift is far "more precious than silver, more costly than gold." I will treasure this gift forever and always. I am so thankful that Johnny spoke to her, and that I am sure Alexandria did too, a gift for her as well. Life is funny. The people that are brought in and out of our lives. All a plan. An intricate plan. Everything and everyone that we meet, become acquainted with, love, pass briefly, or get to know over a lifetime.......it is God's plan. A plan for you, and a plan for me. Absolutely amazing how He works.
Sometimes I wish I could go back. Back in time. Not only to bring back a little nine year old girl, but to go back to the days when I was blind and ignorant to the many families that need us, need "Alexandria's Angels." If I could share with you, make you feel that glorious, awesome and amazing feeling that
I have felt recently. Yes, along with great sadness, I have felt a tremendous sense that we were doing God's work, helping others. To know that you have given to a family, not only material things, but a smile to a child who is dealing with cancer.......well, that would be enough for me right there. Call it a day, call it a lifetime.........it really means that much.
Thanks to my friends and neighbors who never stop calling, never stop asking if I am okay, if I need to talk, or be left alone. Thanks be to God for my children who cared not how many gifts were under the tree for them, but who would help the kids without a family, or who were not so fortunate. God Bless those of you who continue to care after 10 long months. God Bless the ones who have moved on without us.
Heavenly Father, I know I cannot begin to understand your plan, your purpose in doing all that You do. I just have to know and understand that You know FAR more than I.
Grant and I spent much of the holiday week going through the basement "junk." We put Alexandria's belongings, in those bright pink boxes, on shelves in the basement. It was difficult at best. No words to describe it.
Well, it is 10:15 on a Saturday night. There is a little 4 year old girl named Addison, the spitting image of her big sister, that is playing with "Polly Pockets." She has a vivid imagination, she can play by herself for hours on end.......just like her mommy used to do. She will soon be sitting next to me, begging me to snuggle up with her, to tuck her into bed. She will "twiddle my hair" until she falls fast asleep into the arms of Morpheous." And for this moment, this brief but precious time, life is good, life goes on. I am thankful, I am blessed beyond words.
Thanks be to God-
Alison
Wednesday, December 17, 2003 8:56 PM CST
I know everyone has moved past the shocked phase and just don't know what to think at this point about all the recent updates. Let's just say "it is free therapy." The reason for writing tonight is not to give you your daily dose of depression, but rather to ask, once again, for prayers for another family. I just received an e-mail from another Caring Bridge mom and they just received devastating news regarding their unborn child. They too, have lost another child this year to leukemia. I cannot even imagine the pain, the suffering, the loss, the hopelessness this mom is feeling. My heart is aching for them. I know they would appreciate you praying on their behalf for peace, comfort and mercy from our Heavenly Father Above. This is the only thing that will get them through the holidays, which were going to be rough enough.
Thank you so much,
God Bless-
Alison
Wednesday, December 17, 2003 0:15 AM CST
It is almost 12:00 a.m. and Grant and I just spent the last two hours discussing the last 3+ years of our lives. We talked about every little detail we could remember about that last weekend we had with our Sissy girl. We laughed hard, we cried hard. Of course we were very hard on ourselves too......regretting this, regretting that...........wishing that we would have said this........wishing we would have done that ........The fact is there is a hole in our hearts, a void. A void that can not and will not ever be filled. We talked about the fact that it has been ten long months since we saw her face......ten long months since we heard her voice.......ten long months since we said goodbye until we meet again in heaven. We remember her saying "I love you guys, both of you"........Lord how we treasure those words. We discussed how she asked for water that Friday night after she had had brain involvement.......she said "wa wa." "Mama wa wa." For as long as their is breath in this body I will remember how we had to leave our daughter lying in a hospital bed. Lifeless. She lay there and we had to pack up our belongings, say goodbye, turn and walk away. We closed the door, it was a sliding door. I was closing that door and leaving a part of my life behind. She was in the arms of an angel.....flying away. The walk through the hospital, the walk to the car on that snowy night........it seemed endless. I wanted to scream out to everyone, "I just lost my baby, she's gone." I felt numb. I kept having to think, "is this real, is she really gone, will I have to wait until I get to heaven to see her again?" The drive home in the snow was endless. We got home, the kids were at neighbors houses. Grant and I slept, holding hands, crying ourselves to sleep.........wishing we could wake eachother up from the nightmare. But we couldn't, and we didn't, and we are still living it today, 10 months later.
As Christmas approaches, I can honestly say that I have so many mixed emotions that I don't even know how to make sense of them all. I know we buried my dad on Christmas Eve. I know we tried to turn that day into a happy day, not sad day, and each of my children were baptized on that wonderful, blessed night in the year's to follow. Then of course, the last 3 Christmas' have had there fair share of horror, dissappoint, miracles and loss of hope. Grant and I prayed tonight after talking. We asked Alexandria to watch over us and the other kids, to be with us over the holidays. We prayed that we would make it through and be strong for the other children who so desperately want and deserve a Happy and Merry Christmas.
We will make it, we always have. We have faith and that is all we need forever and always..........thanks be to God........Amen.
alison
Monday, December 15, 2003 8:28 PM CST
I know, I know absolutely SHOCKING that I am updating twice.....in one day !!!!
I did not have time to write this earlier but wanted to get it written down before I forgot any details. Last night, I decided not to take the Ambien because I have been having some symptoms that correlated with the time I began taking it. Needless to say, I have not slept in anything but two hour intervals since. Last night, or early morning, rather, after being awake from 1-4:30 a.m., I retired back to bed and then the most amazing thing happened. I had a dream. I had a dream about Alexandria. I know I dreamt of her because I had been thinking about her all night at the Christmas Concert and I also began today's entry last night as well. She has obviously been on my mind a great deal lately. I asked her to come to me in my dreams, just as I always do before my eyes close and I drift into a short-term sleep. In this particular dream, I was sitting on the edge of the bed and she was in the bed. Grant was across the room and I kept saying, "she's here Grant, she's back here with us." Look at her hair. It wasn't the long, flowing auburn hair that she used to have before leukemia, it was short, short hair that I loved equally well. I kept stroking my face against her head to feel the softness of it. For those cancer-kid parents out there, you know what I am talking about. When their hair falls out, then comes back in, it is as soft as rabbit's fur. I always loved to rub that precious little head, to the point she would get annoyed. In my way too short dream, she did not speak. She only cuddled up next to me so I could hold her more tightly and continue to stroke that beautiful, soft, new hair. I felt such peace. This is what I pray for every night, and this was one of those nights that I was blessed beyond belief. As I write this now, the tears are flowing freely. But I must say, this morning when I awoke, I was at such peace. I felt like I had really been in her prescence. My face felt as though it had been touching hers. Only for a little while did she visit, yet, better than not at all. I kept thinking to myself, I have to remember the details. Could I remember the expression on her face......"concentrate and remember", I told myself. Her face was that of complete peace.......I just did not want the feeling to ever end and words alone could never do this justice of explaining my feelings adequately. I am sure that is what it will be like when I get to heaven..........total and complete peace. But until then, I will just keep praying that she comes to me in my dreams.........forever and always, for this to me is a source of great comfort.
Forever Mommy to Alexandria Nicole Haddock
The new picture on the Home Page was before she was diagnosed and she took her daddy to the "Girl Scout Father/Daughter Dance." She begged me to wear some lipstick to which I replied, "No way" you are way too young for that." She kept begging and I obviously relented......she could just about always convince me. Unfortunately, the only lipstick she had was from her dance recital and they obviously want it to be bright so it shows up on stage. Those are some really pink lips, huh? She was so excited !!!
Monday, December 15, 2003 10:42 AM CST
Hello to everyone-
Let me first begin by saying "thank you" for praying for Baby Brooke. She has improved each day since I last wrote. PTL !!!!!
This past week has been somewhat difficult but we have all "hung in there." I am sure with the holidays quickly approaching it was bound to happen that I would be a little down, and I was prepared for that. There have been moments where I wanted to burst into tears........for instance, when I hear the song "I'll Have a Blue Christmas Without You." This is so true. There have been times where I am jealous of the animals who get to hibernate for the winter........that sounds SO good to me !!!!!!!! I could come out of my nice warm cave, in let's say, March or April? Doesn't that sound wonderful? Addison and I went to buy poinsetta's and snowmen decorations for Alexandria's grave instead of buying presents to put under the Christmas tree for her, ugh !!!! This will be the first Christmas without her in ten years. Addison was walking through Micheals Crafts store saying "Oh Mommy, Alexandria would LOVE this on her grave." I know we were receiving many stares when she spoke of her sister's grave and I am sure that it caused several to stop and think. Hopefully everyone WILL stop and think this season. It seems we all get caught up in the hustle and bustle of celebrating the season, that we forget who/why we are even celebrating in the first place. Don't forget that Jesus is the reason for the season. I have decided .....and informed my children as well, that this year I wrote to Santa and told him that they needed no more than three gifts a piece. We talked about baby Jesus, and how the Wise Men only brought three gifts to Him. Surprisingly, they were okay with that. Hayden said, "Your right mommy." "Some kids don't get much for Christmas and I don't want to be selfish, I'll write Santa and tell him to give kids who don't have as much as me even more and me less." Now, there is one of those moments that you are beaming with motherly pride.....a child with compassion who wants to share with other kids who are less fortunate (and he is actually mine). Every once and awhile they catch you off guard, huh? Actually, they are all fairly compassionate and caring kids through their experiences with a sick sister. Another blessing Alexandria bestowed upon us. There are moments when I miss her terribly and wish she would be here to celebrate Christmas with us, and then I realize how AMAZING this first Christmas in heaven will be for her. Can you even imagine how awesome? Thank you to whoever left "My First Christmas in Heaven" poem on the guestbook. I have always loved that poem.
Tonight our church had a Christmas concert and the kids were singing in the choir. I came armed.....I came prepared.......a handful of Kleenex ready for the tears. I made it through the kids singing, they returned to sit with us, and I even made it through "Silent Night" no tears in sight. Before it even began, several of my friends came up to me and asked if I had Kleenex.........they know me too well. I must confess that I was not sad during the concert I was WAY too distracted by three little boys misbehaving and being silly to be sad (my two and their friend). I know it is alot to ask for them to be still for an hour and listen quietly to beautiful music, and boys will be boys.......but I was a little frustrated with them. Of course Addison had to go "potty" with only two songs left to go. I cannot believe it, I DID IT, I was so proud, no tears !!! I took her to the restroom and left Grant with the three boys to fend for himself. Upon returning, I was treated by the most awesome sounds of our church chancel choir from the foyer of the church where there are speakers. They sang Gloria including movement one, two and three. The meaning of this hymn of praise adresses itself to each Person of the Holy Trinity: God the Father, God the Son, and Holy Spririt. The English translation is :
Glory to God in the highest
And on earth peace to all those of good will.
We praise thee. We bless thee. We worship thee. We glorify thee.
Lord God, Heavenly King, God and Father Almighty.
Lord Jesus, Christ, the only begotten Son.
Lord God, Lamb of God, Son of the Father.
Thou who takest away the sins of the world, have mercy upon us.
Thou who takest away the sins of the world, receive our prayer.
Thou who sittest at the right hand of the Father, have mercy upon us.
For thou alone are holy. Thou alone art the Lord.
Thou alone are the most high, Jesus Christ.
With the Holy Spirit
In the glory of God the Father. Amen.
It was beautiful and I am so thankful for the very talented choir directors, and all who lifted their voices to the heavens.
I closed my eyes tightly and envisioned Alexandria and a choir of new young angels singing for Jesus.
What must her first Christmas in heaven be like? I can only imagine. The song they sang was incredibly moving. The angelic voices of Cynthia, Kellie, Melody and all the choir members was absolutely breathtaking. As long as I closed my eyes, I really felt as if I was in heaven, and this is what it would be like, musically speaking. Okay, so only a few tears slipped out then, but I was still proud of myself nonetheless. Alexandria LOVED to sing and I can just imagine her singing her little heart out for all to hear at Jesus' birthday party this year in heaven.
Of course, my mind does drift off to what we were doing last year at this time. I do dread December 16th, the ten month anniversary of her going home. December 19th.........relapse post BMT day as well. I can still remember the words and how Grant told me. Feeling a little whoosy..........not going there. They are haunting memories and were only the beginning of the end of the nightmare that would unfold until this very day.
I have met another family here in O'Fallon who lost a child, (not to leukemia) but amazingly was treated by our same doctor. His name is Tyler and he was 11 when he went home 3 months ago. The family knew from his birth that he had this very rare, incurable disease. However, even knowing in their hearts that their child would succumbb to the disease, nothing could have prepared them for an untimely death in Texas while visiting grandparents. The doctors had told him that he would not live past the age of three. Thankfully, he proved them all wrong. His family was blessed with 8 more years with him. I must also include, as to not cause any panic among fellow O' Fallon folk, that they had just moved here from Southeast Missouri shortly before this happened. Therefore, there is no correlation, only a coincidence that they lived here when he died. I know I speak for many when I say we are all getting a little concerned. Not just in our immediate area, but everywhere, there is a significant rise in the cases of childhood cancer. Hopefully, they will do more testing to find out the cause so we can all avoid it. Until then, I must rely on faith and hope that lightening doesn't "strike twice", if you will. I don't think I am in any way, shape or form, excluded from trials and tribulations because I have somehow met my "quota." I know God uses us in many ways to get His point across and draw us and others closer to Him. I just want a little reprieve before the next test I suppose. Please keep this family in your prayers as they are struggling a great deal emotionally and financially.
I just got back the pictures that I was going to send out for Christmas. Something/someone, was obviously missing in the picture and that was a painstaking reality. I am not sure if I will send them out or not, haven't decided.
I must also confess that when I check the website several times a day, I am continually perplexed and amazed that people still come here. The count goes up several hundred a day. For the life of me I cannot figure out why. I don't mean that in a bad way, and believe me, I am not complaining and unbelievably grateful. It just boggles the mind that so many people still care and are concerned with what is happening to our family so long after Alexandria's death. I know this is not the case with everyone. I do hear from other caringbridge families that everyone else has moved on and gotten back to their lives. Unfortunately for a grieving parent, this takes a lifetime of work and prayer. Thank you for continuing to come here, for caring and for showing your support to this family. It means so much.
Please continue to pray for all the caring bridge families that are missing a child in their family portrait this year. It will be difficult for all of us I know, but with prayer, and the grace of God, we will all get through it somehow. Last year at Christmas, I purchased two lighted angels for the front yard. This year they are adorned with purple lights on their wings. I could not find pink and know this would be Alexandria's second choice. They are beautiful and give me a sense of comfort.
I wish I could update about a miracle for Kenny Shiels, the seven year old that Alexandria's Angel's sponsored for the golf tournament fundraiser. Upon completing an MRI last week, it was determined that they must do surgery.......quickly. They were originally going to wait and do it after their Dream Factory sponsored "Wish Trip." That must be postponed indefinitely and he will probably have surgery sometime before Christmas. I know this news is so completely devastating to the Shiels family and friends. Please include them in your prayers that by some act of God, a miracle, his brain tumor shrinks.
I will leave you for now but will be updating again soon.......good therapy !!!
In Christ-
Alison
Tuesday, December 9, 2003 8:35 PM CST
Please say prayers for our friends' daughter, Baby Brooke. She is only a few weeks old, 6+ lbs., and in the hospital (PICU) with RSV. Also, I would invite you to visit another caringbridge site. This mom to a cancer kid updates on many kids and how they are faring. Unfortunately, she recently had to report ALOT of relapses, and ALOT of deaths from childhood cancers. This is just getting ridiculous. It is so sad to read of these other families who will now have to walk the same path as we are. I don't understand it. There HAS GOT to be something going on in our environment that is causing this to happen. I just wish I knew what so I could protect my other children. I am not trying to depress everyone here, just trying to build awareness.
Things are kinda rough with the holidays approaching. I miss Alexandria and I keep thinking about last year at this time.........our last week of complete happiness for a LONG time. I feel for all the families who have lost a child this year.
www.caringbridge.org/page/gooch
alison
Wednesday, December 3, 2003 0:41 AM CST
Hello to all-
I hope that everyone had a Happy Thanksgiving. We certainly enjoyed having my sister and her family here for the holidays. They came in last Tuesday evening and left Sunday afternoon. We were all sad to see them go.
Much has happened in the last ten days so I will try to recap and hit the highlights, although brevity was never my strong point. Sunday, November 23rd, Grant, the kids and I went to the cemetary to put a concrete bench next to Sissy's grave. It seems when I am there, I am there for 30 minutes or so, and I get tired of standing and praying. I felt like a bench would be beneficial. The kids flew a kite while we dug in the ground.
The next afternoon, I had a check up at the doctor's office. Grant decided to go along for moral support. I just was not sure how I would do emotionally. I was thankful he went. Upon arriving at St. Luke's Hospital, the same place I had all my ultrasounds with Alexandria, the same place she and the other kids were born, the very place she was diagnosed on November 7th, 2000, I felt a sense of urgency. A sense of urgency to throw up. As we drove up, I had Grant drop me off at the door. I was very anxious and just wanted to get in there and back out. Grant caught up to me and we waited for the elevator, which seemed to take forever. I was really feeling sick by the time we walked into the doctor's office. I had never been to this internal medicine doctor before so there was no comfort level whatsoever. I told Grant to pick up the "obligatory, "sign your life away paperwork" while I excused myself to the restroom. I tried to calm myself down for fear of having an anxiety attack right then and there. Although the thought did cross my mind that if it was going to happen, this would be an ideal place. I kept thinking of the day Alexandria was diagnosed. It was a day like any other, just like today. We were blind-sided. Hit by a speeding train....that kept running over us, backing up, and running over us again for 3 years. It is all just a little crazy when you think about it. How one number, one test, negative or postive, too much or too little, good cells and bad cells can change your life so quickly, so profoundly. I managed to muster up a tiny ounce of calmness, take a few deep breathes, prayed to God, prayed to Alexandria and pulled myself together. It was upon my return to the office that I should have been more prepared for. I sat down to fill out the stack of papers. I was not ready for this line of questioning......not at all. How could anyone have ever prepared me to answer questions such as "how many children do have? their birthdates? any deceased children? dates of death? cause of death? parents still living? dates of deaths? etc. UGH !!!!!!! The tears had little time to well up in my eyes, they just flowed freely. Grant looked at me with a look of "What, is the matter?" What is it?" I could merely point to the piece of paper and it was not long before he shared the same sentiments as I did. Now weren't we just a sight to behold. Two grown adults crying like a bunch of babies in the doctors' office............with no bad news nonetheless. I am sure people thought we were crazy. Obviously, that has never stopped us from showing our emotions before. What seemed like an eternity, it was finally my turn and off I went. Now there is not much that could top this depression, but, by having to get on the scale to be weighed.........well, that was freakin' icing on the cake. "You cannot be serious", I asked the nurse knowing full well she was. I wanted to say, "no, you don't understand, my daughter, cancer, steroids, she gained weight, and I gained right along with her. I knew she would be sympathetic to my plight, however, not enough to get me off the "weight hook." Okay, okay, whatever.........double UGH !!!!!!!! After that debacle, I resigned myself to the fact the I was having a "no good, very bad, *#@#^ day !!!!!!! By the time the lovely, sympathetic, "grandfatherly figure" of a doctor got to me.........well......I was not doing so good. I got through all my "issues" with only a few tears. I felt sorry for this poor man. He was probably thinking, wow, 34 years old and she is falling apart at the seams." That is pretty much how I feel sometimes too. It did not take too long before I decided this guy was alright. He had good bedside manner....hard to find that these days in a doc, and the news gets better. HE PRESCRIBED AMBIEN FOR ME !!!!!!!!! I slept last Monday night for the first time in about 3 years, (or 10 but who is counting at this point?) I had forgotten what a full night's sleep felt like. It feels really good. I decided to try it again the next night.....and again. It's a beautiful thing. They say it is addictive,well, guess what, there are alot worse things. My blood work results came in the mail a few days ago. It was difficult to see a CBC (complete blood count). I had grown so accustomed to seeing them daily with Alexandria for so long. I have not seen one since February 16th. Again I felt queasy as I read the numbers. Praise the Lord, everything checked out okay.
Thanksgiving was not too terribly bad. It helped to have my sister Stephanie and her family here. Thanksgiving day dinner, we elected not to do our traditional "what are you thankful for prayers." Just could not do it. Too many memories of last year and how happy we were to be home from BMT, so many hopes for the her cure, her life, her future. Ironically, I sat down at the dining room table, looked up, and I could see Alexandria's portrait perfectly in the reflection of the mirror on the wall. Comforting and difficult all at the same time. Just her way of reminding me she was right there, if not in body, than in spirit. We all went to church together on Sunday. We of course went to Alexandria's grave. Sidonia, my niece, had not been there since the funeral. I could hardly bear to look at her. She and Alexandria were so close, just like sister's. I could see the tears in her eyes. She, as well as my kids, have always had such a a positive outlook despite the sadness and missing her. She calls me on the phone to tell me of a beautiful sunset that Alexandria sent just for her. She speaks of her in heaven and how wonderful it must be. Sheldon, my six year old nephew, had never been to the cemetary. He had drawn some pictures in church and asked if he could give them to her so we put them in the perfect spot on her grave. As we were leaving, he turned and said, "I need to do one more thing." He blew a kiss her way. Well, here is a shocker, I cried. I had made it through yet another "Shout to the Lord", and "Thy Word" (both songs I sang to Alexandria as she left this world and entered heaven) in church without crying, yet with this single, precious, and innocent act, the tears could not be contained. All in all, Thanksgiving was good. I know I have SO much to be thankful for, I know I am so incredibly blessed. I know that Jesus died for all my sins. I know I must spend my life here on this earth as a preparation for my eternal life in heaven. That life will last much longer than this one. And just as Pastor Lew basically said on Sunday, we need to "get our heads and our hearts right." Luke 1:37 says that, "With God, Nothing is Impossible." Truer words were never spoken.
On this first Sunday in Advent we recited a "Prayer of Confession." How hard it is to wait for you, O God. We long for the stillness of a holy night; we eagerly want to feel again the radiant joy of your birth. And, we want peace on earth and peace in our families to last for longer than a day. We look forward to your coming, yet dread it at the same time, for to include You means changing some of our ways. Forgive us for the resentments we have held onto, the possessions we idolize, the folks we have ignored, and the sins we have tried to keep hidden. Tender God, may your coming through Jesus bring a reformed life and lasting joy. Teach us to wait hopefully and expectantly. Amen. That sums a great deal for me.
Just when you think you have got it rough, you meet someone that really puts it back into perspective. Someone makes you stop and think..... things are really not so bad. A few days ago I spoke on the phone with a 25 year old woman. She is mom to 3 year old Mackenzie. Unfortunately, this family lives here in O'Fallon and, yes, another childhood cancer statistic. She was diagnosed September 30th with a very rare form of bone cancer that is in her chin. They cannot do radiation because of the damage it would do to her face. She started chemotherapy immediately at Cardinal Glennon and is in the care of Dr. Kelley. I wish this is where the story ended, for this in itself would be devastating enough. Sadly, Pat, Mackenzie's 28 year old father, was diagnosed 2 weeks ago with lung cancer. The doctors treating him believe that despite the fact that he has never smoked, he has had it for ten years. This means that his chances for survival due to late detection are probably not so good. This family is in desperate need of our help, support, and most importantly our prayers. If anyone would like to represent the "Alexandria's Angels Foundation" and lend a helping hand, or a meal to this family, we would be so grateful. Please contact me via e-mail at alisonhaddock@charter.net for more information. As always, your support would be greatly appreciated.
It is 12:20 a.m. now, and way past time for the Ambien, so I will leave you now. So much for the "quick recap." If you are reading this website update, let us know you were here by signing the guestbook if only to say "hello."
Thanks to Lynn from up North for the beautiful pink angel. I so enjoyed meeting you and glad you had a safe trip home.
God Bless you All-
Alison
Thursday, November 20, 2003 10:31 PM CST
Hello to everyone-
I am quite confident that you all are shocked to find me updating again already. I just felt compelled to fill you in on some things I neglected to mention yesterday. First of all, the stomach flu has slowly but surely made its way through the Haddock Homestead. YUCK !!!!!!! I awoke this morning to find that even Abby, the dog, had stomach issues. Yeah, I know, NOT how you want to start your day......PPP (puke and poop pick-up, sorry for being so graphic). Especially after being in bed for 2 days myself. Funny thing about being sick.......you have to lay there.....and be still.......and think. This is not my favorite activity right now. I try to stay extremely busy on purpose. It is my way of surviving. I have always been a busy person. I don't like to slow down too much. Even on vacations, I am the one who has planned out the itinerary and cannot just sit there on the beach all day. I have gotten better over the years, but I still have my issues. As I lay in my bed feeling absolutely awful, throwing up and aching head to toe, I began to think of Alexandria. I thought of how many times over the last 2 and a half years she had felt like I did........times a million. I absolutely cannot fathom how she felt so horrible on so many occasions, yet, most of the time, a smile was on her face and she kept in good spirits. I did not feel like being nice this week. I felt bad. I had sheets, comforters, and a stack of clothes a mile high to wash from kids vomiting uncontrollably for days. You know how it is. No one escapes. Everyone is a victim when the family is hit by the dreaded stomach bug. No sooner do you begin to catch up on laundry from the first child, there is another fallen soldier behind him. As I thought about all she went through physically, for so long, I am even more amazed by her inner strength. Think about it, when you have your health, you gotta a WHOLE lot. I can honestly sit here and say that yes, I felt horrible, but I also knew that it would pass quickly. My pain pales in comparison to hers. Alexandria knew how bad she felt when she got certain chemo's. Yet, the very next week, she would have to go back in for yet another chemo. Her memory was good. She was sharp as a tack. She did not have that memory like some of us mothers have ........you know, "selective memory", the one that mysteriously lets you forget just HOW much pain you were in while you were in labor. Otherwise, we would probably all have just one child. She knew she was going to feel really bad again, yet she did not complain, did not put up a fight, did not refuse. It is only when I feel physically ill myself that I can truly appreciate even the slightest, tiniest bit of her pain. And even then, it is only a short term thing....acute, an ending in sight. I can tell you with all the sincerity in my heart that I truly do not know how in the world these kids do it. The things they have to endure. I guess my point in all this is, that after being sick I am truly in awe of her. This is not a new feeling obviously, just magnified once again.
As I stood at her grave on this absolutely GLORIOUS day in Saint Louis; sunny, 74 degrees, I could see for miles and miles. Our church sits on top of a hill. It is sometimes windy up there, especially in the back where the cemetary is. To my left, far in the distance, I could see the flags waving and I thought about the men and women in our military fighting for freedom. To my immediate right I could see our church, the steeple, against a beautiful blue sky. The church my daughter's funeral was at. The church where people prayed and prayed for her that God's will would be that she live, the church that my family and I have grown to love. So many thoughts and memories were flooding my mind. The clouds in the sky were sent from Alexandria for me to see. They were wispy, "opaquish" clouds and looked like feathers. Yes, feathers on pink-tipped angel wings....awesome. It was about 4:30 p.m. when I got there and I knew the sun would set shortly. I took several deep breaths. I promised myself not to cry. I sat and talked to Alexandria. I talked to God. With the wind in my face, my eyes tightly closed, the warmth of the sun........I could feel her. I had such a peaceful, calming feeling rush over me. It was amazing. I thanked Alexandria and God for that moment. What a gift. It was short-lived but not under-appreciated. This feeling came to an abrupt halt when the man whose house backs to the cemetary elected to start his leaf blower at this particular time. YOU HAVE GOT TO BE KIDDING ME !!!!!!!!!! I know my mouth dropped open at his action. My mind quickly went to, "okay, maybe this is gonna be quick?" Nope, he sucked up every leaf in the back yard and then some. I don't like feeling like I am sitting in someone's back yard when I am visiting my daughter. What is more upsetting is a few weeks ago, on a Wednesday night, we were entering the church via the back/cemetary, just as we do every Wednesday night for kids choir, dinner and bible study. I looked over to see some kids playing "ghost in the graveyard" with flashlights around Sissy's grave. Again, speechless. On the one hand, I know they are just kids. I know many people played this as a child. I guess it just struck a nerve and I found it unsettling when it was my daughter's grave they were around. I wish I could politely discuss the issues with the children and make sure they have been made aware of "cemetary etiquette", or common decency at least. I do feel it is inappropriate to "relieve yourself" in a cemetary. Yes, I have seen that one too. When Grant and I were standing there with Pastor Lew one day, this event occured. Lovely, huh. The only thing that is remotely okay about this is I know Alexandria was looking down saying "uh-oh, my mom sure is gonna be ticked about that one." I bet she anxiously sat and awaited my response, saying to all her angel friends, "come on guys you gotta see this......it is gonna be good." She probably thought I would run after them screaming. I am sure she was laughing hysterically at their actions. And there it is again, that slap in the face. That "don't sweat the small stuff" moment. Alexandria is notorious for sending those my way, and I am thankful. Keeps my perspective on life on course. Kids will be kids but I am anxiuosly awaiting the installation of a 6 foot fence around the cemetary. I guess the saying is true, "big fences make good neighbors." Unfortunately it will provide little sight or noise abatement, but 6 feet of wrought iron isn't easy to climb.
One of the things I wanted to share was a series they are doing on the Today Show. This week they have been spotlighting "Who We Admire". I could never do the story justice so if you did not get to see it on t.v., please go to www.today.msnbc.com. These stories of hospice workers, humanitarian workers, and Angel Flight pilots will inspire you. They have the actual videos from the show, it is not just written. If you want to be touched to the core, moved beyond belief then please go to their website and check it out. You will be so glad you did. It just reinforces my belief that it has to start somewhere. If we all sat around waiting for someone else to do it, if we all worried that our contributions, no matter how small, would not make a difference, then what a sad place this would be. Through these stories you will see that there are still good people in the world doing good deeds. It is easy to look around us and see so much that is destructive, or negative. But there is good as well. God is good, people are good. These stories demonstrate that beautifully.
God Bless and Good Night-
Alison
Wednesday, November 19, 2003 1:45 PM CST
A few weeks ago, I had contemplated ending this journal. I really feel like sometimes I say the same things over and over. I don't want to sound like a broken record. I do want to give all the glory in my life to God, for I have been bestowed many blessings. I want to let people know how we are doing, I just don't want people to come here and know exactly what I am going to say because I have said it a million times before. I know that sometimes I repeat myself and it is because that is exactly how I am feeling at that time or on that particular day. It just does not make a great deal of sense to me to use this website to re-hash, or dwell on the negative. About the same time I was mulling this decision over, I got an e-mail from Grant, my wonderful and caring husband.
He wrote, "Hey Guppy" (yes, he calls me guppy (you get it.............having to do with us having 4 babies in 6 years !!! ) and about one hundred other names that I don't have time to share but most of which are nice) He wrote, "I just read the upate on Sissy's website. It is great! I am very proud of you for keeping such a wonderful tribute to our daughter alive and well. I know in the years to come, to our childern, and to our children's children, Sissy's story will be more than some old story that is retold a million times with a million additions and deletions until it bears little resemblance to what really happened to our little family. Thank you for being the steward of her story.
I love you-
Grant
Well, after I dried my tears from the kind letter he wrote me, I realized that I had not thought of it like that. I never did even think about how my grandchildren would read about this to learn of "Aunt Alexandria." It never occured to me that Hunter, Hayden and Addison may someday like to share this story with their spouses and children about the sister they loved so much. I received several e-mails in the days following. These were powerful and extremely meaningful letters to me stating how much Alexandria, her battle, her life, her faith, has touched their lives. I must say that I do receive these e-mails quite frequently. Each and every one has moved me in an enormous way. In my heart I know that she has changed lives, but how wonderful for you all to share with me so that I may see how Alexandria has had a profound effect on so many of you. Many write how they treat their children differently now, cherish each day, some say their faith in God has grown to new levels, their church attendance increased, they have become a better mother, father, wife, husband, child of God........how you now regularly donate blood and platelets, have gotten on the Bone Marrow Transplant list, have changed your career, are running in marathons, have a new appreciation for life and for those less fortunate, several have donated your hair, your time, your talents, and given money to help other families affected by childhood cancer. This is what is so amazing to me. It is crystal clear to me, that although I miss my Alexandria more than any words could adequately describe, I can see a part of God's great plan right before my very eyes. I don't need perspective from a seat in heaven to realize at least part of God's intentions with her death. He chose her. He chose me.........our family. By helping others through their ordeals in life, we certainly cannot bring her back, however we can make a difference....a positive difference. What a beautiful legacy she left behind. A legacy to be continued by her family in her memeory and honor. We have all learned so much, grown so much. My life is so much better, so much richer and fuller because of Alexandria Nicole Haddock. Would Alexandria have made such a difference......such a massive and life-changing impact on so many if she were still here today? I don't have the answer for sure, but I tend to think not. If she would have lived her lessons would have been different. I am sure they would have meaning and impact, but probably not to this extent..........that is why He is the big guy, and makes all the decisions. His reasoning is without error despite what most of us would sometimes believe.
So, again, I thank you all for coming here. Thank you for sharing such intimate details about your life, and how you have been touched by Alexandria. It is a great source of comfort on days the pain is bad, it is sense of pride on days when things are going well. I am not sure how long I will keep up the journal, but I want you all to know that you each have played an intricate role in my healing process. Your words of encouragment and hope throughout the last three years since diagnosis have been a "God-send." I will treasure the words and actions from my sister's Stephanie and Michelle, those whom I have been friends with all of my life, those written from perfect strangers, and those we have met along the way and grown to love. Each one of you are special to me. I have been given such wonderful, awesome and uncomparable gifts in these three years. I appreciate each of them and each of you. So when you think to yourself, "I cannot possibly make a difference." What could I possibly say or do to help? Please know this. Every prayer spoken, every note written, every meal prepared, every dollar donated, every lock of hair given, every mile run, every snowflake shoveled, every leaf bagged, every moment planning for a fundraiser .........each and every thing was noticed and appreciated greatly. When you are searching for clarity in life, proper perspective on the important things, remember Alexandria and what her life stood for. Know that by coming here, faithfully supporting our family throughout this ordeal, you each made a difference, a positive difference to the Haddock family and more importantly, God.
God Bless-
Alison
Tuesday, November 11, 2003 1:04 AM CST
WOW !!!!!!!!!!!!!! AWESOME !!!!!!!!!!!!!!!!!!!! Absolutely UNBELIEVABLE !!!!!!!!!!!!!!!!!!!
WE ARE AT 200,133 hits to the "Alexandria's Angels" website. I am in awe of the fact that so many people come here.....so many people care.......still care.......after nine long months since Alexandria's passing. I miss her more today than yesterday for that is just one more day that I have gone without seeing her beautiful face, hearing her sweet laughter, or that devious smile that says "are you talkin' to me?" Last Wednesday, I made the whirl-wind, split-second decision to go to Dallas for a long weekend since the kids were off school on Thursday and Friday. My sister Michelle and her family moved there this summer. Michelle's husband, Micheal, lost his brother tragically a few weeks ago. I had been wanting to get down there to see them for some time now. Not particularally looking forward to November 7th, (diagnosis day) I thought this would be a good time to head out of town. Grant of course could not go with us, and so I was very concerned about him being alone on that day, and over the entire weekend. I checked on him via telephone regularly. As we left town, minivan loaded to the gills, we were no farther than the intersection of HWY 109 and HWY 44, and a voice from the back seat asked if we were in Texas yet. For those of you not familiar with the area, this is about 25 minutes from my house. "Oh yeah, sure I quickly replied", just 30 minutes down and 11 hours to go." Oh the nerve, huh? I was then told emphatically that "Missouri was a really big state, too big and this was taking too long." UGH !!!!!!!!!!!!!! This is not starting out good at all.
Several miles down the road and an icepack on the lower back for pain later, I realized the last time I traveled 44 west, was when my mom and I took Alexandria to Branson to see the Rockettes. Alexandria and I had gone several years in a row and had asked Nana to come with us this time. It was just the three of us. We had a wonderful time. It would only be two short days later that we would get the news that Alexandria had leukemia. I felt something was so wrong when she could only go for a short period of time without getting tired. I thought it was so strange that she fought to stay awake during the show that day. Little did I know that her poor little body was overpopulated with 1 million white blood cells and her hemoglobin which should be 12+ was only 4. I remember seeing little red spots on her neck and trying to get a closer look she said, "mommy it's nothing, don't look at it." If I only knew. If I only knew at that time that within 48 hours my entire life as I knew it would end. A new chapter in our family's lives was about to begin. I did not like this chapter. In fact I wish I could press delete on the keyboard for this chapter and it would all be gone. Unfortunately, this is real life. There is no "delete" button. Very rarely are there "redo's." One chance, that is usually all we get. I quickly remembered the time preceding that when I was traveling on this same highway. I was taking Alexandria to the Presbyterian Camp called Mound Ridge. It was a "mother/child weekend" and she was 6 years old. It was the neatest thing to camp out, (okay, we slept in cabin) eat smores and sing "Kumbaya" with my little girl and other families who had come to worship and spend quality time with their child. We had the best time. Again, if I only knew. In the back seat the kids were watching "Spirit" the movie and of course, I was moved to tears. It does not take much, but listening to the heartfelt Bryan Adams songs was difficult. I thought about Spirit and how he felt defeated. He was ready to give in. No more strength to fight the fight. No more will to go on. It was a touching moment as I could so relate to this animated creatures emotions. I was thankful my tears could not be seen by the kids. There are days when I feel just that.......lost, defeated, no strength, no will, no desire to move on. But just as Spirit rises above and triumphs in the end, I hope that is what I will continue to do.
On a lighter note, Hunter, who prides himself in reading every billboard from here to Dallas, speaks up from the back again. I heard him ask, "Mommy what is porn?" WHAT IS PORN ?????????????? Did my 8 year old son really say "What is porn?" It was as if someone had knocked the wind right out of me." I could not speak. I had also read the billboard stating "Porn destroys lives." I just blirted out the first thing that came into my head (remembering there was also a 4 year old and a 7 year old in the car too). I stated "I think it is a type of gun Hunter." I am not sure where that came from, but it sounded pretty darn believable at the time.
By the time we got to Rolla Missouri, a mere hour and a half away, my fear was that an E.R. visit was my destiny. My lower back was hurting so bad I thought traction would be in order at this point. Hayden was handing me ice packs that I had put in the cooler. As soon as one got warm, he would pull another one out for the quick switch. Well, after careful consideration, I elected to stick with the plan and proceed to Dallas despite the pain. All I have to say is "WHAT IN THE WORLD DID PARENTS DO BEFORE DVD PLAYERS WERE IN CARS ??????????????/
I am telling you right here and now, I would not be here today, if not for a car DVD player. I would have tossed myself out the minivan window if I did not have that source of entertainment for my kids for 12 long hours.
The drive home today was long and way too thought-provoking. As the kids quietly sat for movie marathon, my mind was again flooded with images of Sissy. It was the train wreck out of control.......wanting to stop the visions and the thoughts but could not. Despite my best efforts I spent the majority of the day going through the last three years in my mind..........over and over images of her in both happy and sad times. I am, however, grateful and thankful for these memories, for that is all I have left, pictures and memories in my mind of a sweet little girl named Alexandria. She changed me. She changed everything from how I looked at a sunset, to how I look at other people that God has created. The depths of appreciation I feel for her life and her lessons are enormous. I am blessed she called ME mom, no one else, just me. We were buddies till the end !!!!!!!!!!!!!!! No one can ever take my memories of her away~
I walked in tonight after the long drive home to see Alexandria's portrait in the foyer. It had been framed. It is absolutely breathtaking and I will post pictures soon. I then noticed soem pictures on the countertop. Grant had said that he found a couple of disposable cameras this weekend in the basement and many of them were pictures of Sissy. They were of Camp Sunshine, hospital pictures from December 2000 with Santa, pictures of Christmas 2001 with the kids at my sister Stephanie's house. The pictures of her and cousin Sidonia were almost too much for me to bear. The absolutely loved eachother like sisters. They were so close. It breaks my heart that Sidonia must miss her so badly too. Sidonia called me the other day to tell me that her fish had died and so now it was with Alexandria in heaven. Amazing these children are. Absolutely amazing.
What is also amazing to me is the overwhelming feelings of gratitude I feel on nights like tonight. When I get home, all I really wanted to do after looking at all those pictures was to crawl in bed, pull the covers up and not come out until tomorrow, or March. I was again so taken back by the heartfelt and kind messages that people posted while I was gone. I want to thank each of you for your entries and I cannot tell you what they mean to me. It made me feel so much better. Knowing that her life made an impact, had such a definitive purpose, and that you all are taking your time to write and tell me about your feelings, well, I am so blessed. It appears that someone is projectile vomiting from the next room and therefore I bid you farewell, my nurse shift just started.
God Bless
Alison
Tuesday, November 4, 2003 11:41 PM CST
Since it has been over a week since I last updated the website, I will try to go back and recap the highlights. Last Sunday, Grant and I were sitting in church and before the service began, I quickly scanned the bulletin to see what songs were going to move me to tears this week. Upon seeing that "Amazing Grace" would be played......on the bagpipes mind you, I quickly made a quick and desperate move to the bathroom for a round of kleenex for Grant and I. I am usually prepared and armed with a hefty supply of tissues in my purse, bu upon the detection of not a single one on that particular day, I knew we were in big trouble. No problem.........I made it out of church, to the restroom and back in a flash. I was quite thankful I did this, for Grant and I shed many tears that morning.
Grant and I have been doing relatively well lately. Several weeks ago we went to Walmart to buy clear tubs/containers to start putting some of Alexandria's things away in. Since the boys moved into her larger room, I had left all of her stuff in the closet. It was obviously getting rather cramped in the closet and we knew that sooner or later this daunting and difficult task would be necessary. We bought tubs that had bright pink lids, easily distinguished from our other storage containers, and of course, pink for Sissy. Those containers sat for well over a week collecting dust as neither Grant or I were brave enough to begin. It just seemed so unnatural, packing things in boxes that your child used to read, play with, or wear. Those things will never serve their purpose again. Grant, who initially said that he could not put her belongings away, was the one who did just that. I came home one day and most of it was done. I know how painful it must have been for him, yet I selfishly am glad that it was not I that had to do that task. It would have been an exercise of pure heartache, tears and depression.
On Friday, October 31st, I kept with my Halloween tradition for "Locks Of Love." They are a company that makes wigs and hairpieces for children with cancer. I donated 12-14 inches on Halloween of 2001 and have been growing my hair out since then. I was able to donate another 12 inches this year. I don't particularly care for my hair to be short.....but then again, it is hair, it grows, so who really cares !!!! It is the least I can do to help a child out who just wants to feel normal by having some hair. These children have enough to deal with and if a wig is something that can make them feel more comfortable, well, so be it. I will be a regular donor. I have to admit that in the last few weeks, I was having rather comical dreams about it. I dreamt that I went to get my hair cut and they said that it had too many split ends and they could not use it. It was definitely timed to get it whacked. Several people we know, adults and children, have also given their hair to "Locks of Love." I cannot tell you how that single act of kindness not only warms my heart, but how happy you are making a child by your self-less gift. It just goes back to the concept that all of us have something to give. Each person has a talent, monetary means, or the gift of time to help one another out. This is God's wishes for us.....to help out a fellow man, to show compassion and caring for what others are enduring in their lives. So many times it is easier to turn the cheek, or to think that other people are helping a family and there is no need for your added help. That is simply not the case. We can all help these families in one way or another.
Halloween was not as bad as I thought it would be. Grant and I tried to stay focused on the other kids and have a good time for their sake. We went to their school parties and parade. That evening, I knew I did not want to stay home by myself and pass out candy like I usually do. So, the candy went into a bucket on the front porch and we were off. After a great deal of houses hit, I was about over the trick-or-treating thing as I recently threw out my back. We headed back to a neighbors house for chili and a wonderful time with good friends. Several times throughout the day, I reflected on last year at this time. Alexandria was doing so well. We had every reason to believe she would survive. I remember she walked to the door as we were going to go trick or treating at the neighbors on either side of us and call it a night. Alexandria walked over to the door, opened it up, said, "It is WAY too cold out there for me!!!!" She said, " lets go snuggle in your bed instead mommy." We promptly did just that. What an awesome evening we had. Just the two of us, snuggled up watching t.v. and talking, not a care in the world. I miss those moments that it was just the two of us.
I think both Grant and I are seriously dreading Friday, November 7th. It will have been 3 very long years since Alexandria was diagnosed. That day still haunts us both. Sadly, but understandably, I am not looking forward to the holidays this year. My sister Stephanie will be coming to St. Louis with her family for Thanksgiving. It will be great to have them here and see my niece and nephew. It will be difficult as well. Our families celebrate many holidays together and this will be the first one we are all together without Alexandria. I would love to skip Christmas altogether this year. I know that sounds horrible. I know I need to be strong for my other children and enjoy it for them. I just think from now until February 16th, 2004, things are going to be hard. I am sure we will all get through it. We have had to overcome a great deal in the last few years and we will continue to do it for some time I am sure.
A sincere and heartfelt "thank you" (and please accept my apology for the delay) to the families who dedicated a "Camellia bush" at the Missouri Botanical Garden in memory of Alexandria. This was such a kind and thoughtful thing for them to do. From what I have been told, this bush blooms only in February. Grant and I were so touched by this and cannot wait to actually see it on display at the Linnean House. Thanks again to Jeff and Cynthia Etter, Tim and Monica Freese, Mike and Janet Montgomery, Bill and Mary Morgan, Drake Owens, and Paul and Gaye Pence. "The Garden is the greatest refreshment to the Spirits Of Man." - Francis Bacon. What an awesome tribute to our daughter........thanks so much guys !!!
Again I am in awe of the amount of visitors to this website. I sometimes joke that I think Alexandria is sitting up in heaven repeatedly touching the "# of visitors" button. I cannot believe we are coming up on 200,000 visitors. It is just mind boggling really. I am thankful for each visitor (well almost) and those of you who take the time to write a quick note.........thanks so much. It means a great deal to me that people still care about how we are doing. Your support is a blessing to me.
God Bless-
Alison
mom to Angel Alexandria
Saturday, October 25, 2003 1:07 AM CDT
I know that many of you will be surprised at two entries in one week. Alexandria was just on my mind tonight, as per usual, and I just felt like updating. This week has been an emotional rollercoaster to say the least. It was so fulfilling and so rewarding to continue on with the golf tournament tradition again this year. It was hard to stomach the fact that it was a "Memorial" tournament this year. How I longed for and prayed so hard that she would be there this year. There are times that I am driving down the road, and the thought actually pops into my head.........a vision, Alexandria..... struggling to get her last few breaths. A feeling that makes my heart skip a beat and makes me temporarily lose my breath, and on the verge of a panic attack, a vision of Alexandria lying in her casket. Lifeless...cold to the touch.......soul in heaven and no need for her earthly body anymore. They are images I do not wish to remember on some days, yet on others, I try to remember and memorize each and every thought. It is a strong dose of "slap you in the face" reality. Sometimes I get so busy trying to be busy, that I honestly trick myself into not letting myself think about her. I literally force myself to not let her enter my mind. I know what "going there" will do to me. Call it the path of least resistance, call it a cop-out if you will, but I honestly believe it is a survival and coping mechanism. I am sure that it is normal grieving as well. To think too much about what our family has witnessed and endured in the last three years would be "overload." Too much for one to bear. So, to remain sane, I block out many images that cause pain or are too sad to think of. I fear the reprucussions this will have in the future, but then again I am surviving for today. I encounter people on a daily basis that ask me "how I do it?" or where do I get my strength?" Well, I must confess, I have no idea how I do it, only that it must come from God. I do know that the strength that appears on the surface may not always be the case. There are times when I am crying out inside. There are other times when I feel so confident, so at peace that Alexandria is in heaven and how she does not miss this place. Her new home far exceeds any of her earthly expectations. There are also times that I am human, and selfish, and only wish that she was back here with me. I was telling somone the other day how wonderful, how awesome it was to know that Alexandria's purpose in life was revealed to us all after only nine and a half years. Her exact purpose and mission in life on display for the world to see, learn and grow from. God revealed it to her, to us, and her journey was accomplished......her destiny fulfilled. How powerful is that? I cannot imagine anything greater. I then said, "I wish I knew exactly what my purpose in life was?" This person turned to me and replied, "don't you think your purpose is a continuation of her purpose?" It was one of those "stop you in your tracks" moments. Is this God's plan for me? Alexandria's shoes are way too big for me to fill. I wonder how I might possibly come even remotely close to teaching the lessons she taught. I am still learning, still the student, and certainly not ready to teach. Help, yes. I will do my best to try and help as many families as I possibly can with this foundation and if in the process I become the teacher, so be it. I just want to leave this world a little better place. That is exactly what Alexandria did. It is hard sometimes so see that "big picture." We see our lives as only a very small portion and insignificant in the grand scheme of things. It is hard to think that our small, tiny contribution could make a difference. The beauty of it is that all the small contributions that each of us has to offer further along the entire process. It completes a piece of the pie that would not be there if it had not been for our efforts. That is powerful. It is has such significance in my life. I am sure if I had not been through what I have, I would think as most of you do. What can I do? How can I make a difference? What is so amazing is God gave us that choice, the right, the opportunity to do just that each and every day that we are here on this earth. Each day we can chose to make a difference. We can chose start over. Each day we can build on the day before to accomplish our goals. What I witnessed in the last six weeks and on Monday, was absolutely unbelievable. There are hardly words to describe it. To look out and view a "sea" of friends, and strangers alike, all with the intention of making children with cancer's lives a little easier, a little brighter than the day before. Each effort counts. You are all storing treasures for the other side. Each of the people that contibuted to the Alexandria's Angels Foundation made a positive difference. It is just hard to put into words the sincere sense of pride and accomplishment that this foundation has given me. I feel as though I am somehow contributing, giving back what was given to me and that eases my own pain. Lord knows I would do anything to have her back, but knowing that somehow, someway I can help others in any way, shape or form.............that is priceless and worth every ounce of effort I can muster up. When the day is done, can we honestly answer the question, did I make a positive difference today? Did I help a friend, did I listen, were good deeds done, did I show actions that reflect a true Christian, "do they Jesus in me?" If the answer is no, God may bless you with another day to start anew.......another chance. That is the beauty of life. We each have something to contribute, some way, big or small to make the world a better place. I believe I am certainly a better person for having known Alexandria Nicole Haddock and for that I am thankful.
I did not share this with anyone for fear that people would think I was crazy or imagining things. On Sunday night, 4:12 a.m. Monday morning actually, I was abruptly awakened from sleep. I had not been sleeping well at all lately (worse than usual) with the golf tournamnet pending and making sure that everything was completed. I heard a voice, it sounded like a girl's voice. It was a soft whipser actually. She said "mommy." I sat upright in bed quickly. My first thought was that it must be Addison who was sleeping next to me. When I looked down at her, she was soundly sleeping, and again, I heard someone say, "mommy." My heart was now racing. I tried to adjust my eyes again, thinking I would immediately see Hayden or Hunter standing over my bed to tell me that they had a bad dream. They were not there. The bedroom door was shut. Not a "soul" stirring. I have to tell you that I honestly do not know if I was dreaming, or if, somehow Alexandria was, in fact, whispering my name. I will tell you this, regardless of what it was I am grateful and thankful. I could not believe it. On all mornings, I believe she chose to say to me this day " I am here with you, I am in your heart always, you are doing the right thing, and no one can take your memories away from you." The impact of those words, "Mommy, Mommy", literally shook me to the core. I could not go back to sleep. Absolutely remarkable and unbelivable I know. She was there.......some how, some way, I know she was there. I will never forget that moment as long as I live. I just told Grant about it today, and I once again saw tears in his eyes. He was in awe of it and believes it was her.........there is no doubt. Thank you, thank you, my precious Alexandria for this gift. I cannot tell you what it means to me.
God Bless-
alison
Thursday, October 23, 2003 0:41 AM CDT
Monday, October 20th, 2003, The Alexandria's Angel Foundation was BLESSED beyond words. The foundation raised a great deal of money for families affected by childhood cancer. It was an emotional day to say the least. We started out the day with volunteers and the golf commitee at the cemetary at Alexandria's grave. A prayer was said by Pastor Lew. It was a touching prayer and one that we all appreciated greatly. As the others left, Grant and I stayed behind and joined hands over Alexandria's grave. We prayed. We prayed that this event would raise awareness for childhood cancer. We prayed that 6 weeks of preparation would pay off in the form of benefiting these children, and others, who so desperately need our help. Many tears were shed as we both thought that Alexandria would be here this year, at this tournament and we would be celebrating the one year anniversary of her bone marrow transplant. We are painfully aware that this was just not God's plan. His will was that she come home, for her mission on earth was complete.
We quickly moved to the Winghaven Country Club. For the first time, I had the joy of meeting seven year old Kenny Shiels. He has been battling a brain tumor for years. He recently went into the hospital for surgery, and left the hospital 6 weeks later with his sight gone. The pain and despair this family has endured for so long is unbelievable. The Foundation learned that Kenny loves music and so we decided to give him keyboard complete with microphone. Sue, Kenny's mom, shared with me that after they left he would not stop playing with it. He enjoyed playing "dj." How awesome is that??? Then, we gave Kailie a gift generously donated by Kris Ozmat with Creative Memories. It was filled with items that Kailie loved and she was anxious to get started on her scrapbooking. We then gave Connor, the big sports fan, baseballs, bat, and glove. To see the look in the eyes of these parents, to see the smiles on the faces of the children......that in itself would have been enough for me. Enough to sustain my drive and fight for this cause for a long, long time. The families were so thankful for this event and for all the hard work that was put into it. Although I thanked the volunteers in person at the golf tournament, I feel it is important for them to be publicly recognized and a big "pat on the back" for their hard work and dedication towards this golf tournament. A sincere "thank you" to Margie Richards (Nancy's sister) and her "crew" for all of their hard work and dedication to this cause. They played such a crucial role in the success of this event. They were relentless in getting supporters for us as they wanted so desperately to help their friend, Sue Shiels and her family. Speaking of hard work ........... a HUGE "thank you" to the large number of volunteers who helped throughout the day. Erin is 8 months pregnant, yet she went non-stop all day without one complaint. Kristen Bly, Tracy Mazur, Kim Behlmann, Chris Hunter, Judy Vollmayer, Jeanine Riendau, Ann Newsham, Pam Passwater with Dream Factory and countless others who played a major role in the great success of this event. The biggest, yet best surprise was the presence of Lauren and her mom Susanne. If you remember from a previous journal entry, I met Lauren, and Nancy met her sister Lindsay the same night at seperate places. It turns out that Lauren has a brain tumor, and decides she wants to be a part of Alexandrias's Angels. They showed up that morning and despite the fact that it must have been physically exhausting for Lauren, she worked the entire day with her mom doing numerous tasks. They just wanted to be a part of this and help out. Wow.......I cannot tell you what that meant to Grant and I. Each and every one of these awesome people graciously volunteered their time for a great cause. It just goes to show that one person can make a difference.....a huge difference. I could never adequately thank all the volunteers for their time and energy. I appreciate each and every thing you all have done for the Alexandria's Angels Foundation. It is people like you who make the world a better place. Once again, it was a sold-out event. The silent and live auctions went great. Many people won great raffle prizes. It was just an absolutely glorious day for so many reasons. I would like to thank my dear husband Grant. God love him, he tried so hard, but could just not make it through his speech. He was not the only one in tears. As I looked out among the crowd, I saw just as many men as women shedding tears. It was extremely touching to see Grant and his sincerity. Three years ago he would NEVER had cried in front of anyone, now he doesn't care about crying in front of others at all. The depth of his pain is evident in the way he talks about his precious little girl named Alexandria. I am so proud of you Grant. It makes no difference whether or not your words were said just right, it matters only that you showed each person there a part of you, what you are made of, and how much you loved your Sissy Girl. That is all that really matters.
I want to thank this opportunity to also thank Rick Horton for joining us again this year. A sincere and heartfelt thanks to John Fuller from Channel 5 (who ordered AWESOME weather by the way) and Marc Cox of Channel 4 for being the MC's of the event and for being our auctioneers. Thank you to Bill Cole who also played a very important role. He served as "golf tournament educator" for those of us "golf-challenged" board members. He spent last weekend numbering and recording raffle and auction prizes and putting together the golf teams.
There are two people that I would like to thank from the bottom of my heart. Their hard work and dedication to this Foundation was unbelievable. Dawn Dains and Nancy Cole gave 110% of their time and efforts in promoting this golf tournament. Without them, it would not have been possible. They worked tirelessly on their own birthday's and their childen's birthday's without one complaint. Dawn was our computer wiz and pulled things together in a very timely and organized fashion. Nancy, was good 'ol supportive, stand by you through thick and thin, "can-do attitude" Nancy. They gave me pep talks when I needed them. They picked me up when I was down or doubting. They kept me going when things were difficult and painful. I hope that each of you are as richly blessed as I am to have friends like these. I don't know what I did to deserve them, but I sure am thankful to God for putting them into my life.
Nancy, Dawn, Kristen, Judy, and "Kenny's Krew", hit the streets and the phones and were able to get over 140 awesome auction items and countless sponsers. The list in the program goes on and on because we had so many generous supporters who were contacted by the golf commitee. We had a goal. There are families that needed our help. Grant and I have walked in these shoes. These people did not give their heart and souls for recognition. They just wanted to make a difference in the lives of families affected by childhood cancer. They focused solely on that goal. Their efforts paid off ten-fold. It was a group effort at all times. So many people pulled together and orchestrated the planning of this event. It was an awesome thing to witness.
Thanks to all the people who came out to golf, as well as those who participated in the dinner and auction that night. Mr. Beauchamp, the kids principal from school, even came to golf. It was quite obvious that everyone had a great day. A million thank you's to you all. Grant and I are so honored to carry on the Alexandria's Angels Foundation. We are so touched by the support and generousity of all the people responsible for making this event, this foundation, successful. Knowing that we have helped others.........well, it just does not get any better than that.
Thanks to Grant's friends Pete Day, who drove in from Indianapolis, and Mark Fox who flew in from Michigan to support Grant and this golf tournament. We are so glad you could share this day with us.
A big thank you to Kailie Rhines. She did an awesome job at her piano solo that evening. It was so touching and once again moved many to tears. Thanks to the Shiels, Ballard and Rhines family for allowing us to be a part of your lives. Each of the families have such faith, hope and strength. Their children are so loved and it certainly shows. Thanks to Chris Andrasko with Chris A's Catering who provided a delicious lunch and Chevy's who provided snacks and drinks.
Most of all we thank God for all His goodness. We give Him all the glory. We thank Him for blessing us beyond our dreams for this event. We thank Alexandria Nicole Haddock for teaching us how to fight and never give up. Although it was a great deal of work I would do it all again. It is the most rewarding thing I have done in my life other than being a mom. I am richly blessed...my cup runneth over.
I know that Alexandria is looking down from heaven. She saw each and every one of you, all your efforts, all your support and she is so proud.
I am sure that I am forgetting to thank someone, and for that apologize. We will post pictures from the event soon.
God Bless You All-
Alison
mom to Angel Alexandria
Thursday, October 16, 2003 3:14 AM CDT
I do so apologize for the length of time in between updates. I am spending a great deal of my time preparing for this golf tournament. It has certainly been a labor of love. I would do it all again in a heartbeat to help other families for I know all too well the burden they carry. Things are actually going awesome and I am continually amazed at the amount of support we are receiving. When Dawn was typing up sponsors and people who have donated time, money or talents, the list consisted of two typed pages front and back. WOW !!!!!!!!! I pour over this list of supporters and cannot even believe it. God is so good. He provides continously. Alexandria is looking down from heaven and is so proud I am sure.
Last weekend, I had the priviledge of being interviewed at the Channel 4 studio. I was nervous at the thought of being on live television. I am all about taping and editing, not so thrilled with live. I sat at the news desk and answered their questions and told Alexandria's story. It was a great experience for me and I am so thankful that I got the opportunity to speak about the golf tournament and about Alexandria. Thanks to all of you responsible for making this happen and to Nancy and Dawn for being there for support. I could not have done it without you.
Well here it is again........the 16th of the month and eight long months since Alexandria left this world. I always take time on the 16th to reflect about her life and what she stood for. I think about the lessons she taught me while here and what she continues to teach me from her heavenly home. I miss her terribly. I know she is smiling down on me and is proud.
I will write more tomorrow.........good night and God Bless-
Alison
Monday, October 6, 2003 10:05 PM CDT
I am sorry for the delay in updating. There is so much that has happened in the last week that it is unbelievable. I have never been so moved by anything, other than Alexandria herself, in all of my life. The support that we are receiving for the Alexandria's Angels Foundation is absolutely, positively overwhelming. I just cannot believe how many blessings that I have had the honor of receiving. To date we have received such things as an autographed electric guitar from "Three Doors Down", 4 trips to various locations, jewelry, former Cardinal players joining us again, and Channel 5 Meteorologist John Fuller will be the MC for the event. We have had many golfers sign up already so spots are going quickly. BLESSINGS BLESSINGS BLESSINGS !!!!!!!
The story that Fox2 News did last week was absolutely awesome. Although it was painful for our family to do the story and to view it on t.v., we are so thrilled at how it turned out. Nancy Pasternak and her crew did an excellent job portraying Alexandria's life, our mission, and our dedication to preserving our daughters' memory and foundation. A huge "thank you" to Fox2 and Nancy for an excellent job.
We certainly think this story will raise the awareness of childhood cancer and the need for communities to come together to help other children afflicted with this disease.
No one could ever understand how good it makes me feel to know that we will be able to help other families in similiar dismal situations. For just one moment, take off your shoes. Now put yourself in the shoes of another mother or father. Think about how you would feel if your child was diagnosed with a life-threatening illness. Then envision being told by the doctors, that despite the fact that he or she has been fighting hard to live, the disease has won and there is nothing more medically that can be done. Think of your despair, your hopelessness. Think of not only your pain but of your spouses and the child's siblings. Think about the fact that you don't know how long your child will live.....how many more mornings you will wake up and see their face. Now add in all the other everyday worries with other children, bills to be paid, etc. Think of the fear your child who had lost his/her sight due to the illness may have. Think for one brief moment how you would feel if your child called you his teachers' name instead of "mom" because of the disease and brain surgeries had affected his mind/memory. Now think about what you would do if, instead of getting up in the morning at the hospital and spending the day immersed in the blessing of the gift of life that day, you had to leave him or her to go to work because of medical insurance or finances. What would you do? These are tough decisions that are being made each and every day by families dealing with childhood cancer. Wouldn't it be nice for employers to offer a medical/family leave that was paid vs. unpaid. I believe we have come along way in this regards, however, we could take it a step further. Why do most employers pay for you to take maternity leave for you to bring a child into the world, yet there is no such offer when your child is leaving this world? I don't think it would be too much of a financial burden for larger corporations to take this on, yet what a devastating impact it could have on the individual family. Many of these families have been dealing with medical expenses for years, and to add more financial burden of lost wages would be prohibitive. Would it not be such a wonderful gift to offer families the ability to spend time with their child without the fear of the negative financial reprucussions? This is just one way the Alexandria's Angels Foundation can help. One of the families we are sponsoring is in this exact situation.
I know God has a plan for Alexandria's Angels to touch lives. I also believe that there is a little angel in heaven who is overseeing this. Too many "coincidences" have happened. For instance, when I went to the dry cleaners the other day, I began talking with a nice young lady. It was revealed to me, after giving them the information of Alexandria's Angels Golf Tournament, that this girl has a brain tumor. Lauren is 18 and a senior at Fort Zumalt West High School. She had surgery last October 29th to remove part of the tumor. The doctors will wait until the tumor begins to grow again to start chemotherapy. Until then she waits....she and her family will wait anxiously and pray continously. The funny thing is, the same day, Nancy Cole was eating dinner at a local restaurant and had a conversation with her waitress. Her name was Lindsay and she had a sister, Lauren, with a brain tumor. I did not tell Nancy of my conversation with Lauren, she did not tell me about her conversation with Lindsay. Amazingly, I received an email message from their mom telling me about this today. At the time, I was on the phone with Nancy. At first, I couldn't speak, I could not believe it. I then read Nancy the mom's e-mail stating that I had met Lauren, and Nancy had met Lindsay, both of her daughters, on the same day and told them about "Alexandria's Angels." HOW AMAZING IS THAT ????????Lauren wants to help other families as well. She will be having a fundraiser of her own to mark the one year anniversary of her surgery. She and her mother have decided to help with the golf tournament and they want to donate the money they raise at the high school to our foundation. Now, I don't know about you, but I am POSITIVE that God and Alexandria had a hand in this. There is no way that isn't the case. This is just one example of the powerful things that have transpired with the planning of this event. We are receiving a tremendous amount of support from churches such as Dardenne Presbyterian and Fellowship Church where the Ballard's worship. What an awesome thing. Good can come of this dreadful disease. God is good. He will never leave us or forsake us and for that I am so thankful. You do not need to be a golfer to support this cause. You need only to have a heart that feels compassion for children who are fighting the fight of their lives. Thanks to each and every one of you for your support thusfar. We could not be where we are today without you.
Well, it is now 12:45 a.m. and I am off to bed. Once again my prayer will be that Alexandria will visit me in my dreams.
God Bless-
Alison
Wednesday, October 1, 2003 2:24 PM CDT
Well, just as I thought today would be hard, it is. Sometimes I hope that I can look past and beyond the hard days to get through them. Other times I cannot imagine why I would bother to do such a thing. I know it is healthy for me to grieve. In my mind I know how tough these "firsts" will be, I just cannot always prepare my heart for it. Last year at this time, I was sitting next to Alexandria watching her and praying that Hunter's bone marrow that was being infused would be our answer......her cure. Instead it gave us just a few more months with her. I would not trade those moments for the world I just wish I could have had more of them. We had so much hope for another outcome. I know God does not always answer our prayers the way we would like. I just miss her so much, that is it, plain and simple.
Today Grant turns 40 big years old. I am just glad that he gets to go through it before I do. Last year, we thought there was a reason for Alexandria's transplant to happen on Grant's birthday. We thought it would be a "rebirth" for her.......another shot at life. That was just not meant to be. I know that "this too shall pass" and I will feel better soon, I just need to get through today, small steps. Grant is actually out of town for a couple of days for business so I am praying that he is doing okay. I would not necessarily want to be alone on my birthday, especially this one.
I got a message from Fox2 that they will be airing the story about the Alexandria's Angels Golf Tournament tonight at 9:00 p.m. They cannot give me a copy and my VCR will not tape anymore so hopefully someone out there can tape it for me. They will probably run the story again tomorrow a.m. or 11:00 a.m. I am a little anxious to see how it turned out.
On Sunday evening, I had the opportunity to go to our youth's worship group at Dardenne Presbyterian called, "The Tide." I was speaking about the golf tournament and thanking them for their support and prayers for our family throughout this ordeal. The group is lead by Marc the youth pastor and he has great enthusisam and an obvious love for these kids. Wow, was that an awesome experience. Those kids showed such passion about hearing God's word and praising Him thankfully. It was an awesome thing to witness these young adults and their faith in God. I would encourage anyone with preteens/teens to check this group out.
They were rockin and rollin and talking about some pretty great stuff. Life for that age group is tough these days. What a great thing for them to experience something so powerful and positive like God's love shown through others. The message for the night: God does not care about what is on the outside of us, only what is on the inside. There was time at the end of the service for personal prayer and reflection. I took this opportunity to do just that. Then Dawn and myself went to Alexandria's grave. We prayed about the golf tournament and that it would be a success so we can help more families. All we want is to help others and this is one way to do it. From what I have seen and heard the golf tournament is going great so I would urge you to make sure and get your registration forms in soon. Last year they had a 30-40 person waiting list. Blessings !!!!!!!
I am sure I will update again soon-
In Christ-
Alison
Tuesday, September 30, 2003 9:10 PM CDT
I have been dreading tomorrow's date for some time now. As the day draws closer and closer I feel a horrible feeling in the pit of my stomache. Tomorrow, October 1st, marks the one year anniversary of Alexandria's bone marrow transplant. The emotions running through me are unspeakable. My heart aches as though some one has taken a daggar and ripped through it time and time again. Is there no end to the pain that one feels with the loss of a child? Do things get easier? Does the pain lessen? I think not. It has been months since Alexandria went to be with Jesus yet I sit quietly in my office tonight, in the dark and ponder. I think to myself, why her? Why me? Why did the atheist's child get to live and my child, a firm believer and supporter of God have to die? People say their child was saved and they owe it all to God and His Glory. Did I not have enough faith? Enough strength, enough hope??? At times I think it is imposssible that I could have given any more, believed anymore. At other times I am reminded how little faith I must have. I wonder sometimes, why is it so hard to lose a loved one? Dying is a fundamental, reality of life.....a part of living. We all know that one day our time is up and God will call us home. I suppose it is just so hard to fathom how a child with such will to live, so many lessons to continue giving others would be called home so quickly. I can honestly say there are still times when I think to myself, oh my, she is really gone. I know many of you cannot understand this. Reality should have set in by now. But the tendency to wish and hope that this is all a bad nightmare comes to mind frequently. I want to wake up and see that beautiful face smiling back at me. I long to hear her voice, feel her touch. I miss her today as much as I did in February 17th, the day after her death. I believe a part of me died the day she died. I don't think I will ever get that part of me back. I lay awake many nights and re-live every moment of the weekend that she passed away. It is like a horrible dream, yet, I try to savor every single second of it.
A couple of weekend's ago, I attended a seminar at church entitled " Becoming a Woman of Purpose." I sat in my chair thinking to myself.........what is my purpose, my mission? What does God want to show with me or through me to others? Then a friend of mine, Kellie, sang the song "Do they see Jesus in Me?" Well, I am no expert, but I think many people saw Jesus in Alexandria. She reflected an image of Jesus in her day to day living. One that I, myself, could only hope and pray to show the world someday.
Last weekend, Fox 2 News Reporter, Nancy Pasternak, came to our home to interview Grant and I. She wanted to know about the Golf Tournament and she was so gracious and supportive. She interviewed me first and I was able to answer her although I am not quite sure the question and answer matched. Nancy showed the utmost compassion for our situation. She then asked Grant some questions. Her first question was, "what was the most special thing about Alexandria?" Well, that is about all it took to send Grant down "teary lane." He began to cry and the cameras stopped at the point. He later told me that he could have spent the entire day telling that story, but was moved by the thought of what he would say, and he could not speak.
Please prayerfully consider becoming a sponsor of the Alexandria's Angels Foundation in whatever way God leads you. We so desperately want to help others going through similiar circumstances. You will never know what your small or big role may play.....every little bit helps to bring a smile to a kid with cancer.
I wrote much much more and lost it in "cyberspace". I will write more tomorrow.
love and God bless-alison
Monday, September 15, 2003 11:00 PM CDT
It is with a heavy heart that I share the news of Taylor Nicole Hancock's passing with you. She passed away at 11:10 am Sunday. I know she is pain free, has no fear, no cancer, no lines, no medicines, no sadness....she was welcomed into heaven by the many angels who preceed her. I know they are dancing, singing, and galavanting around the gates with many animals following right behind them. However, for Taylor's siblings and mom and dad who have already lost another child, things will be difficult at best for a long, long time. Please say extra prayers for her family who is left behind to miss their sweet daughter daily until they meet again. A sincere "thank you" to all of you who left the family messages of encouragement and more recently, your condolensces. After walking in these shoes, I cannot tell you how much it means to a family to hear from perfect strangers that they are praying for them.
After careful consideration about "a person's" website entry, I decided to surprise you all and not even let them have the benefit of one second of a thought from me. I do appreciate the support of those of you who have written me and shared your thoughts on this person. Here's how I see it: first that person has been sippin on WAY too much "sauce" if you ask me. You would have to be "on" some serious stuff to write what they did. With that being said, let us all now feel VERY sorry for this sicko who will probably spend eternity burning in hell while I enjoy a seat next to my daughter in heaven with the rest of us who believe. I know I could have erased the entry, but I wanted this person to be revealed for what they truly are.
Plans are moving right along for the 3rd Annual Alexandria's Angels Golf Tournament. I appreciate greatly the items that have been donated and the sponsors we have have received thusfar. What is even more amazing to me, is the amount of people calling to volunteer their time and talents. We are so grateful for all of you. We are so glad that so many of you see a need to help other families who are affected by childhood cancer. How priviledged Grant and I feel to be part of this foundation which is my daughter's namesake. She would be so proud that we are keeping it going and so proud of all of you for your support. Not only would we like to help other families through the rough times, we would also like to donate money to Caring Bridge. As you can plainly see, this website has been a "lifeline" for me. I think about all the times I needed to get information out, to have more prayers or specific prayers. What would I have done if I did not have this website to come to and share with so many so quickly? It is so beneficial for me to read all of the encouraging things you all had to write over the past 3 years. How wonderful it was to see Alexandria's face light up when I would tell her the # of visits to her website and when she would read the messages to her. It is a non-profit organization and relies strictly on the generousity of others to keep it going.
I will put the information on the homepage but a reminder here as well.
Alexandria's Angels Golf Tournament
Monday, October 20th, 10:00 a.m
Winghaven Country Club
Questions, or for registration forms please contact
Nancy Cole
636-561-2804
To mail or bring by items for donation her address is :
111 Timber Meadows Drive
O' Fallon, MO 63366
You can always contact me as well at:
alisonhaddock@charter.net
241 Chestnut Hill Drive
O' Fallon, MO 63366
636-561-8680
Thanks again for your support. We are looking forward to another successful tournament and hope to see you all there.
God Bless-
Alison
Friday, September 12, 2003 9:34 AM CDT
For those of you prayer warriors out there following Taylor now, I thought I would update. Taylor was having "seizure-like" episodes and so they took her in to the hospital. Anti-seizure medication was ordered by the doctor, however, a mistake was made and the drug was given at 6 times the proper dose. Since the drug has a 24 hour half-life (time the drug stays in the body), she will probably be placed on a ventilator as she is having difficulty breathing. She is in the PICU. The ventilator decision would be exercised due to medical error, not progression of disease. Please pray for this family. Oh, how my heart aches to read of their battles, so similiar to our own. Pray for comfort and peace for Taylor as she is very scared and afraid right now. Please pray for strength for mom and dad, Neena and Terry. To watch your child suffer (and even more so when done needlessly due because of medical error), and fearing the outcome of death is a feeling I would wish on no one. I am on my knees in prayer for this family and the many others in this situation.
God Bless-
Alison
Thursday, September 11, 2003 2:44 AM CDT
SEPTEMBER IS CHILDHOOD CANCER AWARENESS MONTH !!!!!!!!!!
I want to take this opportunity to thank each and every one of you who has taken the time to go to Taylor's website and give her and her family support and prayers. I know how nice it was to hear from people while we were going through this ordeal, and I know that the family sincerely appreciates it. I don't think Taylor is doing very well. She is in great deal of pain and only a miracle can save her. The burden for this family is great. How heavy their hearts are yet they still hold out for divine healing. I will keep Taylor close to my heart always as she reminds me so much of my precious Alexandria.
As I mentioned last week, we are planning the 3rd Annual Alexandria's Angels Golf Tournament. MARK YOUR CALENDARS AND PLAN TO ATTEND !!!!!!!!!!! It is scheduled for Monday, October 20th, 2003 at Winghaven Country Club. It is my hope that this year's tournament will be a complete success in raising awareness and money for families with children battling cancer. There are so many families that we would like to help. So many families that need our support. Some of these families live right here in our own neighborhood. Alexandria would want us to help other children and so that is exactly what I would like to do. I want to keep the Foundation going so that we can bring smiles to the many children who are so courageously fighting the battle of their life. If I can bring one smile to one child through the Alexandria's Angel's Foundation awarding gifts or money, then I will have deemed it all a huge success. So, for all of those interested please e-mail me and I can get you a Registration form.
We need volunteers for the day of the event. We need large corporation's sponsorships. If any of you reading this can talk to your company about sponsoring the event, a hole, or make a donation, it would be greatly appreciated. Of course we need many golfers. Last year it was a SOLD-OUT event with a waiting list. Please register early to reserve your spot. I will soon be posting a "Wish List" of items that we would like to have for silent auctions, raffles, drawings etc.
I cannot thank the Golf Committee from last year's tournament enough for what they did for our family and other families through this event. For those of you that attended and help support last year, we ask that you please join us again this year for a wonderful time and great cause.
Alexandria thanks you for keeping her memory alive through this foundation. The "Alexandria's Angels Foundation" represents the good that can come in the face of this dreaded disease. It is our goal to help others as we have been helped..........please, won't you join me?
For more information please contact myself or Nancy Cole.
www.alisonhaddock@charter.net
636-561-8680
Nancy:
636-561-2804
Alexandria's Angels Foundation
111 Timber Meadows Drive
O' Fallon, MO 63366
In Christ's Love-
Alison
Friday, September 5, 2003 2:26 AM CDT
Yes, I know it is 2:26 a.m. but somehow my body does not feel the need to sleep right now. You see, there is a family in Virginia, with a precious daughter named Taylor, who is fighting the battle of her life. She has several infections, bone marrow full of blasts and in a great deal of pain. The only thing that will keep her here on this earth is prayers and a miracle straight from our Heavenly Father. My heart aches for this family who has endured so much. I know exactly what they are dealing with. Today Taylor celebrated her birthday with a "Barbie" theme. My prayer for her is to see her next birthday, and the next..... I realize this just may not be God's plan. It is hard to have to go through such a horrible, devastating, life-changing ordeal, and then witness so many other families that must follow in your footsteps. I wish I could have raked the path behind us so that no one else had to follow. Unfortunately, no one knows when they themselves, or their child, will be called to journey on this path. More research must be done to save these children who have the "harder to treat" leukemia's. Please take a moment to pray for Taylor. Pray specifically for peace and comfort. Pray for less pain and for her to feel all the love, support and care that her family is so graciously giving her. Pray that, if by chance, it is God's will for her to be cured and healed in heaven that she go there peacefully. I am down on my knees, are you.......
Please leave mom, dad and Taylor a note of encouragment. I know what it meant for our family to know there were prayer warriors out there praying without ceasing.
www.caringbridge.org/va/taylor
God Bless-
Alison
Sunday, August 31, 2003 11:30 PM CDT
Dear Friends-
I realize that once again too much time has passed since my last entry. I am pleasantly pleased beyond belief that "Alexandria's Angels" website has had 2,000 hits in one week. Now this has happened previously but for you all to be so concerned for our family that you come here even six months after her passing......well, it warms my heart. I will also tell you that the reason for lack of updating is the fact that I have had a really good 10 days and in doing so, I have been way too busy taking advantage of it. Not one tear shed from one Wednesday until last night. Wow, that is a record for me for sure. I have been so busy working and doing things that made me happy that I just could not "go there." I knew if I did I would be sad and tearful. Although I thought about her constantly, I was able to put one foot in front of the other and keep from sobbing uncontrollably. I know I will have my fare share of days in the future. As I reflect on the past few weeks that followed such a horrifically difficult first part of August, I am so glad that I can be happy despite all of the trials that we have/are enduring. Again, it is my personal goal to show my children that happiness can be found despite the punches that life may throw us.
I am not really sure what is going on with me, but I have been overally forgetful lately. I have been clumsy and clueless for the most part. I am not talking about your traditonal "oops, where did I put me keys?" I am referring to not being able to finish a sentence because I forgot what I am talking about......constantly. Ladies, I am talking "pregnancy brain" x's 10. Not sure of the culprit. My guess is early (okay very early) onset of Alzheimer's. I am not kidding, it is driving me crazy. Oh well, someday I will hopefully get my brain back, and in the mean time......Now what was I saying????? See what I mean??? Here is just a small sampling of how bad it is...this morning we went to church as per usual. We were also running a little late (stayed up too late last night celebrating a friend's brother's 40 birthday....therefore hard to jump start today. So Grant and I had taken seperate cars so I could have extra time to get ready. I parked in my usual spot right in front of Sissy's grave so we can go there immediately after church. I could not get the keys out of the ignition despite all my attempts. I decided to just leave the car, keys in ignition and all. I felt like this was the church parking lot and the safest place for it to be with unlocked doors. After church I told Grant to come to the car I was driving to "take a look" and find the problem. Well, it was not too long before he looked out at me and said, "You have to put the car in PARK before you can get the keys out. "OOPSY!!!!" I believe Alexandria was right there looking out for me once again. If I had parked anywhere else on the church parking lot, it could have rolled down a hill, into another car, or even worse, a child. My car was parked on a very level spot and a curb was in front of me. PTL !!!! After the fiasco of the key situation, I walked into church scrapped one of my toes on the under side of it. Sharp steel was exposed, and there I was, my toe profusely bleeding and throbbing all through church. I was, as usual, so touched by Gary's sermon and the songs we were singing during communion, that I forgot about my little incident. I did make a comment to God saying "Excuse me Lord, I am trying to be a good Christian and go to church, can you pretty please cut me some slack here." I would like to elaborate on the services, but I must save it for tomorrow because it is midnight and I must go to bed NOW !!!!!!
***I am pleased to announce the third annual "ALEXANDRIA'S ANGELS GOLF TOURNAMENT" will take place on Monday, October 2oth, 2003. If anyone has something to donate for raffles or golf prizes, (or knows someone who does) please contact me. The Haddock family will no longer be the beneficiaries of the foundation. With this being said, Grant has been added as the vice-president and I have been named President of the Alexandria's Angels Foundation. Grant and I just don't want this Foundation that has helped us tremendously over the years to die along with my daughter. There are SO many families that we have learned about that are fighting with landlords to not get evicted. There are so many who have already lost their home due to medical expenses. Can you even imagine your child fighting for his/her life and then have to think that at any given time they will be asked to leave their home? We want to help the children's hospice services, provide gifts to children who just need a little pick-me-up on long days at the clinic and also to send money to the Leukemia and Lymphoma Society for research. This is the minimum bare surface of what we would like to accomplish. We have such high hopes that it will be even near as successful as last year with the generous help of Dave, Nancy, Tammy, Tara and Ann. Many of you helped plan the golf outing and made sure you were there on the day of the event. Grant and I STRONGLY feel that we have much to give other people who have walked/are walking a similiar path. There are so many families who are struggling everyday and we want to show them that God is good and people jump in and help when they can. It makes the giver also the receiver. Many of us know how much joy helping others brings us. In the meantime, if anyone would like to volunteer to help with this event, be it time or talent, please let me know by leaving me a voice mail on my cell 314-503-5882,
or e-mail me at:
alisonhaddock@charter.net
Please join me in prayer for Taylor in Virginia. She is about Alexandria's age, has a similiar kind of cancer as Alexandria, had a BMT, and relapsed as well. Taylor has tremendous faith that rivals any adult I know. She has several lung infections and things are not looking good. Her parents are struggling as well. I know they are sleep deprived and stressed beyond any human capacity. Mom's name is Neena and dad is Terry. If things don't turn around quickly......Please pray even harder now.
www.caringbridge.org/va/taylor
Love in Christ-
Alison
Wednesday, August 20, 2003 11:31 PM CDT
Grant and I were thinking of Alexandria a great deal already tonight, and had shed many tears by looking at all the pictures we have taken on our digital cameral for the last couple of years. Then we got on the website and saw that "Quilts of Love" had left a guestbook entry for us stating they had made a quilt in Alexandria's memory. "Thank You, Thank You" to the wonderful angels at Quilts of Love. You can go to the memorial quilt they "quilted" for Alexandria and see it for yourself, it is absolutely beautiful. I loved the poem, the pictures, and the song they chose, basically everything about it. The song is "Thy Word Is a Lamp Unto My Feet." I sang this song over and over again to Alexandria in her final hours.
For those of you that are not familiar with the song it is frequently sung by Micheal W. Smith and Amy Grant and goes:
Thy Word is a Lamp unto my feet
and a light unto my path
Thy word is a lamp unto my feet
and a light unto my path
And when I feel afraid,
think I've lost my way
Still your there right beside me
And nothing will I fear
as long as You are near
Please be with me 'til the end.
I will warn you before you go to their website though, I am on my second box of kleenex here. Thank you to everyone at Quilts of Love who so graciously spent their time and talents creating such a wonderful keepsake and remembrance for us. You truly are "Alexandria's Angels" and all the other children's Angels whom you have encountered.
Sometimes it is all just so hard to believe. Tonight I looked at pictures of Alexandria before she got sick. They are such a stark contrast from ther final pictures. I looked at the video from her Celebration Of Life. I suppose when you're down and out, mise well go all the way, huh? I know sometimes I am a glutton for punishment. On the one hand, I want to see her to touch her, if only through a computer screen. Then after sobbing uncontrollably for a good long time, I question if it is just too painful right now. I typically only allow myself to look at the video and other things of the sort every so often, a self-preservation mechanism I am sure. The past few weeks so much has transpired. I know it sounds crazy but there are times when my mind finds it difficult to believe that our family has endured all that we have. Then my heart reminds my mind that it is all too real. It is hard to imagine that not only is she gone, but she is never coming back. The pain is overwhelming much of the time. At other times, I think of her and all the good memories flood my mind and I feel so lucky to have been her mommy, so thankful for each day in her 9 and a half years on this earth. Sometimes I do not let myself even "go there." For instance, when taking the boys to school this morning, I did not let myself for one second think of Alexandria (which is very difficult in itself) and how she should be sitting in Crossroads Elementary attending 4th grade this year. I knew the mere thought of her would send me reeling down that path that I just could not go down. I did not want to do that to Hunter or Hayden. Unfortunately, when one of us is sad, the others of us tend to follow suit as if we were all playing the game of "Monkey see, Monkey do." I came home and had planned to do laundry when a good friend called (thanks Nancy) to invite me to breakfast with 5 other moms. At first, I declined thinking of the piles of laundry that really needed to be done and a house that looked as though an earthquake's epicenter pointed directly to 241 Chestnut Hill Drive. I then feared that my previosuly ignored sadness at school would surely be revealed now that I was in the comfort of my own home, so I elected to go and get my mind off things. I am glad I did. I had not seen some of the women for awhile and it was good to catch up. After all, the laundry will be there when I get back (Unfortunately the laundry fairy does not live here). Well, it is midnight and since I have not slept well in a LONG, LONG time, I am going to call it a night.
Please note my new e-mail address:
alisonhaddock@charter.net
Or
chestnuthilldesign@charter.net
Or
Grant's new e-mail address:
ghaddock@charter.net
Quilts Of Love Memorial Quilt for Alexandria:
www.quiltsoflove.com.memorials/alexandria/alexandriamem.htm
Monday, August 18, 2003 8:42 PM CDT
If you detected sadness and a touch of anger in my last entries, you are very perceptive. These feelings I will tell you are not constant, all-absorbing and all-encompassing. They are merely spawned on by events that seem to open the wound and douse it with a little salt to top it off. I appreciate each and every one of you that have personally e-mailed me and thanked me for my honesty. Some expressed that they have experienced the exact same thing. My close friends and close family know exactly where the truth lies, so for the people that matter most to me there is no explanation needed. The main issue started a LONG time ago and has only gotten worse and worse over the years. To address "anonyomous" I appreciate your input and expertise on grief and life in general, however, please know that the cord was cut a LONG time ago. This is not a recent occurence over the last 3 years, it was just exacerbated at a time when the wound should have been closed, patched and forgotten. A second chance if you will. I am only trying to be honest as the parents who have lost a child can attest too. I realize that everyone has their fair share of troubles and issues, but does that exuse us from helping another human being when they need it the most? I know Jesus would give the shirt of his back if someone was in need. Are we not taught at the youngest of ages to "do unto others, as we would have them do to you?" Most do not understand it, nor would I ever want them too. But some of these people do understand. They too, have walked down a path of cancer, or death and dying. They know how people swarm in at the onset of your troubles and how when all is said and done, the funeral has been and gone, very few are surrounding you to show support. It is a fact of life and just the way it is. As Meghan's mom, and countless others of us in "caringbridge land" can attest to, those who have lived this tragedy know exactly how it is. I will not focus on anymore negative, as I am trying to rid myself of the fungus and move on. I did not mean to get some of you "riled up." My intentions were not to be the ring leader of a Jerry Springer episode, just my little 'ol life, my feelings at the time. I suppose if a wound does not heal in a given amount of time, nothing works to heal the wound, then we are left with amputation. Now that the amputation is complete, I will adjust myself and my feelings accordingly and move on. Thanks to my sister Michelle for her support today. I appreciate it greatly. Thanks to some others who wrote me today and simply said "I'm sorry." It really means alot to me and I am grateful for it. Thank you SO much to the BMT nurse who spends a great deal of time with these families and understands the pain and frustration that goes along with this ordeal. I appreciate you letting others know this information. Thank you to all that have given your unconditional love and support over the last 3 years. I am truly blessed and I do realize this with every ounce of my being.
Forever missing Sissy Girl-
Alison
Monday, August 18, 2003 1:34 PM CDT
To "anywhere USA", I don't "expect ANYTHING FROM ANYBODY ANYMORE, that is my exact point. I had to stop doing that after being let down time and time again!!! At least I am brave enough to write the truth and not hide behind "anywhere USA"
By the way, do I detect a guilty conscience?????
Monday, August 18, 2003 1:17 PM CDT
In rereading my entry from last night I want to make some things a bit more clear. I want it to be understood that I am not of the opinion that I am “holier than thou.” I realize that cancer, death and dying are touchy, complex subjects for anyone to address or comprehend if you have not “been there.” I cannot pretend to know how each individual person views these issues and how their actions do not always reflect their feelings. It is hard to describe it so that you all can understand. I know that I have high expectations of myself and therefore others. This is not necessarily a good thing. I know that by doing this I am setting myself up for disappointment. People are human and they let us down, life lets us down sometimes. I am in the process of picking myself up from that, and know that it will take a long time until completion. I know that by writing my feelings here for all to read that I am not always doing the “politically correct” thing. I will not skew things so they look right from those on the outside looking in. They are my feelings, my honest appraisal of the reactions/actions of others while Alexandria was sick and after her death. I am not merely taking my anger of the death of my child out on others. I am not laying blame in lieu of addressing my own issues. I merely want people to understand why I would have such feelings of family members who did not feel the need to be there for us through the 3-year, life-altering event that we have experienced. I don’t think by voicing my views I will make people come flocking to us to do the right thing. I know it will just alienate us from them even more but you gotta do what you gotta do sometimes. I want you all to know that I am working very hard in the forgiveness arena. It is a difficult proposition, one that only God can help me with. I am trying hard not to judge others on what I feel I would do in the same situation. I am working to diligently to “let it go” and not let it affect me negatively. These are hard things to do. So you see, I do not deem myself perfect and without fault. I am FAR from the perfect Christian, mom, wife, friend, and sister. I just feel like I try hard and pray even harder when I fall short of the mark. That is all I can do. It is hard to believe those who have hurt my family in the past could be that self-absorbed, or malicious intentionally. I think in each situation that life unfolds to us, we have a decisions to make. Each individual person and all the experiences they have dealt with in their lives, make them the person that they are. Not one of us have the same suitcase of problems that they lug around with them. Mine is not heavier than anyone else’s. I hope that someday my grief, my “issues” can help another person dealing with a similar situation. If I can help others to understand the significance and importance of being there for families dealing with such tough times, then I feel I have done my job. I won’t dwell any more on this issue, I just felt the need to clarify. Please do not automatically assume that I am speaking to you, because chances are I am not. Furthermore, I cannot stress enough for all the negative that this has brought about, I cannot turn my head on the positive. The Random Acts of Kindness imparted to our family have been such a blessing. Whether our lawn was mowed, food was brought, snow shoveled, quilts made, angels given, a simple phone call, a hug, a smile, a tear shed, a golf tournament planned, money raised to help others, cards sent, the list is endless. To put in mere words and encompass all the good that God and friends have bestowed upon us would be a disservice to us all. I could not have survived if not for the strength of others lifting me up in prayer. For those of you whom I have never even met yet e-mail me religiously, send me a beautiful charm bracelet (thanks Krista !!), and check the website without fail, I am so grateful for. If you have never received such things from perfect strangers, let me tell you, it is an amazing feeling. To know that you have positively impacted the life of another human being that you have never had the honor of meeting face to face…well, it makes my heart sing with joy and thankfulness. I believe that may big the bigger lesson in all of this, to affect those close around you and the circle grows wider and wider. Many children that have battled childhood cancer and childhood illnesses have had this impact on all of us. I have been so touched, so moved by some of these children who fought so hard to live, that it has changed my entire perspective on life. How amazing that we could learn such lessons from a child. Not only because of Alexandria, but all the children I have come to know on caringbridge (I follow about 50 of them regularly) my life has been enriched. I will never take for granted a beautiful full moon, the rising or setting of the sun, a rainbow, the richness of green in grass, and all of the beauty around us daily. I appreciate many things that were previously overlooked. I will carry with me for the rest of my days here on this earth the ability to stop and smell the roses. I close my eyes and I see the faces of the children who have lost their battle here but have gained the ultimate prize of being with our Lord and Savior. I reflect on those children who fought so hard and won against this beast and think how their lives will never be the same. They now know that if they can beat cancer they can do anything they ever set their minds to. What a sense of empowerment. I realize that for the parents of these children, they will forever be concerned with the looming darkness of cancer rearing its ugly head again. This must be tough, but what a blessing to still have their child with them.
In last night’s entry I failed to thank Debbie Robinson for the nice card she sent us on Alexandria’s birthday. I cannot tell you what it meant to us that she remembered. I know she must miss Alexandria. Thanks to Mandy, her nurse at Children’s for remembering as well and leaving a journal message. Thanks to all of those at Children’s Hospital who took such good care of Alexandria and for donations made in her name. We truly appreciate it.
Tonight is “meet the teacher” at school and I am so excited to put last year behind us, and move on to this year. Last year is somewhat of a blur to me where school is concerned because we were so focused on Alexandria. Of course, part of my heart will be aching. I will think of Alexandria, how she would be starting 4th grade and how much she loved school. Last year at this time we were dealing with so much. I remember how I sat in Hunter’s classroom and just wanted to cry. Once again, prayer will see me through.
There is a severe shortage of blood across the country. If you are able, please donate. To those of you expecting a child, please prayerfully consider donating the cord. Currently, it is considered “medical waste.” To others fighting an array of diseases, it is called the gift of life. Just ask little 5 year old girl Alex from Seattle what it means to her and her family. Five times she has had a cord blood transplant. If it were not for each of the mothers who donated their cord, she would probably not be with us today. We are all hoping that this transplant will be her last. It may not always mean a cure but could mean precious time is extended because of something that is otherwise discarded. Please also prayerfully consider registering to be on the National Bone Marrow Donor list. We know of some who can thank an anonymous person for their gift of life such as seven year old, Alex Pearl. There are also the Matthew Pearl’s of the world who desperately need a transplant and there is no match as of yet. We can all do something to help the fight become easier. Whether it be your time, your talent, expertise, friendship, blood or cord, we all can help out in this situation.
Please pray for Deb, a co-worker of Grant’s. She has fought hard in her own battle against cancer in the past months. When she was diagnosed, we told Alexandria about her. She immediately sat down and drew a picture for her that said “Be strong.” We sent it to Deb and she wrote back how nice it was and thankful she was for it. She even hung it on her refrigerator. Apparently, her condition is deteriorating. Please pray that the pain she is experiencing will lessen and give her a sense of peace in her time left here on this earth.
Well folks, I don’t write for a long time and here you have two long journal entries in 12 hours as food for thought. Thanks for listening.
God be with you all-
Alison
Monday, August 18, 2003 0:32 AM CDT
(I began writing this on the 16th and did not finish it until tonight).
WARNING, WARNING, very LONG entry!!!
I realize that it has been a long time since I have updated but it has been a difficult time with our emotions running the entire gamut. It has been downright exhausting, overwhelming to say the least. And now we have the 16th of the month yet again. On the one hand, it is hard to believe that it has been six months since our Sissy girl went home, it seems like yesterday that the nightmare was unfolding. On the other hand, it feels like it has been forever since I held her, forever since I have seen that beautiful, smiling face, forever since I heard her voice say “I love You mommy…. lots and lots and lots.” We miss her terribly. Grant and I went out to dinner with friends to try and keep our minds and hearts positive. This was after a week of being at the Lake of the Ozarks, Alexandria’s second favorite place to be (the beach being her first). Grant had some business to do there and we have been talking all summer about going. So we went. Although we had a wonderful time with the kids, thoughts of Sissy were ever-present. We stayed at a cabin two doors down from where we last stayed when she was with us. We took a pontoon boat out on the lake and swam around just like she loved to do.
For those of you who remembered Alexandria’s birthday on August 6th and sent messages to us, I thank you. I have to be honest, and say that I was saddened that some of the people that I would most expect to remember in some way, shape or form, either did not remember or did not feel the need to share with us. I am not trying to focus on the negative here, but sometimes you just sit back and wonder about these things. For the people who did contact us personally, and took the time to ask us how we were faring ….we thank you !!! I cannot tell you how nice it was to hear from you. There were some who knew that we were having a tough week but elected to do nothing, again I ponder. I guess what I am trying to say here is that sometimes life and circumstances cause you to evaluate seriously the company you keep. One may feel that they know their friends and family. You may feel you are close, and can trust one another. You may feel that because you have shared things in the past, or share a family name, that they will be there when the going gets rough. But when push comes to shove, and the going has been rough for a LONG, LONG time, I can almost guarantee you that there will only be a very select few still standing in your friendship repertoire. It is sad, but true…so true. I guess the most difficult thing about it is, I want to believe that Alexandria was here on this earth for a purpose. I tend to believe that she has changed lives in a positive way. I believe she won souls for God. I believe she taught us all a great deal in her short 9 and a half years. I then think about family, and how a life-changing situation should bring them together, make them closer than ever. This is not always the case. Many of you have asked tough questions about my family and what has happened. I am not talking about Grant and I, we are stronger than ever. I do not even wish to name names here…you know who you are. These are the very people one would expect to be the most helpful, caring and concerned. Unfortunately these people made a decision to not behave as Christians, not as God would have us do. Whatever their reasoning or rationale, I will never be able to understand. However, I can forgive them, that is what Christians do. That is what God wants me to do. I do believe that although you can forgive someone for inappropriate actions and words, you do not have to include them in your life or subject yourself or children to them. When you have been so saddened by the actions or lack thereof, that you are brought to the depths of depression where no one should have to go, I think it is best to not surround yourself or expose your children with those who do harm intentionally or not. I know many of you don’t understand any of this. I know others of you question why certain people are not a part of our lives anymore. After all the questions, with little explanation from me, I thought I would address the issue. I wish it did not have to be this way but I have been hurt so many times, and my children have been hurt so many times, that I can no longer act as if none of this transpired. These were not small issues, little “oopsee’s” , they were BIG issues that have gone on for a long, long time. My point in sharing all of this is to let others know to be mindful of who you share your innermost feelings with. Be leery of those who abandon you when you need them the most. Chose friends wisely…will they be there until the end of your troubles, or are they temporary friendships along the way? We would all like to believe that our friends, and family even more so, have our best interests at heart. That is just not always the case. Unfortunately, some of us had to find this out the hard way. It is difficult to endure not only the pain of losing my daughter, but losing some friends and family to boot. I suppose it is just yet another life experience, a painful lesson. I am disappointed that it took the tragedy of losing Alexandria to make me realize what a true friend looks like and what being a good, supportive family member should be and do. Saddened that it came to this, and that I had to take a stand for what I believe. For those of you not knowing anything of which I speak, I apologize. For those of you that it is directed to, I will pray for you that God grants you a true understanding of others feelings and a desire to change your ways. I will also pray for myself, that God continues to let me know right from wrong, how to forgive others and to remember that life is to short to dwell on things or people that I, myself, will NEVER change. And if God reveals to me that I am at fault for this, I would ask Him for guidance and the inner-strength to say “I am sorry and I was wrong.” I suppose, however, that if a person does not “get it” after the death of a child, will they ever? These are my personal feelings and I apologize to those who may find it offensive. With all of that said, I would never want to minimize the positive affect of people that continue to care about Grant, myself and our family. Those who continue to show your support, who have not disappeared from the scene, we thank you from the bottom of our hearts. The grieving process is not a course that is conquered in a matter of months, and probably even years. I am confident that it will take a lifetime to work through all that we have experienced with the cancer battle and ultimate loss of Alexandria. Your patience, kindness and generosity are a blessing that we are eternally grateful for.
So, on to other issues. Many of you wondered how Alexandria’s birthday went. Let me begin with Friday, August 1st. We decided to have Addison’s birthday party on Friday night because we have always had the kid’s b-day parties on Saturday and felt the need to do something different this year.
Addison’s party was great and a good time was had by all. Monday came and all was well until Grant got home from work that evening. I was sitting on the front porch watching the kids play and Grant said “the monument company called and it is in.” I said “in” as in “in the ground?” He said “yes” and it is beautiful, I just went to see it.” My heart was racing and I felt like I would get sick. I immediately got into the car and drove the short distance to our church, the cemetery as well. I pulled in the parking lot, to the same spot I do every time I am there. Her gravesite is all the way on the other side, yet with perfect clarity I could read the word “Haddock” etched in granite. I walked across the cemetery and it felt as if I was in slow motion. I could not contain the emotions flowing so freely. I walked around to the front side of her headstone. Upon seeing her name “Alexandria Nicole Haddock” and the dates, “Aug. 6, 1993 – February 16, 2003, I fell to my knees and cried loudly. I begged God to help me, to give me strength. I remember it hitting me like a ton of bricks. Reality, once again was staring me directly in the face and I really did not like what I saw. However difficult it was to see initially, I am thankful to God for the hands that etched the stone. They made it so beautiful. These people have also lost a child and I know they understand all too well the pain derived from this finality. After spending a good long time there, I went home and cried even more. Tuesday was a particularly hard day for Grant and I both. With the placement of the monument, and Alexandria’s 10th birthday hours away, things were difficult at best. Thanks to Nancy, who once again, helped by coming over. Now, let me tell you, she was brave and went out on a limb not knowing how we would respond, but asked about Alexandria and the day she came into this world. What joy we got from remembering how blessed we felt on August 6th, 1993 when we welcomed Alexandria into this world. Grant so enjoys telling everyone the story of how she was “frank breech” and had to be delivered c-section. On the way to the hospital for this planned event, we went to McD’s for a # 3 (supersized I am sure) against my doctor’s wishes or knowledge (shhh, don’t tell Dr. Cernik). He loves to tell how we ran out of film right before she was being born and Grant unstrapped my hands from the table so I could re-load the camera. (he did not know how to work my camera!!) Thanks Nancy for asking us about her birth. We love to talk about her; it helps to keep her memory alive.
On Wednesday, we decided to do something positive, something fun after the past two days and all the tears that it had brought. We took the kids to Six Flags and we all had a great time. We road down the Log Flume’s massive hill, all screaming “HAPPY BIRTHDAY SISSY !!!!!!!!!!!!” We have pic’s, we’ll post later. We had planned to have a small service at the gravesite that evening with a few family members and friends. We had everything planned and set, yet on Tuesday, we decided not to do any of that. We decided to just have our family there. So, later that night, Grant, Hunter, Hayden, Addison and I went to the cemetery bearing 10 large pink balloons. We each held two balloons and sent them to Sissy girl singing “Happy Birthday” of course Sissy’s version with “cha cha cha.” I was glad then, that we only had our family there because we all were crying hysterically and Hunter almost threw up several times he was so upset. We all sat and talked about Alexandria, watching as those balloons sailed farther and farther away. My kids have always been sad when they accidentally lost a balloon. I always told them that a child in heaven would then get it to make them feel better. Now, here we were, sending balloons to heaven, for my child, their sister. It took a lot for all of us to regain composure but we eventually did. I am not sure what the poor people whose homes back to the cemetery must have thought but I felt bad for them having to witness this. We all went home to “enjoy” cake and ice cream and called it a day. And what a day it was………………..
As many of you have seen on the website, there is a beautiful painting of Alexandria. A woman named Jill Norton, who owns a business, “Divinely Done” was the artist. I have worked with her on several projects in my interior design business. She has many works of art in her portfolio but would you believe that Alexandria was her very first portrait? She did an amazing job I think you will agree. I was going surprise Grant and the kids with it for Alexandria’s 10th birthday until…………..well after hanging out with Grant for 15 years (he can never keep a surprise) and after viewing the portrait, I just could not wait to show him. I feel it is what Sissy looks like right now in heaven, pink-tipped wings and all. When I gave it to Grant, I had him come downstairs and the painting was propped up on the couch. He did exactly what I did, his mouth dropped open and he was speechless. A friend and neighbor, Michelle Reiney, had given me a book that so beautifully depicted angels. It got me to thinking about Alexandria as my guardian angel, peaceful and happy in her heavenly home. What would she look like? I asked Jill if she would paint the portrait. I think she did an excellent job rendering a portrait of Alexandria as she looks today. When I spoke to Jill several weeks ago, she said she was having a hard time getting started. She then prayed and asked for the “presence” of Alexandria to guide her and her hands. I sincerely believe Alexandria knew how very important this painting would be to her mommy, daddy and siblings. I know that she was right there with Jill and every stroke of her paintbrush. How could she not have been??? Grant and the kids were thrilled with it. So many friends have said how awesome it is and how much it looks like Alexandria before she got sick. Thank you Jill for putting all that you did into this project. Thank you for realizing that this, above all things, would be my prize possession and devoting so much to it. Thank you Alexandria for guiding Jill as you guide me in my daily life.
Things have gotten a little better in the past week…….no where to go but up from that low. I know these series of “firsts” will be the most difficult. We have made it through Hunter’s B-day, Easter, my B-day, 4th of July, VBS, Addison’s B-day, and Alexandria’s B-day all in six months. Next we will deal with back-to-school time, Hayden’s B-day Sept. 19th, Grant’s birthday which is October 1st (the big 40 !!!!!!!!!!), transplant day anniversary (also October 1st), Thanksgiving, D-Day # 3 - relapse post BMT – December 19th, and I have already started to think about Christmas. Don’t know where we will go…someplace warm, but I don’t think I can/want to stay here. We’ll see. Someone needs to start a "Wish Trip" organization for the siblings of kids who die of cancer. It helps us all to get away sometimes. I am sure the coming months won’t be easy and only by prayer and the grace and mercy of God will we make it through, but we will. We will go on, because we have to, because we need to, because that is what Alexandria would want…..
Please take a moment to pray for all the children battling cancer. Please pray specifically for Connor Ballard, that the BMA comes back clean on Tuesday and that he begins to feel better so he can begin kindergarten on Wednesday. Please pray for Taylor in VA, as she is at M.D. Anderson trying to get on a trial with an experimental drug to extend her life, not cure her. Please be with her parents who are desperately praying for a miracle and that they don’t lose her. She is a relapsed post BMT patient too, about Alexandria’s age, and absolutely precious. www.caringbridge.org/va/taylor
Love and God Bless-
alison
Wednesday, August 6, 2003 7:09 AM CDT
HAPPY BIRTHDAY TO YOU (CHA CHA CHA)
HAPPY BIRTHDAY TO YOU (CHA CHA CHA)
HAPPY 10TH BIRTHDAY ALEXANDRIA
HAPPY BIRTHDAY TO YOU, CHA CHA CHA !!!!!!!!!!!
My dearest and beloved Alexandria-
This is your first birthday in heaven and although Daddy, Hunter, Hayden, Addison and I will miss you terribly, I know you are having a grand birthday party celebration. Later today we will send 10 pretty pink ballons to heaven for you. I hope you like them. We love you so much doodlebug !!!!!!!!
Forever missing my Sissy Girl-
Alison
I'll try to write more later this evening.
Monday, July 28, 2003 8:31 PM CDT
Hello Faithful Followers-
I check the website twice daily religiously and am continously amazed at how the number of hits grows every single day, sometimes dramatically. I believe it was just last week that we hit 170,000 and we are up to 172,000+ as I type. I cannot thank you all enough for faithfully checking in on us to see how we are doing and coping. It really goes to show how much of an impact Alexandria had on SO many people. Blessings, blessings.
There is so much to update on so I will try to write as much as I can before the full affects of the Tylenol p.m. take hold. First of all, last week was Vacation Bible School at Dardenne Presbyterian. I was a crew leader and had a group of ten children grades 1-5. Sometimes I wonder who gets more out of these things, the kids or the teachers? It is an amazing thing to watch children who have had little or no exposure to our Lord, transform before your eyes into believers. It is powerful. It is awesome to think that these children will go back to their parents who may or may not be believers and share their new-found knowledge. Who knows where that could lead. Will the family try out the church, or any church for that matter? What impact does the message illustrated daily for 5 days truly have? I believe it is a message that could profoundly effect them for the rest of their lives. I vividly remember all of the VBS's I attended at Westminister Presbyterian in Cape Girardeau. I had the time of my life and learned a great deal. For some of the kids, I know they were believers before they came last week. I know they come from an entire family of believers. How awesome to see their knowledge increase and grow closer to the Lord through our teachings. Through bible readings, videos, games, singing, dancing and praising God, 375 children heard a wonderful, powerful message. It may save them someday, keep them on the right path, reaffirm their beliefs and enrich their lives. By attending church and these type of events, children are laying the groundwork for the future. It is the foundation that they can rely upon all the days of their lives in good times and in bad. These children not only come to trust God but their leader as well. They trust you with information that they may not trust others with. One day last week in my small group, I was discussing the act of praying and what it can do for our lives and what it means to God. I cannot adequately describe the impact it had on me when one little boy in my group said "I pray every night that I will see my dad again." Wow, did my heart ache for this child who just longed to see his father again, and to feel his love. Another child said that she prayed every night that her aunt and uncle don't get a divorce." I had my own share of grief, heartache and difficulty getting through the week. The first day we prayed in the nave for all the children who would be attending. I went up to the front of the church afterwards and prayed and prayed that God and Alexandria would give me the strength to make it through the week. I told Alexandria that I knew she was right there with me and when I closed my eyes I would imagine she was singing loudly in my ears. Oh, how we all take so much for granted. What I wouldn't give to hear that child belt out a song right now. After I prayed I did feel a calmness take over me. I kept thinking, this is not about me, I have to be strong for these children. I have to make this a good experience for them, too much is at stake. We played games daily outside that had to do with the theme of the day. We played these games in the parking lot right next to the cemetary. Alexandria's grave was just a few yards away from where so many children were laughing and playing. It was not easy I assure you but through the grace of God I was able to restrain the tears and the pain. One of the little boys came up to me and said, "where is your daughter over there?" as he pointed toward the cemetary. I was taken back a bit by the question but retained my composure. I thought it was sweet of him to ask. I actually did pretty good all week, no tears, at least no visible ones.........until Thursday. We sang "Jesus, I adore you, lay my life before you, how I love you." Alexandria and I have sang that song together from the moment she could talk and sing. We would sing the first verse together then I would start and she would chime in, round robbin style. I knew the song was on the VBS tape, and I knew it would be hard to sing, but it did hit me like a ton of bricks. The tears could not be contained or stopped. I had the choir director and the VBS mascot and all my friends crying as well. I quickly got a friend to cover for me and I excused myself to the restroom. As I was crying I thought to myself, "Alexandria did "lay her life before Him" every single day and literally on February 16th. Lori, the VBS director, was so kind offering a shoulder to cry on and a tissue to boot. She said something to me that really made me stop in my tracks and think. She said "Sometimes I get jealous of those in heaven, they are the lucky ones." She is right. How awesome to be in the presence of our Lord and Savior every single day. No pain, no suffering, no lows, all highs. I went and sat down and cried but thought about what she had said. I know that Alexandria has perfect peace in heaven. She is with my dad and they are so happy with not a single care for all these earthly trials and tribulations that we all face each and every day. The person that goes to heaven is now home, it is the rest of us that must suffer on a daily basis and miss them constantly. Although it was an emotionally and physically draining week, I am so glad that I did it. I am proud of myself that I was able to make it through. I am glad to have been a part of the fellowship that goes along with VBS and made several new friends in the bargain. Hunter, Hayden and Addison of course missed their sister, and shed a few tears too but all in all had a great time as well.
We also have some big news to report. Our family welcomed a new member to the Haddock crew last week. She is 30 lbs, white with tan colored ears and face. She is a 9 month old beagle mix and she is adorable despite her desire to chew through, well, anything. We went to the pound to "look" not buy an animal. We walked in and the first dog we saw was wagging her tail like crazy. She was not barking at us like the other dogs. This dog had just come to the shelter the day before. As we waited to play with her alone I prayed for some sign to know whether we should take her home. I then walked by and read the notes on her cage. Three things caught my eye:
1) her name -Abby- (same as Alexandria's best friend)
2) the family had to give her up due to a family member with cancer.
3) Okay, I must admit, this one sealed the deal
-HOUSE BROKEN-
My mind, well actually my heart, was saying, this dog is the one. This was meant to be.....God's plan. The boys have been begging for a dog for so long. Obviously, we could not do it before with Alexandria's situation. Since her first name was already chosen for us, Hunter wanted to give her a middle name. Her official name is:
Abby Alexandria Haddock. So, once again, as if I were not busy enough, I have a baby to take care of. She is a sweety. We will post pics soon.
Well friends, the eyes are getting heavy and there are no toothpicks around to remedy this, so I must retire for the evening. Please know that we do so appreciate hearing from you all and hope you continue to come here to check up on us.
God Bless-
Alison
Wednesday, July 16, 2003 11:30 PM CDT
Well, as much as I would LOVE to erase the 16th off each and every month from now on, I suppose that isn't feasible so I will just have to say extra prayers to get me through it. It is so hard to believe that I have not seen my Sissy girl for 5 months now .... 5 very long months. Actually, today wasn't that bad, I have had much worse. I spent the day with good friends doing what I love to do, shopping and decorating. I also recently joined the Ladies Golf League here at Winghaven and we play Wednesday nights. Well, let me tell you, comical is an understatement. However, I really do enjoy playing golf as I can really take much frustration out on that little ball. Until I hit it in the woods which brings about more frustration and well, you know the rest. I have been playing with a pink ball for Alexandria....her favorite color. I just wish it helped my game out a little more. Alexandria probably came up 100 times today in my conversations with others and I was able to speak of her without shedding one tear. I think of her so much. I wonder if she can see me from heaven and what she thinks about this or that. Although I miss her terribly and would give anything to have her back, I am glad that I can also remember all the wonderful times that I had with her and focus on the positive as well. It is a battle I will face for the rest of my days here on this earth.
And now I am going to do something I have never done before on this website......end quickly !!!!!!!!!
Good Night and God Bless-
Alison
Sunday, July 13, 2003 8:06 PM CDT
Well, as I have said many times before we have good days and bad days and this just happened to be one of those not so great days. It started at church to see all of the kids just a little older than Alexandria singing at the service. Oh, how I wished she was there in that room singing with them. She had such a beautiful voice and I loved to hear her sing. The tears flowed freely again as we sang "Thy Word is A Lamp Unto My Feet." I sang that song to Alexandria as she lay dying in the bed with me that cold snowy February night. I then attended a Vacation Bible School Meeting for the leaders and had to fight back the tears thinking of Alexandria. This will be such a difficult VBS as it is the first in so many years that she has not been to. She had the best time there last year, so full of life and taking in every minute of it. I saw her teacher from last year, Lisa, and once again wished I had the power to go back in time a year ago...before the relapse, before yet another nightmare had begun. I kept asking myself the question, "can I do this?" Can I be a leader this year or will this be too difficult?" I don't have the answer to that, and probably won't unless I try.
The 4th of July brought about many of the same feelings. That particular weekend was the last weekend that our family was without the horrible relapse situation looming over our heads. I remember so vividly Alexandria's laughter, smiles and pure joy when I let her go into the pool waist deep. It was as if she had won the lotto. It was the life lotto and she held the winning ticket. She had not been allowed anywhere near a pool for so long and with my permission to get in, I saw joy radiating from her. I remember her playing in an inner tube and feeling so calm about it. Those of you who know me, know very well how conscience Grant and I were/are about germs and keeping her clean and safe. But that day something in my heart told me to let go and let her be free. If I only would have known what was going to be revealed to us a few days later......I would have let her immerse herself fully and not have her come out until she was a prune from head to toe. We went to the pool tonight and there were very few children there. I watched my own children wishing so much that Alexandria was with her siblings frolicking about on a summer evening without a care in the world. When I go to the pool I see a family whose child had leukemia and is now a healthy, vibrant young girl. I am so thankful for that yet, I can't help but wish with everything that is in me that Alexandria was a part of those statistics.......the one's who won....who beat the odds and survived.
Addison is a reminder each and every day of her sister, sometimes that is very good and other times extremely painful. We also just received our Dream Factory Newsletter. This is the organization who graciously sent our family on Alexandria's Wish Trip in May 2001. She was listed in the Memorial section of the newsletter.....again, hard to read in print. I have been reflecting on last year and what we were doing at this time. It is hard to deal with all of these memories sometimes. She relapsed last year on July 11th and we started ICE (ifosfomide and etopiside). We spent much of the month and a lot of August including her birthday in the hospital from a staph infection that was resistant to all but one antibiotic....Vancomyicin. She was SO sick. She felt horrible for so long. We were so scared we would lose her. I did not take a deep breath for a long while. We knew the odds were stacked against us, but again, Alexandria was tough, tougher than all of us put together and she held on. She fought so hard to live. I am sure that I will sit here on many such occassions and think....think way too hard about what was and what could have been. I know this is all normal. I remember these weeks so well. I remember praying so hard that our friends son Matthew would miracously recover. I remember later in the month, July 22nd, sitting in the hospital with my baby and hearing the horrible news from Debbie Robinson that Matthew had passed away. My heart ached for their entire family and I prayed that our journey would differ from theirs. However, that was not to be. Our path, sadly, followed theirs exactly.
Alexandria's birthday is coming up in a few short weeks. She would have been 10 years old this August 6th. Instead of having a birthday party celebration here at our house, as in year's past, her birthday party will be held at the cemetary and her headstone will be placed in the ground. We will have Addison's 4th birthday on August 4th, which I am sure will be difficult as well.
Daily we receive things in the mail addressed to Alexandria. Her Highlights magazine, and her "last issue" (thank goodness) of American Girl just arrived. I have received spam e-mail messages for her and even received a call from a modeling agency (don't even know how they got our phone number) wanting to know if she was interested in pursuing modeling. UGH !!!!!!!!! These are just painful, everyday situations, that I am sure most of you would not ever think of. I wouldn't either until I was forced to. So, along with the every day ache in my heart there are all these other things that transpire frequently that are thought provoking to say the least and require a good amount of tears to work through. I know you all will continue to hold our family up in prayer as you always have and I thank you for that.
Love and God Bless-
Alison (mom to Angel Alexandria)
Wednesday, July 9, 2003 10:49 PM CDT
As I recently reviewed the last entries it is quite evident there is anger, frustration, sadness and a heart that is broken and in need of repair. Although I will not apologize for writing the truth, what is not so evident through my journal lately is all the wonderful blessings that have come from such a horrible and unthinkable situation. Not near enough times have I thanked all of you who are so devoted to this website, devoted to this family. Too few times I have elaborated when I have met or spoke to someone near or far that follows this website and the impact it has had on them or on me. Neglecting these key and vital depictions of the truth is a disservice to myself and more importantly Alexandria. She would want you all to know that her life was never "for nothing." That through her pain and suffering, some good did come. In an effort to inform you of the negative issues, I have somewhat neglected to share all the gifts that have been bestowed upon us. They are well worth including. What I am talking about is the people who call me daily, just to check and see if I am okay. These people realize that this grieving process can turn on a dime without warning. There are many ups and downs even in the space of a day. All too frequently you hear a song or see something in your home and the tears start flowing uncontrollably. You do not always feel like picking up the phone and calling a friend "yet again" for a shoulder to cry on. The blessing is knowing those individuals are there. No matter what I say, no matter what I do.....good mood, bad mood, average mood, sad mood they are right there. Just knowing you have a reliable support system readily available is a tremendous source of comfort. Countless tears have been shed to my close friends, and I thank each of you for being there. I am grateful for the quilts and pillows were made by relatives and a church member, just because....because Alexandria made an impact on that person and I am thankful. For the decorative angels that friends old and new have sent me.....I cannot tell you what each and every one of them have meant to me. Some were made by your very own hands, some were made especially to represent Alexandria with beautiful pink-tipped wings. Each of them, no matter where they are physically resting, our garden, her gravesite, or our mantle, hold a very special place in my heart. Your kindness takes my breath away. For those of you keeping Alexandria's name alive by continuing the "Alexandria's Angels Foundation" and annual golf tournament, I cannot say thank you enough. Words could never adequately describe the level of appreciation that Grant and I have for each of you. I suppose that in my ranting and raving journal entries, albeit necessary for healing, I should have also included some of the positive. I do not want to discount these issues in any way, shape or form. These acts of kindness have helped in the healing process. The generousity shown to our family has gotten us through the day sometimes. You just never know what kind of impact your actions or words can have on a person and I feel the need to share how grateful I am for it all. Do not ever think that these acts have gone unnoticed, not only have we noticed, but Alexandria has noticed. She has a wonderful perspective from her heavenly spot. She see's all these things and I know she is grateful too. I know that God and Jesus see what each of you has done. I believe they are saying "nice job my child, this was my purpose, you have done well to help someone in need." To those of you whom I have never even met, yet you send me
e-mail messages of hope and encouragement I say "thank you." For the faithful "Alexandria's Angels" followers, you are awesome. I hope no one ever has to walk in the shoes I have been wearing since November 7th, 2000. If however, God's plan for you includes a bump in the road, I do sincerely hope that the soles on your shoes become thick quickly and people show you the same love and caring that has been so generously shown to us.
To my wonderful husband, Grant, whose heart is as broken as mine, I thank you as well. I thank you for loving our daughter SO much. I thank you for always lending a shoulder to cry on. I thank you for letting me lean on you when I am weary and for helping me to carry on. Thank you for picking up the slack when I cannot. Alexandria thought you were the most wonderful daddy in the world.....she was always a good judge of character.
Love and God Bless Each and Every One-
Alison
Tuesday, July 1, 2003 7:26 PM CDT
Although I spelled out fairly clearly some of the main reasons why Grant and I are so completely and utterly sad and dissappointed in Alexandria's treatment, I also neglected to mention other issues due to time constraints. I sincerely believe that the current method of how a patient is treated post-transplant is inadequate. We had seen several children, even close friends (Matthew H) all around us relapsing after transplant and before the day 100 mark. Given that real fear, Grant and I on almost EVERY appointment following BMT would ask the question to the coordinator (we never saw the BMT doctor post transplant, big surprise), What about relapse, what about relapse, WHAT ABOUT RELAPSE ?!?!?!?!? I knew they felt like we were being overly concerned as usual but we did not care we still kept asking and they kept saying, we looked at day 30 and she was 100 percent engrafted, she is fine. Grant and I were not trying to be negative only realistic given the history and other's history. We asked on SEVERAL occasions if we could please check to see if things in her bone marrow were looking okay. Their reply was, "her counts look good, she looks good." We felt like there was just WAY too much time between Day 30 and
Day 100 for things to go awry. They seemed not at all concerned and said "that is just the standard times to look at the bone marrow." Well, I am NO rocket scientist, and I am NO doctor, however, it would only take a person at the ripe old age of 8 to figure out that if you wait too long to find out "what's going on underneath the hood (in the bone marrow), it just may be too late.....and it was. By the time the figured out what was going on she already had blasts spilling over from her bone marrow to her peripheral blood. If they would have only checked sooner they may have been able to induce some GVHD (graft vs. host disease, which could cause the donor cells to fight the cancer again). If only they had looked sooner and saw that there were "girl cells", and they should only be seeing "Hunter's boy cells" it would have been conceivably possible to get some GVHD going by weaning her off the cyclosporin, possibly getting her back into some sort of remission and doing a DLI (a donor leukocyte infusion, more of Hunter's cells infused into her) therefore fighting the cancer. When she relapsed, she was only 8 percent Hunter's cells.......THIS DID NOT HAPPEN OVERNIGHT!?!?!? Our concerns were again disregarded. Just as they were in the beginning, when many doctors at other institutions were saying "first remission is your best remission, get her to transplant," the scare we had in April 2002 when her MRD (minimal residual disease- disease still present after 1 and a half years of extremely HIGH DOSE chemotherapy treatment, came back higher from St. Judes than the previous two MRD studies on her, again at relapse, and again when deciding on a preparitive regimen (most of the kids that we know that had the heavier prep regimen are still alive if they went in relatively healthy (major organ healthy), and once again in the end when denied the experimental treatment. I realize that it is many "if's" and much questioning but I do know one thing, Grant and I ASKED them to look more closely, we ASKED them to do a bone marrow aspiration at day 60 and they said "No, it is not necessary," but it WAS necessary. If only we could have found out this information sooner, we feel as though we could have had more options. I just want people to understand how incredibly frustrating this situation is. The fact that the letters M.A. are behind my name, not M.D. do not mean that God did not give me common sense. I also believe He gave me the mental tools to take the very best care of my daughter that I possibly could. Included in that are defending my motherly, gut-feeling opinions. I still felt in my mind, heart and soul that we were going to regret not checking things out more thoroughly at an earlier time. And although our request was denied, I feel that Grant and I should have found someone at another institution to do the job they wouldn't. By posting this information and my feelings I am not trying to "doctor bash" or "hospital bash" I just want to fairly warn others going through a similiar predicament and caution them against putting their complete faith in the people that they have entrusted their child's care to. Even educating ourselves to our fullest capacity through books, research studies, other protocol research, other hospital inquiries, it just was not enough. Too many decisions were not made in appropriate time frames. To the doctors, I am quite confident that some of them have the "win some you lose some attitude", however, Grant and I must every day for the rest of our lives ponder the "what if's" and the coulda, woulda, shoulda's." It is a hard way to go, but just a reality my friends. This is the way it is. I must listen to my daughter who is not yet even 4 years old, and the EXACT mirror image of Alexandria (looks, walks, talks, acts) like her, as she is singing songs that she made up herself and sings when she thinks no one is listening. The words go like this, and I quote,
"Every body needs a big sister,
I need mine back right now,
But she has gone to heaven,
and she can't come back somehow.
I really need my big sister,
to tuck my in again and
sing my favorite lullaby
I really miss my big sister
but she can't come back home some how."
and then she begins crying........
and then so do I.......
My heart is crushed into pieces to hear her sing this song that she made up herself, out of the blue. Or to have the conversation with Hunter that went like this recently... I said "Wow, I can't believe I am going to have a 3rd grader and a first grader in a few weeks" to which Hunter replied, " I only wish you had a 4th grader Mommy. "Me too," I said, Me too.
Forever missing my Angel Alexandria
Alison
Wednesday, June 25, 2003 9:47 PM CDT
Hello to everyone-
Now, before you go judging, attempting to wash my mouth out with soap (for cursing in my last entry), or signing me up for anger management classes, hear me out. First of all, there is no need for unnecessary alarm, my words and attitude are a reflection of normal grief. I realize this and hope that you do as well. Secondly, I do mean what I say about the way things are handled among the medical community. As our doctor at Children's so rudely and calously put it, " At the end of the day, we are all just researchers." In other words, we'll do "status quo" to help your daughter and that is about it, after all she is just one of many guinea pigs in our big experiment we call medicine. Well, that was not good enough, now was it? There are doctors out there, that truly CARE about their patients. KG who replied to my entry last week, happens to be married to one. He did not stop until he found out what was wrong with Kristan B. who had a rare disease requiring a BMT. He researched it until an answer was found. I can completely understand why his wife believes in him and the measures he takes for his patients. It must be difficult to be in those shoes. Dr. Wilson at Children's also goes the extra mile for his patients. When Matthew relapsed he made phone calls all over the country trying to find ANY protocol that he would be eligigble for. He tried even experimental things realizing that," No, we do not know for sure if those drugs would have a negative impact or a positive one." However, he knew that the result of doing nothing would most certainly be a negative, fatal outcome. Dr.'s Bergimini and Hanson at St. John's, I truly believe, would do ANYTHNG for their patients and their families. I do not know these doctors personally, just know enough of their patients to know that they go above and beyond the call of duty. Debbie R. at Children's truly cared about Alexandria. She cared about how she was feeling, cared about curing her. Alexandria loved her so much. There are people, I believe, that have God given talent to work in this profession. I must be honest when I say there are those who truly have no business whatsoever having contact with patients and their families. If they want to further scientific and medical advancements, they should be in the lab doing just that. The fact is, my anger stems from a point of dissappointment with our "medical team." When push came to shove....they would not even SPEAK to our family. The BMT team just dissappears when your child relapses. They are like "Oopsy, looks like we have ANOTHER relapse....if you (the hemoc docs) CAN get them back into remission, then we'll take time out of our day to come up with a game plan....or actually talk to them." I felt like our hemoc doctor and the BMT team should have been making calls all over this entire country trying to find out if ANYONE was having success with ANYTHING concerning an early, post-BMT relapse situation. Instead, guess who made the calls ?!?!?!? It was Grant and I making the calls. We finally find a world-renowned expert on BMT and she gives our doc advice and our doc won't even consider it. Actually, that's not true, she considered it when on the phone with the Duke doc, and then proceeded to retract those statements the next day. It just makes no sense at all to me. WE lost precious weeks because of this. I lost precious time with my daughter because of this. By the time we got to Dr. Kelley, it was just too late. Too much of her system was starting to fail, too many things can go wrong with a ZERO ANC and a body full of blasts. And it did. I am sad and mad that we did not try the chemo with Dr. Kelley sooner. We knew all too well from previous experiences that you just can't mess with no immune system. If they look good today, ya better "chop chop puddin pop", because tomorrow may be a whole new ball game. You have one chance to do it right, so you better take it while you can. She had a history with no immune system and we explained that very clearly. Red tape had to be cut before we could proceed and it was that very red tape whose end was wrapped tightly around her very life and contributed to her quick demise. And yes, I will not lie, it makes me angry. Up until now, I have just been sad about it, all the while Grant readily admitted he was flat-out angry about it. I am now leaning towards his side. Most caring parents would feel the same. I hope not one single person reading this EVER has to endure this horrible situation. For those of you who are/have lived it, you know EXACTLY what I am talking about. I do want to be CRYSTAL CLEAR about one thing though, I am not, nor have I EVER been mad at God for His plan and the way things turned out. I believe that is a misconception towards many of the bereaved parents. Certainly there are people who ARE angry at God, and guess what? That is normal too, so please do not judge those individuals.
I realize that with time and probably a WHOLE lot of counseling, my broken heart can be mended somewhat. It will never be fully whole again, for a piece of it died with Alexandria. There is a hole, a void, that can never be filled completely. Does that mean I cannot function as a good mom, wife, friend, Christian.......I do not believe so. Just like every situation in life, it makes us who we are. I knew from the moment Alexandria was conceived that she was not mine forever. I knew she was His. She belonged to Him from day one. She was on loan to me. Just borrowed time. A short period of borrowed time, a mere nine and a half years. I know that God will never leave me or forsake me. I know Alexandria is part of His plan. Her dying is the part of the plan that I must learn to fully accept. It is a daily struggle, however, we are having many good days as well. I just do not want to give the impression that we are wallowing away over here in our own grief and self-pity. We are carrying on, we have three beautiful children who love us and need us and we will make it through this difficult time with the love, support and genuine understanding from people like you.
Please take this opportunity to pray for the many grieving parents that we have grown close to in the last almost 3 years. Please pray for the families still enduring the nightmare. Pray their children beat the odds stacked against them and win this battle. Pray for those families with children who are newly diagnosed and feeling overwhelmed, sad and scared and whose entire lives changed in a split second with the words "childhood cancer." Say a prayer of thanks that each of the beds in your home have a child tucked softly and sweetly in them at this very moment. They are all a blessing.
God Bless-
Alison
Monday, June 16, 2003 8:50 PM CDT
I really don't want to put into words the depths of pain Grant and I have felt this weekend. Let's just say that it was difficult to deal with some events that transpired. The world has lost two more children to this HORRIFFIC DISEASE......Colby Cole, Jacob Mosely, and Akaida have entered into heaven and earned their angel wings. WHY ?????? Why in the hell, is this happening ??????? Why are all these kids losing their battles against cancer?????? Jacob had a transplant at Childen's Hospital, well I am SO freaking sorry but the way I see it they are FAR from picking the code on this cancer / BMT deal. I mean, I am losing count quickly of the MANY MANY kids dying less than 100 days after transplant there. Is this sending anyone a freaking message?? Am I mad???? Your damn right I am mad. I mad that so many kids are dying left and right with cancer and for some damn reason the docs just don't freaking get it ?!@?!@?@#?@ HOW MANY KIDS ARE GONNA HAVE TO DIE BEFORE THEY SAY, "Um HELLO, MAY BE WE SHOULD CATCH A FREAKING CLUE HERE.........THESE AREN'T GUINEA PIGS THEY ARE SOMEONE'S DAUGHTER, SOMEONE'S SON AND THEY DESERVE TO LIVE. THEY DESERVE FOR US TO PUT FORTH A LITTLE MORE THAN MINIMAL EFFORT AT SAVING THEIR LIVES, AND MAYBE WE BETTER GET OUR STUFF TOGETHER AND NOT PUT THEM ON PROTOCOLS THAT HAVE PROVEN NOT TO WORK TIME AND TIME AGAIN !!!!!!!!!!!!!!!! HOW MANY KIDS DOES IT TAKE TO DIE BEFORE THEY WILL WAKE UP, SMELL THE JAVA AND COME UP WITH A BETTER PLAN/PROTOCOL, one that maybe WORKS!!!!!!!!! Or EVEN A MODERATE CHANCE OF WORKING!!!!!!!!!! I am real sorry for those of you who do not understand my views but it is the way I feel. Talk to a cancer kids parent for a little while, and you'll understand where we are all coming from. We have just have not seen too many kids making it past the 100 day mark without relapsing and when they do, almost all of them are dying within 2 months of that. IT MAKES NO SENSE AT ALL TO ME, OR TO GRANT.
Grant had to celebrate his first Father's Day without one of his children. The kids and I were supposed to be out of town, and now I am thankful that I wasn't. I actually got sick at the end of the week and I think that it was God's way of keeping me here where I needed to be. We have been missing Alexandria so much this weekend. I know it is just part of the grief process. I think we just expect others to remember the pain you face on a daily basis. I think so many times people see us coping well and getting through life and forget what we have endured for not only the last few months, but the last few years. I do believe that those who have not suffered a loss are incapable of fulling understanding of how hard it is.......how hard it is to put one foot in front of the other......how hard it is to face yet another day of not seeing the face or hearing the voice of a child that you so despereately love and miss. Not that I would ever want others to feel this pain.....only to appreciate it for what it is and how bad it can be. I am not sure if it is a self preservation issue......or a "just can't go there, just can't deal with it thing" but sometimes it really hurts that people don't even try to understand which only compounds the sadness. I don't really feel like writing much more about it.
To Grant.....aka Daddy-O, lolly and squishy (names Alexandria called you, of course) you are THE BEST DADDY IN THE WORLD !!!!!! You gave every single thing you had to our precious daughter and more. She loved you SO much. I do not think I have ever seen and daddy and daughter so
close. She trusted you with her life. If love alone could have saved her, she would be here today. I know how much you miss her, and I am so sorry that she is gone.....
Happy Father's Day honey......I love you !!!
I did just see this beautiful poem on Matthew's website and wanted to share it here.
Stood By Your Bed
I stood by your bed last night,
I came to have a peep.
I could see that you were crying,
you found it hard to sleep.
I sang to you softly
as you brushed away a tear.
"It's me, I haven't left you,
I'm well, I'm fine, I'm here."
I was close to you at breakfast
I watched you pour the tea.
You were thinking of the many times
your hands reached down to me.
I was with you at my grave today,
you tend it with such care.
I want to reassure you,
that I'm not lying there.
I walked with you towards the house,
as you fumbled for your key.
I gently put my hands on you,
I smiled and said, "It's me."
You looked so very tired,
and sank into a chair.
I tried so hard to let you know,
that I was standing there.
It's possible for me to be
so near you every day.
To say to you with certainty,
"I never went away."
You sat there very quietly,
then smiled, I think you knew...
in the stillness of that evening,
I was very close to you.
The day is over...
I smile and watch you yawning.
and say, " Goodnight, God Bless,
I'll see you in the morning."
And when the time is right
for you to cross the brief divide.
I'll rush across to greet you
and we'll stand side-by-side.
I have so many things to show you,
there's so much for you to see.
Be patient, live your journey out...
then come home to be with me.
Author Unknown
To Debbie,
Thanks for sharing the poem with all of us, I know you know how I feel.
Thursday, June 5, 2003 10:29 PM CDT
Dear Lord-
Included in my prayers tonight as I sit here and weep at this computer, are the families of the three boys that lost their battle to cancer this week. They all fought for a long time, some for years. I know you know them......you know everything about them. Their parents are sad and grieving heavily for this loss. I know that Anthony who passed away on Monday, Jalen, who passed away on Tuesday and Ryan who passed away on Wednesday are handsome little angels forever healed of this dreaded disease. I know they are not suffering or in pain. I am quite confident that Alexandria has met them and has signed up to take good care of them and watch over them. I am not worried about these precious young boys, Lord, for I know they are in your care and they are Home. I am, however, concerned for their mommy's and daddy's because I have felt this pain and I would not wish it on anyone. This searing pain is like no other. Yes, it comes and goes and we do have relief from the pain, but it returns with a song, a picture, a book, a scent, a single thought.....the feelings rush in and are uncontrollable. Losing a child, Lord, is hard and painful and I suppose there are reasons, ones that will not be revealed until it is my time to meet with you and I am called Home myself. My heart aches tonight to learn of three more families who are facing such harsh and difficult realities and turn of events. Lord, please comfort them and show them your grace and mercy. Please see that they are surrounded by friends and family who will console them. I pray that these childrens' siblings feel the presence of You as well and that in time will heal.
In Jesus' name I pray-
Sincerely-
Your child and forever mommy to Angel Alexandria
Sunday, June 1, 2003 9:30 AM CDT
As I have gone back to look at previous journal entries I realize that it is at times of greatest sadness that I tend to write in the journal. Of course, when I am happy I am usually busy or preoccupied with my time and do not have time to reflect and therefore write. So, I do want to say that we do have many days that things seem to be bearable and we are coping very well. We can smile, we can laugh, we can remember and talk about Alexandria and all the wonderful things she represented and continues to represent even after her death. As I awoke this morning, my mind quickly went to her, as per usual. When my eyes opened, I was looking at the pictures we took of Alexandria, Grant and I when she was being baptized on Christmas Eve of 1993. We set that tradition with her and all of our children were then baptized on Christmas Eve. Back then it was just the three of us. She was such a happy-go-lucky baby. She had that smile.....that contagious smile that instanly warmed your heart. She had beautiful big blue eyes with long eyelashes. I miss that face, that smile.
As I said before, I have been keeping myself extremely busy with my business. It has really taken off and I am so pleased. It is therapeutic for me. To do what you love professionally and enjoy every moment of it does not happen to everyone. I am blessed. Thank you to all of you who have requested my services. I sincerely appreciate you entrusting me with your homes and projects.
I came across this poem and was so moved by its words and true meaning that I wanted to share it with you.
Grief Is Like a River
by Cynthia G. Kelley
My grief is like a river-
I have to let it flow,
But I myself determine
just where the banks will go.
Some days the current takes me
in waves of guilt and pain,
But there are always quiet pools
Where I can rest again.
I crash on rocks of anger-
My faith seems faith indeed,
But there are other swimmers
Who know that what I need
Are loving hands to hold me
When the waters are too swift,
and someone kind to listen
When I just seem to drift.
Grief's river is a process
Of relinquishing the past
By swimming in Hope's channels
I'll reach the shore at last.
I honestly believe that our families shore will not come until we get to heaven and we are reunited with Alexandria. However, in the meantime, we all have a great deal of God's work to still do here on this earth. We are just not done yet. Until that time of complete rest on the shore, I will forever be missing my Sissy girl. I will fight hard to stay adrift in the strong currents that try to pull me under. I will rejoice and breathe deep breaths of thankfulness when I am treading in the quiet pools.
Speaking of God's work, I know that many of you check on our friend Kailie Rhines and her family. Their son will be riding today with the Team in Training in Tahoe. They were planning last week to all drive there as a family for the event. Well, we all know what that means.....we know the word "plans" is a tricky subject when it comes to children with cancer. When you make "plans", God reminds us that it is only His plans that matter. Kailie went into the hospital with fevers on Tuesday, just 48 hours before they were to leave. On Thursday, they were told by their doctors at St. John's that she would be discharged from the hospital.......YEAH !!!, relatively short stay; Bummer, the doctors were discouraging the family from driving due to the fact that Kailie would be on i.v. fluids and i.v. antibiotics. The doctors did call many E.R.'s from here to Tahoe. In case of an emergency, they wanted to have hospitals familiar with the situation in order to get the best and most appropriate care. Well, many hospitals said they would not take her as a patient under the circumstances, probably for liability reasons. So, I received a call from Nancy stating the situation. Now we had a job to do. Nancy, her cousin Katie, myself and Grant (and countless other people we are unaware of) got on the phone and went to work calling friends with frequent flyer miles, airlines, private jet companies, you name it, trying to get two tickets to Reno for Kailie and her mother. In the meantime, another patient, Jay, and his mother, Kelly overheard the conversation and quickly offered her frequent flyer miles to them. GOD IS GOOD !!!!!!!! When huge corporations were turning us down, it was a mom and child, who they themselves are in this "cancer boat", who stepped up to the plate and saved the day. A huge thank you to them for their generousity and compassion. Is it not amazing to see God's plan and people's work for His plan in action? Thanks to Katie and Nancy and anyone else who worked so diligently to prevail and get this family to Reno. Unfortunately, John and the boys had to drive the 30 hour drive straight through and then their oldest son was to be in the race. He certainly gets an award for perserverance in my book !!!! I cannot wait to hear how things go today. They are a wonderful Christian family who always requests prayers for our family, for which we are eternally thankful for. Please pray for a wonderful race to raise money for The Leukemia and Lymphoma Society and safe return home for the Rhines Family.
To my dearest niece Sidonia, and Alexandria's bestest friends in the world-
A VERY HAPPY, HAPPY 8th BIRTHDAY TO YOU!!! (CHA CHA CHA, as Alexandria would say) WE LOVE YOU SO MUCH !!! Alexandria sends you a big hug and kitty kisses from heaven.
God Bless-
Alison
Thursday, May 22, 2003 6:59 PM CDT
Ugh !!!!! The day I have been thoroughly dreading was here today. Grant and I went to pick out Alexandria's headstone. I am not sure what we were expecting, but I do know there were two very sad parents today. I kept thinking, this is just not right. This day should be 50 years from now and Alexandria should be picking out my headstone, not the other way around. We went to three places as we just did not see what we were looking for until the final place. There were many tears shed at the first monument company, several tears shed at the second and we had it pretty well together for the third place......wow, they lucked out. There were so many decisions to make. Ones that we either did not realize or allowed ourselves to think about before now. What type of granite, color, size, what to say on it ?? These words will be etched in stone forever, and you just can't change your mind after the fact. There are no trade in's, no second chances to get it right. We just wanted it to be perfect. What is so amazing is that Grant and I agreed on every single aspect of it, which was a relief. The headstone will be pink, heart-shaped, and of course have an angel and cross on it. They had to put a "rush" on it so it would be here for August 6th, which would have been Alexandria's 10th birthday. We are planning a family get together at the cemetary and we will send 10 pink balloons to her in heaven. They did a computer rendering of the headstone and printed it out for us. Nothing can prepare you to see the words of your precious daughter's birth and death on paper, much less permanately engraved on a tombstone. Overall, it was a grueling experience. Grant and I are both relieved that it is taken care of yet sad that we had to ever do it in the first place.
Unfortunately, this was not the only bad experience of the day. While at the third monument company, we received a call from the school nurse stating that Hunter was not feeling well. We were all the way out in Troy, MO when we got the call. We arrived at school awhile later only to see an ambulance and fire truck there. My heart sank to my toes just as it began to race a million miles a minute. My mind quickly saying, "this cannot be for Hunter.....they said a stomach ache, nothing serious." I opened the door and jumped out before Grant even had a chance to put the mini-van in park. I was running into school with Grant racing behind me saying, "they would have called.....they would have called us !!!!!!!" Well, that did not stop my pace. Upon my arrival I was greeted by Mrs. Lillis, Hayden's teacher, and my immediate reaction was "Oh my Lord, it IS Hunter, and she came down to the office to help him. (Hayden was already at daycare by now). I just remember hardly being able to get the words out and wimpering, "Is it MY child, Is it MY child?" Poor Mrs. Lillis had a look on her face as if to say, "why in the world would you say that?" At this point, I was past paranoia and just plain hysterical. She said, "No, it is not Hunter, he is okay, he is okay." She did not know that the nurses office had called me about Hunter. Dazed and confused (and making a complete blubbering idiot of myself I might add), I ran into the office and somehow finally got the point through my head that it was a teacher and not Hunter that the ambulances/firetrucks were there for. Holy cow, like the day had not entailed a wide enough variety of drama, we now have this ????? Well, Hunter came bouncing around the corner and I had to quickly pull myself together for fear of scaring him. A huge "thank you" to Mrs. Lillis, who was so calm, SO nice, and so helpful to offer me to go into the teacher's lounge, a drink of water and a cool cloth. Thankfully I had calmed down and did not need to take her up on the offers. So, that's my day in a nutshell. I think I am headed for bed, where I will hopefully actually sleep and put this day behind me. Tomorrow will be better..... I know it will.
God Bless-
Alison
Wednesday, May 14, 2003 2:42 PM CDT
I really am in disbelief that I just logged on to the website and I was the 150,050th person to visit/hit. I told Grant a few days ago that it was getting close and I thought we would reach it this weekend. I can't believe that we are already there and past on Wednesday. Alexandria would be SO excited. She just thought this website, her very own website, was the coolest thing in the world. She always wanted to hear how many people came to the site and what message they had left her. I feel priveledged that you all keep coming back and sharing your thoughts, prayers and the impact that Alexandria had on your life with me. She touched so many lives and all I have to do is come right here to Alexandria's Angels to see that. I am filled with pride. In fact, a neighbors mother is in town from Florida. I was outside yesterday evening and her mother came up to me and gave me a big hug and told me what this website and Alexandria meant to her, and her life. I just thought that was awesome. To think that you or your child or your words have changed one person's life for the better, would be wonderful and worthwhile. But to know that our family has done this for people who we do not really know or some that we have never personally met, is truly miraculous. I feel honored actually, to be the mother of a child responsible for such an amazing representation of God's Divine Plan. This mother also told me that she appreciated my honesty and that I did not just write what I thought people would want to hear but wrote from the heart. I truly appreciate her taking the time to share this with me. She also stated that her daughter was going to start going to church and they had just bought her first Bible. WOW !!!!!!!!!!!! I just got goose bumps to even write that. They went to our church and talked to our pastor and they plan to be there this Sunday. Well, I suppose my hiatus from church is over. I feel like I should be there as well, tears or no tears (more than likely tears). Amazing how God works, huh? He did not want me to stay away too long did He?? Two weeks was quite enough and now time to pull it back together a be a good, church-goin' girl.
Thanks for stopping by and God Bless You All-
Alison
Sunday, May 11, 2003 9:00 PM CDT
For those of you who did not see it, there is a journal update from yesterday. I cannot believe I have updated so frequently. I received several phone calls today and messages so I thought I would let everyone know that I was doing alright. I did not have to make a decision on whether or not to go to church. That decisions was made for me by Hayden who felt sick. Ah ..... my role as nurse, a role I have played so much in the past and it was that time again. Hayden had a fever and just felt generally yucky. I spent 3/4ths of the day snuggling up with him on the couch and in my bed. I hated that he was sick but thoroughly enjoyed my time with him nurturing and giving extra TLC. Of course, with this being our first fever since Alexandria's last days, my mind was whirling about over concern for him and saying prayers that it was just a virus and nothing serious. I hate to over react, but my mind did go there. As I began to feel physically sick from these thoughts, I decided to leave it alone and put it out of my mind. I will say that I have heard from many of my caringbridge friends who spent their first Mother's Day with one less child. My loss is monumental and is compounded by the multitude of those that are so unfortunately in my same shoes. I wish no one had to be in these shoes. These shoes are painful and seem to lead me round and round some days with no final destination. The other moms had just as difficult of a day, please pray for them as well. Most of the moms that are further out from their child's death seem to be struggling even more so now. It is as if the numbness and the shock of it all starts to wear off. You have time. Time to actually start processing everything that has transpired within the last few months and years of your life. Before, things were almost too hectic and crazy to even let our minds go there. We were on survival mode. I think I speak for the group when I say that sometimes REALITY STINKS !!!!! All day I debated on whether or not to go to the cemetary. I knew that it would have a profound depressing effect on my day, and elected not to go. I needed to be here for Hayden and Alexandria knows that. She would not have wanted me to go there only to walk away feeling so sad. I will go there tomorrow, alone.
I dreamed of Alexandria last night......same dream, the doctor saying she would make it. I was almost sure I would dream about it seeing as I upated the website just before bed and these thoughts were on my mind. That is why I think of her just before dozing off. I feel that then I just may dream of her in heaven. I was picking up some things in the garage today and the overhead light started flickering precisely as I began to think about her. WOW !!! I could not believe it, was she sending me a sign ???? Well, no such luck, a few seconds later, Hunter popped out the door and therefore I knew it was him turning the lights off and on. Bummer.(the garage light switch is on the inside). I am sure that she will give me a sign someday I just must be patient. I am confident that she is just way too busy with all the new angels but I will keep hoping and praying anyways. Thanks to all of you who sent me special messages today. It really means alot. I hope that everyone had a great Mother's Day.
Dear Alexandria-
On this first Mother's Day since you went Home to be with the Lord, something just did not feel right. There was an ache in my heart and someone missing by my side. I hope you have found a wonderful mom-like angel in heaven. I miss you more than anything. I know it does not seem like much time has passed to you......but it seems as though I will have to wait forever to see you again. My heart and soul long for you. To hear your voice one last time say "Mommy I love you, you are the best Mommy ever." My arms yearn to hold you just one more time. To hear your laugh, to see that contagious and beautiful smile of yours I would give my life for. I asked for no gifts this year. The only gift I wanted was one that could not be given or granted. You know what that was. You see, nothing is more precious to me than my children and today you were not here with me. It does not seem fair or right but this is God's plan and I suppose I must learn to live with it. I will see you again someday.....someday. I do not ever say "why you?" I don't really know why I have never questioned that. However, I do have another question for God. Why did He make it so that we could not see the person in heaven after they pass? Just a quick glance to see that you made it okay, and you are so happy to be there. I know in my Christian heart that this is the case, but confirmation would be so reassuring and comforting to me. I suppose I won't have answers to these type of questions until I get to heaven and ask the big guy myself. Until then, every moment of every day for the rest of my life I will miss you. I hold you ever so tightly in my heart instead of my arms. I am the proudest person ever to be called "mom" by you my precious angel.
Forever Missing You Alexandria-
Mommy
Saturday, May 10, 2003 10:28 PM CDT
As the celebration of Mother's Day fast approaches, I am filled with many thoughts and feelings both positive and negative. The way I see it, an I.V. of Prozac or a vat of Mimosa's should see me through the day. I am not sure if I can make it through a church service and almost feel as though I should take the easy way out and pass this time for fear of the negative reprucusssions. It would seem as though being at church would bring about feelings of comfort and joy but I must confess to you all, as I have confessed to myself and God that sometimes it is beyond gut-wrenching levels of difficulty to make it through a service. Knowing that Alexandria's gravesite is just beyond the doors, knowing that her funeral was there....it really just brings back so many memories that make it hard. The music, the sermons.......everything seems to lead somehow, someway, directly back to my precious Alexandria. I think most people are afraid to speak to me for fear of hurting more than helping which I totally understand. I would probably do the same if put in another's shoes. When people do ask how we are doing, I sometimes feel like I am outright lying when I reply "we are doing are okay." Don't get me wrong there are many times that we are coping extremely well. Then there are those other moments that we are struggling to even function at a basic human level....working, spending time with the other children, just getting out of bed in the morning. My morning begins with reflecting on the night's sleep and my dreams. A recent dream included Alexandria which at first thought would seem to be a good thing. It is my last prayer before I retire for the evening......"please Lord, please let me dream of her tonight." "Please let me see her dancing in heaven with pink-tipped wings, let me dream that she is okay, that she is at peace having the best time with not a care in the world. Of course, I envision it daily, it is the only thing that gets me through the day. However, I have longed for months to dream of her. Well, it became a reality last Wednesday night. I dreamed that the doctor came in at the hospital and shouted "the blasts are gone, the leukemia is gone." She followed that quickly with a statement of "she's gonna make it, she's going to live." I fell to my knees praising and thanking the Lord for His mercy. Oh, how saddened and distraught I was to wake from that dream and realize it was just that...a dream, not a reality. I think of the Mother's Day to be and know in my heart that I am the mother of four beautiful children. One just happens to be in heaven, and will not be celebrating with us in body but in spirit this year. There are times when I am so completely struck with the overwhelming feeling of "did this really happen?" "Is she really gone?" It is hard to imagine that after three months this is a possiblity, but it is true. It is then that I must physically and mentally shake myself back into this reality which seems a living hell at times. So many reminders that in one respect I am beyond grateful for, and at other times cannot seem to find the strength within myself to deal with.
Addison and I were in our normal nighttime ritual of reading book after book snuggled up in bed together (Alexandria's bed). On this particular evening she chose the books of "Miss Spider" which just so happen to be Alexandria's favorites. At the tender age of three and a half, Alexandria had the books "Miss Spider's Tea Party" and "Miss Spider's New Car" completely memorized verbatim from the first page to the last. She even recited them ever so proudly at preschool "Show and Tell" one day. I distinctly remember the teacher telling me after school that day that she was in total shock that Alexandria was able to do this and wanted to know how long it took her to memorize. Well, not long I assure you. She was one smart cookie if I do say so myself. With every word of that book that I read, it was as though Alexandria was right there in the room with us. I pictured her in that bed with us all cozy and sunggly and my eyes once again filled with tears. Tears from a beautiful thought, tears of such sadness and longing for her. I miss her terribly. Grant, her siblings, and her close friends miss her desperately too.
Tonight, I think of all of the mother's I know that will be spending the first Mother's Day without one of their children due to cancer and it breaks my heart for all of them. This week has been especially rough. A sweet five year old boy who lives in close proximity to us was diagnosed with ALL. Although I have never met this family, I felt their pain all too well this week. My heart literally ached for what I knew they were experiencing every single moment since the news was given to them. After my initial disbelief, my first reaction was to jump in the car and go to see them. I just wanted to tell them to try and be strong, that they could do this for their child. I wished to tell them no matter how bad things get.....NEVER GIVE UP....never take one doctor's word......get many opinions, their child's life depends on it. I felt the desire to give them all of the information that we have stored in our brains on leukemia and how to deal with this disease and all that in encompasses. I wanted to tell them that I would do ANYTHING within my power to help them in ANY way that I could. However, more than anything, I just wanted to take it all away from them. This is the most difficult thing they will ever endure in their lives. Their "normal" will be different now. Their lives will be defined in time with the "before diagnosis,(b.d.) and after diagnosis, (a.d.), just like many of us describe our lives as the "before kids, after kids." After careful consideration, I worried that they may view me as "the grim reaper, the way things are not supposed to turn out, the bad outcome, a negative influence. On the one hand, I feel that God put me here for a reason. If I do not help others who are experiencing the same situation, then what good am I , what has GOd shown me through this??? On the other hand, all that really matters is how the family feels and if they want my input. So, out of respect for them, I will follow their lead. At this particulatr time I do not feel comfortable giving more details as the family is still dealing with the shock of it all. Please keep this family in your prayers. They, just as our family, will need each and every one. I am thankful that this family does have HOPE. Although the future seems bleak and overwhelming, they have hope for their child. For yet another family here in O'Fallon there is no hope to be gained in their situation. This week, their first grade daughter who attends a school close by, was hit by a truck outside the school, in front of her mother. Again, another tragedy with no words to adequately describe the pain. I felt the pain for this family knowing they never got to say "goodbye", or "I love you", just one last time. I cannot even imagine. Although we had a trying two and a half years with Alexandria's illness, I got to say goodbye, and I told her I loved her a thousand times before she left this earth. I cherish that and will always be thankful for each day I had with her, knowing she could be taken from us at any time. This family received no such opportunity to say these final words. Please also keep this family in your prayers, they will greatly need them as well.
Thank you to Nancy, who, when I was at my lowest of lows this week, was there with all the right words to comfort and console me. Thanks to all the families in our old neighborhood who purchased a garden statue of an angel which was so thoughtful and appreciated. Alexandria's memorial garden in our backyard is now complete with the Pink Dogwood and the Angel statue thanks to caring friends. We did explain to the man who delivered the tree our situation and that if the tree dies we will be greatly saddened. He felt like we had chosen a good spot for it. We will say some extra prayers that it lives as we have heard from several of you that Dogwoods do not do good in this area.
On a positive note, I am working again with my interior decorating business and thoroughly enjoying every minute of it. It gives me such pleasure and I really have a passion for doing it which makes it so nice. I know Alexandria is so proud of me. She loved picking out wallpaper and paint and helping me with projects. I always loved her input on things. She would never blink an eye or think twice when I asked her which fabric or paint color she liked better. She always knew exactly what she liked and was quick to share her thoughts. I always wished that someday we could have a mother-daughter decorating business. That is, if she could squeeze it in between her Christian singing career, being an artist or a vetenarian.
Well, it is midnight and officially Mother's Day, so Happy Mother's Day to all you mom's out there in cyber space. Don't forget to hug your kids a little tighter today.
God Bless-
Alison
Thursday, May 1, 2003 11:30 PM CDT
Well, just when you think that no more tears can be shed. I know I asked for it as I must be a glutton for punishment, but tonight I asked Grant if I could see the pictures from Alexandria's final moments on this earth. He has looked at them several times but I just did not have the heart to. I could not bear the pain of seeing that oxygen mask, remembering those final hours as she struggled for each and every breath, as we waited in horror for her to cross over to heaven into the arms of Jesus. Well, reluctantly Grant shared the pictures with me. Many more tears were shed between husband and wife, mommy and daddy to Alexandria. It brought back so many haunting memories of that weekend, but for some reason I felt the need to see her, as I saw her last. We even looked at the pictures we had taken after she passed away at the hospital and ones of her in her casket. I know for those of you that have not experienced the death of a child it may be difficult to understand why we wanted to take these pictures. At first, I felt it was not appropriate either. However, both Grant and I knew that if we took them we could chose never to look at them, but if we did not take them, we would never have that chance again. We agreed to take the photos. I felt in my heart, until this very day, that I would never want to see those pictures. I felt the pain would be too unbearable. I was right. I cried and cried until my eyes were almost swollen shut. Words could never adequately express the pain Grant and I feel when we think of how much we miss that sweet baby girl. I think of her constantly as I never want to forget anything about her. I talk of her often as I do not want anyone else to forget her either. The kids seem like they are coping well although they say many times how much they miss their "Sissy." They all ask questions that really cause me to stop in my tracks and ponder what they have said. It is so interesting to hear things on a child's level and their own interpretations of life and death. I know they miss her SO much.
I hope everyone is enjoying this beautiful weather in between all the thunderstorms.
God Bless-
Alison
Tuesday, April 29, 2003 7:38 AM CDT
Whoever cowardly signed the guestbook "special prayers", please do not have the audacity to sign our guest book again. Your words did not help us, or comfort us and more importantly my feelings are my feelings......I am NOT asking for ANYONE'S opinions or feedback........surely you realize that. This journal has evolved from updating people on Alexandria's health situation, to now letting people know how our family is dealing with the death of our precious daughter. It is for me to release my thoughts and feelings. I do NOT expect anyone to understand, or have the perfect words...however, I do expect people to have the slightest amount of respect and appreciation for what we are going through. Most people have been so helpful and kind in actions and words. Some things that have been said have just been unacceptable under these circumstances or any other. However, I am a Christian and I forgive, just like I forgive you for your comments.
Alison
Sunday, April 27, 2003 11:28 PM CDT
Things are pretty much status quo here....good days and bad days. This weekend Grant and Addison and I went to pick out a tree in memory of Alexandria. It was a painful experience even though we felt so good about what we were doing. A sincere thank you to the members at St. Mark Pres. who gave us a gift certificate to our local nursery for this specific reason. We looked high and low and all over the nursery as we wanted to find the absolute perfect one. We found a beautiful Dogwood, color: pink, of course. Grant and I cried on the way to the nursery in anticipation of what was to be. The majority of the time we were there I cried (felt bad for the poor man waiting on us, he did not know what to do with me), then we both cried again the entire ride home. It is amazing how some things, even those things that represent her wonderful life can be so difficult. In the end, I know how happy we will be when it is planted in our yard next Saturday. We will enjoy it for years to come. I really thought after Saturday my tear ducts had reached maximum productivity and output. However, I was wrong. Seems as though they had not reached their quota and still had more to give. Today in church, I really did not do so great. We sang several songs that I sang to Alexandria in her final days. If that were not enough, a young girl who had such a sweet and beautiful voice sang a solo. The words were "I am still, I am quiet, I am yours." Well, that's about all I could take. What started as a few tears, was quickly replaced with uncontrollable sobbing and I quickly excused myself. I elected not to return to the service but felt the need to be near my Sissy girl. I went outside to her grave and prayed and talked to her. It is both comforting and hard to have her right there. For so many reasons I am glad she is right there, so close to our home, behind our church. However, it does make it rather difficult to get through the service knowing her grave site is just beyond the door yards from where we sit every Sunday. Poor Grant. When I made my quick escape, he was left there, crying himself, with Hunter and Hayden. Good thing he loves me. It was therapeutic to sit quietly there at the cemetary. I cried a full river and got it out of my system. I was joined later by Grant, the kids and the Whalen's and felt much better. I guess sometimes it is best to just cry like crazy and get it out rather than keeping it bottled up inside. We had a pretty good day today. It was absolutely gorgeous weather for a change. The excessive rain of last week was getting a little old. I thought the nice weather would lift my spirits. Not so much apparently. We found out tonight that several more of our caring bridge friends have lost their children over the weekend. To read their words on their websites is so painful. It is re-living our pain over and over again. I just cannot get past the fact that we have lost so many kids over the last 6 months. It is just unbelievable. We have also heard from other friends that they are having insurance issues, apartment issues (where they are staying post BMT, since they live out of town from the transplant center, etc. As if your child having to go through cancer, a BMT, months of mental, physical and emotional issues among all the family members.....it is the things such as this that are just the icing on the cake. I don't expect anyone who isn't "there" to understand this, but it takes every single ounce of energy to make it through such an ordeal. Then to have your child lose their battle to cancer in the end, after fighting SO hard, for SO long.......sometimes it just does not make any sense to me. I know everyone is trying to say the right thing but sometimes, those words can be so hurtful. My suggestion would be to chose your words carefully when talking to a person experiencing such a horrible loss. I have received comments from even those who have sick children and sometimes I think to myself, "well, that is real easy for you to say, your child is still alive." I know good intentions by everyone is the goal, but you must completely put yourself in my shoes.....and walk this path with those shoes on, to really understand and then offer advice. I am hoping our week gets a little easier, you just never know, but I remain opptimistic. Please pray for the families who have lost a child recently. I know they would appreciate it greatly.
God Bless-
Alison
Friday, April 18, 2003 9:44 PM CDT
I wish I could say this was a "Good Friday." Actually it was a great Friday until 2:00 p.m. when I heard blood curdling screams and Hunter round the corner yelling "it was an accident, I did not mean to." Oh how my heart sunk straight to my toes when Hayden appeared next, covered with blood that was still gushing profusley from his forhead. I could almost not even move. I was paralyzed with fear......and the prayer that quickly went through my head of "Lord, please don't let this be serious, I cannot do this again...not this soon. A quick look at the gash and I knew we were headed straight to the E.R. It was deep....real deep. I screamed what happened about the time Jeanine my neighbor appeared saying, "it was a bat, the metal bat, Hunter swung and accidently hit him." After my initial sense of panic I quickly moved on to "mommy be strong for your child mode." I do regrettably remember yelling at or to my neighbor Tracy to get a towel. He was losing a great deal of blood as I was now covered myself. I could tell by the look in Hayden's eyes that he was way beyond petrified of what was happening. Grant and I quickly jumped into the car and we were off. Of course I sat next to Hayden in the back seat and he was only concerned that I was not buckled and we would be in a car accident. I was holding him and trying to console him and felt to be buckled in, I would be too far away from him. He kept saying "mommy, am I going to die, am I going to die just like Sissy did?" The feelings rushing over my entire body were almost uncontrollable. I kept saying, "No buddy, you are NOT going to die." I felt so bad for him. He repeatedly said this the entire way to the hospital, along with a few other comments about how there was NO way he was getting stitches. I told him that the doctor would just have to look at it and decide. Upon arrival at the E.R. I begged God for strength. I had not been anywhere near a hospital, nor did I want to be, since Alexandria passed. To hear the sounds of heart monitors, oxygen masks, the smell of alcohol made my mind race. I was flooded with overwhelming emotions and felt as though I was going to have an anxiety attack. I kept thinking, "Oh, this is just great, I cannot lose it and panic and make things even worse for Hayden." God pulled me through the storm once again. After I prayed I felt so much better. We got him settled down and settled in to his room at the E.R. What seemed like an eternity was only about 45 minutes and the doctor came in. Stitches, no doubt. Numbing medicine went on as Hayden's blood pressure surely went up....dramatically. For 30 minutes he had to wait and agonize over what was to be. He had never had stitches before. Believe it or not we have only had one other E.R. (other from Sissy's leukemia/fever) visits. That is pretty darn good with four kids. He was the first to get stitches too. I suppose we made up for that statistic ten-fold with Alexandria and all we went through with her. Hayden was so brave and we were so proud of him. He got one stitch for every birthday candle on his cake last year.....six total. He did not flinch or move. He said he knew Sissy was watching from heaven and she would be so proud of him. Grant and I wholeheartedly agreed. He was quite the trooper. Once again, my neighbors saved the day. Tracy took Addison, The Andrasko's took Hunter. I really don't know what I would do without them. When we returned home, Hunter did not want to come home. He was very upset and crying. He felt SO bad about Hayden. We kept reassuring him that it was an accident and we know that he did not mean to do it. He said, " I wish things could just go back to normal, Sissy alive and Hayden without stitches. Apparently, Chris had asked him while he was there if he wanted to pray for Hayden. My heart was shattered into a million pieces when Sheryl told me his reply was "prayers don't work Mr. Chris, I prayed that Sissy would be okay, and she died." Oh, how to explain this one?!?! I realize our prayers are not always answered the way that we want them to be, but explain that to an 8 year old. He has been taught to pray, and so he did, his prayers were just not answered as he had hoped, and I suppose there is a great deal of dissappointment with God for that. We will be working on that one in the near future. I guess it all turned out okay and I am thankful it was something minor, something fixable. We aren't used to that. I do feel somewhat like, "hey, have we not paid our dues? When your child dies, don't you get a one year "by" on hospital visits ?!? Where is our "one-year free pass" on drama and trauma?! I need to know. Fair is fair and obviously I am keeping score here. Hunter finally came home only after Hayden came over to the Andrasko's and told him he was okay and to please come home. Bless both of their little hearts, they are both so sensitive.
Thanks to Jeanine who also helped out after the accident.
Although we will miss Sissy this Easter terribly, I am hoping and praying that the weekend brings joy, happiness and peace to our family.....we need it.
HAPPY EASTER.....HE HAS RISEN!!!!!!
God Bless-
Alison
Thursday, April 17, 2003 0:43 AM CDT
It is 12:30 a.m. and once again, sleep is not to be. I am amazed at the amounts of Benedryl, Tylenol p.m., and prescription sleep aids I am able to take with no success in the sleeping department. So, since I was awake I thought I would take this opportunity to thank the people who continue to remember that the 16th of each month will be painful and difficult for many months to come. It was just two months ago that we lost our precious Alexandria. Sometimes it does seem as though it was yesterday, but most of the time it seems like forever ago that I touched her sweet soft hands, kissed her soft head and steroid induced, round puffy cheeks, or heard her voice and snuggled up to her. We all miss her so much. Today, as I relaxed in the hammock with Addison laying on me, peacefully sleeping I might add, I again reflected on that last 50 hours of Alexandria's short life. Although it conjuers up painful emotions, it also is good for me to remember the events leading up to her death. Many times that weekend plays in slow-motion in my head. It is like the nightmare you cannot wake up from. I want to remember every single little thing about her 9 and a half years of life. Many things we have written down as to never forget the precious memories. The kids bring her up constantly, which is good. I do not ever want them to forget their "Sissy."
This past Sunday at church, weaved into the sermon was the idea of having no regrets in life. This particular subject haunts me. In my mind, I know we did everything we could for Alexandria given our knowledge. On the other hand, in my heart, the list of regrets that Grant and I both have and how we handled her care at certain times is very bothersome. So many times we so trusted what the doctors were telling us instead of going with our motherly, fatherly gut instincts. That is hard to get past. So many times we challenged them and were assured that holding off on tranplant would be the best. We contacted other experts in leukemia and received mixed advice and counsel. Instead of going with what we felt in our hearts, we entrusted her life to the ones caring for her. I vividly remember a medical professional stating that most of the time when kids relapse, they can get them back into remission with just prednisone alone. We somehow felt comfort in that, that if she relapsed we would give her more chemo, get her right back into remission and then move on to BMT. That was not how things turned out though. At times I so wish I would have just said, "I don't feel comfortable with the plan, let's move on to plan B or hospital B. The words of a doctor at another hospital saying "your first remission is your best remission and she should go to transplant (BMT) immediately" will forever ring in my head. I know God has a plan, but He also gave us free will. He also gave mothers the instincts to feel when something is not right. I know what you are thinking, because I have heard it time and again from many of you, that we went above and beyond what most would do under the same circumstances. Or you are thinking that Grant and I are being too hard on ourselves. I will, unfortunately, forever doubt decisions that were made about her care and whether those decisions could possibly have resulted in a different outcome. I will never know until I get to heaven what, if anything, we could have or should have done differently. Until then, I will hold myself accountable. She entrusted her parents and the medical team with her care, and somehow I feel as though we are all responsible for letting her down. I must sort through the feelings and emotions and try to make sense of it all. I am sure it will be a life-long process and hopefully I will gain peace and closure about it eventually.
So many "caringbridge families" have lost their children since Alexandria went "home." It is so hard to see so many others experience what we have been through and continue to struggle with daily. It is so hard to think that this disease has and overall 80% cure rate. I just do not see it. I am constantly in contact with families dealing with childhood cancer and we are losing many of these children. That statistic just does not seem accurate. Of course, we know families whose child is a survivor and for that we are grateful. But there is great deal of children that do not make it and more research must be done. More and more I hear of children being diagnosed and I have to tell you it scares me to death. I am not sure of the culprit for the increase in childhood cancer, but someone needs to be looking closer at the causes of it.
I have decided that it is certainly true that the crowd of mourners and grievers who really care about the well-being of the family does thin out a great deal after several months. I am not sure of the cause, and I believe it is just the way it is. This is not intended to make anyone feel guilty. There are a great deal of you who continue to surround our family with much love and support. There are also those who think from all outward appearances, the family is doing pretty well and do not need the ongoing support of others. I have heard this from so many others, and since I am always honest with my feelings here, I just thought I would share that with you. In many instances, the pain increases before it gets better. The longer you go without seeing your loved one, the harder it can be. The "missing them" just increases ten-fold the longer they are gone. There have been a series of firsts......vacations, Hunter's first birthday without his sister, my birthday without her, the first Easter without her in 10 years that are hard. We must hold on to our faith and trust that God will see us through those tough times.
It was brought to my attention recently that someone here in the St. Louis area contacted a charitable Christian foundation in North Carolina and said that their daughter "Tara" was dying of leukemia and that the child's father had just passed away as well. They stated that they knew my family and other families with sick children in the area. They had a fake caringbridge site and received cash donations and gifts from this organization. Well folks, it is one sick world out there. To think that someone would untruthfully say that their child was sick and they were in need of financial support is just ABSOLUTELY SICK !!!!!!!!!!! Just give me 5 minutes with these people in a locked room so I can given them a piece of my mind. I would like to show them pictures of Alexandria, share what she experienced in the last 2+ years of her life. Explain to them what their actions have done to hurt so many. It is hard for me to even fathom how anyone could be capable of such a horrible thing......it is just beyond me. I will pray these people get the psychological help they so desparately need. Actually, I feel sorry for anyone that would stoop to the lowest of lows, for money.
It is late, or early, whichever way you want to look at it, so I will conclude for now. Please do not be afraid to discuss Alexandia with any of our family. It keeps her memory alive and I guarantee you that I am already thinking of her before you speak. I am already sad, so there is no way that you could hurt me by mentioning her. It would be more painful if no one ever speaks of her, as though she did not exist. Recently, it seems that I only update the website when I am sad. Please know there are many times when I am laughing and happy and life seems good.
Thanks to all who continue to check on us via the website. It means a great deal to us to see that number of visits continue to rise. Thanks to the Whalen's for making a beautiful wreath for Alexandria's gravesite. Thanks to Nancy Cole for Easter decorations there too, (and for taking me to my two favorite places on my birthday, Target and Dairy Queen !!!!)
God Bless-
Alison, forever mom to Angel Alexandria
Tuesday, April 8, 2003 10:50 PM CDT
WE ARE HOME!!!!!!!!!!!! OR, rather I should say "WE ARE HOME,
:( !!!!!!!" The weather here in St. Louis is way less than desirable and I am about ready to pack back up and head South again. I REALLY miss the beach. We had such a wonderful time. The dose of reality since we have been home has been difficult. We have good days and bad days, but mostly good days. We are able to smile and laugh and remember the cute things she would say and do on a daily basis. Addison and I sleep in Sissy's room every night. After I say my prayers I close my eyes and imagine her right there with me. I talk to her, in my mind, of course. I do not want Addison to think her mommy is delusional. I pray every single night that she will be in my dreams. So far, I only dream of times before she passed, not when she is in heaven. The only thing that even gets me through the day is knowing that I will see her again someday, and to know that my dad is taking good care of her. There is no telling what those two are up to. Trouble I am sure. Knowing the social butterfly that Alexandria was, I am sure that she is quite popular with many friends in heaven.
Grant and I went out this weekend with some friends to celebrate my birthday. Some days we are striving so hard to keep some normalcy in our lives. Other days it seems to be harder to get through. Grant put some Easter decorations on her grave while we were gone, before he came down to Florida. I went to her grave the other day and saw them and cried. At first, I was comforted going to the cemetary. At this particular time, it can be just plain sad. While standing at her grave I can see for miles and miles. I can perfectly see in the distance Crossroads Elementary where over 600 healthy children learn and play and wish so much that my daughter was there, with her brothers, at school instead of buried beneath the ground in front of me. With each day that passes, Grant and I miss our baby so much more. Addison would say every morning on vacation, "Mommy, I really miss Sissy, when will she be here?" I suppose at times she is thinking like the rest of us, hey, it has been long enough and we are ready to see her again.......now. Grant and I know we must go on, that we must be strong, if for no other reason than the three beautiful children who are looking at us for guidance in how to handle this terrible situation. Every night during prayers, Hunter says the same thing, "Dear Lord, thank you for giving Sissy the ultimate healing, thank you for letting her spend eternity with you." Thank you Lord for taking her to a better place than here on this earth," and "I can't wait to see you again Sissy." I know the kids miss her so much. We will start grief counseling in a few weeks. I think it will help us all tremendously. In the mean time, it is just good 'ol fashion prayer getting us through the day. Before Grant came down on vacation, he put all the video tapes and photo albums by the front door. He told Ms. Nancy, who was house-sitting, if there is a fire or flood or anything that happens to this house...... I do not care about any other possessions, but please get these boxes out, it is the only thing that matters to me. Bless his heart. He misses her so much. On vacation we reflected on the many little things she used to say and do. We took her to Destin when she was 2 years old and Hunter was a baby. She had such a grand time. One day at the pool she said, "Daddy, sit down, play da wa-wa." I remember vividly Grant and I thinking "Oh my gosh, did she just say a six word sentence at age two?" We were so proud and excited. Since she was our oldest, we did not have much to measure her skills by, but we knew enough to know that that she was pretty darn smart. I am still having a great deal of trouble sleeping. It is nothing new, but the cumulative effect of little sleep makes it hard to even function due to pure exaustion. We'll get through, we will make it, Alexandria would want that for us. I know the pain of missing her will last a lifetime, I just hope we can learn over time to better cope with it. All in all I think the kids are doing pretty good. I will try to update again soon. Thanks for continuing to check in on us and for your prayers and concern. We truly appreciate it.
God Bless-
Alison
Thanks to Ms. Lauren Cole (and Bill and Nancy) for taking such good care of our two cats, house and plants while we were gone.
Saturday, March 29, 2003 7:17 PM CST
I know that this website is therapeutic when I am updating on a Saturday night, on vacation......at the beach!!! Alexandria would not really have appreciated it but the boys and Addison don't mind as they are watching "Max Steel" downstairs. I am upstairs by myself and I have HGTV on and life is really good. I usually don't like the quiet but it is welcomed after a crazy dinner at Pizza Hut with 500 other hungry families with cranky kids.
We left for Mississippi last Sunday. We drove half way and the rest of the way on Monday. Grant flew in to New Orleans Wednesday night. I must say that driving to MS by myself with the children was no easy task. Not because of them....but because of me. They were intrigued with their many movies and music, which unfortunately/fortunately, (however you want to look at it) afforded me the opportunity to think, and think, and think and then I did some more thinking. I am sure that it is no mystery the topic of my thoughts. Of course, Alexandria. There was the MOST BEAUTIFUL sunset Sunday evening. I am quite confident that that sunset was sent directly from heaven and Alexandria to comfort me and quiet my thoughts. On the way down, we drove by the town of Jackson, MO. By the highway was the gymnastics place that I used to take Alexandria when she was 3. We lived in Jackson for a year and to see it brought back many memories. I was also raised in Cape Girardeau so I reflected on my own childhood as we drove by that town as well. Then there was the town of New Madrid where I still have a great deal of family. My father is also buried there. I always stop and go to his grave when traveling on I-55 South. This time, I just could not do it. I knew that the sadness and emotions would be overhwelming and I did not have Grant to lean on. We stopped Sunday night at the same hotel that we always stop and again I missed Alexandria. It was extremely difficult to even make this journey at all. Packing in itself was pure pain and torture. To pack for only 3 children instead of 4.... to not have to pack all the medicines and medical supplies. I put it off until the last minute. Physically leaving was also difficult. So many feelings and thoughts such as "that I was leaving Alexandria behind." Yes, I am well aware that she is in heaven having a glorious time, however, I still had the sense it just was not right. I was concerned about leaving Grant behind, that he would be lonely and sad. I worried that he would be surrounded by all the memories of Alexandria and have no one there to console him. I fretted about the fact that we would be coming to the very place we have brought her and the rest of the family so many times before. Well, I must say as hard as it was to leave, I needed to suck it up and forge ahead for the good of our other children. They were anxious to see their cousins and to go to the beach. I am so glad that I was able to gather the strength and courage to get out of town. We have thoroughly enjoyed ourselves. We all needed the break away from things. Which brings me to my question "WHY IN THE WORLD ARE WE LIVING IN MISERY..... OOPS, I MEAN MISSOURI. It is only when we travel to destinations such as Destin that I ponder the thought of why we live there instead of someplace as awesome and beautiful as this. I feel so close to God at the ocean. Spending time at the beach these past few days has really caused a great deal of reflecting on Grant and my behalf. We both agreed that we were thinking about Alexandria a great deal. Today I kept closing my eyes and I envisioned her running on the beach ....not a care in the world...... free.....NO broviac chest catheter to make her leary of the waves and water, NO chemotherapy in her blood stream to reduce her strength.... Nothing.......not ONE thing to hold her back, just the freedom to run, to play like every normal child should have the opportunity to do. I kept thinking this is it...this is what "Alexandria's Heaven" looks like. She is doing these same things right now and does not have to hear me say 1,000 times "don't let anyone splash you", don't get too close to the ocean or pool, wash your hands, be careful." She is unencumbered by all those earthly details because in heaven there is no concern about those things. There are, of course, the many constant reminders that are cause for tears and pain. For instance, while by myself in Walmart Supercenter there was a commercial (on every t.v. monitor throughout the entire store, so there was no getting away from it) about Give Kids the World. This is the wonderful place in Orlando we stayed on Alexandria's Wish Trip. Then there was a story on kids that had been abducted or were missing. At this point I just broke down and began sobbing. I will tell you this, as horrible as it is losing my child, I believe there is a fate worse than death. At least I know exactly where my child is. For parents to wonder for months or years or a lifetime where their child is, what happened and whether they are even alive or not....I just cannot fathom how they make it through the day. By the time I got up to the checkout counter, as you can imagine, I was a wreck and quite a site to behold when I realized that I did not have on waterproof mascara!!!! I simply waited in that line begging God for strength and mercy and thanking Him that this was Ocean Springs, Mississippi and I do not know a soul who lives here besides my sister and her family. My sister, I am sure, is grateful as well. The woman at the checkout said to me "honey, are you going to be okay?"? I said, "eventually yes, but right now no, I just lost a child to leukemia and I am sad. She said to me "oh my, I know what you are going through, in 1985 I lost a nine year old daughter to Cystic Fibrosis." She said, if you ever need someone to talk to, you know where you can find me, I work all the time. WOW!!! God works in strange ways in strange places doesn't He? I was staring face to face, mother to mother, with a woman who was all too familiar with my pain. She was a reminder that I will make it through this. With God and my family and the many of you out there praying for us, WE WILL SURVIVE THIS. I am confident that it will be a long process but we will all come out on the other side as better moms, dads, and Christians because of the life and death of Alexandria Nicole Haddock. So, although some aspects of this trip, as with everyday living are painful, others are such a great source of joy and comfort. As Alexandria would say and sing "I am a Survivor, I'm not gonna give up."
Tomorrow, Sunday, March 30th, Hunter Graham Haddock turns 8 big years old and we will celebrate. Sissy will be right here with us at the family party on the beach, just as she is with us in our hearts and memories each and every day.
Thanks be to God for that.
Well, I hear Grant singing a lullaby to the boys, which is my queue to wrap it up, get off the computer and get back to family time and reality.
God Bless-
Alison
Grant will post new pics when we get home.
Monday, March 17, 2003 7:27 PM CST
I realize that it has been a week since I last wrote. Last week was difficult, almost unbearable. Grant was out of town on business. It was the first time he had been away since Alexandria’s passing. It is still hard to believe that this weekend marks the one-month time period from her death. This weekend was excruciatingly painful. The dates were the same as last month….we took Alexandria in to the hospital for the last time on Friday February 14 and she died Sunday, February 16th, and those dates lined up again this month Friday, March 14-Sunday, March 16th. Words could never adequately express the pain and degree of sorrow over the past few days…….actually week. It seems as time goes on, things get more difficult instead of easier. I am not sure of the cause, maybe it is just the shock of it all wearing off. Maybe with each passing day spent without my precious daughter is a day that I miss her that much more. On the one hand, I never want her to leave my mind. I want every thought and action to revolve around her to keep her memory alive and here with us. This is a very painful process. There are many peaks and valleys with grieving. You never know what is going to start your mind racing down a path that leads to more sorrow and pain. Just like we road the roller coaster of cancer for 2 and a half years, we now ride the roller coaster of grief. This ride is not any easier. In fact, it is much more troubling. Sometimes it feels like I am in a bad movie…….I am watching the end play over and over again in my mind of Alexandria’s final days and wish SO much that I could change the ending. I desire so much to hit the rewind button and re-write the ending with a different outcome. I want her to be alive, with us. How troubling it is to answer the questions posed by a 3 year old while standing at her sister’s grave. She asks repeatedly, “Is my Sissy under those flowers?” Is she under the ground, mommy?” “I want her here with me, I miss her.” I just could never adequately put all of my emotions into the words that would express how deeply it hurts. To hear Hayden ask with all sincerity, “Daddy, is the hole in your heart getting any better?” Or “Mommy, are you going to be sad and cry every day about Alexandria?” He said these words to me last week after several days of me being noticeably sad. Speaking of last week, I mentioned it was rather rough, yet I did survive due in part to the many friends that tried to keep me very busy. When they did not know my status, or whereabouts, they tracked me down. They were sincerely concerned about my well-being. Super Dave took five kids under the age of 7 out to dinner at Krieger’s (not even fast-food) so that Tammy and Tracy could be here with me. Sheryl and Chris took Addison to play. Nancy even came over in her pajamas to offer her help and support. These are TRUE friends. I am not talking about “talkers.” I am talking about “do-ers.” When someone is going through an ordeal such as this, there will be MANY who “say” they want to help, or do things for you, but true friends don’t always wait for your queue. They do not wait for you to ask, they go (sometimes out on a limb) to do what they feel will help. That can make all the difference in the world. I certainly realize that so many people do not know what to say or do, I, myself, have been there too. But I do feel that this excuse only goes so far. I do not mention this to make anyone feel guilty, I just want people to realize that one person’s actions, words and kind gestures can mean the difference in your entire day. I only wish to help others who will in the future have to deal with some of these issues. If it were not for the wonderful support of so many of you, we would not have been able to survive thus far. So many people have been there to help us that I just could not imagine going through this alone.
In the space of a day, I must think of Alexandria one million times. It is almost all-consuming. When I awake in the morning, she is the first thought that enters my head. I rise out of bed to see her clothes still hanging in my closet. Sometimes Addison and I sleep in Alexandria’s room. Somehow it makes me feel close to her, and feel her presence to be in her room. At other times, it is so saddening and thought-provoking that I cry myself to sleep lying on her bed. I see all of her pictures displayed all over our house, both before and after diagnosis. I go to the grocery store and see the words “savor the flavor” written on a cardboard box filled with popcorn. I pass the “cookie bin” and think back to all the times that Alexandria would ask for a cookie, not because she wanted one, but because she wanted them for her siblings. Of course, due to steroids and her love of food, just about everything I eat or anyone else eats, is yet another reminder. (Especially at Macaroni Grill where a young girl orders macaroni and cheese.) And there are all the many songs, which were constantly played in the car and at home because she loved music and singing. These songs I can barely stand to listen to…….again, too painful. Seeing little girls, around the same age as her, can sometimes be hard as well. Even going to church brings about feeling of comfort and pain all at the same time. Knowing all the people who prayed for her, her funeral being there, singing “Shout to the Lord”, our first Easter season without her in 10 years. As if all this was not enough, (and believe me, I am only sharing a very small portion), to receive solicitations from Monument Companies for tombstones, while necessary, makes things all to real and final.
We continue to receive letters and cards each day from people thanking us for this website, for Alexandria, the sharing of her story and what a difference she has made in their lives. I thank each of you who has taken the time to write such kind messages. You will never know the impact and significance your words have had on us.
A special thanks to Memaw and Pawpaw for watching the kids Saturday so that Grant and I could spend some time alone together. We saw a movie and went out to lunch. It was good for us, but we did talk about Alexandria ALL day. Then we went to the cemetery. We prayed and talked to Alexandria. I am glad that we are grieving very much alike and at the same speed. I can only imagine the resentment and problems that arise when a spouse is able to “move on” more quickly than the other.
On a happy note…………..SPRING IS ALMOST HERE !!!!!!!!!! We are getting a few beautiful days sprinkled in with the dreary days. I have to tell you that if I heard John Fuller say one more time the words “wintery mix”, I was gonna really lose it. John, I know Lisa reads the website, please just fib if the forecast calls for any snow or ice until spring has officially sprung. For Spring Break we are headed to my sister’s house in Mississippi, and then on to their condo in Destin……..I CANNOT WAIT and I am counting the minutes until we leave. Grant will join us part way through the trip which will be nice. The kids and I will be gone for two weeks. We are looking forward to seeing the cousins, my sister and her husband, spending time with them and getting some beach time. We know that it will be hard as well. We have made this trip many times before, never without Alexandria. In fact, one of the last things she said on this earth was that she wanted to go to the beach with her cousin Sidonia.
Take care and God Bless-
Alison
Monday, March 10, 2003 8:02 PM CST
I just want to take this opportunity to thank each and every one of my very dear and devoted friends. Those of you who read the website journal entry from last night could tell that I was a little down. Many of you picked up the phone today to call and check on me. Some of you brought by tea because you knew I was sick as well. Some of you brought me orange juice and medicine (and whoppers candy!!) Some of you watched my children today and others brought us dinner. I just want you to know that it means so much to me that not only do I have friends, but compassionate friends who care about me. How blessed I am!!!!!!
Thanks to all of you.....YOU ARE AWESOME!!! Although I physically feel worse today, emotionally I feel much better.
Our pain is relative to the love of our child and is not a denial of God's grace. God does not promise that His grace will remove pain but rather that we can go on no matter how bad the pain is.
Three times Paul asked God to remove his pain and God said no, my grace is sufficient for thee; for my strength is made perfect in thy weakness. 2 Cor 12:9
Grant is the one who always updates the pictures on the website and since he is out of town, they will not get updated until the weekend.......sorry.
God Bless-
Alison
Monday, March 10, 2003 8:02 PM CST
I just want to take this opportunity to thank each and every one of my very dear and devoted friends. Those of you who read the website journal entry from last night could tell that I was a little down. Many of you picked up the phone today to call and check on me. Some of you brought by tea because you knew I was sick as well. Some of you brought me orange juice and medicine (and whoppers candy!!) I just want you to know that it means so much to me that not only do I have friends, but compassionate friends who care about me. How blessed I am!!!!!!
Thanks to all of you.....YOU ARE AWESOME!!! Although I physically feel worse today, emotionally I feel much better.
Our pain is relative to the love of our child and is not a denial of God's grace. God does not promise that His grace will remove pain but rather that we can go on no matter how bad the pain is.
Three times Paul asked God to remove his pain and God said no, my grace is sufficient for thee; for my strength is made perfect in thy weakness. 2 Cor 12:9
Grant is the one who always updates the pictures on the website and since he is out of town, they will not get updated until the weekend.......sorry.
God Bless-
Alison
Sunday, March 9, 2003 7:31 PM CST
I just lost my update again as I was signing out....Bummer.
Sunday's seem to be the most difficult. It was three weeks ago today that our sweet Alexandria left this world and entered heaven. In some respects it seems like yesterday, in others it seems like a lifetime ago that I held her precious hand and sang her lullabies. I miss her so much. I miss her smile, her humor, her singing....everything about her I truly miss. She is in my every thought. Everything I do and everywhere I go, thoughts of her remain in my mind.
As I write this entry, Grant is boarding a plane to San Diego for the week. He just called a few minutes ago to tell me that they had to switch planes because the other one was broken...GREAT....now I'm REALLY nervous. With all that is going on in the world, I hate for him to be so far away. I was just a little distraught before, but now I'm downright paranoid. It was hard for the kids and I to say goodbye to him, we have had to say too many goodbye's lately.
Abby, Alexandria's best friend came over today to play with the boys. They were always good friends with her too. It was so good to see her. I know she must be hurting deeply, for this is so hard. I kept wishing that Alexandria could be with them running around and playing. I subconsciuosly was waiting for her to run down the stairs and say "Abby and I want to play by ourselves and the boys won't leave us alone." This was a common thing as she found it hard to share her precious friend sometimes.
Yesterday and today I watched Girl Scouts delivering cookies. My mind was flooded with he memories and with the longing for Alexandria and I to sell GS cookies together. I used to be her leader in Brownies a few years ago, when life was easy. Sometimes, it does not even seem real or possible that she is gone and she won't be back. The emotional pain is so intense at times it physically hurts. I know when the pain is unbearable, God, and many friends and family members are there to share the weight of this very heavy burden. Loss is a difficult
thing. I know that God is seeking access to this pain and through His grace and mercy I will make it through. The road just seems extremely rocky and straight up hill right now. I know that sadness is a necessary part of healing.
Mine comes and goes frequently and I know that God and Jesus understand my pain. Sometimes grieving can be a paralyzing mental numbness and other times it is painful yet bearable. I know that God created me in His image to touch the hurts and then grow and learn from them. I know that when I cry I am acknowledging this deep pain and it is a good release of emotions and feelings. Most days I can make it through....the other days I cry enough to make up for the days I don't. Grant and I spent Wednesday night going through boxes of her stuff, her closet and drawers. I found 20, one dollar bills in her drawer. I asked Grant about it and he said that she had been saving her allowance to buy a candle for me. He said they had planned to go many times to get it , but she felt too sick. She had asked him to pick one out for her, if she did not get a chance to. I broke down and sobbed uncontrollably. How sweet is my child? That she would want to do something like that for me. I went out the next day and the first candle I looked at was for $20.00 and I knew Alexandria had sent me there for that specific candle. I will light it daily and think of her.
Well, the streaming tears are rendering it impossible to see and the congestion of my cold along with tears is rendering it difficult to even breathe. I am off to take Benedryl. I wish there was a medicine for loss and sadness. I suppose the only recipe is time.
I will leave you with these final thoughts:
Grief is not an enemy to be conquered.
It is an unwelcomed visitor that will change your life.
-Diane Cole
The tears streamed down, and I let them flow as freely as they would, making of them a pillow for my heart.
On them it rested.
- Saint Augustine
Thanks to all of you are doing so much to comfort us at this time. Thanks to our neighbors who are persistant at getting us out and about. It is greatly appreciated!! Thanks for the men (you know who you are) for being such a comfort to Grant in the last weeks and nights. He has been very emotional on several occasions, yet walked away feeling thankful that there was an understanding and compassion from each of you. A sincere thank you to all of you that continue to donate to Alexandria's Angels Foundation. A heartfelt thank you to all the families that have brought us dinner. Your kindness and generousity is overwhelming.
God Bless-
Alison
Saturday, March 8, 2003 12:25 AM CST
This week has been a relatively good week here at the Haddock Home. Wednesday, my sister Michelle, left to go back to New Jersey. I was sad that day as I have grown accustomed to having her here to talk to and lean on. We attended the Ash Wednesday service at our church. Thursday morning the Steve and DC radio show called me to let me know that Dave Whalen had written a "thank you" letter to Alexandria and wanted to read it on the air to me. It took everything in me not to cry. I knew if I started crying it would be hard to stop the tears from flowing. Dave, thank you so much for the wonderful letter to Alexandria, it was so sweet. I am sure she heard your "thanks" in heaven. I have been able to get out a few times with girlfriends this week. It was nice to be around those who care about me and want to help me any way they can. I did not even cry Tuesday night at dinner (although it took everything in me) even though there was someone playing the piano there.....songs like "Wind Beneath My Wings" and "The Rose." PUH leez!!!!!! Talk about emotions.......talk about depressing!!!!
The kids continue to do well. They have been talking about Sissy and asking questions. Addison just walks around the house picking up pictures of Alexandria and kisses them and says "I love you Sissy." It really breaks my heart to see how much she misses her and understands now that she is not coming back.
I will update again soon, but I am fighting a cold/flu right now and plan on resting. Thanks for continuing to check on us, it means alot. Grant will be out of town all this week on business so it should be a LONG week.
God Bless-
Alison
Monday, March 3, 2003 8:27 PM CST
First of all, I must thank each and every one of you who continue to check in on our family via this website, e-mail or by phone. I may not be able to respond to you, but please know that your kind words and gestures mean a great deal to us at this difficult time. I am amazed that the number of visits is fast approaching 117,000!!!!! Words cannot express how much of an impact that alone has on my life. So many times, after a funeral, in the weeks that follow, everyone else's life seems to go on. People continue on with their normal routines, but the grieving are left with lives forever changed and altered. People typically aren't as attentive as they were before with correspondence, etc, but I must say "YOU ALL ARE FAITHFUL!!" We continue to receive meals, gifts, plants, flowers, and cookie bouquets for the kids. We are receiving many cards in the mail every day as well. We continue to receive donations to the Alexandria's Angels Foundation which has helped our family tremendously and will help other families that are in great need in the future. The outpouring of support that is continuing is much appreciated. It so helps a family with their grieving to know that people DO REMEMBER....people DO STILL CARE. It really makes all the difference in the world. I cannot imagine our lives at this particular time without each and every one of you who are SO dedicated to this family and our journey that you check in 1, 2, 3 (and sometimes even 12- you know who you are!) times a day, to check for updates. I know that you are no longer checking on the status of Alexandria, for each of us know what her status is......a happy and healthy, precious little firecracker in heaven!!! I know that people continue to check in to see how Grant, myself, and the kids are doing and for that we are grateful. The compassion and sympathy extended to our family has way surpassed any expectations we ever had of how things would be if we ever lost Alexandria. I believe, again, this is all part of God's great plan. He wants us to all come together....to look at this loss of life here on earth as a blessing to us all and now for heaven. Alexandria Nicole Haddock has fulfilled her destiny, what her God wanted from her here on this earth. Her mission: accomplished......and in 9 and a half short years.
There is a sign on the door as you are leaving Dardenne Presbyterian that says "You are now entering your mission field." That statement really hit home Sunday as I reflected on those words. You see, I believe, that God allows these situations such as Alexandria's for a very specific purpose. I believe many of us view our lives somewhat differently... we appreciate the smallest of details previously overlooked in our daily living. I think that God wants us to realize, through trials and tribulations what our true potential of being the best Christian and person we can be. Our mission is not always clear and sometimes takes months and years to reveal, yet each of us has within us the opportunity, each and every day, to make a significant difference in our lives and the lives of others. It is a choice we are given by God. Are you working for the greater good in your mission field, your daily living? I do not believe I was even near the field, much less in the field before Alexandria was diagnosed. Her disease brought about changes in myself, family members and friends that would have never come had she remained healthy all of her life. She brought about in me a new level of Faith and believing. Alexandria's statement on the back of her "Celebration of Life" service in the angel wings speaks volumes....
"Mommy, if you had one power, what would it be? Without hesitation I said the power of healing of course!!" She said, "are you sure about that because I would not be who I am today, if I never had cancer." Truer words were never spoken. I believe that holds true for myself as well. Although the pain of losing her is so great that it physically hurts, I know that I would not be who I am today if not for the life and consequentely death, of my preciuos little girl. I am so proud that she achieved more in her short years than many of us will in a lifetime. Her perspective on life is forever etched in my mind. The things she overcame without so much as a complaint. She is my inspiration and the reason I am able to get out of bed in the morning. THAT IS WHAT ALEXANDRIA WOULD DO AND WOULD WANT FROM ME TOO!!!!!! As much as I would LOVE to sit here and have a big huge pity party (and I am confident that I will someday and it will be a healthy experience) I do not believe that Alexandria would want that from me. She would want me to move forward and be a great mom to Hunter, Hayden and Addison. Of course she has seen many tears from me in the last few weeks, I just don't want the tears to outweigh the smiles. I know that these things go in cycles as I have recently moved my research from leukemia to grieving. I just want her to be proud of me and how I am coping with this difficult situation. Please do not think I am not grieving adequately. I feel that we all grieve differently and in different time frames. I am sure that there will be days that I am so overcome with sorrow that it will be extremely difficult to physically function. I just do not want to be so sad that my children do not know what happy looks like and they themselves feel that they cannot move forward. We will NEVER forget her and will hold her memories close in our hearts forever.
There have been many difficult moments this past week. I choose to keep busy in the daytime hours, just my way of coping. It is during the quiet, still, nightime hours that are cause for the most sorrow and difficulty. One of my projects recently was to clean the basement. I was going through boxes and came across Alexandria's old tap, jazz and ballet shoes. I know she is now dancing in heaven. I found pictures that she had drawn as a preschooler and kindergartener and know that she is still a wonderful artist in heaven with the sky as her canvas. I saw all of her clothes and shoes that she has outgrown. What precious items to have, however, the pain of seeing these things were immense. I decided that cleaning the basement was an exercise in depression and quickly concluded that I was NOT ready for it. So, I moved on to locating all of the i.v. pumps for Home Health that we need to return........and you guessed it, again, very painful. So, then I decided to do some laundry. Many of Alexandria's clothes were still in baskets that had not been put away because we have been so busy. Oh, how I long to see her in that cute kitty cat shirt again. My mind quickly returns with the fact that she is with God and Jesus and it will seem like such a short time to her before we meet again. I know that some things I am doing, or not doing, for self-preservation purposes. We will never be the same, but hopefully we all will have grown and learned so much from "this little light/child of mine."
Several people have asked our address/ Alexandria's Angels Address :
The Haddock Family
241 Chestnut Hill Drive
O' Fallon, MO 63366
If you would like to send a donation to Alexandria's Angels Foundation please send it to:
Alexandria's Angels
c/o Dave Whalen
247 Chestnut Hill Drive
O' Fallon, MO 63366
God Bless-
Alison
Saturday, March 1, 2003 4:34 PM CST
I cannot believe it has been a week since Alexandria's Celebration of Life. It has been a long week and short week all in one. I still cannot believe that tomorrow will be two weeks since she went to be with Jesus. I would say overall our family is remaining strong. However, if it snows ONE more time.....I may just lose it. It snowed the day my father died.....it snowed all weekend when Alexandria passed away. So I see the snow with all of it's beauty and splendor, and at the same time, memories flood my mind of other days past that it has snowed. Maybe it is Alexandria's sign that she is okay and heaven is wonderful. We have watched the video several times this week. Of course, the tears flow freely, but I do find myself thinking time and time again this important fact.......SHE IS NOT HURTING....."not here, or here, or here," as she said in the video. She is running and playing and just being the kid she could not be here on this earth. We have become friends with many families who have lost their children in the past few years due to cancer. It does make one wonder exactly where all our tax money is going?!!? There must be more research done.....we are losing children to cancer at an alarming rate. Yes, great strides have been made in childhood leukemia resulting in protocols that have survival rates of 75%. However, there are MANY children still losing this battle.
Alexandria's cat Brittany, the older one, is thoroughly depressed. She just lays on the bed all day in the exact spot that she would be when Alexandria was in our bed. I do not think they have "pet therapy" or oherwise she would be a good candidate. I know she misses Alexandria terribly.
It came to my attention through some comments that were made this week, that the finality of death is not completely understood by a 6 year old and definitely not a 3 year old. There are times that I know they are both thinking "Alexandria is just at the hospital, just like she has been so many times before, and she is coming back." This one is a little tougher to explain, but eventually they will understand all too completely that Sissy IS HOME in heaven.
Safely Home
I am now at home in heaven;
All's so happy, all so bright!
There is perfect joy and beauty
In this everlasting light.
All the pain and grief are over,
Every restless tossing past;
I am now at peace forever,
Safely home in heaven at last.
Did you wonder I so calmly
Trod the Vally of the Shade?
Oh! but Jesus' love illumined
Every dark and fearful glade.
And He came Himself to meet me
In that way so hard to tread;
And with Jesus' arm to lean on,
Could I have one doubt or dread?
Then you must not grieve so sorely,
For I love you dearly still;
Try to look beyond earth's shadows,
Pray to trust our Father's will.
There is work still waiting for you,
So you must not idle stand;
Do your work while life remaineth
You shall rest in Jesus' land.
When that work is all completed,
He will gently call you home;
Oh, the rapture of the meeting!
Oh, the joy to see you come!
Author Unknown
God Bless each of you and thanks for all that you are doing for our family, including checking on us via this website.
love - Alison
Wednesday, February 26, 2003 9:40 PM CST
I would consider today to be a good day. I did not cry once. Even as I stood at Alexandria's snow-covered grave in the cold, dark night tonight after church, I felt her strength covering me and comforting me. I have gone to her grave every day this week. I just feel I need to do that right now. Judging from the footprints in the snow surrounding her grave, I am not the only one that has felt this need. I was apprehensive about attending the Wednesday night fellowship dinner and activities that followed at church tonight. I feared that I would "lose it" like I so frequently do at church. I realize that out of all the places that one could grieve and shed a tear, church would be the best place. At least then you know you are surrounded by those who know, love and care about you and what you are going through. The evening turned out to be quite nice. Grant and I went to a bible study and the kids to their classes. It was good to be able to go, for we had not been able to do this since Alexandria had gotten sick. Her counts were usually too low and we never wanted to leave her out.
Today I felt like I needed to be strong. I think Alexandria was the epitome of strength and she would want me to be the same. I do wonder if she is watching me from heaven and what she thinks of me from her new vantage point. All things, I suppose, have been revealed to her about her mommy.......the good, the bad, and the ugly......YIKES!!!! I hope she is proud of some of the things I have done and agrees with our methods of dealing with her disease. I do miss that precious soul deeply. I was not only her mommy, but in a way, I was her best friend as well. We shared our time together 24/7. I miss her company. I miss her laughter. I miss the way she could always look at things in a different light, a different perspective. We would always look for the "silver lining" in some of the "not so good situations." I know that she and God will reveal, in time, the "silver lining" in her death. Some of these things have already been revealed. I heard that several families attended our church this weekend....and it was no coincidence that they attended Alexandria's service the day before. These are the things that make it seem a little easier to cope with the situation. When people at church or Target tell me that Alexandria or this website has somehow, someway impacted their lives in a positive way, it is a very powerful testament to me and more importantly to God.
Hunter, Hayden and Addison are coping well and I believe are doing good under the circumstances. All of their teachers say they are doing fine in school, and that they have not noticed a tremendous difference in their attitudes or demeanor. They have been meeting with the counselor at school on a regular basis to help them in various ways. We are trying to let them know that they can talk to us about anything........a happy memory, or if they are very sad. What we do not want is for them to "protect" Grant and I and therefore not tell us what is on their minds or in their hearts. We have told them it is okay to be sad and cry, we are sad and we cry. On the other hand, I do not want my children to see me grieving so continously that they feel they or myself cannot go on. That is not want Alexandria would want from any of us. We talk about Alexandria all the time and will continue to do so for the rest of our lives to keep her memory alive. It is amazing to hear the boys pray at night and talk to her and God. It is difficult to hear Addison say each and every day "mommy I do not want Sissy to be in heaven, beyond the moon, I want my Sissy here with me, not God and Jesus." It is truly heartbreaking to hear her express her feelings and emotions on a 3 year old level. The fact that Addison looks EXACTLY like her big sister, talks EXACTLY like her sister, acts EXACTLY like her sister is both comforting and difficult at the same time. Looking at pictures of them, you cannot tell the difference. Alexandria's hair had a little more auburn in it than Addison's, but other than that they have the same nose, eyes, lips, voice, personality, you name it. Alexandria sucked her thumb......Addison sucks her thumb as well. Alexandria was a snuggle-bug......Addison is as well. They are SO incredibly similiar in SO many ways it is amazing. I am so thankful that we are blessed with the gift of having other children. I know of several parents that have lost their only child to cancer. To be a mom or dad to a child one day and not be a parent the next is beyond imaginable for me. I have been praying extra hard for those families.
Thanks to all of you who are continuing to check in on our family and leave messages. I really cannot tell you what this means to us. While I am thanking people I will add a few more. A sincere and heartfelt thank you to "Pastor Lew" for all he has done for our family in the past few weeks. Most of you do not know this, but he hardly left the hospital the weekend of Alexandria's passing. I do not know many pastors who would be so committed. He stayed all night so that Grant and I would know that he was there if we should need support, spiritual or otherwise. Grant and I were both so comforted by his presence. We knew that Alexandria appreciated it too. We all joined in singing songs to her, and I just know she could hear us. She actually passed away several minutes after he left the room and had sang to her. She wanted to hear him sing, just one last time. I think it is somewhat rare that a pastor has such a profound effect on young children, but that is what Pastor Lew is all about and I am so grateful. A sincere thank you to Pastor Lew's wife, Jennie, for her patience in Lew being gone almost the entire weekend. Now that is one understanding wife!!! I also want to thank Lisa from Stygar Funeral Home. Her job is not an easy one. Especially this one. She has a daughter that was the exact same age as Alexandria and they were both born at St. Lukes too. It was not easy for Grant and I to look at caskets and fill out the paperwork, and all the necessary things for a funeral. Yet, Lisa was very comforting to us and so understanding. She came to our home so that we never had to go the the funeral home. She wanted us to have a memorable service for Alexandria. She was both helpful with ideas and supportive of our wishes. Thanks for everything, the smallest of details Lisa, we greatly appreciate it. Thanks to Dave Whalen (a.k.a. Super Dave)
and Sunset Hills Country Club for providing food for the luncheon after the service. A huge thank you to Mike Merritt, and Bill Beasley for the countless hours they worked with Grant to put together the video of Alexandria at the service. I have heard from SO many people how much that meant to them, and you can only imagine what it meant to our family. I know that camcorder and camera sales will increase in the St. Louis area as a direct result of this video tribute. Many confessed the need to capture more of the moments of their childens' lives. There are so many more people to thank, but I am afraid if I write too much more, you will all be asleep at your computers!
God Bless You and Keep You-
Alison
Tuesday, February 25, 2003 4:46 PM CST
It seems that the more I try to "get back to normal" the more difficult I find things. For instance, after dropping off the kids at school today, I went to buy some gifts at the Christian book store for some of the dear people that have helped us tremendously in the past few weeks. On the way there, I was listening to songs that reminded me of Alexandria. On Manchester Road, there was a funeral procession with only five cars. Thoughts of course went racing through my head. The first of which was, why are there so few cars, so few people. I thanked God for the many people that came last Saturday to celebrate Alexandria's life.....friends new and old, known and unknown. Then I thanked God for choosing me to be the mom of such a precious soul for "10" years. The people I feel most sorry for are the one's that never got to really know her. Some by choice, some by chance, got to know the real Alexandria Nicole Haddock. I am confident that she left an impression on their lives that will not soon be forgotten. After arriving at the bookstore, the song that came on, was, you guessed it, "Awesome God," by Micheal W. Smith. While shopping I saw many things Alexandria would have loved. Everywhere I turn, everywhere I look, the constant reminders of Alexandria are omnipresent. The first thought in the morning, the last thought before I close my eyes......and a million times in between, she is at the forefront of my mind and heart. For over two years, I was constantly caring for her every need (and want). I was flushing her lines and giving oral and i.v. medicines daily, taking her to the clinic once, twice sometimes three times a week, spending days and weeks at the hospital. My entire life really revolved around Alexandria and her care. These past few days, I feel lost. I feel like I am forgetting something, or someone. I have panicked on more than one occasion lately thinking that I have forgotten to do something. To only have to "worry" about three children instead of four is very hard. I know in my mind that my first child is being cared for by Jesus and God now, but I just cannot convince my brain of that. I will eventaully re-train my brain I suppose, but it is so difficult right now.
The cards, gifts and flowers are so welcomed and appreciated, yet they would not be necessary if my precious Alexandria was still here with us. I will forever grieve, I am sure it will just be varying degrees of sadness at different times. I will always carry a deep sorrow for the loss of her, yet I know in my heart that she is so carefree in heaven. I know that God sent Alexandria to enrich my life, teach me valuable lessons, and to give both you and me a glimpse of eternity. I know that I will not go through this pain, and miraculously arrive on the other side of it. I hope that with time, I will, with the grace of God, move through it and find the ability to survive despite it. I know that the pain and missing her deeply will take up permanent residence in my heart and soul but, with God's mercies I will also grow from it and be a better Christian, mom, wife and overall person. I will post the eulogy that I read on Saturday soon.
God Bless Each and Every one of you for ALL that you are doing for our family at this most difficult time.
Because of the cross-
Alison
Sunday, February 23, 2003 7:44 PM CST
I have been praying so hard for strength to get through the past week.......but the feelings of sadness, and pain and despair are hitting me very intensely as I watched the snow fall this evening. The snow was falling last Sunday when Alexandria took her last breath. I watched the snow fall throughout the day from her hospital room snuggled up in bed next to her. I watched her every breath, not knowing if it would be her last. I kept thinking how beautiful that snow was, how beautiful this human being laying next to me fighting for her life was. I kept thinking to myself, "if only I could just breath for her." I sang her lullabies, hymns and praise songs over and over all weekend so that if she could hear me, she would be comforted and not scared. Oh, what I would give to sing one more song to her.
We were at a friends house tonight and I just kept thinking of everything that has happened since 10:20 p.m. last Sunday. As that hour approaches one week later, I am without so many words...just many many tears. The hole in my heart seems unbearable at best at this moment. Oh, what I would give for one last day, one last hour with my precious baby. To feel her precious soft skin.....to tell her I love her just one more time. Oh, please Lord, help me.....give me strength to endure this excruciating hurt that runs so deep within my being. The pain is so horrible, words do it no justice. There is a void that can and will never be filled......it died with Alexandria. I know I will always have so many memories.....but I just want so much more. I am thankful for all of you who came to the service yesterday. It really helps to see the lives she has impacted. I have heard many stories too and would love for you all to put into writing a short story or message, something about Alexandria. Whether it is a funny story or sentimental one....we want to hear it....we want it in writing so that we can remember every single little detail. Someday we can share these stories with her baby sister Addison who will not remember her big "Sissy." I really appreciate all of you who have done this for us, it means so much. I will go for now, the streaming tears are making it difficult to type. Thanks for all the flowers, plants, donations to Alexandria's Angels which will help another child/family touched by this horrible disease. I did also find comfort in seeing that her website had 100,000+ hits on the day of her funeral. I know time will not heal but lessen the wounds of losing Alexandria, but until then, please continue to pray for comfort and strength for our entire family.
God Bless-
Alison
Tuesday, February 18, 2003 6:47 PM CST
Dear Heavenly Father,
A dear, dear friend and companion of mine, my daughter, Alexandria Nicole Haddock, recently came to be with you. You see, a little over two years ago, her mother and I rushed our outwardly-appearing, healthy little girl- who was dying- to the hospital so that they could make her sick to make her better. We did not then understand your plan for her and we clung to the hope that she would be healed here on earth. We now know that there are “affairs in heaven” and that you intend Alexandria to be your “messenger.”
There are, however, earthly affairs, affairs of the heart that require attention and resolution. And you, Lord, will indulge, I know, with a laugh and a smile, the requests of her loving, earthly father. There are things that she really liked to eat and to do and some things that she never got a chance to try or learn and other plans that could not be completed that I will now relate to you, Lord and Heavenly Father.
First, to discuss the food that she loved the most. Ham and Cheese Sandwiches with Mustard and Miracle Whip: make with steak buns that are microwaved for twelve seconds to make the bread warm and soft and “fresh-made,” Miracle Whip on both sides, Plochman’s Mustard in a spiral design on both sides, a thick slice of super-sharp cheddar cut length-wise, half on the top and the other half on the bottom, add several thin slices of honey-baked ham, being careful not allow the ham to hang-over the sides, cut in half and serve with a tall glass of two-percent milk. Velveeta Shells and Cheese: boil water with a splash of olive oil, open box and throw away half of the uncooked shell noodles; boil the other half for twelve minutes; when cooked, drain water and squeeze out entire package of cheese on the cooked shell noodles; stir until cheesy and delightful and serve warm with a great glass of two-percent milk. Toasted Peanut Butter and Jelly Toast or Sandwiches: de-crust four slices of wheat bread and lightly toast; rapidly, while still warm, spread on Peter Pan creamy peanut butter; squeeze on grape (1st choice) or strawberry (2nd choice) jelly; cut diagonally and serve with huge (you guessed it) glass of milk. Cinnamon and Sugar Toast: de-crust four slices of wheat bread, lightly toast all four slices, and butter all four slices on both sides (this step is critical), lightly sprinkle with cinnamon and sugar on both sides (again, critical), now microwave just long enough to melt any “un-melted islands” of butter and serve (yes, with giant glass of milk.)
Other favorites are less “custom-made,” but no less important. “Gold-fish” cheddar crackers dipped in applesauce, Campbell’s Chicken-noodle soup (for “complaining tummy” days) dilute with just a splash of water, never a whole can (watch for “noodle fishing” with the fingers), BBQ Chicken Wings from Pizza Hut or Schnuck’s, Fazoli’s Fettuccini Alfredo, White Castle Cheeseburgers, Tortellini with Cream Sauce, sans mushrooms and peas, from Madison’s Café, Pasta con Broccoli from Rich and Charlie’s and the Pasta House, Mighty Kids Cheeseburger meal with a large Orange Soda, Arby’s Roast Beef and Cheddar, Steak and Shake Onion Rings, Macaroni Grill and Red Robin’s Macaroni and Cheese, Pink and Yellow Minute Maid Lemonade, Hi-C Red and Orange, Cherry Slurpee’s, the “44 ouncer,” please, from On the Run, Bubble Gum Ice Cream, and a wide assortment of Popsicles. And please do not forget a plentiful supply of Zour’s, Nerds, Sweetarts, and Reese’s Bites. Not because Alexandria liked these candies so much, but because she knew we would get her anything she asked for and she liked to give them out to Hunter, Hayden and Addison as a treat.
While food was an important part of her steroid-filled last years, she also liked to do many things and to consider her future. She enjoyed watching cartoons and she was a wiz on the remote control. Her favorite cartoon by far was Hamtaro and all of the Ham-Ham adventures. She was, in fact, our resident expert on all things Hamtaro. A regular visitor to Hamtaro.com, she knew every character, which ones were “rivals” for the affection of others, and all the words to the opening and to the ending songs she daily belted out with gusto. Lizzy Maguire, Sabrina, The Weekenders, Kids Next Door, Mary Kate and Ashley, Lloyd in space, Lilo and Stitch, were among her favorites too. As she watched these characters and their adventures on the television, she often thought about what she wanted to do as an adult. Unfortunately, she could not decide between a Veterinarian, an Artist, or a Christian Singer. Thankfully, now she can do all three if she so desires. She so loved animals (cats and kittens were a resounding favorite), arts and crafts and music. She loved puttering up and down the street on her little scooter (although her enthusiasm cost her a painful case of “scooter-foot.”)
Some things she did have an opportunity to enjoy, others she did not. She always wondered what shrimp tastes like. We could not feed her any shell fish, especially after her transplant, because it might have made her sick. Please give her a great Shrimp Cocktail. She never learned how to ride a bike. She was just learning when she got sick and her platelets got low and it became too risky. Please teach her to ride a bike. She also asked about getting her ears pierced. She was careful to include several important conditions, though. She knew she had to be off-therapy, her “counts” had to be high and, because she was understandably interested in staying far away from hypodermic needles of any kind, she wanted to have them pierced while she was under anesthesia during a bone marrow aspiration. Please give her a beautiful set of earrings to match her beautiful new wings.
Although there are so many more things that could be added, these stand out. One other item stands out in my mind as well. Alexandria seemed to enjoy, almost beyond anything else, swimming. Her Broviac catheter in her chest prevented anything more than knee-deep immersion. When her treatments were over and her Broviac removed, I was planning on taking the family in the biggest rented Winnebago I could find on a whirlwind tour of the water parks of America. We talked many times about swimming all day until fingers were shriveled like dried prunes and little bodies were overcome with exhaustion. I determined that the vacation would end when the children told me they could not go to another park or swim another day. The best laid plans of mice and men seldom work in the context of cancer.
But you, her Heavenly Father, knew all of this before she was born and everything that I have just communicated to you, too, and only my poor understanding of your plans lags behind. You knew that she would devise many terms of endearment for me, her “lolly,” her “hottie honey,” and her “this tummy.” You knew that a life is most appropriately and correctly measured not by longevity or baubles acquired, but by the positive impact on others.
And you knew that Alexandria needed an incredible and special mother who would never give up trying to help her baby, who would brave any hazard, who would challenge the people who cared for her to always do their best, who would gladly trade sleep, food and, in short, all earthly comfort in pursuit of her little angel's cause. We both thank you for that.
I will henceforth “draw each breath in pain” and wipe dry the morning tears that pool in my ears while a lay gazing heavenward considering what she was, is, and could have been. I am grateful for every minute and every memory that I was so richly blessed to know the miracle, the marvel, the magic, and the majesty of Alexandria Nicole Haddock. Goodnight, I love you sweet princess “may flights of angels sing you to your rest.”
With all my love,
Your Daddy for Ever & Always
Tuesday, February 18, 2003 6:25 PM CST
Dear Heavenly Father,
A dear, dear friend and companion of mine, my daughter, Alexandria Nicole Haddock, recently came to be with you. You see, a little over two years ago, her mother and I rushed our outwardly-appearing, healthy little girl- who was dying- to the hospital so that they could make her sick to make her better. We did not then understand your plan for her and we clung to the hope that she would be healed here on earth. We now know that there are “affairs in heaven” and that you intend Alexandria to be your “messenger.”
There are, however, earthly affairs, affairs of the heart that require attention and resolution. And you, Lord, will indulge, I know, with a laugh and a smile, the requests of her loving, earthly father. There are things that she really liked to eat and to do and some things that she never got a chance to try or learn and other plans that could not be completed that I will now relate to you, Lord and Heavenly Father.
First, to discuss the food that she loved the most. Ham and Cheese Sandwiches with Mustard and Miracle Whip: make with steak buns that are microwaved for twelve seconds to make the bread warm and soft and “fresh-made,” Miracle Whip on both sides, Plochman’s Mustard in a spiral design on both sides, a thick slice of super-sharp cheddar cut length-wise, half on the top and the other half on the bottom, add several thin slices of honey-baked ham, being careful not allow the ham to hang-over the sides, cut in half and serve with a tall glass of two-percent milk. Velveeta Shells and Cheese: boil water with a splash of olive oil, open box and throw away half of the uncooked shell noodles; boil the other half for twelve minutes; when cooked, drain water and squeeze out entire package of cheese on the cooked shell noodles; stir until cheesy and delightful and serve warm with a great glass of two-percent milk. Toasted Peanut Butter and Jelly Toast or Sandwiches: de-crust four slices of wheat bread and lightly toast; rapidly, while still warm, spread on Peter Pan creamy peanut butter; squeeze on grape (1st choice) or strawberry (2nd choice) jelly; cut diagonally and serve with huge (you guessed it) glass of milk. Cinnamon and Sugar Toast: de-crust four slices of wheat bread, lightly toast all four slices, and butter all four slices on both sides (this step is critical), lightly sprinkle with cinnamon and sugar on both sides (again, critical), now microwave just long enough to melt any “un-melted islands” of butter and serve (yes, with giant glass of milk.)
Other favorites are less “custom-made,” but no less important. “Gold-fish” cheddar crackers dipped in applesauce, Campbell’s Chicken-noodle soup (for “complaining tummy” days) dilute with just a splash of water, never a whole can (watch for “noodle fishing” with the fingers), BBQ Chicken Wings from Pizza Hut or Schnuck’s, Fazoli’s Fettuccini Alfredo, White Castle Cheeseburgers, Tortellini with Cream Sauce, sans mushrooms and peas, from Madison’s Café, Pasta con Broccoli from Rich and Charlie’s and the Pasta House, Mighty Kids Cheeseburger meal with a large Orange Soda, Arby’s Roast Beef and Cheddar, Steak and Shake Onion Rings, Macaroni Grill and Red Robin’s Macaroni and Cheese, Pink and Yellow Minute Maid Lemonade, Hi-C Red and Orange, Cherry Slurpee’s, the “44 ouncer,” please, from On the Run, Bubble Gum Ice Cream, and a wide assortment of Popsicles. And please do not forget a plentiful supply of Zour’s, Nerds, Sweetarts, and Reese’s Bites. Not because Alexandria liked these candies so much, but because she knew we would get her anything she asked for and she liked to give them out to Hunter, Hayden and Addison as a treat.
While food was an important part of her steroid-filled last years, she also liked to do many things and to consider her future. She enjoyed watching cartoons and she was a wiz on the remote control. Her favorite cartoon by far was Hamtaro and all of the Ham-Ham adventures. She was, in fact, our resident expert on all things Hamtaro. A regular visitor to Hamtaro.com, she knew every character, which ones were “rivals” for the affection of others, and all the words to the opening and to the ending songs she daily belted out with gusto. Lizzy Maguire, Sabrina, The Weekenders, Kids Next Door, Mary Kate and Ashley, Lloyd in space, Lilo and Stitch, were among her favorites too. As she watched these characters and their adventures on the television, she often thought about what she wanted to do as an adult. Unfortunately, she could not decide between a Veterinarian, an Artist, or a Christian Singer. Thankfully, now she can do all three if she so desires. She so loved animals (cats and kittens were a resounding favorite), arts and crafts and music. She loved puttering up and down the street on her little scooter (although her enthusiasm cost her a painful case of “scooter-foot.”)
Some things she did have an opportunity to enjoy, others she did not. She always wondered what shrimp taste like. We could not feed her any shell fish, especially after her transplant, because it might have made her sick. Please give her a great Shrimp Cocktail. She never learned how to ride a bike. She was just learning when she got sick and her platelets got low and it became too risky. Please teach her to ride a bike. She also asked about getting her ears pierced. She was careful to include several important conditions, though. She knew she had to be off-therapy, her “counts” had to be high and, because she was understandably interested in staying far away from hypodermic needles of any kind, she wanted to have them pierced while she was under anesthesia during a bone marrow aspiration. Please give her a beautiful set of earrings to match her beautiful new wings.
Although there are so many more things that could be added, these stand out. One other item stands out in my mind as well. Alexandria seemed to enjoy, almost beyond anything else, swimming. Her Broviac catheter in her chest prevented anything more than knee-deep immersion. When her treatments were over and her Broviac removed, I was planning on taking the family in the biggest rented Winnebago I could find on a whirlwind tour of the water parks of America. We talked many times about swimming all day until fingers were shriveled like dried prunes and little bodies were overcome with exhaustion. I determined that the vacation would end when the children told me they could not go to another park or swim another day. The best laid plans of mice and men seldom work in the context of cancer.
But you, her Heavenly Father, knew all of this before she was born and everything that I have just communicated to you, too, and only my poor understanding of your plans lags behind. You knew that she would devise many terms of endearment for me, her “lolly,” her “hottie honey,” and her “this tummy.” You knew that a life is most appropriately and correctly measured not by longevity or baubles acquired, but by positive impact others.
I will henceforth “draw each breath in pain” and wipe dry the morning tears that pool in my ears while a lay gazing heavenward considering what she was, is, and could have been. I am grateful for every minute and every memory that I was so richly blessed to know the miracle, the marvel, the magic, and the majesty of Alexandria Nicole Haddock. Goodnight, I love you sweet princess “may flights of angels sing you to your rest.”
With all my love,
Your Daddy for Ever & Always
Tuesday, February 18, 2003 6:25 PM CST
Dear Heavenly Father,
A dear, dear friend and companion of mine, my daughter, Alexandria Nicole Haddock, recently came to be with you. You see, a little over two years ago, her mother and I rushed our outwardly-appearing, healthy little girl- who was dying- to the hospital so that they could make her sick to make her better. We did not then understand your plan for her and we clung to the hope that she would be healed here on earth. We now know that there are “affairs in heaven” and that you intend Alexandria to be your “messenger.”
There are, however, earthly affairs, affairs of the heart that require attention and resolution. And you, Lord, will indulge, I know, with a laugh and a smile, the requests of her loving, earthly father. There are things that she really liked to eat and to do and some things that she never got a chance to try or learn and other plans that could not be completed that I will now relate to you, Lord and Heavenly Father.
First, to discuss the food that she loved the most. Ham and Cheese Sandwiches with Mustard and Miracle Whip: make with steak buns that are microwaved for twelve seconds to make the bread warm and soft and “fresh-made,” Miracle Whip on both sides, Plochman’s Mustard in a spiral design on both sides, a thick slice of super-sharp cheddar cut length-wise, half on the top and the other half on the bottom, add several thin slices of honey-baked ham, being careful not allow the ham to hang-over the sides, cut in half and serve with a tall glass of two-percent milk. Velveeta Shells and Cheese: boil water with a splash of olive oil, open box and throw away half of the uncooked shell noodles; boil the other half for twelve minutes; when cooked, drain water and squeeze out entire package of cheese on the cooked shell noodles; stir until cheesy and delightful and serve warm with a great glass of two-percent milk. Toasted Peanut Butter and Jelly Toast or Sandwiches: de-crust four slices of wheat bread and lightly toast; rapidly, while still warm, spread on Peter Pan creamy peanut butter; squeeze on grape (1st choice) or strawberry (2nd choice) jelly; cut diagonally and serve with huge (you guessed it) glass of milk. Cinnamon and Sugar Toast: de-crust four slices of wheat bread, lightly toast all four slices, and butter all four slices on both sides (this step is critical), lightly sprinkle with cinnamon and sugar on both sides (again, critical), now microwave just long enough to melt any “un-melted islands” of butter and serve (yes, with giant glass of milk.)
Other favorites are less “custom-made,” but no less important. “Gold-fish” cheddar crackers dipped in applesauce, Campbell’s Chicken-noodle soup (for “complaining tummy” days) dilute with just a splash of water, never a whole can (watch for “noodle fishing” with the fingers), BBQ Chicken Wings from Pizza Hut or Schnuck’s, Fazoli’s Fettuccini Alfredo, White Castle Cheeseburgers, Tortellini with Cream Sauce, sans mushrooms and peas, from Madison’s Café, Pasta con Broccoli from Rich and Charlie’s and the Pasta House, Mighty Kids Cheeseburger meal with a large Orange Soda, Arby’s Roast Beef and Cheddar, Steak and Shake Onion Rings, Macaroni Grill and Red Robin’s Macaroni and Cheese, Pink and Yellow Minute Maid Lemonade, Hi-C Red and Orange, Cherry Slurpee’s, the “44 ouncer,” please, from On the Run, Bubble Gum Ice Cream, and a wide assortment of Popsicles. And please do not forget a plentiful supply of Zour’s, Nerds, Sweetarts, and Reese’s Bites. Not because Alexandria liked these candies so much, but because she knew we would get her anything she asked for and she liked to give them out to Hunter, Hayden and Addison as a treat.
While food was an important part of her steroid-filled last years, she also liked to do many things and to consider her future. She enjoyed watching cartoons and she was a wiz on the remote control. Her favorite cartoon by far was Hamtaro and all of the Ham-Ham adventures. She was, in fact, our resident expert on all things Hamtaro. A regular visitor to Hamtaro.com, she knew every character, which ones were “rivals” for the affection of others, and all the words to the opening and to the ending songs she daily belted out with gusto. Lizzy Maguire, Sabrina, The Weekenders, Kids Next Door, Mary Kate and Ashley, Lloyd in space, Lilo and Stitch, were among her favorites too. As she watched these characters and their adventures on the television, she often thought about what she wanted to do as an adult. Unfortunately, she could not decide between a Veterinarian, an Artist, or a Christian Singer. Thankfully, now she can do all three if she so desires. She so loved animals (cats and kittens were a resounding favorite), arts and crafts and music. She loved puttering up and down the street on her little scooter (although her enthusiasm cost her a painful case of “scooter-foot.”)
Some things she did have an opportunity to enjoy, others she did not. She always wondered what shrimp taste like. We could not feed her any shell fish, especially after her transplant, because it might have made her sick. Please give her a great Shrimp Cocktail. She never learned how to ride a bike. She was just learning when she got sick and her platelets got low and it became too risky. Please teach her to ride a bike. She also asked about getting her ears pierced. She was careful to include several important conditions, though. She knew she had to be off-therapy, her “counts” had to be high and, because she was understandably interested in staying far away from hypodermic needles of any kind, she wanted to have them pierced while she was under anesthesia during a bone marrow aspiration. Please give her a beautiful set of earrings to match her beautiful new wings.
Although there are so many more things that could be added, these stand out. One other item stands out in my mind as well. Alexandria seemed to enjoy, almost beyond anything else, swimming. Her Broviac catheter in her chest prevented anything more than knee-deep immersion. When her treatments were over and her Broviac removed, I was planning on taking the family in the biggest rented Winnebago I could find on a whirlwind tour of the water parks of America. We talked many times about swimming all day until fingers were shriveled like dried prunes and little bodies were overcome with exhaustion. I determined that the vacation would end when the children told me they could not go to another park or swim another day. The best laid plans of mice and men seldom work in the context of cancer.
But you, her Heavenly Father, knew all of this before she was born and everything that I have just communicated to you, too, and only my poor understanding of your plans lags behind. You knew that she would devise many terms of endearment for me, her “lolly,” her “hottie honey,” and her “this tummy.” You knew that a life is most appropriately and correctly measured not by longevity or baubles acquired, but by positive impact others.
I will henceforth “draw each breath in pain” and wipe dry the morning tears that pool in my ears while a lay gazing heavenward considering what she was, is, and could have been. I am grateful for every minute and every memory that I was so richly blessed to know the miracle, the marvel, the magic, and the majesty of Alexandria Nicole Haddock. Goodnight, I love you sweet princess “may flights of angels sing you to your rest.”
With all my love,
Your Daddy for Ever & Always
Monday, February 17, 2003 11:06 AM CST
Alexandria Nicole Haddock earned her beautiful pink-tipped angel wings at 10:20 p.m., Sunday, February 16th, 2003. She left this earth feeling no pain and flew into the arms of our Lord and Savior. At the moment she took her last breath, she was holding the three things she wanted to be holding when she left this earth,
her mommy's hand, her daddy's hand, and moonbeam..."the magical unicorn that could work miracles."
God's Garden
God looked around His garden
And found an empty place
He then looked down upon the earth
And saw your tired face
He put His arms around you
And lifted you to rest
God's garden must be beautiful,
He always takes the best
He knew that you were suffering
He knew you were in pain,
He knew that you would never
Get well on earth again.
He saw the road was getting rough
And the hills were hard to climb
So He closed your weary eyelids,
And whispered "Peace Be Thine."
It breaks our hearts to lose you
But you didn't go alone.
For part of us went with you,
The day God called you home.
Sunday, February 16, 2003 10:17 AM CST
It is with the saddest and heaviest of hearts that I tell you that Alexandria's precious little life can now be measured in hours....not days or weeks. On Friday we came to the hospital for blood products. It was noticed by her doctor that her right lung had decreased air flow. Upon doing an x-ray, it was confirmed that she had pneumonia. She has not had an immune system for a month, so this was horrible news, she had nothing to fight it with. We got up to the BMT unit that afternoon and early in the evening she started having trouble breathing and asked for oxygen. A few hours later she suffered what the Dr. Mike believes was a bleed in her brain due to the fact the her blood pressure plummeted. This happens frequently after cranial radiation. The chemo that we had planned to give her was on the table. She had been premedicated with Tylenol, benedryl and prednisone to offset side effects. So, you see, with this perfect timing, we believe that it was just not God's will for her to get this chemo. Our chance to do this would have been a few weeks ago, but again, must not have been God's perfect plan. After this event on Friday, due to her respirations, etc, Dr. Mike felt that she would have an hour at the most to live. I do not know where the strength came from, other than straight from God, but my fear was that ALexandria would be scared. She had said earlier that she was so scared when she was having trouble breathing. So, I found the strength to whisper continously in her ear that Mommy and Daddy love her so much but that God and Jesus love her so much too. I told her she did not have to fight any longer. There was no chemo, no pain, no hospitals in heaven. I told her that we would miss her terribly but that we would see eachother again someday soon. Well, we all know Alexandria. She wrote the book on fighting. She is just as, if not more, stubborn than her momma. I have told her many times this weekend, she can let go, but she has NOT listened so far. She is still fighting, still not ready to give in. She is on her time and God's time. One of the nurses taking care of her said in her 12 year here at CG, she has never seen a child fight so hard. That's my girl. Given the amount of chemo she has received and the toxicity that brings to all major organs, it is amazing that she is still with us. Although it is incredibly difficult to watch her struggle to breathe and linger, we feel "our Alexandria" has already left us. We feel this time is for Grant and I to come to terms with everything and say goodbye. She is on a great deal of pain medicine. We are watching her closely so that she will not suffer. I must go back in the room to be with my baby in her final moments on this earth. Please pray for peace and comfort for Alexandria. Pray that her journey is without pain and she is quickly received into the house of the Lord...a beautiful angel with pink tipped wings.
God Bless you each and every one-
Alison
Saturday, February 15, 2003 11:07 AM CST
Hi everyone,
This is Alexandria's Uncle Michael. Please pray for Alexandria to be comfortable and soothed during her last hours.
She was admitted to Cardinal Glennon Childrens Hospital yesterday with a terrible case of pneumonia.
Please pray that God will give Alison and Grant the strength to put their faith in God and His plan. May he take her in His arms and hold her ever so gently.
God Bless You All
Uncle Michael
Friday, February 14, 2003 2:11 AM CST
Please pray for Alexandria:
Khalita from www.hecaresonline.com has put together a specific prayer request list, please go to
www.dukealumni.com/cc/107/FSLO-1045015484-989107.doc
Thursday, February 13, 2003 12:47 AM CST
Alexandria is sleeping comfortably so I thought I would take a quick moment to update. Dr. Mike decided that he wanted to start the two new chemos on Monday. Since it is a 5 day infusion, (2 hours each day for 5 days) he did not want to go over a weekend. This would require an in-patient stay, which Alexandria really did not want to do. It also takes the chemo some time to get in, they do not stock it. So, we will go back for blood and platelets tomorrow (Friday) and then we will be at the clinic M-F next week probably all day. She has been nauseous and vomiting for the past 15 hours. We are getting home health to deliver pain/anti-nausea medicine and hopefully she will be more comfortable. It is so hard to see your child in pain. I wish so bad that I could snap my fingers and take this all away. I know I cannot, so I am praying constantly instead. Please pray that we can keep her comfortable until we start the new meds on Monday. Please say prayers for the other children in our family. It is incredibly difficult for them to witness Alexandria's pain and the effects of the pain medication. They keep asking her when she will be well enough to play again. It just breaks my heart.
Must go for now, but wanted to thank Mrs. Scott (Alexandria's former 1st grade teacher) for the balloons, cookies and treats. Thanks to Pat and Courtney Hunter for all of the Valentines treats. Thanks to Nancy and Tammy for getting my children to and from school each day.
A friend of mine, Khalita, who is a wonderful person and Christian is setting up a 24 prayer for Alexandria. I need to find out more details to see how she wants people to sign up. The goal is each person to take a few minutes each day for prayer for Alexandria. I will post more tonight.
God Bless- Alison
Monday, February 10, 2003 6:21 PM CST
I know, I know. I have received enough e-mails from enough of you requesting an update. Believe me, I understand that everyone is concerned and for that I am so grateful. I will also tell you that Alexandria hardly wants me to leave her side, which makes it difficult to update sometimes. Her care, at this point, is very extensive and demanding. Not that I am complaining, I just want everyone to know that it is sometimes just difficult to get a shower in the space of a day. When she is in pain, she does not want dad, or anyone but mom. I am thankful for that, it is my job. Dad has other roles which he is good at (only a few, haha!)
So, here is the update. The weekend was relatively uneventful. Alexandria had intermittent pain, for which she was taking some serious narcotics. These drugs were making her very emotional and weepy. She was very apologetic (for any reason whatsoever) and just needed some extra TLC. I was once again unsuccessful at my attempt to not cry in church. I am not sure what it is, I am just so overcome with emotions in church. I am sure since it is also the only time I am away from Alexandria, this is my time to "release, and let go." Everyone is so supportive there and I am sure they have just grown accustomed to Alison sitting in the front row crying throughout the service. That is one of the reasons I sit up there, then I have my back to everyone. I was very touched by a woman at church who did not know me, yet came up to me after the service and tried to console me, not knowing the source of my pain. I told her I was Alexandria's mom, and I had to say no more. She told me that she and so many others had been praying for Alexandria. I just thought that was so special.
Lab results from today, in my opinion, were actually improved....Now, I will tell you this....there is really no medical explanation for this. Only a spiritual one. God and prayer. That's it my friends.
WBC .7
Hgb 0.2
Platelets 7 (received a transfusion today)
and blasts/leukemia 4% (down from 36% on Friday)
immature lymphs 7
monos 10 (good)
cells diffed 44 (up from 25 Friday)
So, I realize that the sampling of the blood and the CBC can always have a margin of error, but I still think it is a significant reduction with more cells to look at. Call it what you want, but I think all the prayers from all of you are being heard loud and clear. We know her bone marrow is still packed with leukemia and we have a LONG way to go. So, please keep the prayers coming. I wanted to share this so you all could see the difference you are making. Just the fact that she is still with us is a true testament to God and his mercy and grace.
Now, the other concern that many of you are asking about is what's going on with Duke/Children's and Alexandria's care. This is a rather long and difficult story. I felt it may affect Alexandria's care and, therefore, chose not to share it until this time. Here goes: Last week we spoke to Dr. K at Duke. She stated that she would like to try two chemotheraputic compounds that Alexandria's cancer has not yet seen (one is a gene therapy drugand the other is a monoclonal antibody). So, Dr. K. at Duke called Dr. J. (here at Children's) and basically said "I have seen some positive results, albeit small, with these two chemos." Furthermore, she expressed her concern of us traveling all the way to Duke, away from our support system, and if the worst should happen.......well, Dr. K. basically felt like Children's could give her the same chemo locally and that would be the best of both worlds. From my conversations with Dr. K, she said she spoke to Dr. J. at Children's and she was willing to administer the chemo to Alexandria. When we contacted the clinic the next day we were told, essentially, that Dr. J. had no desire or intention whatsoever to give Alexandria these two chemos. She felt that the risks/side effects were too great. As if death was not a big bad risk or side effect?!?!?!?!? In a lifetime, one has many decisions to make and often we do a "risk-benefit analysis" to determine the right decision. Now, we all know what will happen if she receives no medications at all; only God, however, knows what the outcome will be if she does get them. Yes, we concur, there are many side effects to these (and EVERY SINGLE OTHER CHEMO SHE HAS GOTTEN FOR 2 YEARS) But, we have spoken to many doctors who say that these side effects are usually manageable. And guess what ......IF WE DO NOT TRY WE WILL NEVER KNOW. Now, maybe Dr. J can live with herself, maybe she can lay her head down on her pillow at night for the rest of her life and feel good about herself and her decisions. I, however, have said before: I want to leave NO stone unturned. Grant's read of the situation is accurate. If there are still tools in the toolbox, let's try them; we have NOTHING to lose. Not that we would want to use just any tool/chemo on her. We realize just because a drug is available, it may not be appropriate for us to use on her. However, Dr. K and others are telling us it is worth a try considering our options. If there was only one patient who saw benefits, the risk is worth it to us. Now the other VERY DISTURBING thing that happened was that Dr. J./ at Children's also said that if we pressed to use the drugs, she felt she would be obligated to tell Alexandria all of the horrible side effects of these drugs and that they had never been proven to work in her type of cancer. Well, considering her doc knows EXACTLY how we feel about this topic.... they are intimately familiar with our situation and the fact that we have not even told Alexandria she has relapsed, much less how precarious her situation is, we were not about to let Dr. J. use this as leverage to get her way in not giving her the drugs. We were told by our PNP that Dr. J said the medical ethicists are debating the wisdom of telling children age 7 and up everything....the good the bad and the ugly. WELL, I DON'T THINK SO!!!!!!! For Dr. J. to presume to ram her moral, ethical, medical rectitude down the throat of our daughter is BS!!!!!! It is just wrong!!!!!!!! Grant and I felt strongly that we were not going to let that doctor ANYWHERE near our daughter if this is her attitude. We were told that because it was an "experimental" drug she must be told and give her consent. Funny, I have talked to several doctors about this since this happened. I must tell you that they thought it was absolutely ridiculous. Dr. K. said she has heard of NO such thing. It is hard to even fathom how a doctor who has taken an oath to help children can threaten to scare them to death. Here's a news flash........I bet if you told these children everything that could happen to them over the course of 3 years of chemotherapy treatment or all the horrible things that could happen before, during or after a BMT they would not voluntarily jump in line and sign up for it. It was not necessary to tell her all the many horrible side effects of the chemo in the past.....nausea, vomiting, shaking, high fever, body aches, infections causing near-death experiences, headaches, general malaise and overall, total physical discomfort, but all of the sudden when it works for them, they deem it necessary to inform my daughter that she could die from these two drugs and there is no benefit to using them. HELLO??????!!!!!!!!! Is anyone else out there perplexed by this, we certanily were. Now, I know my critics will say I am painting the picture in a distorted way, but I think it is a very accurate depiction of the story. To be fair, I suppose I should list all of the side effects, the efficacy of these drugs and every clinical paper discussing them in order to be competely informative, and non-biased in my assessment. However, I do not think any of you want to be bored by those details, nor do I deem that appropriate or necessary.
So, what I will tell you is that Dr. K spoke to a Dr. Mike Kelley at Cardinal Glennon Hospital here in St. Louis. She explained our situation to him, that Children's was unwilling to proceed and therefore he agreed to see us. Dr. Kelley used to be at Children's so he is familiar with this protocol she has been on and some of her history. Today, after getting platelets at Children's Hospital we quickly b-lined to Glennon and had a consultation with Dr. Mike. He did not give us a guarantee, he did not make any promises, but do you want to know what he did give us? A little bit of HOPE. A willingness to TRY these drugs or others. His plan is to call Dr. K at Duke (and unfortunately he must consult with DR. J. at Children's for history purposes) and he wants to call a few other doctors to see if they have any other things that we can try. We realize this is a long shot. We realize we are not looking at any grand percentages of cures or even complete remissions, but yet we have been told by some doctors that it is worth a shot. We are very thankful to Dr. K for suggesting the option to call Dr. Mike. We are thankful that Dr. Mike is willing to try despite the odds. He was very compassionate and caring spending well over 2 and a half hours with us today. For that we are grateful. Our plan is to offically transfer her care to Glennon tomorrow and start treatment Wednesday. I am not sure what the future holds, what these drugs may do to her, good or bad, but we feel the risk is worth taking and we must proceed. I am sure it is crystal clear why Grant and I chose to keep this information to ourselves in the interim period and I hope everyone understands. We will keep you posted in this regard.
Let me take this opportunity to thank Alice Wood and Pat Boulch for very tasty dinners. We have decided we have more "Gladware" on our shelves than Target right now. And how thankful we are that Gladware now exists so we do not have 1000 dishes to return!!! Thanks to Mr. Bill Cole (and Nancy of course) for the Krispy Kreme donuts on Saturday and the cute Valentine gifts for Alexandria. She loves them!! Thanks to all of you who have sent words of encouragment to Alexandria or Grant and I. The generousity of others is a great source of comfort and we are so thankful. I KNOW that I have left someone out that I forgot to thank, and I cannot apologize enough. Please, please forgive me, it is not that we do not appreciate it, it is that, well, we are losing brain cells at the same rate we are losing sleep......enough said. Thanks for listening...the saga continues.... in the meantime, keep the faith and hope and prayers coming!!!
In God's love-
Alison
Friday, February 7, 2003 9:17 PM CST
Bummer.....just updated for 20 minutes and it erased. Oh well, I don't have anything better to do, huh? So, we spent half the day at home waiting for blood and platelets to arrive at the clinic from the Red Cross, the latter part of the day in the clinic getting them. You know where this is going, don't you??? PLEASE, PLEASE GIVE BLOOD AND PLATELETS. There is a major shortage here in
St. Louis and all over the country. Please know that your gift is saving lives....many of them children who already have the burden of having cancer. Spending all day in hospitals and clinics waiting for blood products is not their idea of fun. Sometimes it is a life or death situation and they are having to wait long periods of time which can get scary. I realize that giving blood/platelets is not the most fun or convenient thing. However, know that you are potentially saving a life and you never know when you will need the gift reciprocated. Also, many here in the area, are desperately waiting for that perfect match bone marrow donor. While you are giving blood, tell them you want to be a Bone Marrow Donor.
Okay, off my soap box. Alexandria counts are
WBC .5 (still low which is good, it usually is skyrocketing by now)
Hgb 7.2 (got a unit of red blood today)
platelets 6 (got one unit today)
Blasts/leukemia 36%(up from 12% on Wednesday) not good
cells diffed 25 (usually this is 100)
So things look like they are going up in the blast %, which is not what we want, but expected. Plans are still up in the air as to the next step in her care. We will keep you posted.
Alexandria's 9 1/2 birthday was AWESOME!!!!!!! (after we got her pain under control) She was having severe side and shoulder pain. The side pain resolved itself today. The shoulder pain continued today but is more under control with longer acting pain meds. The Ubelein's brought us a tasty dinner and dessert. They are from our old neighborhood. Thanks to all of you from Autumn View that are traveling over one hour round trip to bring us dinner. It is so nice of you all and greatly appreciated. We then opened presents and ate cupcakes.....just wanted to add on to that sugar buzz. We were then treated to Pastor Lew and his daughter Elizabeth coming over and singing to Alexandria some favorite tunes. She then sang some songs and played guitar for them. She just made up the lyrics as she went along. She did have the benefit of oxycodone (narcotic) on board, so it was actually quite comical, yet precious. Pastor Lew had his guitar too and so we had a grand time. (see new pics) Alexandria actually came out of the master bedroom to the foyer (which she had not done all week) just to hear an encore. Priceless moments for sure. Well, I am being beckoned to come to bed by Alexandria, a request I do not mind at all obliging.
Keep the prayers coming as we certainly need each and every one!!! Also, keep the faith!!!!!!
While you are saying your prayers for Alexandria, please say an extra prayer for Oliver, nephew of Sheryl (oncology nurse at Children's clinic). He is 5 years old and in the ICU at Children's with liver and kidney failure due to unknown causes. Please say a prayer of travel mercies for Dirk and Debbie Hallemeier who are traveling to Austrailia and New Zealand for a MUCH NEEDED 3 week getaway. They lost their son Matthew to leukemia last July. They don't know it yet but there are several people planning to stow away with them in their luggage.
God Bless-
Alison
Friday, February 7, 2003 9:17 PM CST
Bummer.....just updated for 20 minutes and it erased. Oh well, I don't have anything better to do, huh? So, we spent half the day at home waiting for blood and platelets to arrive at the clinic from the Red Cross, the latter part of the day in the clinic getting them. You know where this is going, don't you??? PLEASE, PLEASE GIVE BLOOD AND PLATELETS. There is a major shortage here in
St. Louis and all over the country. Please know that your gift is saving lives....many of them children who already have the burden of having cancer. Spending all day in hospitals and clinics waiting for blood products is not their idea of fun. Sometimes it is a life or death situation and they are having to wait long periods of time which can get scary. I realize that giving blood/platelets is not the most fun or convenient thing. However, know that you are potentially saving a life and you never know when you will need the gift reciprocated. Also, many here in the area, are desperately waiting for that perfect match bone marrow donor. While you are giving blood, tell them you want to be a Bone Marrow Donor.
Okay, off my soap box. Alexandria counts are
WBC .5 (still low which is good, it usually is skyrocketing by now)
Hgb 7.2 (got a unit of red blood today)
platelets 6 (got one unit today)
Blasts/leukemia 36%(up from 12% on Wednesday) not good
cells diffed 25 (usually this is 100)
So things look like they are going up in the blast %, which is not what we want, but expected. Plans are still up in the air as to the next step in her care. We will keep you posted.
Alexandria's 9 1/2 birthday was AWESOME!!!!!!! (after we got her pain under control) She was having severe side and shoulder pain. The side pain resolved itself today. The shoulder pain continued today but is more under control with longer acting pain meds. The Ubelein's brought us a tasty dinner and dessert. They are from our old neighborhood. Thanks to all of you from Autumn View that are traveling over one hour round trip to bring us dinner. It is so nice of you all and greatly appreciated. We then opened presents and ate cupcakes.....just wanted to add on to that sugar buzz. We were then treated to Pastor Lew and his daughter Elizabeth coming over and singing to Alexandria some favorite tunes. She then sang some songs and played guitar for them. She just made up the lyrics as she went along. She did have the benefit of oxycodone (narcotic) on board, so it was actually quite comical, yet precious. Pastor Lew had his guitar too and so we had a grand time. (see new pics) Alexandria actually came out of the master bedroom to the foyer (which she had not done all week) just to hear an encore. Priceless moments for sure. Well, I am being beckoned to come to bed by Alexandria, a request I do not mind at all obliging.
Keep the prayers coming as we certainly need each and every one!!! Also, keep the faith!!!!!!
While you are saying your prayers for Alexandria, please say an extra prayer for Oliver, nephew of Sheryl (oncology nurse at Children's clinic). He is 5 years old and in the ICU at Children's with liver and kidney failure due to unknown causes. Please say a prayer of travel mercies for Dirk and Debbie Hallemeier who are traveling to Austrailia and New Zealand for a MUCH NEEDED 3 week getaway. They lost their son Matthew to leukemia last July. They don't know it yet but there are several people planning to stow away with them in their luggage.
God Bless-
Alison
Thursday, February 6, 2003 9:23 AM CST
Hello to Everyone-
I have e-mailed the people at caringbridge to ask what is wrong with the guestbook. It has been down since yesterday afternoon. Hopefully it will get fixed soon. In the meantime, everything is still up in the air as far as the next step in Alexandria's care. We are waiting to hear back from Dr. Kurtzberg at Duke to see what she recommends since our doctors here will not give Alexandria the chemo that she suggested. In the mean time, I am watching the beautiful snow fall here in St. Louis and beginning the festivities Alexandria has planned for the day.....IT IS HER HALF BIRTHDAY!!!!!! Since she was in the hospital for her ninth birthday on August 6th, she decided she wanted to celebrate her 9 and a half birthday here at home. I will post more as information is made available to me......in the mean time.....KEEP PRAYING PLEASE!!!!!!
God Bless-
Alison
Wednesday, February 5, 2003 3:16 PM CST
I am writing this entry from my desk here at home. I do not have much time, Alexandria is experiencing some pain in her shoulder. She thinks she slept on it wrong, but I am sure it is also the leukemia in her bone marrow. So, the story is long, extremely complicated and unresolved at this particular time. The basic deal is that we spoke to the doctor from Duke yesterday afternoon. She made some recommendations on two other chemo's to try. Dr. K said she would speak to Dr. Jones, here at Children's, and make these recommendations to her because she had seen some small, but positive nonetheless, responses with these two drugs and ALL. So, we learned today that for various reasons, that I don't have near enough time to elaborate on, the doctor here will NOT give Alexandria these drugs because of potential side effects. I realize after researching these two drugs, that yes, there are possible serious side effects. However, if we do not try a different medicine, QUICKLY, we do know what the ultimate side effect of that will be. At this point, we are willing to try. So, because these drugs were a long shot, Dr. K did not want us to travel all the way to Duke if we could be treated here with the same drugs. She thinks that Alexandria's cancer is very aggressive and not much in the way of other options. She felt like she did not have much time left, therefore, if we traveled we would be away from family and our support system if the worst should happen. I believe she was under the impression that our doc here would be willing to listen to her advice. So, we have
e-mailed Dr. K again, for further ideas and how to proceed. I do not know what she will want us to do now. I do not know if any of this is even making sense, I know I am rambling. But, to all you prayer warriors out there,(and I know there are MANY OF YOU) PLEASE, PLEASE PRAY!!!!!!! Things are just not going the way in which any of us expected, and options are limited if not non-existent. I will write more later when time permits.
In Christ's Love-
Alison
Monday, February 3, 2003 7:31 PM CST
Now, let me see, how does that saying go......."if you want God to get a good laugh, tell Him YOUR plans?!?!? Well, that's kinda how I am feeling right about now. When we were at the clinic today, we were told by our PNP, that Dr. Kurtzberg wants to see Alexandria's records before we come down. We did get an e-mail from her stating that she did not want us to come over the weekend because she did not want us to arrive when she was not there. We were under the impression she wanted us to leave Monday or Tuesday. Anyways, not sure where the communication gap lies. We had the entire car packed and ready to go. We had Alexandria get platelets today so that she would be ready for the trip. Now we will probably have to go back to the clinic before we leave.....again.
I am trying hard to keep focused on the positive...another day with Alexandria....always a gift straight from God. I am trying to count my blessings, of which I have many. Yesterday in church, again, we prayed for Alexandria, travel mercies to Duke and healing. After church I met with The Session of the Church to become members. We have actually felt like members for a long time, so, this was just a formality. Many of you have asked to which church we belong. I know many of you thought the idea of praying for Alexandria in our church services was wonderful. The name of the church is Dardenne Presbyterian and I am honored to officially call it "home." Let me just say, that I was so touched to hear these men from The Session comment on what Alexandria's battle and this website has meant to them. They laid hands on myself, Hunter and Hayden and prayed for our family. I was overwhelmed with emotions (as I usually am on Sunday mornings there). The pastors and the people there are wonderful and so caring. So many have brought by food, sent cards and words of encouragement and that means a great deal to our entire family. People that I have never met come up to me after the service and say that they are praying for Alexandria and ask if there is anything they can do for us. That is an awesome feeling, to be surrounded by those who genuinely care and are praying. God does work in wonderful ways. For instance, the woman sitting next to me in church, (whom I had never met) just happened to be the 6th grade Sunday School teacher. They had just made cards for Alexandria and prayed for her a short time before. Wow, absolutely amazing how God works to put us in the right place at the right time. I suppose, that is why we are not at Duke just yet, it is not time. I know I sometimes want things to be on my time.....big mistake. I must remind myself that all things work on God's time and He certainly knows better than I. We also sang the song "You Are My All in All", one of my favorites as I posted on the website just the other day.
Alexandria has been in a great deal of pain off and on the last few days. The chemotherapy she received makes her have nerve pain, which is very intense. It is so difficult to see her in pain. However, I know the chemo is also killing the leukemia, and this pain is unfortunately, the horrible price to pay. The last few nights I have been rubbing and massaging her legs and feet all night. I am hoping that the pain medicine will start to be more effective. She remains in good spirits, however, I must confess. In a moment of shear pain and agony she did retract the statement about not wanting to change the last two years and the fact that she has cancer. Well, can't say I blame her a bit. Today, on the way to the clinic, I asked her what she was doing and she said "praying of course." A little while later she said "Mommy, God answered my prayer, He took my pain away." What a precious moment...another gift. However difficult this journey may be, no situation can ever be greater than God. It is my sincerest wish that God continue to use our family to do His Will and continue to bless me so that I may be a blessing to others.
I will keep you posted.
Love In Christ-
Alison
Monday, February 3, 2003 10:47 AM CST
Not much time to write but did want to keep all that are praying informed. We will be leaving for Duke this morning. The doctor at Duke did not want us to arrive there on the weekend and not get the care that she may need. So, we decided to stay close to the doctors familiar with her over the weekend. I will try my level best to keep the website updated. Thanks to all of you for being SO supportive....it means SO much.
God Bless each and every one of you-
Alison
Friday, January 31, 2003 at 09:44 PM (CST)
HOLY COW.........60,000 visits to the website!!!!
Not much time, so I will be brief.....I know you are not accustomed to that, but here goes. Went to clinic today. Blasts 20%, immature lymphs 30% for a total of 50% bad guys.....NOT GOOD. After careful thought and consideration, we have decided to get to Duke asap. In fact, we will probably leave Saturday or Sunday. She is on antibiotics right now, which is good, we will have antibiotic coverage, but only until Monday. So, as I say to my kids "chop chop puddin pop"...we are on are way. Dr. Kurtzberg will not be in the office until Wednesday but she has two partners that are there in case we run into problems before hand.
Talk about a leap of faith......but we must at least try this.
I have been frantically packing. Just basically throwing stuff into suit cases. We do not know if we will be there for 5 days or 5 months. I cannot even tell you how many people have called us offering money for traveling, frequent flyer miles, etc. Nancy Cole brought over a package of goodies for the road trip as well as a stocked cooler to borrow. Thank you to each and every one of you who called us in the last two days and offered or helped out in any way. We truly appreciate it more than you could know. We feel so blessed to have such a wonderful support system here. That will probably be the hardest part, being away from those we love and have been there for us so many times. Of course we will miss our other children desperately. I really cannot even let myself think about that, I'll be too sad. I cannot imagine little Addison coming down to my bedroom in the middle of the night and me not being here. FOCUS Alison FOCUS!!!! Can't go there!!!
Anyways, I wanted to thank the Kohl's for a wonderful dinner tonight, the Sheats for the gift certificate, for all the cards we have received, some with money enclosed (thanks Patty). The feelings of gratitude overwhelm us at times.
If we are going to be there for awhile I will post our address. I will try to keep everyone posted via the website so that you can pray specifically. Please say a prayer for Michelle, my sister, who will be here, by herself, taking care of 5 children under the age of 7. YIKES!!!!!!!! Okay, now say another prayer please ....she is really gonna need it!!!! Our neighbors have generously offered to help her out and give her breaks away from the chaos...thanks guys. I must go, but I will leave you with this to contemplate......
Hope for the Heart
Perhaps the greatest psychological, spiritual and medical need that all people have is the need for hope. Dr. McNair Wilson, the famous cardiologist, remarked in his autobiography, Doctor's Progress, " Hope is the medicine I use more than any other-hope can cure nearly anything." Years ago Dr. Harold Wolff, professor of medicine at Cornell University Medical College, said "Hope, like faith and a purpose in life , is medicinal. This is not a statement of belief, but a conclusion proved by meticulously controlled scientific experiment. When hope dies, despair will overwhelm us. Hope is both biologically and psychologically vital to us. Men and women must have hope-and true hope comes only from Christ. He gives us hope for the future as we turn in faith to Him-hope for eternity, and hope right now.
- Taken from the book entitled "Hope For Each Day", by Billy Graham.
Didn't I say this was going to be brief........
Thursday, January 30, 2003 at 06:41 PM (CST)
You Are My All In All
You are my strength when I am weak
You are the treasure that I seek
You are my all in all
Seeking You as a precious jewel
Lord to give up I 'd be a fool
You are my all in all
Jesus, Lamb of God
Worthy is Your name
Jesus, Lamb of God
Worthy is Your name
Taking my sin, my cross, my shame
Rising again I bless Your name
You are my all in all
When I fall down You pick me up
When I am dry You fill my cup
You are my all in all
-Dennis Jernigan
I love this song and thought I would share it with you all. I look at Alexandria and am amazed. In a room full of children, you would not guess that she was the one who had cancer. (except for the puffy cheeks and little hair) She is so full of life, so full of humor and love. To be around her is a sheer joy. I have received many questions about yesterdays lab results. Basically, in a CBC (complete blood count) they look at 100 cells. Sometimes when you are on chemotherapy, it is hard to find 100 cells. So, they scanned it with their eyes and counted 15 cells and 3 of them were bad guys. So, this is NOT good news. Our doctors here have given up. They won't give her any more chemo or try any other things. Well, Grant and I decided if there is any hope left (and until her last breath THERE IS ALWAYS HOPE!!!!!!!!!!!!!!) we need to find doctors that are on the same page as us. Unfortuantely, we have never really had those feelings. There is a doctor at Duke University that we have been in contact with for many months. She is not sure if she can help us or not, but she is willing to take a look at Alexandria and her complete records and at least try. I have been asked by many, are you upset with her doctors here for not wanting to try another protocol or chemo, the answer is no. They are just doing what they are competent in doing. I feel that God put us in contact with this doctor for a reason. It may be for a complete cure, it may very well be just so that Grant and I will have TOTAL peace knowing that we did EVERY SINGLE THING POSSIBLE for our precious baby. We will not wonder if there is something we did not try, no stone left unturned. Dr. K. see's many high-risk, post BMT failures, and we hope she has something that will benefit Alexandria. The ultimate goal would be to get her in remission (a big hurdle!!!) and attempt another transplant. We are willing to give just about anything a try as long as Alexandria will not be harmed by it. I know she does not want to give up...well, that is half the battle my friends. We will get counts tomorrow, which of course will be scary for us. Her White blood cell count is still low at .2 but we know that if she does not start on another chemo soon, she will get into a blast crisis, where they will multiply out of control (the leukemia). So, we will leave next week to embark on the latest "quest for the cure." Hey, that's pretty cute, huh? Alexandria Haddock on the "Quest For The Cure." I know that SO many of you are fasting and praying without ceasing for her. I cannot tell you what that means to us. I believe that when I look back at this long, trying journey we have been on for so long, I will only see one set of footprints. For I know that God has carried me through many hard times. I believe the only way I have survived so far, is God's ever-present love and understanding. We firmly believe in the power of prayer. Please continue to pray for Alexandria. Thanks to the Grubb family, Drake and Lisa, and the Bly's for dinner this week. Thanks to Isabelle Heidbreder for the adorable hat with flowers. Thanks to Grant and my Bible study group for the gift certificates to restraunts and gifts for Alexandria.
Love In Christ-
Alison
Wednesday, January 29, 2003 at 03:42 PM (CST)
Just when we get a glimmer of hope, a ray of sunlight, the rug is ripped from beneath our feet....the punching bag lands on us again. Today's labs show 20% blasts in her blood. I do not have the words to express the degree to which my heart aches. I know that God will continue to take care of us through this horrible storm in our life. God is bigger than our problems so I will try once again to put this in His hands and keep it there. In the meantime, please continue to pray.
Love In Christ-
Alison
Monday, January 27, 2003 at 07:12 PM (CST)
Counts drawn from hospice this morning:
WBC .2 (normal 4.5-13.5)
Hgb 13.6
segs 35 (normal 33-70)
Lmphs 50 (normal 21-55
Monocytes 15 (3-13 normal) indicative of count recovery)
Platelets ZERO!!!!!!!! (normal 140-440)
ANC 70
Needless to say, we had to rush her down to Children's to get her some platelets. When you have no platelets, even the slighest bump or fall could cause you to bleed uncontrollably. You have nothing to help you clot off. So, while we were down at the hospital, I had a talk with Debbie R., Alexandria's PNP. Apparently, no one expected her counts (the good cells) to come back......they only expected the leukemia to come back. This is typically what happens.....however, once again, Alexandria is anything but typical. She continously amazes everyone. Her counts are recovering, and although it is VERY EARLY, it appears as though the leukemia is not rearing its ugly face. Now, with that said, they were only able to diff 20 cells versus the normal 100. But what is there right now, just may be encouraging news. The fact that they did not see any blasts causes me to have continued hope. Right now, it would not be helpful to do a bone marrow aspiration to see what the bone marrow looks like. It would probably be hypo-cellular, therefore, inconclusive. So, for now, we will stay the course and evaluate on a day by day, week by week basis. I did ask, what if she achieves a complete remission????? Can we do another transplant? Well, the initial response was they do not do BMT's any closer that 6 months apart, and they prefer one year minimum. This is because of organ toxicity due to the TBI and chemo, which could lead to organ (mainly heart, liver and kidneys) failure. The way I see it.....if by ANY chance Alexandria is able to get back into complete remission, Grant and I feel there is absolutely NO DECISION to be made. We MUST attempt another transplant and if Children's Hospital cannot or will not do it, we will try to find someplace that will transplant her. The next few days and weeks when her counts completely recover will be very critical. The docs will have a meeting on Thursday to discuss the situation further. Since she has ZERO donor graft (Hunter's cells are all gone), we could even try a different donor, one of the other kids. PLEASE KEEP PRAYING, we would need many stars to line up, and of course the grace of God.
Alexandria is slowly but surely getting more energy and feeling better. PTL!!!! When we were leaving the hospital today she said, "mommy look at that beautiful sunset!!!" She said "that sunset just gives me confidence." I asked "what do you mean, confidence?" She replied, "It gives me the confidence that my future is looking bright and everything is going my way." Who IS this child of mine and where in the world does she come up with this stuff?!?! I will add that she also quickly said, "the colors of the sunset also remind me of the colors in a big bowl of fruit and I am SO hungry!!!" (It all comes back to food now doesn't it?)
I will share with you some recent things that have occured and just brought me to my knees with thankfulness. I, of course, would never reveal names, but I will tell you that I have received several e-mails from people stating that their belief in God has been renewed because of Alexandria. I have spoken to individuals who believe in God and Jesus but have never attended church, and now plan to do so...again, because of Alexandria. I just could never adequately put into words the feelings the rush over me to hear someone profess these things. It is amazing. It is a life-changing experience. To think that you, or a family member, has had such a dramatic impact on another individual, is so unbelievably awesome. Thanks be to God for that!!!!
Hunter said tonight that he just wants to snuggle up to Sissy all day tomorrow. Well, he'll have to take a number, because that is the most popular spot in the house. Thank you to the Eplett family for a great dinner tonight. Thanks to everyone for your continued support and undying hope for Alexandria. I will write more tomorrow.
Love In Christ-
Alison
Sunday, January 26, 2003 at 08:28 PM (CST)
I know I say this frequently but I just am so amazed at the number of hits Alexandria's website is getting. I was just number 52,129!!! How exciting!!! I am so thankful that so many of you are not just checking on her daily, but several times each and every day. THANK YOU!!! I cannot tell you how much this means to our entire family. This day has been amazing. First of all, the main prayer for today was to get through it without having to go to the hospital for the third Sunday in a row. Yesterday, when Pastor Lew was at our house, we were talking about how I would see him at church. Alexandria said, "you can't leave me, please do not go mommy." GUILT TRIP!! I have hardly left her side for the last one+ months but I really did want to go to church. I was doubtful when I woke up this morning that I would actually leave her. I proceeded to get ready and I was on my way out the door when Alexandria said "you are REALLY going to go?" I said, one hour, just one hour then I will be right back." Alexandria said "well, you can go if you ask everyone there to pray for me." I said, "Alexandria, everyone at church already prays for you all the time." She said, well, ask them to pray again anyways, and I want to KNOW they prayed for me." Well, I took those orders and delivered them to Pastor Lew. Seeing as that we all aim to please Alexandria, whatever the request, pray is what we all did. Pastor Lew said a very touching prayer for healing for Alexandria. I so appreciated that. I was sobbing. The man behind me had put his hands on my shoulders. When your entire congregation prays for you, in your presence, the emotions, the faith, the hope is palpable. I could just feel the warmth, the heartfelt prayers, flowing from the back of the church all the way to the front pew where I was. Talk about powerful.....it just does not get better than that. The sermon was on "spiritual gifts" and was very good. Pastor Lew asked the question to the congregation "are you living a life full of joy, purpose and fulfillment." He discussed 1 Corinthians 12:1-11
There are different kinds of gifts, but the same Spirit. There are different kinds of service, but the same Lord. There are different kinds of working, but the same God works all of them in all men.
Now to each one the manifestation of the Spirit is given for the common good. To one there is given through the Spirit the message of wisdom, to another the message of knowledge by means of the same Spirit, to another faith by the same Spirit, to another gifts of healing, to another miraculous powers, to another prophecy, to another distinguishing between spirits, to another speaking in different kinds of tongues, and to still another the interpretation of tongues. All these are the work of one and the same Spirit and he gives them to each one, just as he determines.
The prayer of confession was:
Loving God, Forgive us for deliberately doing all we can to distance ourselves from anyone who is in the midst of suffering. Forgive us for not appreciating the extent of Jesus' suffering for us so that we can always have hope. Help us to realize that because of Jesus' example we never have to fear suffering, we only have to trust and He promises to see us through. This, for obvious reasons, spoke to me directly.
I gathered the boys from Sunday School and we were headed home.......quickly of course, we had promised only one hour! (Good thing our church is only a couple of miles away.) What a wonderful thing to walk in the door with a greeting from a nine year old girl who was so happy to see me. I told her that we all prayed for her in church and she thought that was awesome. I then went to update the website and showed her the new pictures to which she replied "mommy, my face is SO big!!!"
I said, "Alexandria, no it is not, and anyways, who cares about that, it is those mean old steroids that make your belly and face do that, and besides you are absolutely BEAUTIFUL inside and out!!! Of course, it breaks my heart that she is bothered by it, but I feel it is a small price to pay for the good the steroids do.
She has decided that on February 6th, she wants to celebrate her "half-birthday." She cannot wait until August. So, we were busy planning what kind of cupcakes she will have, etc. Then, Alexandria and I decided to take a nap!!! This is becoming a habit. Oh well, I suppose there are worse things than a mom who takes a little siesta in the afternoon, right? I had a killer migraine and asked Alexandria, "how do you do it, I mean, you are SO strong and you deal with pain and not feeling good all the time......How do you do it???" She said, "mommy I get all my strength from you." Of course this made me feel so good. I said, "I don't know Alexandria you are a billion times stronger than I could ever be."
Tonight, before the Super Bowl, a group of teens from "The Tide" youth group at church came to visit Alexandria. They serenaded her, if you will. They were outside in the back of the house and sang her favorites "Jesus Loves Me", "Awesome God" and "Shout To the Lord." She LOVED it. We all did. I must tell you that it warms my heart to see a bunch of teenagers, (especially the young men) here tonight. To know they are strong believers and witnessing so much through Alexandria is so powerful and touching. Thanks to all of you that came, it is greatly appreciated. Alexandria was feeling good so we watched some t.v. tonight. Not the Super Bowl....not interested...sorry football fans. Alexandria was in her "ask a million questions moods," which I love. We talked about our favorite song, favorite foods (of course) and our favorite place to go. During this particular Q and A session, she asked, "mommy, if you had one power, what would it be? Without hesitation I said, the power of healing, of course!! She said, "are you sure about that, because I would not be who I am today if I never had cancer." "I would never have been so blessed and have so many people know about me and care about me and praying for me all the time." Well, what do you say to that one?!?!?! I was speechless. I asked her, "Alexandria, you would not have the last two years taken away if you could?", she said emphatically, "No Way!!" I did not cry then, but as I share this story with you and watch her sleeping across the room, tears stream freely down my cheeks. How incredibly precious and innocent her outlook on things is. Her perspective gives me the strength to face another day, the courage to keep fighting this fight with her. She will never give up........she feels this is God's gift to her.......that she would bring so many people together. To change one single life for the better would have been enough for her to do it all over again. She was willing to endure it all for the sake of helping others......I assure you, I would not if given the choice. But she has done this, and would not change a thing, and I am amazed that this is her interpretation of life at age nine. I know she could only get this strength from our Father above. Very few have that kind of strength. Typically, people do not realize something so wonderful until they look back and reflect on that particular situation. I am so thankful that I see it for what it is right here, right now. Thank you Lord!!! I certainly will have one long talk with God when I get to heaven for complete understanding, but I trust that what we have experienced is all for the greater good. I trust Alexandria has some serious spiritual gifts and uses them freely....God's perfect plan.
Thanks to the Newsham family for the Mexican food last night! Several people have e-mailed me asking who the contact person is for meals. Please call
Tammy 636-561-8288 or Nancy 636-561-2804 for information. I am sorry that I have not had time to e-mail everyone back personally. I do read each and every message sent to us. Thanks to the Day family for the adorable stuffed animal kitty (see pictures). She LOVES it and tell your girls she named it "Bella." Thanks SO much to all of you who have participated in the "Adopt a Child" at chubbychic.com. I, along with the many other families are eternally grateful. I have also heard from baby Kristan's mom, Lee Ann, who tells me that her website has gone from 10-20 hits a day to 100-200 hits a day. WOW....absolutely AMAZING, you guys are AWESOME!!!
Alexandria will get labs drawn first thing in the morning. Please pray for NO blasts. I will post in the afternoon when I get them. Keep praying, God is listening!!!
Love In Christ-
Alison
Friday, January 24, 2003 at 07:00 PM (CST)
ATTENTION ATTENTION ATTENTION, yes, I'm talking to you, ya lurkers!!!!!!!!!!!!! (haha)
Ask and you shall receive, huh?
Thanks to all who have left messages. There seemed to be a lull in the action but I think that most of you could not get on the website for some time. Grant accused me of trying to "vilify" him.....oopsy!!
Here's the deal.......out of the 303 kids that we have on Caring Bridge who want to be adopted, 101 of them still need to be adopted. So, here's the challenge folks, let's see how long it takes for us to get all the kids adopted. Please search your hearts, search your souls and think to yourself, "can I make a difference in someone's life?" Can a make a daily committment to leave a guestbook entry to one of the families whose child is suffering from a childhood illness? I cannot explain to you the significance this website has had in my life. I know other parents who feel the same. However, some people have not had their websites in the newspapers and spread around the world like we have. Your commitment to this cause will be meaningful I assure you. It is SO nice to know that people you know care, it is even more amazing to hear from people you don't even know. Again, as I said this morning, it does not need to be something overwhelmingly thought-provoking just a simple "hello", or I am thinking about you will suffice. I am so thankful that a mom whose child has cancer thought of this wonderful idea. This is what God's work is all about. Also, I will share with you the fact that some of these children have passed away. Please do not hesitate to adopt these families, they need our support now more than ever before. If you would like to adopt a child here is what you need to do.......
go to www.chubbychica.com
click on caring bridge to the left
the rest is self explanatory
I, along with the many other families sincerely appreciate your help regarding this. Let's all try to make the world a little better place.
I have also added a link to baby Kristan's website on Alexandria's website. She is the baby who had a BMT at the same time as Alexandria for a rare blood disease. Please visit her site as I am sure they would appreciate it as well. I recently heard that Andrew, who had the BMT next door to Alexandria, who relapsed after Alexandria, and received the Clofarex as well, is in COMPLETE REMISSION!!!!!!!!! How awesome is that?!?!? We are SO thankful for this and are continuing strong prayers for the entire Olsen family. Thanks also go out to the Olsen family for the balloons and "cookie bouquet" for Alexandria. She loved it!!!! Thanks to the Mazur family for yummy pizza, lasagna and cookies. Thanks also to Ms. Kelly for the great Chinese food lunch today....boy, we are really packin on the pounds over here. That New Year's resolution to eat better.......YEAH RIGHT!!!!!!
Alexandria had a pretty good day today. She did ask me, "mommy why am I SO tired, I hardly have any energy?" I told her that normally when she has an infection, we are in the hospital for weeks, resting and getting better. This time, the doctors let her come home on the antibiotics to get better in her own bed. I explained that she normally does feel tired when she is healing from an infection and by the time she gets home she has already recovered. This time she is recovering at home......a true blessing. Today, the doctors decided to change one of the i.v. antiobiotics that they felt may be more effective. The chaplain from Wings also came today.
Well, that is all for now, must get to the bedtime routine. I will post tomorrow.
Love In Christ-
Alison
Friday, January 24, 2003 at 05:48 AM (CST)
First and foremost, please know that Grant's terminology of what he describes as a "lurker" was only a joke. We do appreciate each and every person who comes here...GREATLY!!!!!!! We know that so many of you care and are concerned. I just wanted to make sure that the number of hits was not increasing from just me logging on (haha). I really am sincere about this. We are SO thankful that so many of you are so loyal and devoted to coming to the website to check on Alexandria and say a prayer for her. The gratitude we feel is unbelievable. I was really just talking to the people who did not leave a message or their name because they felt like they had to say something profound for it to be meaningful to us. I wanted everyone to know that this website has, in many respects, been a lifeline... a way for me to not only record my thoughts but a way for me to vent and just share Alexandria with you all. Please feel free to come to the site as many times as you would like, just please say a prayer before you go. I sincerely believe in the power of prayer. We realize that our prayers may not be answered in the way we would like. God's will will be done. We will keep praying for a miracle until the end though. Amazingly, I have not cried too much in the last week. I think it is because I am holding out hope that she will be completely cured on this earth. I also realize, that if God calls her home, I will have the rest of my life to cry and grieve. I want to spend this precious time with her, loving her and being happy. This is no easy task I assure you due to the enormity of the situation. I could never do it on my own, therefore I know God is giving me this strength and I give all the glory to Him.
A mom from caringbrige is starting an "adopt a caring bridge child" group. Many of us are getting a thousand hits a day to our websites. Unfortunately, some are not as blessed with this and do not receive many hits but still need prayers being sent up for them. They need words of encouragment. We would love for others to feel the same wonderful feelings that we do when we see that so many have visited the site. I will list more information on the website later today so that you can "adopt a family" if you chose. The impact that a kind word or prayer can mean to a family in this situation can make all the difference in the world.
Thanks to the Behlmann family for a tasty dinner last night(fettucini, Alexandria was certainly happy!!)
Love in Christ-
Alison
Thursday, January 23, 2003 at 07:32 PM (CST)
Okay guys.....where are the journal entries???? We have tons of log-ons (or lurkers as Grant calls them) but not as many sign-ins. Please know that it is okay to leave just your name or a quick "hi." It need not be something profound, thought-provoking or inspirational....we just like to see who has been here. We still cannot believe how the number rises so much each and every day...it is AMAZING!!! That is a ton of prayers for Alexandria, and she needs each one.
Her counts/immune system is still zero...and the culprit is yet to be named. Either the leukemia is packed in her bone marrow and will not let any good cells grow (this is what the doctors think) or, the new chemo + the Clorafex is still working on her marrow to keep it surpressed.
She had a follow-up CT scan on Wednesday when we were in-patient. The results were good. Although the doctors cannot confirm the true reason behind the lesions on the brain....1) the methotrexate from the Thursday before leaking out of the spinal fluid or 2) the leukemia...the end-result is that it has basically resolved. If it was the methotrexate this would resolve itself with time only. If it was the leukemia, it would resolve with the cranial radiation.....so the problem is, we will never know which it really was. There was no way we could do a brain biopsy with no platelets, she would bleed and this was the only way to tell definitively. So you see, Grant and I were faced with a difficult decision and had to proceed. If it was the leukemia, her vision, disorientation would have only gotten worse and she may not have been able to get her vision back. So, we did what we and the doctors thought was best.
She was feeling tired today. She did perk up this afternoon. That was right after we got that blood pressure down from 166/120!!!!!!!! YIKES!!!!! She took a little nifedipine sublingual (under the tongue) and we were back in the good, thank the Lord.
Thought I would share this before I'm off to put the kids to bed:
Count your blessings instead of your crosses
Count your gains instead of your losses
Count your joy instead of your woes
Count your friends instead of your foes
Count your smiles instead of your tears
Count your courage instead of your fears
Count your full years instead of your lean
Count your kind deeds instead of your mean
Count your health instead of your wealth
Count on God instead of yourself
-Trinity Church Chimes, Youngstown, Ohio
Counts 1/23/03
WBC zero
Hgb 13 (got two units of blood on Wednesday)
Platelets 30 (got a big bag on Weds.)
God Bless you each and every one and please continue praying
Alison
Thursday, January 23, 2003 at 02:29 PM (CST)
It is SO good to be home. Alexandria is tired and usually is after a few days at the hospital. She has had some high blood pressure and a slight cough. She is her witty self again that is for sure. Yesterday at the hospital the infection disease doctors were saying all these big, complicated words and Alexandria just looked at them and said "if you all are going to keep talking like this you need to take it out into the hall because I don't want to hear it!" Usually she just tunes us all out. If there is anything scary, or that she should not hear, we do take it outside. She has such a sense of humor.
I am trying to do some things here and there with other kids. I know I will have the rest of my life with them and I know I need to focus on Alexandria. However, I do miss hanging out with them. I picked Hayden up from school today and since he did SO good on his report card I treated him to McDonald's. Addison has gone back to preschool and the boys have gone back to school for the time being.
We are able to do all of Alexandria's medicines and antibiotics at home which is such a blessing. Althouggh we are beyond happy and it is certainly worth it to do everything at home, it is a great deal of work. Three of the antibiotics are I.V. Unfortunately, we have not been able to get blood and platelet transfusions at home. We will need to go into the clinic for this. We will get lab results later on today, and so I will post them then. Please keep praying for NO BLASTS and maybe even count recovery.
Kelly Rader came over again today to play and work with the kids. I cannot tell you how much we appreciate it. She also gave Michelle and I the WONDERFUL gift of a massage!!!!WOW!!!!!!! How awesome is that?!?!? I could certainly use it. Michelle went today and I will go in the near future. THANK YOU KELLY!!!!!
Thanks to the Bernstein's for dinner last night!!
love and God Bless-
Alison
Wednesday, January 22, 2003 at 12:58 PM (CST)
Guess where we are headed????? HOME!!!!!!!!!!!!!!!!
Although, I do believe the reason behind it lies in the fact that they are FULL to the gills up here on 9 west. Every room, every bed has a child in it. It is a scary thought actually. That that many children are affected with cancer. So, we will get to go home in 2 hours and 31 minutes (but who is counting!) Alexandria is beside
herself with excitement to get home. Can't blame her either.
I went home this morning at 4:00 a.m. to get the kids ready for school. Hunter said that he did not want to go to school unless I was there to help get him ready. It seemed like a long drive home, however, it always is an opportunity to pray and think. Sometimes I get home and wonder, how did I even get here? I had my mind on so many other things I don't really remember the ride. I don't mean to scare the rest of you that I share the road with, but it is true. Then I realize, God must have carried me home. Grant stayed here at the hospital with Alexandria of course. It turns out all the kids were not feeling good so I did not end up taking them to school anyways. I came back to the hospital a while ago. I was away from her for several hours....the longest time in a long time. I feel like a need to be close to her 24/7. When I left the house this morning, a wonderful neighbor, Kelly Raider, had brought over lunch. She also had brought over some arts and crafts things and some other activities to do with the kids. Is that so awesome! Thanks so much Kelly. I am sure that the kids enjoyed it so much. It is these acts of kindness, compassion and general helpfulness that are helping Grant and I and the rest of our family through this most incredibly difficult time. I will update again later, gotta pack.........YEE HA!!!!!!!!!
God Bless-
Alison
Tuesday, January 21, 2003 at 01:55 PM (CST)
Alexandria is taking a little siesta and so I have a moment to write. We know what infection we are dealing with now. They usually remove the broviac catheter when this bacteria gets in the line or the blood. Given the circumstances, we cannot pull the line. SHe needs it too badly right now, and also with NO immune system and no platelets, she could have serious complications: infections, bleeding. This would be two separate surgeries, one to take out, let the infection clear and then put another one in. It makes better sense to us to just leave it in, and treat her with antibiotics for the next several weeks. WE are trying desperatley to convince them to let us go HOME!!!! Alexandria says to me this morning, "okay mommy, what criteria needs to be met before they let me go home?" She said, "I don't have a fever and I feel great....what is the problem?!?!" The doctors would typically let her go after no fevers for 24-48 hours, no active badteria growing in her cultures and count recovery (an immune system). Well, realistically speaking, she will not recover her counts, and therefore we do not plan to keep her here. Debbie is trying to get Dr. Shenoy to let us go home tomorrow....we shall see. The fact that she feels so good is definitely a bonus. I am SO thankful. She usually feels so bad when she has an infection like this. I am hoping with all the antibiotics she is on, they can kill the mean 'ol bugs even though she has no immune system. Please say a prayer that the doctor see's things as we do and they give us a ticket outta here.
gotta run to ct scan-alison
Monday, January 20, 2003 at 08:31 PM (CST)
Wow, double update day, amazing, huh? We do not know a whole lot more about what kind of gram negative infection we are dealing with yet. Debbie R. will be back tomorrow which means we will finally know what is really going on. Dr.H was on today. This means that he ran in the door, did an obligatory one-second chest listen and back out the door before you even know what hits you, much less, ask a question. He is usually half-way out the door in mid sentence and we are either chasing him down the hall trying to gather info, or we relent knowing that we will get the answers we need, in an appropriate manor from Debbie. I gotta tell you, I really hope they pay her some big bucks because she is the only reason a lot of us stick around here. I know it sounds like I am bitter or spiteful, it is just that we have been through SO much here and SO much of it has not been a positive experience. The nurses are taking good care of Alexandria. They have a great deal more compassion. Hard to believe that Children's Hospital just ranked in the top ten in the nation? Who in the heck did they poll???? What exactly was the criteria??? Don't even get me started. Some people, who will remain nameless, are just treating us like this is just a lost cause, and therefore they are not willing to expend a great deal of mental energy or time on her. From the VERY FIRST DAY Grant and I met with the oncologists, and they lost her first bone marrow aspiration, we told them they had better treat Alexandria like she was their own child. Now we feel like they should treat her as though she will live, not as if she is dying. They owe us that.
On to more positive thoughts....Alexandria said some very cute and amazing things today. She said out of nowhere, "Mommy, I feel so loved." "It is so touching that people always help us in our time of need." I am just thankful, happy and blessed." She said, "we have such a good family, friends and neighbors." I asked, now how old are you again?" She is nine and a half going on 35. She has had to do a great deal of growing up in the last two + years. Hunter, the other day, in stark contrast to Alexandria's statement bluntly asked, "why are people being so nice to us, and why is everyone bringing us food?" Gotta love their differences, huh? I told them that when a family has a baby, or moves to a new neighborhood, or has a child that is in the hospital alot, people like to help them out, and bringing by a meal or treats is a nice way of doing that. Speaking of which, thank you to the Erusha's for a yummy breakfast Sunday morning. Thank you to Kristy Forbes, a pastor at St. Mark Pres.) who brought by adorable "Hello Kitty" stuff. How did you know that she loves Hello Kitty so much? Probably because she is a cat lover, huh? Thanks also to the Gabels for tasty KFC tonight for dinner. I have not seen it yet, but I heard that Dave Whalen has bound the Alexandria's Angels Website journal entries and guestbook. THANK YOU, THANK YOU!! What a wonderful gift and keepsake for us. Our family is thankful, we are happy and we are truly blessed !!!
Saw this and thought I would share
Hope that is seen is no hope at all. Who hopes for what he already has? But if we hope for what we do not yet have, we wait for it patiently.
Romans 8:24-25
Why does God say to be joyful in hope? Obviously, there must be many times when we lack joy in hope. Think about it. The focus of our hope is yet to be fulfilled; we don't yet possess that for which we hope. And you'll agree that it is hard to be joyful about something we don't yet have! God wants me to be joyful about future things. Just as we have the command to be faithful in prayer and patient in affliction, we have a command to be joyful in hope. How can God command joy? It is easy once we realize what's over the heavenly horizon.
Joni Eareckson Tada
Let us all keep the faith and hope, and storm the heavens with our prayers for Alexandria!
God Bless-
Alison
Monday, January 20, 2003 at 11:16 AM (CST)
Okay folks, here is the latest........
We came in last night with a fever, it went up and down all night. Her blood pressure was very low as well. She was shaking uncontrollably and felt a little crummy. They drew cultures out of both of her lines. So, in the past she has had three "gram positive" infections. We almost lost her on two of three of these times. Unfortunately, this time she has a "gram negative" infection that grew out in 8 hours. Gram negative infections are much harder to treat and the worst news of all is that she has ZERO white blood cells.........NO immune system to fight it AT ALL. There is a silver-lining, believe it or not. She feels pretty good. She is watching Arthur right now. We just got back from radiation, her last treatment. We were informed that her urinalysis from last week grew something the day after we left the hospital........NO ONE CALLED US!!!! Does anyone see the trend here?!?!?!?!? I am really getting tired of how consistent they are at screwing things up. I must tell you that to go through this ordeal for two and a half years is more than enough burden in itself to endure. However, when things happen that are oversights, lack of basic human rights, (pain management in an ER), and just plain STUPIDITY, it gets very frustrating to say the least. (Oopsy, did I forget to tell you that I turned off the camcorder for a minute and hopefully pastors Lew and Gary will not read that!)
SO, once again, we need serious prayers coming our way. I know you're probably thinking....how much more? what else can go wrong? Well, quite honestly, Grant and I are wondering the exact same thing. We are, however, SO comforted by the many e-mails and journal entries we are receiving. Thanks for each and every prayer....I will update later today. I just asked Alexandria how she feels and she said "pretty good, and I feel confident that I will get outta here tomorrow at the latest".....we'll have to see about that one.
God Bless-
Alison
Sunday, January 19, 2003 at 08:15 PM (CST)
Alexandria has a 103.5 fever, and we are going to the hospital.......please pray
alison
Saturday, January 18, 2003 at 08:10 PM (CST)
I have gotten many requests for our new address (oops, never sent out those change of address cards ..no time)
Our address is:
241 Chestnut Hill Drive
O'Fallon MO 63366
phone number 636-561-8680
Today was another great day at the Haddock home. Grant took Hunter, Hayden and cousin Austin to in-line skate at the roller rink. Alexandria, Addison and I took it upon ourselves to curl up in my bed and take a good nap. I must say that over the last nine and a half years since Alexandria was born, I have not taken many naps. Every time I tried to lay down, I would think of all the things I could be doing instead...folding laundry, cleaning, etc. I woke up today and felt so rejuvenated...after some caffeine of course. So, Alexandria's lesson for today is TAKE A NAP....or at least take time to sit quietly and reflect, pray, meditate or just listen to what God may tell you. Our lives are so consumed with activities and busyness that sometimes we forget to just rest. I admit, it is VERY hard to do, but I have been given the opportunity with this situation, to do just that. We spend a great deal of time at home, all together, just relaxing. I know that if we were not in this situation we would be running from one sport to the other and not spending good quality time together. So, we view this as a blessing. I am thankful that I am learning such good life-lessons from Alexandria when I am 33 years old. It takes some a life-time to figure it out...and some never do. I am blessed...my cup runneth over!!!!
As I sit here typing, the kids are all in my bed across the room, and I am thanking God for this time. We do not know if it will be one week or 4 but I will take it. She is having such good quality of life right now and feels so good. This time is SO precious to me. Hayden just asked Alexandria "Sissy when are you going to be done with leukemia?" She said, "who knows for sure but probably about another year or so." Hunter just turned to her and said "Sissy that's not true, you could have a miracle!" She said, you're absolutely right Hunter, miracles happen all the time!" They just never cease to amaze me. They make me SO proud. While we are on the subject of miracles, I was reflecting myself on Alexandria and the many miracles that have been bestowed upon her and myself since the beginning of her life.
First of all, when I was nineteen years old, I was diagnosed with endometriosis, (lesions on your ovaries) a leading cause of infertility. The doctor who did a laparoscopy told me that there was a very good chance that I would not be able to have children. So, when Grant and I got married a few years later, we wasted NO time in trying to start a family. After only seven months I became pregnant. Unfortuantely, at the same exact time I found out this wonderful news, I was in a car wreck. This was the first car wreck I had ever been in. How could this happen???? I called my doctor's office and the nurse said, go home, lay down in bed for the entire weekend, and we will run another test on Monday. I was TOTALLY devastated. I could not believe I could be given this gift and have it taken away from me so quickly. I went home and as long as I live, I will never forget the conversation that I had with Grant. He knew something was wrong with me. I did not want to get too upset and cry, for fear that it would make the situation even worse. So, Grant sat on the floor, in front of the chair I was sitting in, and I told him the good news and the bad news. He was as shocked and scared as I was. We both prayed a great deal that weekend. Turns out it everything was just fine. Then, more devastating news came. My father, Johnny Hunter, was diagnosed with liver cancer. I wanted so much to be there for him and his wife, Pat, and his kids Courtney and John. I was so saddened by this news and therefore I was having more complications with my pregnancy. I remember very vividly, visiting my dad, days away from him leaving this earth. I did get to tell him the joyous news that Grant and I were going to have a baby. He was on a great deal of morphine at the time, but turned to me and said so clearly "you're kidden me?" He was so proud. Then my dad passed away and my symptoms increased and I was ordered on bed rest....again. I kept telling myself, you have to just postpone your grieving, because there is another little life depending on you right now. I remember my dad's funeral so well and the sadness that was so overwhelming and all-consuming. There were times in the months following that I thought for sure I would lose the baby. Then, a few months before the baby was due we had an ultrasound. The technician noticed there was not much amniotic fluid and I needed to go back on bed rest for the best chances for baby's survival. Those four weeks on bed rest were very long. I knew that if it was God's plan to take her, that Grandaddy Johnny would take care of her in heaven. But, I did pray very hard that this child of mine would make it. On Augsut 6th, 1993, three weeks before the due date, God gave us a wonderful gift.....a happy, healthy baby girl...Alexandria Nicole Haddock, 6 lbs. 4 oz. Alexandria has experienced many miracles since her diagnosis on November 7th, 2000 as well. She was diagnosed with one million white blood cells in a CBC, and they were most concerned that she would not make it through that first night. Her hemoglobin was 4.0 (normal is 12+) and she had very few platelets. She has had two separate, horrible, life-threatening infections with no immune system to fight it with either. So, you see, miracles do happen, and they have happened to Alexandria and therefore myself, on more than one occasion. She is my miracle child, and that is all there is to it. It is my most sincere and hopeful prayer that God will bless us all with another "Alexandria miracle" and she will have continued life on this earth.
Thanks to Nancy Cole for Red Robin's. Thanks to the Riendeau's for the tasty cookies. Between Alexandria's steroid cravings (sometimes we snack then too) and the good food everyone keeps bringing over, the next miracle will be that Grant, Michelle and I do not gain 100 pounds. Thanks to the Davis family for the videotape of Christian songs...we love it!!! Thanks to Pam Passwater, the kids former homebound teacher, for the gift certificates for movie rentals. I just cannot explain the feelings of gratitude for all that is being done for our family. I am so thankful that through Alexandria's journey she has touched so many lives, and in return our lives have been touched as well. Does anyone else get the feeling that maybe this was God's plan? I certainly do. I have gotten SO many e-mails from so many people telling me what a difference Alexandria has made in their lives. Or that somehow, after reading this journal their trials and tribulations seemed trivial in comparison. I assure you this was never my intention or goal, but what a wonderful thing that we could somehow be helping others. I believe that is exactly what God wants. We give all the glory to God for each and evey miracle, gift and blessing this family has received.
God Bless You All-
Alison
Friday, January 17, 2003 at 06:37 PM (CST)
WOW!!!!!!!!!!!!
I just cannot believe that I just logged on to the website and I was number 40,312 !!!!! I have saved each and every e-mail anyone has sent me regarding Alexandria since her diagnosis. I want to eventually copy and bind this journal and all the guestbook entries too.
It never ceases to amaze me the number of people that are coming to the website. It is such a source of comfort.
Today we went back to Barnes for radiation. Sometimes Grant and I (out of the very best interest for Alexandria and being her best and only advocate) get a little combative...a little protective ....and a little (okay a lot) assertive when it comes to her care and what our expectations are of her healthcare providers. Today, we sat ever so patiently for her radiation, not complaining once to ANYONE that they had not come to get us and it was one hour and forty minutes PAST her radiation appointment time. How dissappointed we were to learn when they finally came that "they did not even know we were there!!!!!" FRUSTRATING FOLKS, VERY FRUSTRATING!!!!!!
So, while we were waiting, I was reading to Alexandria in my prayer book the chapter on patience. She was antsy and I cannot blame her. I guess the whole thing was somewhat ironic. While we were waiting, we also were videotaping Alexandria. I know I will be so thankful for these tapes someday. We were talking about all kinds of great stuff. She was asking about glasses again. I was telling her how wonderful it was that God gave us five senses so that, if by chance, one of the senses were ever taken away......we would still have the others to rely on. Then I said, let's think, which of the five senses would be the worst for you to lose...would it be your sight?" She said "no way definitely my sense of taste, yep, that would be the worst." Good 'ol steroids kinda rule your life when you're on them I suppose. We have been setting the camcorder out on the counter and videotaping Alexandria and the other kids alot lately. Several times I caught myself from saying something I really shouldn't because the tape was rolling. Then a thought occured to me. "What if each of us lived like the camcorder was always turned on, recording our every move and words. YIKES!!!! Wouldn't the world be a much better place if before we spoke we asked ourselves the two questions 1) would I want anyone else to hear these words or 2) would I say this in front of my pastor? If the answer is "no", maybe we should re-evaluate?!?!! Believe me, I am just as guilty as the next guy, but I think I will start acting as if the camcorder is always on.
The people in radiation said that they are always hungry after Alexandria leaves because she is always talking about what she's going to have for lunch. Well, she had to make a run for the border today, so Taco Bell it was. She was eating on the way home, but very slow and so I asked her if it tasted okay? She said "mommy I am just trying to savor the flavor!" She teaches me many things each and every day. I cannot remember when I tried to "savor the flavor." I guess that is just how she works her life...she appreciates everything.
The hospice nurse was here today and said they have temporarily made her a "supportive care" patient, vs. hospice. I know it is semantics people, but that was a really good feeling, even if it does not last long. We will not get counts again until Monday morning before radiation. Then we will probably need to go to the clinic for platelets. I can tell she is low. When platelets are low they get something called petichae. (pa tee kee I) It is bleeding under the skin in certain areas on the body. Usually, it is on her neck, face and chest.
Things just cannot be uneventful around here. 15 minutes after the nurse left, Alexandria went to the bathroom and drug her i.v. morphine line right through the toilet!!!! YUCK!!!! So, we had to call the nurse and the pharmacist and change the line out. WHOOPS!!! Oh well, we would never want life to be boring and dull, that is NO fun. Anyways, the doctors wanted to titrate her morphine dose from 1.2 mg. to 1.0 mg. so it all worked out in the end.
Thanks so much to the Boyle's for a great dinner tonight. Someone from out of town e-mailed me and asked how they could help, since they could not bring dinner by. They asked if gift certificates to restaurants would be of any help. We are eating out alot, so I guess that was a really good suggestion. I want everyone to know that each and every thing you are doing for our family is SO greatly appreciated.
Let us all try to remember to stop and smell the roses...really savor the flavor of life. We will all be better off for it.
God Bless-
Alison
Thursday, January 16, 2003 at 07:59 PM (CST)
Our day began with viewing an absolutely beautiful snowfall here in St. Louis. The good news is that it did not snow too much. It made our travels to Barnes and radiation less tricky. She tolerated the radiation even better today than yesterday. After she sat up on the table she said I am really having a tough time here. Of course I said, "why what's wrong???" She said "I really cannot decide if I want to eat
Chick-Fil-a, or Fazoli's!!" Well, if that is the biggest of her worries...... We decided we would have one for lunch and one for dinner...perfect!!!! So, off to Chick-Fil-A, actually Grant ran into the mall to get it while Alexandria and I sang our hearts out in the mini-van to our favorite Christian songs. There is a song that she sings and loves so much entitled "All Things Are Possible."
It goes:
Almighty God my redeemer
My hiding place my safe refuge
No other name like Jesus
No power can stand against you
My feet are planted on this rock and I will not be shaken
My hope it comes from You alone
My Lord and my salvation
Your praise is always on my lips
Your word is living in my heart
And I will praise you with a new song
My soul will bless you Lord
You fill my life with greater joy
and I delight myself in You
And I will praise you with a new song
My soul will bless you Lord
When I am weak you make me strong
When I'm poor I know I'm rich
For in the power of Your name
ALL THINGS ARE POSSIBLE, ALL THINGS ARE POSSIBLE, ALL THINGS ARE POSSIBLE, ALL THINGS ARE POSSIBLE!!!!!!!
-Darlene Zschech
Well, I do not have to tell you what hearing her sing those words does to me...I think you know. It makes my heart sing with JOY!!! There are two "Shout to the Lord kids" cd's that we got at Target a few months ago. I HIGHLY recommend them as they have brought much joy to our family. We know all the words and like to belt them out frequently. It is kids singing the words on the tapes and they are awesome.
Alexandria had a really good day today. BLESSINGS, BLESSINGS, BLESSINGS!!! I did receive a call today from our nurse stating that she had Alexandria's CBC lab results. She said she had been on the phone with the lab for 20 minutes with the lab tech telling him 1) he had the wrong patient or 2) he had the wrong date on her labs and was not looking at today's results. He assured her that he looked at it himself and HE DID NOT SEE ANY...THAT'S RIGHT, NO BLASTS IN HER BLOOD DRAW!!!!!!!!!!!!!!!!!!!!!!
So, the chemo she received is working. It has cleared the blasts from her blood, not really sure about the bone marrow. Now, before we get ahead of ourselves, let us remember the Clofarex, and how it cleared the blood but NOT the bone marrow. Grant and I are FULLY aware that this is not a long-term solution. We realize it all too well. But guess what.......between the cranial radiation and the blasts being cleared from her blood (they could have gone up by the THOUSANDS AND THOUSANDS!!) this just may have bought us an absolutely WONDERFUL gift. The gift of time. We called the docs and pleaded with them to start her back on the 3 drug induction...because it is doing SOMETHING!!! They agreed but there are some issues. One of the drugs she gets on the protocol is L-asparaginase. With continued use of this drug, you can have terrible side effects with the pancreas. This would cause a great deal of pain, hospitalization, and no eating or drinking, in other words PURE TORTURE for Alexandria. So, we decided to leave that drug off too. So, she will only get the prednisone and vincristine. This is not neccesarily about a cure it is about prolongation of a beautiful little life. There are really no side effects (other than being really hungry...big whoop on the grand scale) to doing it. However, we have such a wonderful thing to gain, more precious memories with Alexandria. Of course, I am still holding out for that miracle, for the record. So, the roller coaster ride continues. For the longest time I wanted to just get off the roller coaster, now I am holding on to it with all my might. So, please know this ....
GOD IS LISTENING TO EACH AND EVERY PRAYER, SO KEEP IT UP!!!
Must go, Alexandria needs me....isn't that great?!? If she only knew how much I need her too!! She is requesting lemonade and fettucini...life is SO good!!
A quick thank you to the Hollit family for dinner tonight. Thanks to my Aunt Olivia for sending the most beautiful bouqet of roses. Thanks to Connie Robertson for the beautiful flowers as well. Thanks to "The Tide" Youth Group at Dardenne Presbyterian Church for all of your kind letters. Thanks to Alexandria's former Girl Scout Troop for the angel bear and wonderful notes. Thanks to Mrs. Croak's 3rd grade Sunday School for your kind messages as well. Thanks to the Baulkenbauch's, Erusha's and Newsham's for dinners and yummy treats this week. Thank you to Crossroads Elementary, and Hayden and Hunter's teachers for being so understanding and helpful at this time. If I am leaving anyone out, and I am SURE that I am, I AM SO SORRY. I will probably remember at 3 a.m.
Counts:
WBC 0.2
HgB 11.4
Platelets 16
love and God Bless-
Alison
God Bless You
Wednesday, January 15, 2003 at 08:30 PM (CST)
Hello to everyone-
My day began with the sight of a beautiful, courageous and absolutely adorable little girl named Alexandria. She and I have decided to stay downstairs in Grant and my bedroom since her bedroom is too far away from the places of priority in the house...mainly the kitchen (steroids!!) Her bedroom is the farthest away upstairs and I want her close to me day and night. She and I love to snuggle up in this big bed with two cats and Addison Madeline usually joins us at some point and time during the night or early morning. Sorry Granty, we will sleep in the same room, maybe even the same bed again someday, I promise.
I was running around this morning trying to get ready to take Alexandria to her radiation appointment at 9:30 a.m. at Siteman Cancer Center at Barnes Hospital. That is where she did her TBI (total body irradiation) and that is where she is now getting full cranial radiation. Guess what she said to me? "Mommy, do you ever wake up some mornings and just feel...lucky?" I said, "actually, Alexandria, every single day I wake up and see your beautiful face I am reminded that I AM THE LUCKIEST MOM IN THE WORLD!!!!!!" She said, "Really?" I said, "you better believe it!!!" She said, I feel lucky to have you as a mom, you take such good care of me!!" Well, I must say, life just does not get much better than that. To have a daughter who loves me so completely and unconditionally...who trusts me and knows that every single move I make, every decision I make, is made with her best interest at heart. I know I touched on this issue yesterday about to tell or not to tell her what is happening. I would NEVER do ANYTHING to hurt my baby. Furthermore, if you do not agree with our decision, may I make a VERY STRONG request to keep your opinions to yourself. Grant and I have prayed for hours, and for the time being, feel this is what our hearts, minds and God Himself wishes for us to do. We know that when God calls her home she will feel the peace of our Lord surrounding her. She will feel His love and arms wrapped around her and telling her she is safe and she will see us again someday. I do not believe, at this point, she thinks she is dying. Why then would she ask me yesterday, "when I am 13, how old will Hunter and Hayden be?" She would not be discussing plans so far in the future. You know what she thinks??? She thinks and knows that Jesus Christ is her Lord and Savior, she knows that when she passes, whenever that time may be, that she is going straight to heaven. For the record, it matters not to me what any individual may say or think, it matters to me what is in my heart and what is best for her. I know my daughter better than any other single person on this earth. Only God knows her better than I. She would ask me or tell me if she thought she were dying right now. She knows that if she has questions, she can ask me. She is not shielding or protecting me. She is happy to be alive each and every day......as we ALL should be, since NONE of us know when God will call us home. I can't tell you what my exact words will be if she does ask, I just know that I will be selective and careful, for I DO know for a FACT that she will be scared. Not because she does not know that her grandaddy Johnny will take such wonderful care of her there, but because her mommy, her very best friend, her teacher, her confidant, is not there with her. This is really all I care to further share on this subject matter as I am somewhat regretting sharing such a personal thing at this point. For the most part, we received overwhelming support for our decision. I really only shared the information in the first place so that people would not accidently share with Alexandria or her siblings information that we did not deem appropriate.
Now, off the soap box and on to other matters at hand. Let me say THANK YOU, THANK YOU to the Pyle, Johnson and Croak family for wonderful dinners brought to our home this week. It is SO greatly appreciated, you could never know. The gifts and cards we are receiving from so many of you are so comforting. The continued correspondence via e-mail and journal entries is overwhelming. It gives us such peace and even understanding at this difficult time.
I want to also take this opportunity to thank a dear friend of mine, Debbie Hallemeier, for her support. She is still grieving herself for the loss of her son Matthew, yet, in my time of need, she dropped everything and came to the hospital for hours on Sunday. Her husband, Dirk, came down and spoke to Grant as well. I cannot tell the comfort it was to speak to them and know that they have recently walked this unfortunate path and they are so strong. I have thanked God so many times for Debbie being brought into my life, I just never knew how much I would need her friendship, support and guidance until recent days. "God is the Father who is full of mercy and all comfort. He comforts us every time we have trouble, so when others have trouble, we can comfort them with the same comfort God gives us. In the same way, much comfort comes to us through Christ." 2 Corinthians 1:3-5 Thank you Debbie and Dirk for all that you have done for us..it is greatly appreciated.
I want to also take this opportunity to thank Grant's company, LMA North America, and all the people that work there. You all have sent us encouraging words, gifts and support over the last two+ years and we are so grateful. They have been extremely supportive and understanding of our situation and for that we say "thank you!!!" There are many companies out there that would not be as supportive as they have been.
A sincere thank you to chaplain Hal Morse, and our pastor Lew Kimmel for coming to see us on Sunday in our time of great spiritual need. It is so comforting to know that you have a Christian family who cares so deeply for our family.
The support system we have, of friends and family, neighbors new and old, has been, and I know will continue to be, a tremendous comfort to us. We believe that Alexandria has touched many people. Some of these people we do not even know. I believe the Lord is working through Alexandria and our family's experience to maybe make the world a little better place. She has made many realize the importance of a single day, a single moment in time. Each of us, each and every day, have this capacity...this opportunity. To change a life, to make this world a little better. I am proud that Alexandria Nicole Haddock was chosen by God to call me mom. I would not have traded it for anything in the world.
Alexandria is feeling well but a little tired from the
radiation. She was not too thrilled about going down there today but we told her that the radiation will help her see better. She said, "well, as long as I do not have to get glasses, I'll go." That's my Alexandria!!! She laid absolutely, positively, perfectly still during the radiation. She knew if she moved they would have to literally tape her to the table. We were worried that since she is on a morphine drip, she would itch and need to scratch her nose (morphine makes your nose itch). But, nope, she was just a trooper once again. She has not felt disoriented since Sunday. On Sunday, Grant and I were so sad and scared when she was saying, where am I? how did I get here? I did NOt throw up, etc. She was just out of it. She has not had morphine except for the first couple of days she was diagnosed. We were not sure if it was the morphine causing this disorientation and vision problems or the leukemia/brain involvement. We just really thought we had lost Alexandria as we knew her. Turns out, that was not God's plan and we have been blessed with some more days with her. PTL and BLESSINGS BLESSINGS BLESSINGS!!!!!!
Hug your kids tighter and know that God loves you and so do we -
Alison
Tuesday, January 14, 2003 at 04:23 PM (CST)
I am so sorry that I have not been able to update sooner. We got home from the hospital yesterday afternoon. Although we were elated to get out of that hospital, there is nothing that prepares you for the realization that you are taking your child home to die. No person, no life-skills class, or coping skills class, NOT ONE SINGLE THING could ever prepare you to meet with hospice. To hear the words, autopsy, coroner, DNR (do not rescuscitate.) Unless you have experienced the loss of a child, you do not know the amount of pain experienced when talking to a doctor and them to say "you are not going to win this battle, we are out of options, it is over." The pain runs deep my friends, deeper than I ever thought imaginable.
Alexandria on Sunday morning woke up and was disoriented and had blurred vision with a severe headache. We rushed her down to Children's Hospital. Unfortunately, for reasons I do not undrestand or even begin to explain...the IDIOTS in the ER would NOT GIVE HER PAIN MEDICATION FOR 3 HOURS DESPITE THE FACT THAT SHE WAS CRYING AND WIMPERING, SAYING SHE HAD A TUMOR AND BEGGING FOR MEDS!!!!!!!!!!!!!! If you detect some anger, you are darn right I am angry about it, IT IS UNACCEPTABLE and goes against her basic patient rights to have her pain taken seriously. The nurse said she "just got busy doing other things, and then when she went to find us to give us the morphine, we had gone to radiology. BULL----!!!!!!!!!!! I cannot tell you how disappointed we were with the experiences we have had each and every time we have gone to that emergency room. They DO NOT know how to take care of oncology patients with zero immune system......or pain management even.
The doctors believe, after viewing her ct scan that the leukemia has spread to her brain. They initially thought it could be 1) methotrexate that she got in her spine on Thursday, leaking out into the brain, 2) the cyclosporin that she has been on tends to look the same on ct scan but she has been off that for a few weeks and that probably would have resolved itself, 3) fungus infection - absolutely nothing they could do , 4) and they feel most likely, the leukemia is on her brain. We were told the only way to definitively tell the exact culprit is brain biopsy. Well, platelets are VERY low and this would be painful and uncomfortable and therefore not a good option. An MRI would possibly give us more information, but maybe not, and they could not get us in for awhile....imagine that???!!!??? PAR FOR THE COURSE!!!! So, the radiologist called us yesterday afternoon and said that he thought because she was experiencing blurred vision, cranial radiation may eleviate these symptoms, or at least they probably won't progress. This would not be a cure, just a possiblity of increasing quality of life. Well, as you can imagine, this is upsetting. If your child has 3-10 days to live, do you spend them in radiation for 4 or 5 days (only 20 minutes per day)? Is this going to make her terribly sick we asked? The radiologist said 5 out of 100 will get sick. Well, I have no comment on that as you know how I feel about statistics. Anyways, he felt confident that if it is the leukemia, he could get it with cranial radiation. This is all just so difficult to understand and endure. Alexandria does not know anything as we did not want her to give up and stop fighting or to be scared. The other kids do not know the details either. I have consulted many experts......not psychiatrists, not social workers or any doctors.....just good people who have lost a child in a similiar age range to cancer. They have all said that they did not tell their child he/she was dying, just let them go rest in Jesus' arms peacefully in their sleep. For now, this is our belief too, until proven otherwise. I know many of you will have your own opinions, but until you have walked the path we are walking, please do not judge. We do not want to lie to Alexandria, just provide her with information that is appropriate to her age. Do not worry about leaving journal entries with too much information, I am not reading them to her. If you want to write to her directly, and we are encouraging this, please e-mail her at AGHaddock@msn.com. We will be sure to forward it to her.
There is great comfort in knowing that her website increases daily by 1000. It gives us peace to know that so many have offered to bring over meals and in countless other ways. Do not worry about what you say not being right, or appropriate or helpful......sometimes it is just nice to see your name whether we know you or not. Know in your heart, by coming to the website, praying for Alexandria, letting us know you were here, it is a great gift you have given us. Please pray for strength and comfort for all of us...mainly Alexandria in coming days.
A sincere and heartfelt thanks to my sister, Michelle, who by being here is helping in ways she could never even know.
God Bless -
Alison
Sunday, January 12, 2003 at 12:57 PM (CST)
Hi everyone this is Michelle, Alison's sister. I have terrible news. Alexandria woke this morning with another headache (she's had them for a few days). She was having trouble seeing and really comprehending all that was going on. Alison and Grant took her to the hospital and they have done a MRI. Unfortunately the results are devastating to us all. The leukemia has spread to Alexandria's brain and it is showing lesions. They have admitted her. I don't know what else to say except pray. We need all the prayers we can get. Thanks and God Bless, Aunt Michelle
Sunday, January 12, 2003 at 12:19 PM (CST)
Hi everyone, this is Michelle, Alison's sister. This morning Alexandria woke with a very bad headache and she was having trouble seeing. Alison and Grant have taken her to Children's. They have done an MRI and determined the leukemia has spread and she has lesions on her brain. They are admitting her now. Please keep praying for Alexandria, Alison, Grant, the boys and Addison. I am at a loss for words right now. All I can think of now is that beautiful, sweet Alexandria singing to us on Christmas Eve the most wonderful songs I have ever heard. They just came right from her heart and out of her mouth. She is already God's angel, sent straight from heaven. God Bless everyone who reads this. Aunt Michelle
Friday, January 10, 2003 at 07:33 PM (CST)
I must tell you that I am continously amazed at the amount of visits Alexandria's website is getting lately. There were almost 1,000 hits just today. On the one hand, I wish her website never had to be created...never even existed. On the other hand, I know that through this long journey so many of you have been right there with us every step of the way. I know that through this experience, Alexandria has made a positive impact on so many, and that eases the pain and means there is greater purpose and meaning for all of this.
Yesterday was extremely difficult. Alexandria needs anesthesia for her bone marrow aspirations and we usually go to the Procedure Center at Children's. Well, they could not find a spot for her, therefore we had to go to the OR. In the Procedure Center, Grant and I can stay with her until she falls asleep. They won't let us back there in the OR so she had to go back without us and she was VERY upset about this. She was crying and begging me to go back with her. Of course, it just broke my heart. I felt like saying, come on people, this child has been through SO much, please do not do this to her. Then, Debbie, our PNP, walked her back to the OR. She had her Hello Kitty blanket over her head...I guess she was trying to be invisible, can't say I blame her. So, Debbie, who was doing the BMA, was also her stand-in mom. Debbie is such a wonderful person and God has richly blessed her with an incredible gift and talent for what she does. Childhood cancer is never an easy subject for parents to comprehend or handle. Debbie has a way of always offering hope...even when things look so bad. She is so caring and compassionate and Grant and I are so grateful for the countless things she has done for us in the last two + years. We have always felt like she was on our side and our team player. Alexandria loves her too.
Another reason it was so difficult was being in the OR waiting room and sitting in the exact same place we did on October 1st, transplant day. Hunter was in the OR and we waited in that very spot. Those were the only seats available yesterday.
Alexandria felt SO horrible last night. She was having bad headaches from the chemo they gave her in her spine. She was in pain from the BMA. Her tummy was upset too. Today she feels SO much better. She even got out of bed a good part of the day and played Playstation with Hunter and Hayden.
Last night, Hunter sat down next to Alexandria on the couch and put his hand on her back. He said, "Sissy, I really wish that it was me that had the leukemia and that you were all better." She looked at him, started to cry and said "Hunter that is the nicest thing you have ever said to me." Then Hunter began to cry, and as you can imagine....Grant and chimed in. Then Grant went to go get the camcorder to capture any further priceless moments. I don't need to tell you the day was
EMOTIONALLY DRAINING!!!!!!!!!!!
We go back to the clinic on Monday for a shot of L-asp. chemo and we will get counts. I must tell you that I am very nervous about looking at the counts. It is so upsetting just to think about it. I will be praying extra hard that we see a reduction in blasts.
My sister Michelle flew back to St.Louis today from New Jersey with her two boys. PTL!!!!! It is such a comfort to have my sister here...another person to lean on when the going gets rough. She will be staying for awhile.
Again, thank you all for coming to the site and signing in to let us know you were here. It is very comforting to us to know how many people care.
God Bless-
Alison
Thursday, January 09, 2003 at 07:26 PM (CST)
Well, I must say that although this day was beyond stressful and upsetting, it sure is nice to come home to answering machine messages, e-mails and journal entries that you all have sent offering your support. Unfortunately the blasts in the blood are up to 33% from 25% yesterday. Most disturbing of all is the 88% leukemia that the bone marrow is loaded with. This was supposed to be Day + 100, a bone marrow aspiration that showed no leukemia and we were to celebrate. But this is and always will be in God's hands and it was just not His will. As hard as it is to say or write, I think it is God's will that she go home. I am not saying that we are giving up....that is not what I am about. I do believe in miracles. I am just saying that it IS a VERY strong possibility that God really needs a beautiful Angel named Alexandria to strum a guitar and sing. She has been playing her guitar lately and she comes up with lyrics that could only be straight from our Heavenly Father. She asked me on the way home from the hospital yesterday if I thought when she went to heaven if God would let her have pink tips on her white wings?" I said, "I think God will let you have whatever color tips you want." She said "I bet the boy angels get blue or green tips." She is SO precious and my heart aches. On the way to the hospital today, I was looking at all the absolutely beautiful clouds. Grant said "it looks like God just took a paint brush with fluffy brush strokes across the sky." Alexandria thought it was beautiful too. I kept thinking how perfect an angel she will be. But she would ask "God, can we make the clouds a little more colorful, white is SO boring." That is what she kept telling me about the white lights on our Christmas tree this year..."can't we get colored lights, the white is SO boring." They decided to obviously skip the Clofarex because although it did clear the peripheral blasts, it did nothing for her bone marrow and the leukemia just came right back. So, we are trying what has gotten her into remission in thepast...prednisone, vincristine and L-asparaginase. The last two times we have done this she got a chemo called daunoraubicin with it. This can cause MAJOR long-term heart problems...like heart failure. So, she has received her maximum lifetime dosage. We will see what happens. None of the doctors seem optimistic, it is just way too aggressive this time and very resistant to all chemos. Grant and I are soaking her up and taking in her every word, breath and movement. We love her SO much and I wish that was enough to cure her. I also know God loves her and she is mine but only borrowed from Him. Please pray for Alexandria and our entire family at this most difficult time. I am on my knees and praying without ceasing.
God Bless You All-
Alison
Wednesday, January 08, 2003 at 08:20 PM (CST)
I do not have much time, not do I have the strength for a long journal entry but I wanted to get the word out so that we can get as many prayers for Alexandria as possible. I took Alexandria to the clinic this morning, I was expecting that she would get red blood for her headaches and we would be on our way. Unfortunately, the blasts are back in her blood 25% today......who knows what they'll be tomorrow. I must tell you that things just do not look good at all. Apparently, although she did see a significant reduction (90,000 to zero) in her WBC from the Clofarex.....one or some cells lived and now we know that the Clofarex is not our solution. I do not think the docs have a solution. We may try one other experimental drug...in trial it got zero out of 3 kids back into remission...not good stats. The docs have somewhat left it up to Grant and I if we want to possibly try the four drug re-induction that got her into remission the first 2 times. Each time you relapse, the cancer usually becomes resistant to these drugs, so this is not such a great option either. Of course, Grant and I are willing to try anything and everything. I sat today next to her, while she was laying on the bed at the clinic stroking her short, incredibly soft hair as she was transfused with two units of blood. I prayed so hard for her as I watched the most beautiful sunset out the window. I begged God for wisdom and strength. I feel like I have none right now. Just a hole in the pit of my stomach and heart.
Her hemoglobin was 7.6,
WBC .2 (back down from .6)
platelets 14
ANC zero
She will have a bone marrow aspiration/biopsy/spinal tap with chemo in her spine tomorrow at 2:00 p.m. I think we already know what the results will be. This is such another devastating blow......words escape me now. I just want to be close to my Alexandria and the other kids. Please pray that God heals her on this earth, and it is not time for her to go yet.
Thanks to the Whalen family for dinner brought to our home from Sunset Hills Country Club tonight...I cannot tell you what it means to us.
Before I go I did want to share something my aunt just passed along to me.
May there be peace within you.
May you trust your highest power that you are exactly where you are meant to be.
May you not forget the infinite possibilities that are born of faith.
May you use those gifts that you have received and pass on the love that has been given to you.
May you be content knowing that you are a child of God
Let His presence settle into your bones, and allow your soul to sing, dance, praise and love...
It is there for each and every one of you.
God Bless Each and Every One Of You-
Alison
Tuesday, January 07, 2003 at 09:11 PM (CST)
Hello Everyone-
Well, it has been a long couple of days. Alexandria has had good days and bad. We probably overdo it on the days that she feels good and then she is wiped out the next day. We went to the clinic yesterday for platelets....she certainly needed them.
Counts 1/6/02
WBC .6
HgB 8.6
platelets 5
bands 2
seg neutrophils 83
lymphs 8
monos 1
eos 1
Atypical lymphs 5 (the docs said not to read too much into this, but, well, how can we not? He said they were not blasts, or they would have called them that.
liver enzymes
alkaline phos. 118 low (normal 130-550)
ALT 321 high (normal 10-35)
AST 62 (normal 10-60)
Her liver enzymes were high due to the leukemia, then went down to normal as soon as she started the Clofarex, then the Clofarex elevates the liver enzymes as the leukemia cells die and the liver processes it, and now the liver enzymes are much better.
She had a headache today that has gotten worse as the day went on so I will take her to clinic tomorrow for a red blood cell transfusion. Headaches are usually a sign that your hemoglobin (red blood cells) are low. The red blood cells are the ones that carry oxygen.
Grant and I have had a couple of long nights without sleep. For various reasons, all the children were up most of last night. At one point when I was running from one room with a puke bucket and consoling another who was coughing so hard she could not sleep, someone else had an accident and another wasn't feeling good and wanted some momma lovin, my first thought was....boy, this REALLY stinks and I am REALLY tired and why in the world does everyone want the momma and not the daddy????? Then I quickly thought to myself.....actually I am the luckiest person ever. I have four beautiful children who love me and need me and want me to console them and make them feel better. Some people have no children to love and hold. Some people have lost a beloved child due to cancer. The void the parents must feel I cannot even imagine. I cannot even go there because it hurts to bad to contemplate. I have gotten several e-mails from parents across the country telling me that they have lost their child recently due to cancer. My heart aches for these parents who will not see their child grow up, and the siblings whose lives will be changed forever due to the loss. I have gone to their websites and have read every single journal entry. I have looked into the eyes of the children on the photo album....each and every one. I must tell you that it is emotionally draining but I feel compelled to do it anyways. I have a bond with these parents.....I membership in a club that I never wanted to be a part of. The membership dues are very high....the price to pay is your child battling an awful disease called cancer...and sometimes it is the ultimate price to pay......losing your child. I share these things not to make you sad but to make you thankful for what you do have....to make people realize the impact this has on our lives. I will say that I am a changed and better person for the experience of the last two years, but that will never take away the pain of watching my child suffer time and time again.
LEUKEMIA IS THE NUMBER ONE KILLER/DISEASE OF CHILDREN UNDER THE AGE OF 15. Every single day 46 families are given the devastating and life-changing news that their child has cancer. Many of these children will suffer through years of chemo and not survive in the end. It is so hard to be in this world of childhood cancer. On the one hand it makes you appreciate every single second of the day. On the other hand, it is down right sad and depressing. You try so hard to have faith and hope and in the end, only God knows the plan for each of our children. How is it that while I was growing up, I knew of only one person (my sisters friends, brother) that had cancer. In my sister Stephanie's town in Mississippi, there have been two children diagnosed with cancer in a year. Three kids at Alexandria's former school, one that lives close by to the area, and more than a half a dozen kids at the high-school down the street have been diagnosed with some form of cancer. My sister has a friend in New Jersey whose daughter has leukemia. WHAT IS GOING ON HERE???????????? Why is there such and incredible rise in childhood cancers/leukemia. I just do not understand it. The only conclusion that we as parents have collectively come up with is something is going on in the environment. What else could it be???? I have researched the topic thoroughly and I know there are many theories, most of which are speculation and have not been proven. However, it does make one sit back and wonder.........
On Thursday, Alexandria will get an EKG to make sure her heart is doing okay with the Clofarex and all the others chemo and the BMT. We will then have a visit to the clinic. So, that will make three times to Childen's this week...oh well. I am glad she is still alive and there is reason to make the trips!! I will post her counts tomorrow.
Please continue to pray for Alexandria. Every day holds either promise or disappointment and we never know which to expect these days.
Thank you so much to Tara, Nancy and Tammy for the dinners. I cannot tell you how much this has helped us. We are constantly being the nurse... preparing, and delivering meds to Alexandria. Sometimes to even get a meal on the table is a challenge.
Thanks guys....we really appreciate it!!!
God Bless You All-
Alison
Saturday, January 04, 2003 at 03:49 PM (CST)
Grant took Alexandria to the clinic on Thursday morning. We were supposed to be there early in the morning but with 4-5 inches of snow, we thought it would be best to let others get out on the roads first. We knew she would probably need platelets and she did.
Counts:
WBC less than 0.1
Hgb 11.2
Platelets 14,000
lymphs 73
monos 14
Eos 13
ANC ZERO
Well, the doctors just told us on Monday when we left that they had talked to the docs at Barnes that have used this drug to see what their counts did. She said some of them did not go to zero. Well, then we knew for sure that she would, because that is how things go with us. So, what we know so far is that the Clofarex took her from 90,000 blasts in her circulating blood last Thursday, to zero blasts in her blood by last Saturday, and zero WBC by this Thursday. I do not think the docs expected it to work this good. Let's just say at this point they are being way beyond cautiously optimistic. Anytime you relapse this quickly following a BMT, it is just, well, very very bad news. We are still looking at "salvage therapies" at other institutions as back up plans. We need to see what happens when she begins to have count recovery. She is getting i.v. Vanc every day, twice a day, to hopefully ward off any infections while her counts are low and she is so susceptible. She has been very tired and we do not know if it is because she has just gotten some very powerful chemo, or that she must get benedryl before each dose of Vanc so she does not have a reaction, or a combination of the two. Usually, she recovers so quickly from any ill-effects that the chemo brings. She has never been this sick (tummy sick) for so long. I know that the Vanc also makes your stomach very upset. I am sure also that her precious little body is also just getting tired. It has been a long haul for her. She is getting her strength and sense of humor back day by day. PTL!!!!
Hunter and I were sitting in his room the other night and I was snuggling up with him preparing to read to them like I do almost every night. Hayden was in the bathroom so I took this opportunity to ask him the tough question. I said, "Hunter, what would you do if mommy told you that the doctors, as some point and time, may want you to give Alexandria more of your blood/bone marrow to help her out some more." He said, with the most serious look on his face, "mommy, I would freak clean out." Well, gotta love that honesty, huh?????? He quickly followed that statement with, but if the doctors thought that it would help Sissy, I would do it for sure." It must have got him thinking because he had several follow-up questions. Such as, can they get it the easy way?" I said what do you mean the "easy way?" He said, " you know where they just put me to sleep and take what they need to take." I replied, "actually Hunter, if we did this, they would need to hook you up to the machine that spins off your stem cells." He said, okay, I'll do it, if it helps Sissy, and that was that. If we get to that point I think I will be suggesting some strong I.V. cocktail to keep him happy....BUT NOT ATIVAN!!!!! I was very proud that he would even consider the possibility. He did, however, at the end of the conversation, make a brief mention of the fact that there were two other people in the house that matched Sissy too. I suppose he thought I had forgotten about Addison and Hayden being possibilities.
We have had a great week. We have just enjoyed being home, all together. My sisters left this week and that was hard. It is always hard to say goodbye, since they live so far away and we do not know when we will see eachother again. New Year's Eve was just a quiet evening with family watching movies and relaxing and folding 5 baskets of clothing. I was actually upstairs at midnight, waiting for Alexandria's i.v. to beep, and Grant came up to look for me. I was coming down the stairs to look for him at the same time. So, we met on the stairs, we hugged and cried so hard trying to comfort one another. So far, he has been strong when I was not, and I was able to be strong when he was not. It is funny how it has worked out that way. From the beginning of this ordeal, we have been a good support system for eachother. We know how deep the pain runs as only a parent could. It is just amazing to me that we have actually grown much closer through this experience. So many families do not. Another blessing I am so thankful for. We have never disagreed on her treatment, or what to do next. It shocks and surprises us too sometimes. I certainly do not mean to imply that the last two years have just been a walk in the park and not trying on both of us. When you are SO focused on one child, many things slip through the cracks. We have consciencesly made a point to spend good quality time with the other kids, especially after a hospital stay. It is a work in progress trying to lead a "normal" life. Many times, we would like to go places or do things but we just cannot because it would jeopardize Alexandria's health. Her health is the most important thing right now. Grant and I are trying to remain positive and hopeful. After all, if you do not have hope, what do you have???? However, we have both admitted to being realistic about this situation. We are painfully aware of how high the stakes are at this point and we realize that only by the grace of God, a miracle, that Alexandria will remain here with us on this earth. This is hard to say, to contemplate, to admit...but true. Last night when Grant was tucking Alexandria in bed, Grant said, "Alexandria you know that you are absolutely enveloped in love by your family, friends, and neighbors." Alexandria said without so much as a second thought, "I guess I am the chosen one daddy." Daddy agreed and asked, "what does it feel like to be a chosen one?" To which she replied, "sometimes it is a heavy burden." WOW! Grant came to tell me quickly what she said. She never ceases to amaze us. Oh, how we wish this burden could be taken away from her and she would lead a happy, healthy life. God's plan for her will be revealed to us in time, and in the meantime, I will cherish every single moment I have with her. I believe that God puts some angels right here on earth. Some people never get the opportunity to be touched by one, I have held one in my arms.
Please continue to pray for Alexandria and our family. The power of prayer is a wonderful thing. We feel it, and we know it has kept us going on days when we thought we could not.
God Bless-
Alison
Monday, December 30, 2002 at 09:00 PM (CST)
WE ARE HOME !!!!!! HOORAY!!!! HOORAY!!!!
From Friday early a.m. to Sunday, Alexandria was feeling so bad that she wanted the windows/shades closed, all the lights to be off and she did not even want the noise from the t.v. You know your child is VERY ill when they do not even have the strength or energy to watch television. Today she was able to watch some t.v. and by this evening was quite comfortable again. She did have her moments when she felt nauseated but for the most part she felt okay. She/we never get any sleep at the hospital between the beeps and the buzzers, nurses checking vitals, construction on the floor above us, and getting up to go to the bathroom a million times because she is getting so much fluids. It is just amazing how we feel so thankful for every single little thing when we return home. It is such a good feeling. My sisters had the house immaculate and made dinner too!!!! Thanks guys...we REALLY appreciate it.
As we were driving home today from the hospital I kept saying "thank you Lord, thank you Lord that Alexandria is still here with us. Thank you for this day. Even though I do not know what tomorrow holds, I have enjoyed her every breath, her every word, her EVERYTHING today!!!!! I just want to be near her all the time. I have put the twin beds in her room together because she loves me to rub her back and be close to her when she does not feel good. I sleep there often. She has a nighlight in her room also. I can see her precious face and I study it as she sleeps soundly at night. I lay quietly watching her, thanking God for her, and praying with all my might for her. The doctors think the chemo is working because her counts have dropped DRAMATICALLY over the course of only 5 days. Her WBC (white blood cell count) was down to 2,000 today from 90,000 on Thursday. There is no way to tell for sure (except another bone marrow aspiration) if it is also clearing the blasts in her bone marrow, but one could reasonably assume it is. Grant and I asked the docs to keep her on prophylactic Vancomycin since she gets so sick with infections and we cannot lose a single day on this round due to infection. Not to mention that the infections are usually life-threatening. Vancomycin is probably one of the most powerful antibiotics available. Children's Hospital tries to do anything to not have to put you on it so that you do not become resistant to it. It is the antibiotic they reserve for only the "BIG DOG" infections. They agreed, that with her history, until she recovers her counts that she should stay on it. We were on it in BMT and never got a fever........I pray this holds true again. We asked the doctors what the plan is for her, the next step? They said they did not have any plan....there is too much up in the air and they just do not know what the best thing to do until the situation presents itself. As much as we want a perfect little A, B, C, D, plan, this one is not gonna be like that. This is pretty much unmarked territory and they have never used this drug at Children's before. I guess we just need to see how things go before the strategy is fully developed. They are checking around the country for other protocols that she may be eligible for. Speaking of protocols, you know how she did not meet the study criteria for eligiblity for the Clofarex because of liver enzymes being elevated? So we had to wait a week, beg the FDA, yada yada? The doctors thought her liver enzymes were elevated due to GVHD, something we wanted a little of. Well guess what, since her first dose of the Clofarex, her liver enzymes have been NORMAL!!!!!!
That's right, it was not GVHD at all, how could it be with only 8% of Hunter's bone marrow left. IT WAS THE LEUKEMIA CAUSING THE ENZYMES TO BE ELEVATED!!!! You think someone would see the numbers and say, "this is either GVHD, or possibly a RELAPSE!! Sometimes Grant and I get SO frustrated. It seems like sometimes the attention to detail is lacking. We certainly realize that they have a ton of kids with horrible diseases, and they are spread thin. We just do not like the idea of important things falling through the cracks because of it.
As I stated in a previous entry, we have many hurdles to overcome. Therefore, guess what I will be doing for awhile here....you got it....neurotic mom will have a thermometer in each hand ready to take her temperature at 15 minute intervals, regardless of the Vanc on board. Old habits die hard, you know?!?! We will go back to the clinic Thursday. Today she got red blood and platelets. We are hoping they hold her until Thursday. Then we sit back and wait and wait and then we wait to see if she gets an infection and see who comes back on bone marrow avenue...good guys (Hunter's cells) or hooligans (bad cells.)
As we were leaving today, Lee Ann, one of the other BMT moms that was in with her baby the same time we were, came over from the clinic. She handed me a beautiful rosary that she had made for me. I just could not believe it. It is SO beautiful and so thoughtful of her. She is going through so much with her own family and the fact that she took the time to do this for me was just so nice. Thanks Lee Ann. Alexandria thought it was pretty too!! One of my sisters friends, Peggy, brought over a bunch of food from Sam's today too. AMAZING!!!! The acts of kindness being imparted to our family is so comforting at this time. Thanks SO much Peggy!!!
Sadly, we also learned today that Andrew, the little boy who was transplanted the same day as us, has relapsed too. They just found out today in the clinic. The sorrow that I felt for our situation was just magnified by ten when I learned of this horrible news. It certainly makes you sit back and wonder, huh? So many kids relapsing so quickly after BMT. I believe they will start him on the Clofarex tonight. Please pray that he responds to the chemo. He is such a precious little 3 year old boy. Well, enough depression for one day I suppose. Please keep the prayers coming, as we need them and appreciate them so much.
God Bless-
Alison
Sunday, December 29, 2002 at 05:05 PM (CST)
I apologize for not updating the website sooner. I know how many of you check it regularly for updates so that you can pray specifically to God. We left for the hospital at 3:30 a.m. on Thursday night/technically Friday morning and I ran out without the computer. Grant came up to the hospital early that morning and forgot it too.
Well, as you know from a previous journal entry, we did receive FDA "compassion permission" to use the Clofarex. We went to the clinic on Thursday afternoon to get it. Unfortunately, the drug almost immediately made her feel extremely ill. This drug is a derivative of the drug/chemo ARA-C. She has had this drug before. If you recall, it is the one that wipes out her counts so much for so long, that she has gotten the life-threatening bacterial infections and we have been in ICU. ARA-C also causes what is called ARA-C syndrome. She has gotten this before when given this drug. The symptoms are fever, chills, shaking, nausea and flu-like symptoms times 10. She began Thursday at clinic feeling bad, but it got progressively worse throughout the evening and at 3:30 a.m. she had a 104.8 temperature, so I rushed her to the hospital. She has gotten the chemo every day since then and will receive her last dose tomorrow afternoon. We are hoping that we can go home Monday night or early Tuesday morning. No bacteria has grown from the cultures. No viruses have grown from the nose swab. The doctors think that it is either a virus that just did not grow out from the cultures, the effects of the chemo or a combination of the two. On Friday and Saturday, her blood pressure was 80/40, 76/36.....VERY SCARY!!!!! Grant and I once again were on our knees praying for comfort, strength and healing from God our Father in Heaven. The doctors and nurses are being kind and compassionate. They all realize we need a miracle. I will say that we do have some good news in the fact that her White Blood Cell count has gone from 90,000 to 5,000 in 4 days. This is unbelievable.......miraculous!!!!!!!!!!
We will take it, for sure!!! Unfortunately, this is only half the battle. Since this chemo will cause her immune system to plummet, and will stay zero for so long, we must now focus on other fevers and infection. I am not so sure her body can handle too much more. Another infection like we have had previously, well, I will not even speculate on that one. If by the grace of God we escape any serious infections until count recovery, the next hurdle will be what comes back in her bone marrow???? There is only 8% of Hunter's bone marrow left. The rest is the leukemia /Alexandria's. This is very discouraging news. Her cancer won the battle against Hunter's precious gift of bone marrow. So, we have to hope and pray for another miracle that Hunter's small 8% can grow back to 100%. I cannot even look past all of this to the plan from there. I was told today that the adults that have taken this drug at Barnes Siteman Cancer Center, have mostly only gotten one dose. I asked what that meant...why were they only able to get one dose? The doctor said that either 1. it did not work on them and they went to another option or 2. they died from the infection they received due to long times of neutropenia (low counts, no immune system to fight off bacteria.) This was not necessarily the best news in the world. Grant and I feel strongly that we had to try this drug. It was/is our only option. Grant and I looked at it like it has a relatively low percent of getting rid of the leukemia, I believe 25% - 30, but if we do not give it to her.......her chances, well, zero. So, as parents you exhaust any and all options made available. We are trying hard to completely hand it over to God. We know that she is a child of God, and if it is his will to bring her home....then we must face that reality. I must say, that being her mom, here on earth for nine years, has been the highlight and pure joy of my life. She is such a good caring person. She has taught me the most important lessons in life, and I will remember them always. Of course, it is my sincerest and hopeful wish that it is God's will to heal her body here on earth and continue letting Grant and I watch over her, guiding and guarding her all the days of a long life. I know God's Will, will be done, unfortunately, that does not heal the searing pain that my heart is experiencing at this time. Grant and I are hanging in there as best we can. We have our ups and downs of course. We are, however, trying to make the most of this time with her and focusing on each day, not tomorrow. Typically, it is not allowed for anyone to touch the other bed in the room here at the hospital. Well, Friday night, she asked me to snuggle with her and so I took it upon myself to push those two beds together so that I could touch her and be close to her all the time. This is what we do at home when she is not feeling well. She has two twin beds in her room so I push the two together to make a king bed. I do have wonderful memories of the nights when we have done this (and there are MANY!) We like to sing songs and lullabys, and play flashlight tag on the ceiling in the dark way past bedtime. This is what having children is all about, enjoying their wonderful child-like fun and unconditional love.
Grant and I are praying without ceasing. A friend of mine, Cheryl gave me a book by Max Lucado entitled God's Inspirational Promise Book, when Alexandria was first diagnosed. She highlighted many pertinent passages from the Bible that were applicable to our situation. Messages of strength, comfort, worry, God's assurance. I have taken this book to the hospital countless times and read it cover to cover. These words written so eloquently have saved me many a time. Another true friend, Nancy Cole brought by snacks and much needed caffeinated beverages and "mommy prescriptions." Tammy, another dear friend and neighbor, came by Friday night and made us laugh when we only felt like crying. My sisters Stephanie and Michelle and Michelle's husband Micheal are at my home taking care of my other three precious children. I am sad that I have not been able to see Stephanie yet. I should have known we were headed for a hospital visit when she said she was coming in town. We are almost ALWAYS in-patient when she comes in town and also the holidays. :(
It is a bummer, but what can you do?!?!?!? So many of you have left such touching and caring messages on the website and e-mailed us personally. I just cannot ever appropriately and adequately express my sincerest appreciation for these words that comfort us in the darkest hours. We also want to thank Grant's mom and dad and sister who came to see Alexandria yesterday and brought lunch. It was so nice for Alexandria to get to see them.
Alexandria is very anxious to get home and play with her cousins, sleep in her own bed and play with her cats. Please continue to pray for healing for her and strength for Grant and I. This is a heavy burden to carry but it is made easier knowing that so many people are praying for us.
Please say a prayer for Kraig's family. We met his friends at the Hope and Healing service where they prayed for and laid healing hands on Alexandria. Kraig was 38 years old, the father of three, and lost his battle to cancer and went to be with God on December 26th.
Keep the prayers coming and know that God loves you and so do we-
Alison
Sunday, December 29, 2002 at 01:56 PM (CST)
Hello All,
Alexandria is back in the hospital. The day after Christmas, we took her to the Hem/Onc Clinic for her first dose of Clofarex. She got violently ill from this new chemo and, although we did get her home after the treatment, that night in her little bed, she just got sicker and sicker and her fever climbed higher and higher. We took her in at 3:30 AM; she was admitted immediately. Antibiotics were started.
Alison will write more from the hospital. Keep the prayers heading our way.
Grant
Thursday, December 26, 2002 at 06:28 PM (CST)
Houston, we have FDA clearance and drug approval !!!!!!!!
That's right, we not only got approval from the FDA today to get the Clofarex but they granted our doctors permission to use the supply of the drug that the hospital already had instead of waiting until they got a new batch from the drug company which is standard procedure when you are not "on study." They called us at 1:15 and gave us the news and we were down at Children's Hospital by 2:00 p.m. There was NO time to spare as Grant and I wanted that drug in Alexandria ASAP!!!!!!!!! Her WBC is now 85,000 !!!! Mind boggling how this viscious cancer can multiply SO rapidly. We have no idea if this drug will work, but it was just about killing Grant and I to be sitting by helpless unable to even start to try and kill those little bastard blasts. (Excuse my harshness but lets face it, now I am REALLY hacked off at the cancer that will not seem to leave my precious baby's body and now has overcome the bone marrow that Hunter so generously gave.) I do worry so much about what this will do to Hunter. We are going to seek help for him as quickly as possible for the negative reprucussions of the situation will be enormous for him. Experts tell us that many times the sibling donor feels responsible when things do not turn out as planned. No matter how much we have instilled in him the idea that he gave Sissy a gift of bone marrow, but what her body does from there, is beyond all of our control. We will continue telling him that he did the very best he could and everyone is grateful for his gift, but it is just not his fault. He is SO proud of the fact that he could help her and every night when we pray he says " Lord, thank you for letting me be the one to help Sissy." It is just so hard and I imagine the burden and load will only get heavier. The pain runs deep my friends. Deeper pain than I have ever felt in my life, and will probably ever feel again. I beg the Lord for strength many times each and every day. I am SO thankful for the friends and family that are here for us. I cannot even explain the feelings of gratitude and appreciation that Grant and I feel when we look outside our door Christmas day to see Dave Whalen "and crew" shoveling snow from our driveway and walk. Or to go to our mailbox and receive the many cards that families from the neighborhood have given us. It just means so much. At the clinic today I could feel the pain, yet undying hope of Debbie, Alexandria's nurse practioner, and Yvoone and Dr. Jones and Mandy our nurse and Cynthia the receptionist. They truly care about Alexandria and want SO bad for her to survive.
Abby, Alexandria's best friend, came to the clinic today with Alexandria. She was over playing today when we got the call from the clinic. It was good for Alexandria and a good distraction. She loves her Abby so much. Abby has been there for her every step of the way and I am so thankful for their friendship.
The chemo is very potent and made Alexandria feel HORRIBLE!!!!!!!!!!!!! She has felt very "icky" all afternoon and evening. We will go back to clinic tomorrow for another two hour infusion. Then, Saturday we will go in-patient to get chemo. We will spend the night and then get the chemo for two hours Sunday. We get to go home Sunday. We will get a dose in clinic on Monday and Tuesday and then guess what we do????? WE WAIT......AGAIN!!!!!!!!!!! To see not only if her White Blood Cell count decreases, but also to see what her body does then!?!?!?! Do the bad cells come back before the good?!?!?!
Must go, Alexandria needs me..........please continue to pray ............HARD!!!!!!!!!!!!!!!!!!!!!
We love you all and God Bless You All-
Alison
Tuesday, December 24, 2002 at 07:45 PM (CST)
I wish that I could say that today's visit to the hospital was a good one, one filled with a miraculous occurence.....but I cannot. Her white blood cell count has gone from 10,000 to 45,000 in a very short period of time. To say that this is bad news would be grossly underestimating the situation. We are still too high on liver enzymes and cannot be on the study for the Clofarex. We are trying to get from the FDA "compassion permission" to use the drug. Let me just say it is OVERWHELMINGLY FRUSTRATING to know that they have that drug sitting in that hospital and they cannot give it to us without the "blessings" of the FDA. I am SO SORRY FDA, it is not a special tricky narcotic that she is looking for a good buzz from .....IT IS CHEMO TO HELP FIGHT THE CANCER TAKING OVER MY DAUGHTERS BODY AND GROWING BY LEAPS AND BOUNDS EVERY SINGLE MOMENT YOU IDIOTS AT THE FDA!!!!!!!!!!!!!!!!!!! I mean, REALLY!!!!!!!!!!!! I can see if it was not chemo.....but come the hell on people, get real and give us the drug before it is too late. Grant and I sit here feeling helpless with this situation. One very special miracle happened over 2000 years ago. We must remain hopeful that since miracles do happen, and we know they do, why cannot one have her name written all over it. SHE DESERVES THAT!!!!!!!!! She was feeling great until her spinal tap and bone marrow aspiration today and has been in great pain most of the evening.
She must be on i.v. fluids 24/7 now because the build up of the leukemia cells is so damaging to the kidneys.
When you are saying your prayers tonight, please pray extra hard for Alexandria. Grant and I are very familiar with the power of all of you praying, as it has helped greatly in the past. Please also pray for those spending the first Christmas without their child. The pain must be SO much.
Oops, I think the oxycodone (pain killer) that Alexandria is taking just kicked in she just jumped out of her bed, picked up her guitar, is playing it wildly and made up a song entitled "Survivor." Then we are moving on to our nightly tradition of "Fireside Chats With Alexandria." These are magical moments to be cherished forever.
God Bless You All and The Haddock Family wishes you the VERY Merriest Christmas EVER!!!!
-Alison
Monday, December 23, 2002 at 10:15 AM (CST)
I want to take this opportunity to thank each and every person who has contacted us in the past few days. The support, compassion and love we feel radiating from you all is helpful at this trying and troubling time. I will say, that a life experience such as this has a profound effect on those around us and we hope that somehow it will help others to appreciate how short and sweet life is. Grant and I have realized over the last few years several things. There are family and friends that have stayed close by and connected to us. They have been there in the good times when we are celebrating life and victories. They have been there in the darkest hours on the darkest days offering hope, guidance and a helping hand. You have watched our other children, made a meal, and countless other wonderful things. Then there are those of you, for whatever reason, have chosen to remove yourself physically, mentally or emotionally from our situation. Although part of me is deeply saddened by the loss of such relationships, I must say the greatest loss is your own. Your loss will come in the form of missed opportunities to do what God would do and would want you to do. Your loss is not really knowing a child who has been such an inspiration to so many. Your loss can never be made up for. You will never again have the opportunity to re-do all the things that were never said, never done. My personal opinion is that it is self-absorbency and selfishness. Or maybe it is fear. Whatever you deem as your good excuse, know that it is unacceptable. I know you all must think this sounds extremely bitter, however, I have learned honesty is the best policy and it is best not to surpress or hide your true feelings. This is the way Grant and I both feel and have discussed it on many occasions. For future reference, because many of you do not realize, it is extremely important to stay in contact with a family that is going through such a troubling time. It may appear on the outside that the family is strong and coping well. However, ask yourself this question, what would you want someone to do for you if you were yourself going through this? Many times a family is in self-preservation and survival mode. Every single aspect of your life is encompassed in the diagnosis of a sick child. If you ever know of another family who goes through this.....BE THERE FOR THEM. You will just never know what a simple note or card or phone call could mean to that person. It will mean a great deal, I assure you. I hope those of you who have been there for us, know that we are indebted for all of your efforts. To those others, who do not call to check on, visit Alexandria, or are not there as a support system for us.......you know who you are, and it is my sincerest hope that you re-evaluate your lives and your priorities, it will behoove you greatly. I share this information with you not to be spiteful or negative but only to hopefully spare other families in the future from feeling the pain and abandonment of others when a crisis situation is present. If I can help one person, then I have accomplished a great thing.
With all that said, Alexandria is actually feeling well. It is most difficult to sit here not doing anything, no chemo etc, to stop the leukemia which multiplies times 2 every 12 hours. We feel helpless. We have a Bone Marrow Aspiration and spinal tap, tomorrow, Christmas Eve day at 11:00 a.m. Please pray extra hard at this time. These tests will serve a dual purpose to tell us if it is the same original leukemia she was diagnosed with or if it has changed/mutated into another form. It will also tell us the extent of the bone marrow involvement. However, based on our previous experience, if it is in her circulating blood, her bone marrow is packed......100%. My prayer is for a Christmas miracle. They are going to try to get "compassion permission" from the FDA to use an experimental drug, Clofarex, starting December 26th. She is outside the protocol perameters for the Clofarex study because your liver enzymes can only be elevated times 2 or 3 and hers are elevated by hundreds. This makes her ineligible for study and we have to get special permission from the FDA to use it. Please pray that we are at least able to get the drug released to try.
It was 10 years ago today that my father, Johnny Hunter, passed away. I am hoping he has some "pull" up in heaven and it is God's will that she get to stay here with us on earth. We have been camcording her every move. We have been having "Fireside Chats With Alexandria", each and every night, and camcording her. SHE IS AMAZING!!!!!! I wish that I could share her words of wisdom with you all. I asked her what she thought heaven would be like when she goes there "some day." She said, "oh, mommy it is going to be beautiful, and I will have the prettiest angel wings ." She said that her good friend Abby had told her that when you pass away and go to heaven, that whatever you are holding in your hand you get to take with you. She turned to me and said, "mommy I want to be holding your hand so that you can come with me." I could hardly speak. I said that unfortunately, that just cannot be. She said ,"well, Daddy then?" I said no, she would go by herself but there would be so many people including Jesus and God and her grandaddy Johnny to take care of her there. She said, well, okay, then make sure when I pass away that I have my unicorn stuffed animal, Moonbeam, in my hands because she can work miracles. I had to leave the room so she would not see the pain in my eyes, the tears streaming down my face. It is so hard......the pretending....the acting. We have not told her anything yet. She is so strong and feels so good right now....and we really need more information. I know that she will just be so scared. I want her to enjoy Christmas without fear. So, Grant and I will do our best to cry quietly in our closet, be as positive and uplifting as possible, and once again face the situation with nothing but pure HOPE!!!!
It is my sincerest hope that this is a blessed and hopeful Christmas for each and every one of you.
God Bless-
Alison
Thursday, December 19, 2002 at 06:40 PM (CST)
Day + 79
I really do not have the words to explain the events of today...no way to describe the pain searing through my heart to depths of my soul. Alexandria has relapsed, again. We found out today she has 14 % blasts in her blood which means her bone marrow is packed again. Please pray harder than you ever have for my baby, my precious daughter.......this is the only thing that will keep her here with us, your prayers and the grace of God. We need a miracle here folks...there is just no other way. I am not not going to give up on her....I know she would never give up on me.....I will hope, I will pray that it is our Lord's will that she live. I can't bear to live without her.
God Bless you all-
Alison
Saturday, December 14, 2002 at 09:34 AM (CST)
Day + 74
Counts Day + 72
WBC 6.0
Hgb 12.8
Platelets 186
ANC 4980
Liver enzymes are still elevated but are getting better.
Nothing is more frustrating to me than to update the journal for an hour and then lose the document!!!!!!!!!! So, I am going to type it in Microsoft Word from now on and then paste it over. I guess some things we must learn the hard way :( !!!!!!!!!!
WE ARE HOME AND WE ARE SO THANKFUL!!!!!!!!!!!!! It is amazing how much we take for granted. … Eating a meal together as a family, sleeping under one roof. We actually got to come home yesterday afternoon.
Alexandria was the last one of us to get the stomach flu and she had it the shortest period of time, go figure????????
I am not complaining, believe me.
I just found out that my sisters and their families will be in for the holidays. The kids and I are SO excited. That is the best Christmas present they could ever give us…togetherness.
I hope that everyone is taking a break from the hustle and bustle of the holiday season to remember the true reason for the season. IT IS JESUS’ BIRTHDAY!!!!!!!!!!!!!!!!!! HORRAY!!!!!!!!!!!!!!!!!!!!!!
I also want to add, that during the holidays, there is always a shortage of blood and platelets. I would like to encourage anyone who can, to please give the gift of life. Please donate, you never know when you or someone you love will need the gift returned to you. Also, if you are not already, please search your heart and consider adding your name to the Bone Marrow Donor list. It is an easy process and could save a life. We were blessed to have multiple sibling donors for Alexandria. So many people are not so lucky. This BMT ordeal was hard enough to go through knowing we had 3 donors living right here. I cannot even imagine adding the fear and frustration of not having a donor readily available. The waiting and wondering if your loved one will live long enough to find that life saving match would be so much to bear.
God Bless You All-
Alison
I
Thursday, December 12, 2002 at 07:44 AM (CST)
Everyone here at the Haddock home (besides Addison, believe it or not) either currently has or has had the horrible stomach flu...
YUCK!!!!!!!!!
Alexandria has a 102 degree temp and we are headed to the hospital. YUCK!!!!!!!!!!!!!!!!!!!!!!
we'll keep you posted....
I guess, although it sounds odd, please pray this is just the stomach flu and nothing else!
thanks and God Bless-
Alison
Thursday, December 05, 2002 at 10:22 PM (CST)
Day + 65
Counts
WBC 7.8
HgB 13.2
Platelets 288 !!!!!! GREAT NEWS!!!
Neutrophils 77%
lymphs 12.8
Monos 9.1
Eos .6
Basos .5
ANC 6006
liver enzymes are still elevated. They think this MAY be a little GVHD. We want a little bit of that, so it may not be bad. However, her total billirubin 0.7 (normal 0.1-1.3) and her Creatinine 0.7 (normal 0.2-1.2) remain normal.
Alkaline Phosphatase 125 (normal 130-550)
ALT/SGPT 424 (normal 10-35)
AST/SGOT 173 (normal 10-60)
Total LD 1092
Hello everyone-
Wow, I was looking at the last journal entry and it occurred to me that many of you must have been looking at all those numbers and thinking "TMI/too much information." I realized that most of you do not live in the world of CBC's and blood draws, but unfortunately, our lives revolve around them. I post them mainly for my future reference and for those family members and friends who actually can make any sense of all those numbers. I am VERY thankful to God once again for good counts today. PRAISE THE LORD, PRAISE THE LORD, PRAISE THE LORD!!!!!!!!!!!!
Grant and I spend much time Thursday a.m. pacing the floors, hearts racing until her blood work comes back. (Of course, this is all done without Alexandria's knowledge or awareness...we have gotten pretty good at acting.) We are always hoping and praying without ceasing that it will be okay. After learning that the results are positive, we spend much time, (almost every moment of every day) praising God, rejoicing, and thanking Him for getting her through this far. It is not that we do not have faith. It's that, it is far easier to SAY that you will "put it all in God's hands" than it is to actually DO...despite our best efforts. I have been able to do that with ease in the past, in other life situations, but I do find it hard not to obsessively worry about Alexandria. This is, of course, our baby and sometimes that is just hard to do. It is a work in progress I suppose. Well, we will certainly celebrate for today and the good news once again.
I saw this quote and thought I would share it:
Silent gratitude isn't much good to anyone.
-Gladys Browyn Stern
God Bless-
Alison
Wednesday, December 04, 2002 at 03:05 PM (CST)
Day + 64
Alexandria is still feeling good and we are all thankful to have her home. We have our weekly appointment tomorrow. I will post again then. Today we enjoyed the first snowfall of the season and it is absolutely beautiful !!! It has been snowing big snowflakes all day. Addison and I went out for about 2 hours and played. Hayden and his friend Chase only lasted 30 minutes. Alexandria enjoyed watching all the sledding and fun from the comfort of the warm and toasty house. She had no desire to subject herself to the bitter cold. (smart girl....we have been in one hour and I am still numb!!!)
Counts Day + 56
11-26-02
WBC 8.3 (normal 4.5-13.5)
HgB 12.3 (normal 11.5-15.5)
Platelets 237 (140-440)
Neutrophils 69.6
Monos 16.2 (3.0-13.0)
ANC 6142
Liver Enzymes are elevated the cause could be GVHD.
Alkaline Phosphatase 105 (normal 130-550)
ALT(SGPT) 278 (normal 10-35)
AST (SGOT) 128 (normal 10-60)
Total LD 1414 (normal 350-840)
Counts Day + 59
11-29-02
WBC 5.5
HgB 12.1
Platelets 187
monos 17.4
Neutrophils 68
ANC 3740
Liver Enzymes
Alkaline phos. 114
ALT (SGPT) 293
AST (SGOT) 101
Day + 60
11-30-02
WBC 4.7
HgB 11.3
Platelets 213
SEGs 84
Monos 2
Lymphs 13
Day + 61
12-1-02
WBC 4.7
HgB 11.2
Platelets 190
Neutrophils 78
Lymphs 12
Monos 8
Eos 2
ANC 3666
Day + 62
12-02-02
WBC 4.8
HgB 9.2
Platelets 155
Neutrophils 77
Lymphs 12
Monos 10
Eos 1
ANC 3696
As you can see, counts bump up and down and all over the board but as long as they stay in the normal range, they say we have no cause for concern.
To be continued.......
Tuesday, December 03, 2002 at 05:24 PM (CST)
DAY + 63
ALEXANDRIA IS HOME AND DOING GREAT !!!!!!!!!!
PRAISE THE LORD!!!!!!!!!!!!!!!!!
I will post more when I get a moment.
love-Alison
Sunday, December 01, 2002 at 07:27 PM (CST)
Day + 61
I am SO sorry for the delay in the update. We decided at the last minute to take the family on a quick trip for the holiday to Jamaica for some R and R, sun and surf. We just got off the plane and got home. YEAH RIGHT!!!!!! And then I woke up from that awesome dream. We actually are back in the hospital since Friday morning with a fever. Not sure what the culprit is. Nothing bacterial has grown out at 24 or 48 hours which is good news. Alexandria is on heavy duty antibiotics until we figure out what is going on (Vanc and ceftaz). Her counts remain good...blessings, blessings. She at least has a little something to fight things off, but with new bone marrow, not much. Grant and I just switched places so I have been unable to update everyone. Please pray that we get out of the hospital soon and that these fevers are nothing serious. The possibilities run the entire gamut as I am sure you all are well aware. A simple virus, GVHD (graft vs. host which we want a little of), a bacterial infection, fungal infection or relapse. We are praying that it is just a little virus and will pass as quickly as it came on. She feels good....not absolutely miserable like she does normally when she goes in with fever. Her fever has only gotten to 100.4 degrees but that is high for her. She usually runs low at 97 to 98. However, when we have been admitted for fevers in the past they have been 104, 105, and 106 degrees. I am hoping that the docs are just being overly cautious in keeping her there at the hospital. I personally think that sometimes it is more dangerous to be there. So many kids are SO sick........coughing and spewing. It gives me the hebee jebee's walking through the hallways and thinking of all those icky germs floating around. YUCK!!!!!!!!!!! I feel like taking a shower when I get back to the room. Who knows what she could get at the hospital during cold and flu season. I do not know how nurses/docs do it. I guess you are not "germ freaks" until you have a child that is sick and have to be so incredibly careful about exposing them or another family member. We have not been to Chuckee Cheese in over two years (blessings, blessings...that place is just massive amounts of germs looking for a child to land on and infect. Okay, so I am NAROTIC about germs, can't help it.
Well, despite the latest setback with a hospital visit, we did enjoy a WONDERFUL Thanksgiving, all here together. We watched the DVD's Spirit and Ice Age (we all gave them both a two thumbs up!!!) It was so nice and relaxing, just the six of us. (Other than that minor interruption of smoke billowing throughout our house when the aluminum pan that held the turkey sprung a leak and dripped all over the bottom of the oven and almost started a fire). WHOOPS!!!! I must add that Grant was in charge of the turkey...not me!! As my kids would say "it was not MY fault." Grant has accepted full responsibility for the boo-boo, and he even cleaned the oven afterwards....big bonus, HaHa.
I hope everyone enjoyed the holiday. The Haddock family has SO much to be thankful for, words could never adequately express. As a Thanksgiving Day custom, we all went around the table saying what we were thankful for this year. You should have heard what the kids said. Along with the expected kid stuff (Playstation, etc.) Hunter said " I am thankful for a successful bone marrow transplant that is making Sissy get all better. WOW!!!! I would give my list but it would take way too long to reveal it here.
A big Thank YOU to the nurses at Children's Hospital. They are really taking good care of Alexandria. Grant and I certainly appreciate it. Hunter is of course concerned about Alexandria as he always is when she goes in-patient. He said in the car today, "Mommy, if Sissy needs more of my bone marrow to make her feel better, I will give it to her 100 more times." I told him that was so kind for him to say and that I am sure Sissy would appreciate that. I quickly turned around, put the sunglasses back on and secretly shed a few tears for those precious, sweet, innocent, and caring words. It is moments like these that I wish to capture and hold dearly in my heart for the rest of my life. It certainly makes me proud that he is so caring of his sister and wants to help her so badly. As hard as this ordeal is on my other children, it is my sincerest hope that they grow up to be very compassionate and caring individuals because of it.
I will learn more from Grant tomorrow morning after he talks to the doctors and gets counts. I will update you all then. Thanks for visiting and thanks for all your prayers....keep them coming our way.
Good Night and God Bless-
Alison
Saturday, November 23, 2002 at 07:44 AM (CST)
Day + 53
(Counts Day +51)
WBC 6.1 (4.5-13.5, normal)
HgB 12.0 (11.5-15.5 normal)
Hct 35.2 (35.0-45.0 normal)
Plat. 176 (140-440, normal)
Bands 1 (0-4, normal)
Seg Neutro 71 (33-70,normal)
Lymphocyte 10 (21-55, normal)
Monocyte 14 (3-13, normal)
Eos 2 (normal 2-12)
ANC 4272
Grant and I are absolutely thrilled to see her counts this great. Sometimes we feel like are lives go from Thursday to Thursday. Everything hinges on the blood work drawn on Thursday mornings. We have hope and faith that she will lead a healthy life, yet, we are only human and know all too well how quickly she can be taken away from us. I will say that, we are eternally grateful for each and every day that we have with her. She is truly a gift...such an inspiration to us all. We will continue to pray heavily for a long term remission. We are weaning her off the steroids and she is down to 3 meals a day vs. 30. She is determined to lose the "steroid weight" she has gained. She has been riding our exercise bike every day. She is eating a lot of fruits and vegetables now that she is not craving fettucini 24/7. I cannot believe we are half way to Day +100. How exciting. With the holidays coming the time will pass more quickly. She will have her Day + 100 bone marrow aspiration on January 6th. Day + 100 is actually January 9th, but that is when we could get anesthesia time in the Procedure Center. It seems like a long time to have to wait to see what is going on in her bone marrow. If she should relapse in the first 6 months, they can try to induce the "graft vs. leukemic effect" to try and fight the cancer cells. They do this by pulling her off the cyclosporin and steroids completely. However, in the past, by the time they see the hooligans in her blood work, her bone marrow was already packed full of leukemic cells. Grant and I feel that this approach may be an example of "too little too late." Alexandria has what we describe as "high velocity" cancer: it multiplies very rapidly. This may put the new bone marrow in the unfortunate position of having to work harder than it can to kill the leukemia. However, if they were to catch it early, the new marrow may have a fighting chance at winning the battle. Although we do not like to subject her to another procedure, we feel the benefits of knowing where things stand, far outweigh the risks. If we do have a situation of relapse to manage, we would rather manage it from a position of strength. It seems there is much "risk stratification" on the chemotherapeutic side of the equation. In other words, upon initial diagnosis, children are put into "risk for relapse categories." There is high, standard or low risk for relapse based on age, initial white blood cell count, and chromosonal abnormalities. All bone marrow transplant patients are considered high risk I suppose. Should some patients with high risk factors, and based on the history of how their cancer behaves, be managed differently after transplant? I am not sure. Would survival rates improve if risk stratification was also employed for BMT patients? Basically, we just want Alexandria to live and want to do everything possible to ensure that she is given the best fighting chance. With all of that said, we are so thankful to God and feel blessed to have her progessing so well, continued good counts, more energy, less appetite, and here with us. PTL!!!!
We have an appointment on Tuesday instead of Thursday with the holidays next week so I will post her counts then. We will be staying here for Thanksgiving and it will be just the 6 of us. We are looking forward to a restful and joyous Thanksgiving.
Love and Blessings to All-
Alison
Sunday, November 17, 2002 at 07:09 PM (CST)
Day + 47
Counts Day + 44
WBC 5.2
HgB 11.3
Platelets 170,000
Hct 33.4
Bands 4
Segs 82
Lymphs 8
Monos 3
ANC 4268
No atypical or immature lymphs!!!!
I cannot tell how it warms my heart to see Alexandria up and about. She is more active and doing so much more each and every day. It is so exciting to witness. To see her counts in the normal range is also an awesome thing. I am really proud of how hard she is trying. She is doing a great deal of walking and playing outside. Despite her physical appearance (still bloated from high-dose steroids, still no hair) you would not think she was recovering from a bone marrow transplant. She has had little sign of GVHD (graft vs. host disease). With a matched sibling there is usually less of this. However, we would still like to see some. She has the occasional rash and other mild symptoms, but nothing major. I just cannot believe how good she is doing. God is SO good and we are so thankful. Hunter reminds her frequently (usually during a sibling tiff that she owes him ...big time!!! I am not exactly sure how he expects to be repaid. We are looking forward to the holidays and what a wonderful holiday season it will be. Being together as a family is the best part of all. I will continue to keep you posted on her counts. We know that probably in the next month or so, her counts will drop. Hunter's bone marrow cells worked like crazy in the beginning to fill up her bone marrow......the shelves were empty so to speak. After 45-60 days the "shelves will be full in her bone marrow" and they will only need to fill the shelves with what has been taken off. Instead of being on overdrive, things will slow down. This is normal but still a scary time. She will not have another bone marrow aspiration until Day +100, which seems like an eternity away. We just have to keep trusting that God is in control of the situation. He has answered our prayers so many times before. Thank you all for continuing to care so much and check in on her website. Alexandria thinks it is absolutely amazing that the number of visitors is 23,000+.
WOW!!!!!! Keep the messages coming, we love hearing from you all.
love and God Bless-
Alison
Sunday, November 10, 2002 at 06:10 PM (CST)
Day + 40
(Counts Day + 37)
WBC 5.8 (normal 4.5-13.5)
HgB 10.5 (normal 11.5 - 15.5)
platelets 125 (normal 140-440)
They never gave me a complete differential so I do not have the ANC.
Hello Everyone-
We got the news from the BMT coordinator that the bone marrow aspiration done on Tuesday was evaluated:
1) microscopically
2) pathologically
3) chromosome additions and/or deletions on the 11th chromosome (she had 11q23)
4) chromosome gender (XX female), (XY male)
The final report was:
1) no evidence of disease
2) 100% donor chimerism (engraftment)
3) male gender confirmed on all chromosomes (Hunter's dna and this is great news!!!)
We realize that this game is a series of MANY hurdles. This was the first of many tests and hurdles that we must leap over, but it sure is a wonderful feeling to get good news. We must celebrate the victories, each and every one. We are painfully aware of how quickly things can turn bad. It has happened to us and numerous friends. Thank the Lord, for this day and every day. It is a gift straight from Him.
We continue to hear of people making donations to the Alexandria's Angels Foundation and I just cannot express or adequately put into words the feelings of gratitude that Grant and I have. It is an amazing thing to have people care so much and show such great compassion. What a wonderful example for all of our children that a community of people can come together and support one another in times of need. Unfortunately, no one knows when the time will come that they may need help. Hopefully that time will never come for most of you.
It is SO strange to see her counts in the normal range after 2 years of seeing her counts SO low every single week.
It is amazing. Keep the prayers coming....we know that it is helping us all greatly.
God Bless-
Alison
Tuesday, November 05, 2002 at 08:56 PM (CST)
Day + 35
Counts Day + 30 (Thursday, October 31st)
WBC 7.0
HgB 10.9
Platelets 119,000 (this is up significantly from 48,000 last week...and this is good news, her body would not be making platelets, this could only be Hunter's bone marrow!!
ANC 5810
Tuesday, November 5th, Day + 35
Hello Everyone-
Today Alexandria had her Day + 30 routine bone marrow aspiration. Every single time she gets her blood drawn now, Grant and I hold our breath and quickly say a prayer that they will not find any "hooligans." Although it would be unlikely to see the bad guys back this quickly, it is not entirely impossible. Yvonne called us tonight to let us know that they did NOT see any bad guys and her bone marrow was hypocellular (few cells in the bone marrow, wiped them out with chemo and radiation and takes a while to build back up). This is what they would expect at this time. No surprises so far.......this is good. Their report was from them "eye-balling" it though. They will have a more definitive answer hopefully by Friday. They will do what is called a FISH test on it and be able to tell exactly what percent is her cells and what percent is Hunter's cells. We would love to see 100% Hunter's. Since they are different genders, they will be able to look at the DNA/bone marrow and tell if it is XX, (Alexandria's), or XY (Hunter's). The whole thing is quite amazing. Boy, it's times like these you really wish you had paid just a little more attention in that Biology class. If I only would have known.........
Oh well, at least I now have a PhD. in leukemia (haha).
Despite the boys having pink eye and Addison having a cold last week, it was still awesome. Can you even believe that Alexandria did not get sick!!!! Amazing. She did spend the week locked in the basement with a can of Lysol though. You do not believe that do you?? I am only joking. However, she did spend the majority of the time in quarantine in Grant and my bedroom on the first floor. No one was allowed in but Grant and I. I have been scrubbing this house religiously. The week as you know began with so many caring and compassionate people supporting the Alexandria's Angels Golf Tournament. Grant and I are still in awe of the event and its wonderful turnout.
Then there was Halloween. Alexandria was dressed as a "Diva Star." She had purple leopard pants and a purple wig (thanks Nancy and Gary....yes, she still wears it on occasion). Everyone at the clinic thought Alexandria was adorable and the nurses took pic's of her. She thought it was cool to wear her costume to clinic. That night, we told her that she could go to a couple of houses to trick or treat. She walked outside, said "it is WAY to cold out here and I am not going anywhere!!!" Here she was SO excited to trick or treat and then she got over it so quickly when she felt the temperature. Grant took the boys and Addison out, which left Alexandria and I here. She said "let's go snuggle up in bed." Well, that is just exactly what we did. Call us party poopers if you must, but I threw 9 bags of candy into a big bowl, put it on the front porch so quick and jumped right in that bed with her!! It was great!!! Just me and Alexandria on Halloween curled up watching Cartoon Network eating candy in bed. Hunter and dad were trying to set a worlds record for the most candy collected so they were out late but Hayden and Addison came home rather quickly, happy with their stash.
It was obviously a crazy day today, but once again we all survived. The nurses at the Procedure Center are great and always make things a little easier. Thanks Annette and Roxy and all the nurses we have had there.
They did have to "go in" twice, (one on each side) with the bone marrow aspiration needle. She has been pretty sore this evening. I think they want to try and wean her off the steroids even more. The steroids are very hard on her bones and they are getting soft. This is why it was hard to get the sample. She could certainly use a break from the constant feeling of hunger. She is still craving fettucini and I am on a first name basis with every worker at Fazoli's. I drive up, say "two small fettucini's and they say "no problem Mrs. Haddock." We have tried to make her every single kind of fettucini at home and it just will not do.
We will get today's labs tomorrow and I will post them. Keep the prayers coming...we need each and every one. Grant and I could not ask for a better support system. So many of you are helping our family in various ways. We are so appreciative. I sincerely hope that I have not failed to thank someone. If I have, please accept my apology....it is those brain cells again. If anyone knows where I can find more, please let me know. Do not forget to sign in letting us know you were here even if it is only to say "hi." We love to see who has been to the website.
Take care and God Bless-
Alison
Tuesday, October 29, 2002 at 09:01 PM (CST)
Day + 28
There are no words to adequately describe the events of yesterday at the Alexandria's Angels Golf Tournament and Auction. It was awesome, surreal, inspiring, moving, and just plain unbelievable. Grant and I are just in awe of what transpired. The compassion and generousity was almost too much for us. At times I just felt myself speechless (this NEVER happens to me). Grant and I are so thankful that out of the 144 golfers that were registered to play, 152 of you got to play.......yes, that is right, EVERYONE showed up, and then some. They had over 50 people that they had to turn away, some of them giving a donation anyways. Can you even believe that???? I am just still amazed at the overwhelming support we received.
Although it was a little chilly (okay, really chilly for all you golfers!) there was NO RAIN!!!! PTL!!!!! The day began with me pulling into the Winghaven Country Club and seeing all the carts lined up. I just sat there in my van not being able to speak to the guy asking if I was here for the tournament. When I gained my composure I told them I was Alexandria's mom. They said come on in, and I immediately felt like I would cry again. Okay, the day has not officially started and I could have cried twice already. This was NOT a good sign. The Crossroads Choir, "The Singing Sensations" gave a wonderful program and they were precious. I was SO proud of the job they did and it really set the tone for the day. Thanks to Mr. Beauchamp, Mrs. Middeke, the choir director and all the helpers for letting the kids come and participate. Alexandria thought that it was especially cool that kids from Crossroads came. I then gave a little speech thanking everyone for coming out (did not even cry!!!), the rules were given and they were off to the races.
I spent much of the day with good friends in a golf cart on the course thanking everyone for all they had done. I may be guilty of spending a little extra time at the 12th hole, but they did have margarita's there. We just wanted to make sure that everyone was frozen solid and not just partially so we offered nice cold drinks. Hindsight......hot chocolate, so sorry!!!
Not one single detail was spared and the day ran very smoothly. (There was that boo-boo of putting the "Dirt Cheap" beer into the coolers for everyone instead of A.B. products. (A.B. was a proud sponsor, but the losers were to get a case of Dirt Cheap beer as a joke.)
Everyone was totally amazed at the wonderful event, especially knowing that the Golf Committee put it all together in a matter of 6 weeks. UNBELIEVABLE!!!!!!!!!!!!!
As Margaret Mead once said, "Never doubt that a small group of committed individuals can change the world. Indeed, it's the only thing that ever has." It is so true. To the Zanti, Whalen, Cole, Shea and Newsham families and all of the staff at Winghaven a BIG, HUGE thank you. I cannot explain how much we appreciate your hard work and dedication towards this event. Thanks also to Tracy Mazur and all the other volunteers. Thanks to each and every person who in some way showed your support for our family and this Foundation. I wish there was some way to repay you all. Our family feels richly blessed to know that so many people care.
The auction/raffle went great and I could not believe the amount of money people were willing to spend. I heard several people (that I don't even personally know) say to the committee, "how can I help, I want to help this cause", and taking out their pocketbooks. I just cannot tell you what that means to me. For all the bad in the world and today's society, there are many wonderful people and acts of kindness out there.
A HUGE "Thank You" to former Cardinal players, Rick Horton (I can personally call him Ricki now) and Todd Worrell. We so appreciate you both coming out to support this event and hope to see you again next year. Thank you SO much to the St. Louis Blues who were a large sponsor and to ALL of the MANY sponsors a big round of applause. A big "Thank You" to Grant's mom for watching the other kids for us so that we could enjoy the day.
I also know that many of you want to know exactly how much money was raised for the Alexandria's Angels Foundation and for kids with cancer......are you ready ??????????
$ 40,000 !!!!!!!!!!!!!!!!!!
(and checks are still coming in)
WOW.......that is all I can say.
As I said yesterday, we are thankful to have so many "Alexandria's Angels" who make us laugh, are there when we cry, help us search for the rainbows, offer hope, and celebrate each day with us. Your compassion and support is immeasurable and Grant and I are so blessed by you all.
Well, I must get back to reality. Addison was up (and therefore I was too) coughing until 4:25 this a.m. After we both took a dose of Nyquil, we went to sleep. However, her body still felt the need to get up at 6:00 a.m., mine did not. I awoke to find Hayden had generously shared the "Pink Eye" that he came home from school with yesterday, with his older brother Hunter. Grant wasn't feeling good and I was EXAUSTED!!!!!!! I now have to keep Alexandria away from everyone, and life, as I know it continues folks.........
God Bless You All-
Alison
Sunday, October 27, 2002 at 10:40 AM (CST)
Day + 26
(Counts Day + 23)
WBC 4.7
HgB 9.5
Platelets 46,000 (up from 44,000 on Monday) good sign that these are Hunter's cells because there is no way she would be having count recovery on her own this quickly)
ANC 3666
I only have a few minutes so I will update quickly today. First let me say that I am just SO excited for the golf tournament tomorrow. I cannot believe it is already here. I also cannot even believe that we are completely sold out, overbooked the course, and now have a waiting list!!!! How awesome is that?????!!!!! There have been so many things donated for the raffle and the auction, they are having to find new and creative storage places at the country club (there is even stuff in the pool house). Grant and I are overwhelmed with the generousity of so many of you. This should prove to be an absolutely wonderful event and we have so many of you to thank for that. SO, THANK YOU, THANK YOU!!!!!! I will never be able to adequately thank the golf committee for all of their hard work and dedication
to this event.
I found out the the 3rd graders at Crossroads Elementary (where she would have gone to school this year and where Hunter and Hayden go to school) made her an honorary member of their class!! They also each chipped in one dollar to sponsor a hole at the tournament! Okay, this one just flat out brought me to tears!!! I was at Tammy's house Friday night and saw the container that each of them had put in their quarters, nickels, dimes and dollar bills, and I really had to compose myself. What a wonderful, caring and compassionate thing for them to do! Thank you So much to Cindy and Neysa for organizing that!!! You guys are awesome!! Alexandria, of course, thought it was GREAT to be their "honorary classmember." She wanted to go back to school SO bad this year and was so dissappointed when she couldn't.
Our routine bone marrow aspiration to see if she is totally engrafted has now been scheduled for Tuesday, November, 5th. They could not get any O.R. time before that. :(
Oh well, just more time to wait......and we are VERY accustomed to doing that. This song from our Vacation Bible School several years ago has been going through my head constantly lately (which I think is a message straight from above) that says:
Trust in the Lord with all your heart
Lean, not on your own understanding
In all your ways acknowledge Him
and He will make your path straight.
Aren't you So sad I could not sing that in person for you?? HA HA!! I even remember the movements....my kids are getting a kick out of this!
Anyways, it is so true. We just have to trust that God will get us through this, no matter how difficult the waiting, and the not knowing, and the uncertainty of every given day is. Believe me, I have my moments when it is so hard, and I am so sad. That's when I have a team of supporters to rally around me, lend a shoulder to cry on, (thank you Nancy Cole for doing just that last week) and help me to pick myself up, brush myself off and start all over again. Each and every one of you who has helped us in ANY way has done this. Even the smallest act goes such a long way for Grant and I and means so much.
I will write soon and let everyone who was not able to attend the event tomorrow know how it went.
God Bless-
Alison
Tuesday, October 22, 2002 at 08:59 PM (CDT)
Day + 21
(Counts Day + 20)
WBC 7.4
HgB 10.3
Platelets 44 (up from Thursday, so NO transfusion)
ANC 5624
They did find an "immature cell" (could be blast/leukemia) in her blood work yesterday. This could be nothing or everything and we won't know until her 30 day bone marrow aspiration which is next Friday, November 1st. It could honestly be nothing to worry about, just a funky thing that showed up because of the BMT and her body being outta wack with Hunter and her cells. So again, we will wait on pins and needles, down on our knees praying to God this was not a blast. The BMT coordinator, Yvonne, was mostly reassuring and said not to worry. Dr. H. was scientific and dispassionate about his response, saying "until the bone marrow aspiration, they just will not know what is going on." Thanks for the hope, huh????!!!???! Oh, well, what can we do?? We have been down this road SO many times you would think we would be accustomed to the bumps and curves. Somehow, with all of your prayers and God we'll get through it again.
I have also failed to mention, and apologize greatly for not including information on Andrew. I know that many of you know of the family through church and living in the same area. He actually went home the same day Alexandria did. So technically they tied. His counts were even better/higher than hers, so I would have to say that if we were going on complete accuracy, Andrew was the winner. He was such a trooper. Can you imagine a 2 and a half year old in a 10x10 room for almost 3 weeks.........Poor mom!!!
They all did great though. Blessings, blessings!!!
Guess what GREAT news I received today? Tammy and Tara called to inform me that the golf tourney is almost COMPLETELY sold out. They are going to start a waiting list. If anyone is still interested, please call Tara Zanti at 636-561-0469 ASAP to see if they can still put you in or add you to the waiting list. I cannot believe that SO many people care enough to take off work and other activities to come out and support Alexandria's Angels Foundation. You have no idea how awesome that makes Grant and I feel. THANKS TO EVERYONE!! All the kids with cancer that will benefit from this event appreciate it greatly too!
I have still been feeling a little yucky so I have been quaranteened, not able to go near Alexandria. I know what your thinking moms. Wow, solitary confinement for Alison, no kids, sounds awesome! I admit for a short period of time it would be welcomed. However, under the circumstances I cannot afford to be "down for the count." I think the masks I have been wearing around the house to protect Alexandria have cut off the circulation to my brain.....must sleep.
Goodnight and God Bless-
Alison
Sunday, October 20, 2002 at 12:44 PM (CDT)
Day + 19
(Counts on Day + 14)
WBC 8.6
HgB 9.6
Platelets 39,000 (will need a transfusion tomorrow probably)
ANC 6622
The white blood cell count and ANC are elevated because she has been receiving GCSF (basically a cell booster) since Day + 7. This is the protocol and she has been on this medication many times before. Her last dose of the GCSF was on Thursday night so typically counts drop in half the first day after stopping it. We will be back at the clinic tomorrow, Monday, so it will be interesting to see what her counts are then.
I know, I know. You all are curious to know how Alexandria is doing and I haven't updated since last Tuesday. I am SO sorry and apologize for the delay. I am sure that you all logically assume that when I do not update, things are not going good. Actually, we are just very busy administering I.V. medications four hours each day and many, many pills. She must take a bath each day (harder to do with a broviac that must be protected) and sheets changed too. Everything must be EXTREMELY clean. Her feet do not even touch the floor. She has slippers or socks on. Then there is cooking the MANY meals a day for little Ms. Steroids. She goes back to the clinic once or twice a week for awhile for check ups that last pretty much the entire day. Trust me I am not complaining, I would do anything for her. It has just been busy around here and I wanted to shed some light on the situation. Last night I started to feel a cold coming on and so now I am trying to keep my distance from Alexandria.....okay, this is the toughest thing to do yet. I am afraid that someone in our family will give her something and she just does not need any extra health issues. I am sure with cold/flu season approaching, it is inevitable. All the other kids are in school (Addison goes to preschool) so sickness cannot be totally eliminated but we do our best to wash hands and keep the germs away. The school calls me if there are kids sick in their classes. Alexandria's immune system was completely eliminated by the transplant. All of her immunizations will be repeated one year post transplant. So, in the mean time, she is not covered for any of the big stuff, chicken pox, measles, mumps, rubella, small pox etc. These can be very dangerous if she gets them.
Alexandria is doing really good despite feeling wiped out. It is SO nice for her to be home. She so enjoys playing with her brothers and feeling a little more normal than in the hospital. She is SO glad to be home with her siblings and her cats. They ALL missed her terribly.
I can't believe the golf tourney is one week away! Everyone is doing so much for its success and I am SO amazed and thankful at the support and generosity of so many. The chairpersons wanted me to tell everyone that there is still room for more golfers. They also wanted me to encourage any of you who are not golfers or cannot make it to the golf tournament to please come to the Silent Auction and Cocktail Reception following. It would be great to see you there. They have gotten some AWESOME donations of things to auction off. So sad that I cannot bid on that trip to Destin or the Poconos.... those tasty gift packages to "The Face and The Body", a set of golf clubs, very nice jewelry, or restaurant gift certificates.
(I am, however, very open, very accepting, and not above anyone bidding on these prizes and handing them right over to me.....HA HA!!!!)
God Bless-
Alison
Tuesday, October 15, 2002 at 08:37 PM (CDT)
DAY + 14
Alex counts:
WBC 3.5
HgB 10.2
Platelets 20 (received a transfusion before we left)
ANC 2695 !!!!!!!!!!!!!!!!!!!!!!!!
WE ARE HOME !!!!!!!!!!!!!!!!!!!!!!
PRAISE THE LORD!!!!!!!!!!!!!!!!!!!
WOW!!!!! Can you even believe it? I certainly can't. Two weeks ago today, Hunter gave Alexandria a very special gift of bone marrow. Today, October 15, we are at home, a family of 6, under one roof. PRAISE THE LORD!!!!!!!
This morning we got up and immediately began to pack up. (this was a bigger task than I originally anticipated.) I very quickly realized that we would need a good sized
U-Haul to get all of our stuff out of there.
Alexandria and I were SO excited. Day + 15, I believe, is the earliest anyone has gotten outta there from an allogenic (sibling matched donor) and we are Day + 14. Leave it to Alexandria to break the record. Because she started with her counts so low (zero) everyone, doctors, nurses and Grant and I believed that it would take longer for her counts to come up and for her to begin to engraft. Well, she is very good at proving us wrong...thankfully. As they were bringing in her wheelchair (which we appropriately call her "chariot") she broke out into a song. She was singing the song (which many of you with young children will know because it is advertised 24/7 on Nickelodean on the Kids Bop2 CD, "I'm a survivor, I'm not goin' to give up." Well, Grant and I just about lost it. What a priceless moment. She said, "what guys, that is just the way I feel." She is so awesome.
So, our first stop, I'm not proud to admit, was Taco Bell. She had a serious hankering for some TB and dad and I aim to please, ya know? Before we left the hospital, they were trying to teach Grant how to take Blood pressure so that he could take Alexandria's. The Cyclosporin that she is on causes her blood pressure to be somewhat elevated at times. Even though she is on blood pressure medicine, she still sometimes will have some break through high bp. Well, lets just say that Grant SHOULD NOT quit his day job and be a nurse. He was practicing on me, and pumping me up to about 180/200, when I thought that I was going to suffer a heart attack or mild stroke. Needless to say, our next stop after Taco Bell, was a b-line for Walmart pharmacy for a blood pressure monitor that was FULLY AUTOMATIC. I have the utmost confidence in Grant's abilities, however, after he had failed his bp class, we were going straight to the professional accuracy automatic. I'm not taking any chances. Well, while Grant was researching and comparison shopping each and every single one on the market, Alexandria and I enjoyed Taco Bell lunch and listened to the radio. Guess what song came on????? "I Hope You Dance." Can you even believe it??? We listened to that song the entire way down to the hospital to go in for BMT, and here over 2 and a half weeks later, we are driving home and that song comes on the RADIO!!! Of course, we both belted out the tune, but only one of us cried silent tears in the front seat. As you can imagine, this song has even greater meaning now. Alexandria kept saying "wow, this is a beautiful day." She had not been outside that room for so long and you could tell she was just soaking up all the greatness and beauty that was surrounding her. It was even more priceless to see the look on Addison's face when we picked her up at school. She had not seen Sissy since she went in-patient. She was beyond words excited to see her big sister. Because Sissy has basically been sick for as long as Addison can remember, I think she thinks that the "hosa pital," as she calls it, is our home away from home. If Grant and I leave the house, even to go to the store, Addison will quickly ask if we are going to the hosa pital with Sissy. Sad, but true.
Tara, Nancy, Tammy and Michelle went to "the Plaza" with all their kids, Hunter and Hayden to be on "Show Me St. Louis." They were there to promote the Golf Tourney, but did not get a great deal of air time. Thanks guys SO much for your efforts, they are greatly appreciated!!!!! It was awesome to see you all on t.v. with big signs and pictures of Alexandria. I hear that Hunter was jumping up and down, trying to get attention from the camera man saying " I was the donor, I was the donor." I cannot even imagine where my child would get such behavior from, can you?????!!!!! (haha!!!) He is such a character and extremely proud of his bravery and his awesome cells. Sissy, Addison and I just watched the program from home. Alexandria could not believe her brothers were on t.v. and was so proud of their new celebrity status. Hayden was just waving and dancing around like he had ants in his pants, typical Hayden. I was just proud his hands were waving in the air instead of in places they should not be.....like the nose for instance. Well, sorry, that was T.M.I. (too much information) now wasn't it.
Everyone got home around 5:00 and we had a great evening. Hunter was singing some song about "I'm so thankful Sissy's home." It was so sweet. They eached hugged eachother goodnight. Then Hayden walked up to Sissy and said "Sissy, here's your stuffed animal cat." "I've been sleeping with it every night that you've been gone. Well, hold back the tears Alison!!!! I just thought that was the sweetest thing. He did not tell anyone about it, just secretly kept her kitty because it reminded him of her. There were just so many PRICELESS moments of the day and evening that I wanted to write them down so I never forget how special this day was to me. I hope and pray that it is the beginning of a long healthy life for Alexandria. I pray that our family will always remain thankful for each and every day that the Lord gives us together. It is my hope that through our journey, you will do the same. Then all of this will have a purpose... a meaning. Now, go hug your kids and tell them that you love them.....no one knows what tomorrow will bring.
We love you all-
Alison
Monday, October 14, 2002 at 08:18 PM (CDT)
Day + 13
WBC 1.8
HgB 9.4
Neutrophils 83
Platelets 21
ANC 1494
And that ANC is good enough for a ticket out of Hotel HemOnc!!! Alison is having trouble with the internet connection at the hospital and I am, (Grant) therefore, at the keyboard trying to put something down with both modesty (that's easy enough for me) and cunning (really Alison's forte). Her entries, at once maternal and conversational, powerful and simple, amaze me. Forgive me in advance for what is likely to be a dry toast update.
Her upward trending ANC marks the point at which engrafting is underway. This is an important milestone. There are so many more ahead of her, though. The spectre of both Acute and Chronic Graft Verses Host Disease, viral, bacterial and fungal infections, graft rejection and relapse never go away; they are merely forced aside for the moment, long enough to quietly celebrate. We now rejoice that the family will soon be under a single roof and pray for a durable remission.
Thank you so much to all those who helped our family get through another difficult aspect of her therapy.
Sincerely,
Grant
Sunday, October 13, 2002 at 08:26 PM (CDT)
Alexandria Counts Day +12
WBC 1.2
HgB 9.9
Neutrophils 62
Platelets 29
ANC 744 !!!!!!!!!!!!!! Yeah!!! Whoo hoo!!! Yipee!!!
YOU GO GIRL WITH YOUR ANC!!!!
WOW, was I excited to hear the news this morning that her ANC had gone UP AGAIN!!! They are talking about letting her come home on TUESDAY .....Day + 14 !!!!
YIKES!! As much as we would absolutely LOVE to have her home, there is some degree of comfort with knowing that she is being closely monitored at the hospital. It looks like Andrew will be going home that day too. We are so happy for the Olson family as well. Jackie and I said they would have to let us go home on the same day or it just would not be fair (haha). I told her as much as I like her and so glad that God put us in this situation at the same time to be a support system for eachother.....but if we got discharge papers....we were GONE!!!!!!!!!!!!! We got a good laugh thinking about how the nurses and doctors are probably just telling us that our kids have an ANC to get the psycho, overprotective moms outta there. I think baby Kristan is doing a little better. It has been a rough go for her and the family. Please keep this precious child in your prayers.
Needless to say, after hearing this news today I have been frantically cleaning the house and trying to sterilize anything that isn't moving. Everything will need to remain very clean for a long time. This will be extremely tough to do with four children but somehow I will manage.
Thanks for all your prayers and support throughout this ordeal. We could not have made it through without your love and caring. A HUGE thank you to my sister Michelle who has held down the fort for several weeks while we have been running back and forth to the hospital.
Alexandria will start going to the clinic every Tuesday (BMT day) for blood draws and a check up. She will have a bone marrow aspiration on day 30 to see what percent of cells are hers and what percent are Hunter's. The goal is to have her 100% engrafted and all of Hunter's cells by then. She will then have a bone marrow aspiration monthly to make sure she is not relapsing or that she is not losing donor cells. The entire thing is just amazing. We are praying hard that this was our answer to a permanent cure for this dreadful disease and that she will go on to help others facing the same situation.
God Bless-
Alison
Saturday, October 12, 2002 at 09:28 AM (CDT)
Oh yeah...whoo hooo, ALRIGHT!!!!!!!!!!!!!!!!!!!
Sorry, just did my little "I'm so excited, victory dance."
WE HAVE AN ANC.....WE HAVE COUNTS......PRAISE THE LORD!!!!!!!!!!
Alexandria Counts Day +10
WBC 0.2
HgB 10.2
platelets 10
ANC zero
Counts Day + 11
WBC 0.6
HgB 10.0
plt 46 (she received a transfusion yesterday)
Segs 20
Bands 30
Monos 30
ANC 300!!!!!!!!!!!!!!!!!!!!!THANK YOU LORD!!!!!!!
Now, with that said, please realize that she could easily drop back to zero tomorrow. This has happened a bizillion times on other occasions and is very normal (albeit very frustrating too) . However, it means that today, Hunter's cells are trying hard to come back. Well, I just called home to share the great news. Grant told Hunter that his cells were starting to work in Sissy's body. He immediately broke into a victory dance, and started struttin his stuff across the kitchen floor Grant said. He must be just a little proud, huh? I came back in the room to tell Alexandria, (she was still half asleep) and I got a big "thumbs up, out from under the covers!"
The little boy next door, Andrew, who is 2 and had his transplant the same day as us, is doing GREAT too. In fact, in rounds this a.m. the docs said we must be having a race to see who gets outta here quicker, because they are neck and neck tied with counts. I have become good friends with Andrew's mom Jackie. I cannot tell you how wonderful it is that God put us here at the same time. We immediately hit it off, and it helps to have someone here to talk to that can totally relate.
So, This is the day that the Lord hath made and I am rejoicing and SO glad it it.
I went to an "Alexandria's Angels Foundation meeting on Thursday. I cannot express enough how grateful I am to see Tammy, Tara, Nancy and Ann working so hard to make this golf tournament event a special one. From the bottom of my heart I thank you so much guys as I can see just how much work you are putting into it. Thanks to all of you who are helping or participating, it really means alot to our family and other families that will also benefit. The chairpersons have asked me, however, to get the word out that they need anyone planning on attending to please send in their registration forms so they can start to get a head count. It will determine how much food and beverage to get, how many Winghaven workers they will need, etc. If you are not a golfer, please come out to the auction and reception after the event. Grant and I would love to see you there!!!
Last night, Alexandria and I were looking at the website and she saw the new pics. She immediately grabbed her cheeks and said "Oh my gosh, are my cheeks really that big???? Bless her little heart. I said, you know what Alexandria, it is only from the steroids and other medicines that you are taking. I think she was just in shock. She has gained 45 lbs since diagnosis. I have always been thankful for that. So many kids can't eat and lose weight on chemo, but she has maintained an appetite throughout this ordeal. It always made me feel better that she could go awhile without eating if she got really sick and she would be fine. I assured her that as soon as she stopped taking the meds, she would go back to her original size. Mom, on the other hand, who has gained some serious "sympathy weight", will have a much more difficult time of it.
So, among some other criteria, we need 3 consecutive days of 500+ ANC to go home. So, we have a job to do, and we'll get working on that. In the mean time, we'll be singing and dancing that something good is brewing in Alexandria's body and this will hopefully be her permanent cure.
Alexandria just woke up and said "did you say earlier that I have an ANC?" I said "yes", and she squealed her cute little squeal, and said "AWESOME." I just made her day with that news. Well, she is fully awake now and we are off to the land of Playstation and Nintendo. Have a great day everyone!!!!
God Bless You All-
Alison
Thursday, October 10, 2002 at 11:53 PM (CDT)
DAY + 8 counts
WBC 0.2
HgB 10.8
PLT 33
ANC 0
DAY + 9 counts
WBC 0.2
HgB 10.7
PLT 17
ANC 0
I decided (or really Grant decided) that we needed to switch so that daddy could have time with Sissy and I could spend time with the other kids. It is SO hard to leave her but she is doing/feeling SO well. I have been SO busy enjoying the other kids, doing laundry, running errands, and helping out with golf tournament stuff that I have not even had a spare moment to update the website. I hope you all did not worry.
Speaking of the golf tournament.....PLEASE, PLEASE, if you are planning to attend, send in your registration forms SOON. With the tournament only two weeks away, they are trying to get a headcount so that Winghaven will be adequately prepared with staff, etc. If you are not a golfer, PLEASE plan to attend the silent/live auction that evening. Grant and I would love to see you all there and it sounds like it will be a lot of fun. I cannot believe some of the awesome prizes they have gotten for tournament and for the auctions. Also, look for several of us to be on the NBC/KSDK (channel 5) television show "Show Me St. Louis" next Tuesday at 3:00 p.m. Apparently, they were able to get a few minutes air time to talk about the golf tourney. (How excited will Alexandria be about that????) She already thinks it is beyond cool that she was in the newspaper and they talked about her on the radio last week. She is reaching celebrity status in her mind....and it is ADORABLE!!!!!
I will update again tomorrow/today.....whatever!
Love-Alison
Tuesday, October 08, 2002 at 09:35 PM (CDT)
Day + 7
One week post-BMT!!!!
Alexandria's Counts
WBC 0.2
HgB 12.0
Platelets 60 (she received a transfusion yesterday because they were only 7)
ANC still zero and will be for awhile longer
I will make this short and sweet...(I heard you say thank goodness, haha) Alexandria just turned off the light which is a big indication that her day is over and mine should be as well. Today was uneventful here at the Hotel Hemoc , or Hotel Hell, as some here in the BMT unit call it. It may get that name from the fact that 5 families have to share a bathroom for a month. Yep, that's right, all 10 of the parents share the same bathroom and shower. I feel like I am in 8th grade at Camp Sequoya again... minus the smores and Kumbayaa.
Alexandria had a day filled with arts/crafts, movie watching , Nintendo and Playstation. Now that is a great day in the eyes of a nine year old. She feels great still and although Grant and I are eternally grateful, we worry, "does this mean she is not engrafting or that the new bone marrow is not doing its job of killing the leukemia"? We realize it is all in God's hands, but we were told that the kids feel miserable right about now. Maybe it is still yet to come...in fact I probably just jinxed myself....so scratch all of that.
I better go to bed I think I am over tired and getting delirious.
Goodnight and God Bless-Alison
Monday, October 07, 2002 at 08:43 AM (CDT)
First of all, I must apologize for my last entry being added before completion....again. Secondly, I must apologize for not updating yesterday, however, I have good reasons that I will share with you now. The day began with a visit from Grant, Hunter and Hayden. I missed them all so much and I was so thankful they got to come down. Of course, since Alexandria is in isolation the boys did not get to see her. Grant stayed with Alexandria while she ate the Red Robin macaroni and cheese (her very very favorite) while I took the boys to the garden and for a walk. Alexandria soon fell asleep for her afternoon power nap and Grant joined us in the garden. It is absolutely beautiful out there. You just do not realize how much you take for granted until something is taken away from you. Just to sit in a porch swing with Grant and feel the warmth of the sun on my face....it was so wonderful. We sat quietly and watched as the boys played their games and enjoyed "just being boys." It was such a gorgeous day and a thanked the Lord many times for this time with my family. I wished Addison could have come down but she has a little cold and we do not want her to share it with anyone. One of the other BMT families was in the garden and the mom said she had not been outside in 3 weeks since they had gotten here. They have a little baby Kristan who had her transplant a week before us. Since she is just a baby, mom can hardly leave the room. I cannot even imagine. I am so thankful that even though I do not like to leave Alexandria's side, I know that she will be okay if I run downstairs to get food or go to the garden for a few minutes to pray and regroup. I really do not know what I would do if I could not leave the room. Again, just something to be thankful for and believe me I count my blessings daily. No matter how small or insignificant it may seem, be thankful and grateful to God for the tiniest of blessings in your life for you do not know what tomorrow brings. Grant and I took the boys for a little walk and then I walked them to the parking garage. I said goodbye which is always difficult. I long for the days when we are all together again as a family.
Later Sunday evening, Alexandria was still feeling good and playing Playstation so I was on the computer about to update the website when I see Grant through the glass wall in our room. He walked around the corner and my first thought was " what in the world is he doing back here?" He was followed by my sister Michelle. My thoughts quickly turned to "Öh my gosh, who is watching my children???????" They walked in the door and said "Surprise, guess where we are going???" Well, I am sure you can imagine the look on my face when Michelle said, I'll give you a hint, "baby, baby I'm taken by the notion" OH MY, I CANNOT BELIEVE IT WE ARE GOING TO THE AMY GRANT CONCERT!!!!!!!!!!!!!!!!!
Grant and had surprised me with tickets!!!!!!!
I absolutely love Amy Grant's music and have followed her career. I went with my church youth group when I was in 8th grade to see her in concert at the old Kiel Auditorium. She was touring with Micheal W. Smith. I remember the concert so vividly, things she said and did. Well, anyways, Grant stayed here with Alexandria and we were off. After a few setbacks, no car keys etc, a horrible wreck on the highway and backed up traffic for miles, we finally arrived at Belleville's "Öur Lady of the Snows" Ampitheatre. We parked the car and had to walk uphill through the woods in complete and total darkness. We got to the top of the hill, found our seats and enjoyed the opening act. Amy Grant followed and the concert was AWESOME!!!! She sang all of her old favorites and new songs as well. Her husband Vince Gill played guitar most of the concert and even did a couple of solos. It was a beautiful night with many stars in the sky. The statue of Mary and baby Jesus was lit up behind her when she was singing Hymns. Words can just not explain the closeness I felt to God on this evening. Amy sang Alexandria and my personal favorite "Ängels watching over me." I felt like all of Älexandria's heavenly angels were right there with us. It was SO amazing!!!! It was a little chilly but still a great night for an outdoor concert. (we had brought hospital blankets to keep us warm!) After leaving the concert, which got over at 11:30, (and walking down the dark, scary unlit path again) we reached the bottom of the hill and there was a place to light a candle and pray. And pray hard is what we did. I prayed to our merciful and gracious God that Alexandria would be cured and continue to do and feel so well. I thanked God for all the many blessings he has bestowed upon me. I thanked him for such a wonderful and memorable day and evening. I thanked Him for such a kind, loving, giving and special person that I am honored to call husband and friend, Grant Graham Haddock. I am blessed beyond my wildest expectations and dreams. Thank you SO much Grant for this wonderful surprise. And for the record, after being together for 15 years, he has NEVER been able to keep a surprise from me. He always gets too excited and ends up telling me. This time, however, he was VERY successful and I am so grateful for the evening.
Now, what could be the perfect ending to the perfect day?????? Well, when I got home at midnight, there was a very beautiful nine year old girl named Alexandria waiting excitedly to hear about everything that had transpired in my evening. I told her that I had something for her, to which she replied "ïs it edible?" Well, isn't that a kid on steroids for ya? Sorry to say, it was just an Amy Grant CD and t-shirt. So, over cookies and milk I shared and reminisced the events of the evening and again thanked the Lord for each and every gift He gives me.
Love to All-
Alison
Saturday, October 05, 2002 at 07:37 PM (CDT)
Counts:
WBC 0.2
HgB 11.6
Platelets 15
Today was a very uneventful day. We absolutely love boring, uneventful days. They are so much better than crazy , nerve-wracking days when things go wrong time and time again. Her counts seem to be going down which is good. They will go down before they come back up. So, we are just waiting....and waiting and waiting. I have really enjoyed spending good quality time with her since she is feeling so good. Alexandria was napping (for several hours) so I went to the garden on the 8th floor and just relaxed in a chair and read a book and magazine. It is absolutely beautiful out there
Friday, October 04, 2002 at 09:34 PM (CDT)
Well, here it is 9:30 p.m. Friday evening and although I have asked nicely countless times today for Alexandria's counts, they have yet to get them to me. This is extremely frustrating to me. I think that every morning when the nurse comes in she should have a print out of counts. This VERY RARELY happens. I am sure things have not changed too much in 24 hours, but I still like to know where things stand and if she is getting close to needing a blood or platelet transfusion.
Grant and I were both here today and my sister Michelle stayed at home with the other kids. I do not know what I would do without her help. Hunter went back to school today and is feeling great. I am sure his class was happy to see him and I know he was anxious to get back into the swing of things and see his friends.
Alexandria is feeling really good also. She is still eating very good, which I am surprised about. I am sure the steroids are making her hungry. She ate two double cheeseburgers for lunch AND fries. Wow, her dad said he wasn't sure that he could even eat that much. (Of course I beg to differ.)
Well I just now received counts for today :
WBC 0.3
HgB 11.9
Hct 35.3
platelets 25
segs 85
cells diffed 13 (only able to count 13 cells in her blood)
lymph 15
She will probably need platelets soon as she is dropping fairly quickly. I am so thankful for each and every good day that she has.
There was an article about Alexandria and the golf tournament in the O'Fallon Journal, St. Peters Journal, and St. Charles Journal today. I brought a copy here for Alexandria to see and she thought it was SO cool!!!
Well, I am going to try and get some rest. Thanks for checking in and I 'll post again tomorrow.
love -
Alison
Friday, October 04, 2002 at 12:09 AM (CDT)
Whoops, it is 12:09 a.m. I am 9 minutes late for updating on the right day. I fell asleep, imagine that.
DAY + 2
Counts
WBC .2
HgB 12.0
platelets 48
ANC- still zero
Alexandria had a good day today. She is still feeling good and able to do activities. She played a lot of nintendo 64 and just hung out. Grant, myself, and the docs think that by the end of the weekend she should start feeling bad. We are not being pessimistic, it is just that all BMT patients go through about a week period of time that they feel really really bad. Dr. Jones said most of the time they are on a Fentanyl or morphine drip because they just feel that crummy. They want them to be comfortable and rest so they usually snow them. That will be the toughest week, watching her feel so awful and feeling helpless. Hopefully after that week she will be on the up swing, and then her counts will start heading north.
Hunter is still doing so well. He is just a little tired and occasionally a little bit of back/hip pain. He will return to school tomorrow or Monday. I think he is really enjoying the attention he is receiving for doing such a wonderful thing for his sister. His class mates made him two beautiful pillow cases with their names and pictures they drew on them. They were adorable. I think Hunter really got a kick out of that.
I cannot believe how many hits to the website she has. AMAZING!!!! Thanks for checking in on us. Remember to appreciate each and every day with your children...you never know when it will be yours or their time to go. Every day that each member of our family has breath, I thank the Lord and consider the day a blessing. I have hope and faith that my precious daughter will be cured of this dreadful disease and go on to lead a full, healthy life and eventually help others encountering the same circumstances. Here is a bookmark that I look at frequently to remind me of this
HOPE
There is always
hope- because there is prayer
Sometimes when you think the answer is "no"-
it is not yet."
When you pray
you demonstrate that there is
always hope.
If you have
faith, you have hope.
When a storm
bends a tree to the ground
the roots get stronger
Blessings to all-
Alison
Wednesday, October 02, 2002 at 08:16 PM (CDT)
DAY + 1
Counts
white blood cell count (WBC) .2 (normal is 5-13)
hemoglobin 11.1 (she got a boost from Hunter's red cells)
platelets 47,000 Normal (140,000-440,000)
Hunter got to come home today and is feeling pretty good besides occasional back pain. Alexandria has been in good spirits all day. Her Nana went to see her today and took her a guitar. Ever since Alexandria saw and heard our pastor play one at the Hope and Healing service, she has begged for one. Apparently, one of our docs, Dr. Wilson, has been strumming the guitar since high school and broke out some tunes today for Alexandria.
Since Alexandria was feeling so well today and I know that she may not be feeling so well in the very near future, I decided to come home and spend some time with Hayden, Addison and Hunter. It is SO hard to leave her but I know Grant wants to spend time with her (he lets her get away with EVERYTHING!!!) and she needs to be with him. I also realize the kids needed me here too. If I could only divide myself into two it would be great. I caught up on some laundry and plan to get some serious sleep tonight with NO beeps and buzzers.... just several little bodies and great little snugglers in my bed. Well, speaking of sleep I am going to do that right now. I just called the hospital and said goodnight to Alexandria. She is still doing good.
PTL, Praise the Lord!!!
Keep the prayers coming!!!
I am sure you are amazed at the shortness of my entry today! I will try to update daily.
God Bless-
Alison
Tuesday, October 01, 2002 at 09:27 PM (CDT)
DAY ZERO.....This is where we start counting and ...WOW, what a day!!!!!
The day began by our pastor, Lew Kimmel, from Dardenne Presbyterian Church, coming to be with us and the kids. He came to Hunter's room and we all went to the garden that is here on the 8th floor. Hunter was feeling great and doing great. The landscaper let Hunter feed the fish in the pond and he could not have been more happy to help. We came back in and surgery was waiting to wisk us off. Hunter walked down and did absolutely wonderful......until he walked into the OR. We did not give him anything for anxiety (obviously) and so he began to get upset. Grant had to hold him so that he did not make a b-line for the door. They quickly got a mask on and he was in slumberland very soon thereafter. So Hunter was doing fine, but Grant was quite emotional and crying. I think the whole idea of subjecting his son to such a painful thing and having to hold him down was a lot for a daddy to handle. Grant and I sat with our pastor and prayed......hard. It really helped to have him there. The surgery lasted about an hour or so. They brought out the bag of Hunter's bone marrow to us in the waiting room. It was wrapped in blue towels. As long as I live I will never forget that moment. To see this bone marrow in a bag that had just been taken from one of my children and would soon be put into another one of my children was just overwhelming. It just took my breath away and I immediately began to weep. I just kept thinking this bag of bone marrow and God can save my daughter. Grant, myself, Lew, and Yvonne (the BMT coordinator) all sat and put our hands on the bag.....this precious gift from Hunter and prayed SO hard that it would do all that it could to save Alexandria's life. I am emotional and crying about it all over again to think about it. It was a life-changing experience to witness this. The bone marrow was then taken to the lab for a "count" to see how many cells they were dealing with. WOW, has Hunter been eating his Wheaties????? They needed at least 2 million cells and they got 4.75 million. You go Hunter with all your big bad cells!!!! Hunter has been recovering all day very nicely (with a little help from our good friend Morphine). He just came up to see Alexandria and we got some pics that we will try to post soon. They are priceless. They were so excited to compare I.V. poles. She has certainly got him beat on the pumps, poles and meds. I am SO proud of him as this was a lot for a 7 year old to endure. Hunter was on his way out of the room and Alexandria said "Hey Hunter", he turned around and she said "Thank you so much for your bone marrow." She told him that she loved him and was glad that they could put him to sleep and that he did not have any pain. I know they will share a unique bond. Grant and I just looked at eachother and did not have to say a word, we knew exactly what eachother was thinking.....WOW!!!
So, we all went up stairs to the BMT unit and from 12:42 until 1:42 p.m. Alexandria received another chance at life. Her bone marrow is all gone (hopefully) and Hunter's will be re-born in her. They will start making their own red blood cells, platelets, white blood cells etc. in the next 28 days. So we wait and pray that she engrafts sooner vs. later as she has NO immune system and susceptible to all kinds of infections and problems. We have been warned that on any day 2-8 things can really go down hill. They usually start feeling horrible. These symptoms can linger until she begins to engraft. Please pray with us for a quick engraftment. The transplant was really surreal. To Alexandria, it was nothing. She was hooked up to the bag just like she would get a regular transfusion. She felt great through the whole thing and ate Campbell's Chicken Noodle Soup. It took so long for us to get to this moment and what was transpiring before us was just an amazing thing. I do not know if I have processed it all even 12 hours later. Our pastor stayed with us until the last drop of bone marrow had dripped out of the bag. Grant and I were so thankful for his spending his entire day with us and all the prayers and comfort he gave us. We prayed again and it was all over.
She has had absolutely no side effects from getting the transplant thusfar. Of course, it is with very guarded optimism that I write those words. I have just heard that it is very common to have reactions, high blood pressure and a whole array of difficulties during the actual infusion of the cells. So, again, we are thankful.
To round out a perfectly magical day, our friend Rob Erusha brought up Pasta House for Grant, Alexandria and I and a pepperoni pizza for Hunter.(this is his absolute favorite) It was such a kind and thoughtful thing for him to do. To top it off he brought Grant a birthday cake. Thank you SO much Rob, we had not eaten all day and your generousity was greatly appreciated. That's right..... Grant turned 39 (and holding) today. What a wonderful birthday gift he received. I want to take this opportunity to again say Happy Birthday Daddy-O!!! I love you so much and thank you for being such a wonderful support system. I am so thankful to have such a caring and loving husband who has been my best friend for 15 years. We make a pretty good team.
I just cannot believe all of you who are passing along her website and then those people are leaving us e-mails and messages. It is awesome to see the number of hits to the website grow so much on a daily basis. Keep the prayers and messages coming as it is such a comfort to us.
God Bless you ALL-
Alison
Monday, September 30, 2002 at 10:06 PM (CDT)
Did I say I was at complete peace last week? Well, I was either delusional or that was just the calm before the storm. The storm that makes the Gulf Coast hurricane look like a mild shower. I just cannot adequately describe nor do I have the words to express fully all that has transpired this weekend. It has been another emotional roller coaster yet again. I will try to be brief and hit only the highlights but rest assured there is a great deal more to the story than I have the energy to write.
Friday we came into the hospital with Alexandria earlier than we had to be here because she woke up and felt "crummy." Since her counts (ANC) are/were ZERO, we decided to not take any chances and we wanted to get her down here and looked at. They did pre-BMT lab work, drew cultures to check for infection and then we were off to get a baseline chest x-ray. We immediately checked into "Hotel BMT" (desperately wishing it was the Hilton, in the Bahamas) and they got her started on fluids and antibiotics. Usually when a child starts the BMT conditioning regimen their ANC is relatively high. They get chemo and radiation and then their counts start plumeting. Obviously we are very nervous to start so low......we cannot go much lower than we already are. Several times her counts have been this low, she ended up getting a horrible infection and fighting for her life.
So we wait and hope and pray and hope and pray some more. Hunter also began his wild adventure on Friday. This is where much of the fun began. He was very anxious about the blood draws and two shots (the shots sting and burn when they go in). He was very upset, crying, and afraid. Bless his little heart. It took much bargaining and bribing and four nurses to hold him down, but the shots were given and blood drawn. After he had such a bad experience, I asked the docs if we could give him something to "take the edge off" with all that he was to endure in the coming days. They prescribed Ativan. Now to Saturday, the first dose of Ativan worked long enough to get the shots and CBC and then the wheels fell right off the wagon. Literally. He could hardly walk. He was stumbling around, running into walls and falling down. At first, Grant and I thought he acted like a real happy drunk person. This turned to anger and madness, vomiting and anxiety ten-fold to what he had previously. He was up most of the night going back and forth between beligerent Hunter and funny, silly Hunter. Grant was at home with him and said it was an absolute NIGHTMARE!!! We decided in order to get through the next day of shots we had to give him something or he would never go for it. Grant gave him a fourth of a dose. The affects were even worse than the previous day. This time he said he was having a hard time breathing and his chest hurt. Well, of course this freaked us out and we were on the phone with docs several times that day. He would not even entertain the idea of getting the shots and CBC for one second. He was so upset and anxiety-ridden and now he was having an allergic reaction to the medicine, and making him feel totally out of control. Grant brought him to the hospital and we sat debating whether or not to take him to the ER. Instead I sat holding him and rocking him trying to comfort him in any way I possibly could. The effects of the Ativan were still very much lingering (7 long and miserable hours later) and he was still weepy saying "Mommy this is so complicated, why does this have to be so complicated. Did I mention that these shots also can cause HORRIBLE, debilitating bone pain? That's right, he was also in a great deal of pain. At this point, Grant and I had a big decision to make. Do we stick with Hunter as the donor, choose another child, or go to bone marrow harvest for Hunter. This is where they put him under anesthesia, and poke his hip bones with a large needle around 75 times to get enough bone marrow for Alexandria. I know you are thinking, wow, this sounds much better, why would you not do this option in the first place? Well, because, although it would be easier for Hunter to do it this way, it would be more beneficial to Alexandria to do stem cells with the pheresis machine. Apparently they engraft quick and have a better chance of chronic GVHD, and therefore more graft vs. leukemic affect. (we want this) So, seeing that we do not want Hunter to have psychological counseling for the rest of his life, we elected to do the bone marrow harvest. Not our original plan but obviously it is God's plan. He will go to the OR at 8:30 a.m. tomorrow. They will count how many cells they have and then sometime tomorrow, not sure of the time, Alexandria will be given his bone marrow through her broviac catheter. I am absolutely amazed by this whole process.
Alexandria got her radiation this morning. She watched a movie through the entire thing. They taped her head and arms to a gurney and she had to remain perfectly still for 20+ minutes. Grant and I thought the whole thing was just scary and wild. It just seemed weird to be there doing this. I have certainly gotten used to the chemo thing but the radiation, and knowing what this massive machine was doing to her, kinda threw me off a bit. I prayed HARD for her. I opened the book I was reading about cancer survivorship (a gift from one of Grant's co-workers, thank you thank you Deb!) and it said:
Father,
I am overwhelmed
My burden's too heavy
Anxieties dominate
I ask you, God, take my problems
replace them with your peace.
Oh how I needed to read those words right then and there.
They were running behind in radiation but of course did not bother to call over to Children's BMT to tell us. So guess what we did? Waited and waited...story of our lives. The problem is we did not want to be sittin around there. With her counts SO low, we did not want her to be exposed to germs. Well, words were exchanged from us to them and we were very dissappointed in how it was handled..but we got through it. She did great, got off the stretcher and said "I want some Taco Bell, I am starving." They techs looked at us like....wow, never heard that right after radiation. Well, it was short-lived because when we got back to the BMT unit, she quickly got a horrible headache and started to vomit. She was treated with pain meds and anti-nausea drugs all day. She woke up at 6 p.m. and felt much better other than the side effects of swolleness, red eyes and a body that looked like she baked in the sun all day without the benefit of sunscreen. However, she was just thankful. She said "well now, that radiation was not too bad mommy." She amazes me every day of my life. She pulled her own tooth tonight as she just got a transfusion of platelets and this was a good time for her to do it (so she would not bleed too much.) We are praying hard she does not get an infection from this as in the past...VERY SCARY!!!!!!!
I am anxiously waiting for tomorrow. It is 11:30 p.m., I have not slept in 3 nights straight, I am exhausted but somehow cannot sleep.
Hunter is downstairs on the 8th floor with Grant. It is only by the grace of God that Hunter agreed to come here tonight to the hospital, but he did. He got dinner in bed, Spiderman stickers on the walls. We played Playstation and he fell asleep quickly. I will post more tomorrow as events unfold.
Please pray extra hard for this day to be the first day on the road to recovery for Alexandria and
that she be COMPLETELY CURED!!! Please pray that Hunter does okay with the procedure too.
God Bless you all and a HUGE thank you to my sister Michelle, who is here from New Jersey to help us with the kids!!
love to everyone-Alison
Thursday, September 26, 2002 at 07:39 PM (CDT)
Hello everyone-
I am so sorry that it has taken me so long to update. Things have been absolutely crazy around here. We have had to go to the clinic several times this week for blood transfusions, lab work, etc. I have been frantically packing for our upcoming 1-2 month hospital stay. I tend to get a little (okay, alot) crazy with the packing. I always feel like I am going to need something and not have it.
Our pastor, and enough church members to fill our entire family room, came over Wednesday night to lay healing hands on Alexandria and pray for our family. Once again, it was an awesome thing. The caring, concern, and compassion I felt from them all was unbelievable. The spiritual strength that each and every Christian in the room displayed was amazing. Some of them were youth from the church. To know that they would be concerned about us and want to come pray with us was a great testament to God and how He is working in their lives. It is such a great source of comfort for Grant and I to know that so many people care and are right there with us every step of the way....just like God. Thanks for all of you who came, we truly appreciate it.
We are due to go in-patient tomorrow (Friday). Alexandria will get hydration all day. Hunter will go to the clinic tomorrow too. He will begin the two shots daily of
GCSF/GMSF (growth stimulating factor) to increase the number of stem cells he produces. He will also begin getting a daily CBC to monitor his counts. He seems to be emotionally and psychologically fine with it all. He is SO brave and I am SO proud of him. This ordeal is so overwhelming sometimes. I hope and pray so hard that everything goes okay. There are SO many things that could go wrong....so many complications, reactions, etc. Somehow, (actually only by the grace and mercy of God) I seem at peace with it all. We will just take it one day at a time. Of course I am scared, but I just have to have faith and hope that God will carry us through yet another phase of this long journey.
Thank you to everyone who has brought by or sent a gift to Hunter or Alexandria. I cannot tell you what it means to us...to them. I think Hunter is really going to have a strong appreciation for all the praise and attention he is/will be receiving. If anyone has children who would like to draw them pictures, they would love it. You can either send it to the hospital or send it to our home and we will get it to them. We want to hang pictures, etc. in their rooms to make it feel more warm and "homey." Okay, you all know me, and I must say I have had to use some restraint in that area. The decorator in me definitely wants a new look for that 10x10 room we will be calling home for a long while. I did buy some lavander pillow cases and other small decor (butterflies to hang from the ceiling) for her room. And of course, Hunter's room will have Spiderman stickers and posters. Alexandria's bed will be finely adorned in an absolutely beautiful quilt that a wonderful person named Denise (a member from church) made for her. It has butterflies and dragonflies, etc. and is very colorful.
Well, hopefully I will be able to keep you all updated. Unfortunately, Alexandria's laptop that she received last Christmas kept shutting down and so we had to take it in for repairs. It will not be back for two weeks!!!! I am not sure what we will do. I cannot imagine at such a critical time not being able to update you all. That computer is like the link to the real world sometimes when you are held-up in a hospital. We will figure it out, even if we have to take this big computer there.
Speaking of the hospital, when we were at the clinic yesterday, we went to look at who was in the BMT unit. There are 5 isolation rooms there. They have positive air-flow so that air goes out when the door is open, but does not flow back in. There is an ante-room where the docs and nurses will wash their hands and then you enter her room. There is a wall of glass I guess to make it seem less claustrophobic. We will try and take a pic and post it on the website. These patients are treated like they are in critical condition at all times. (they really are in that condition for much of the time). Anyways, Alexandria decided that she wanted Room #1. (1 and 2 are open, but both will be filled tomorrow. There is another family that lives in Wildwood that will be there with their 2 year old son for BMT. He will have his on October 1st too from a MUD (matched unrelated donor). Is that amazing? I am sure we will have much to talk about. I am not sure yet who else is in the unit. Alexandria told Andrew (the two-year old), that maybe she could come and visit him in his room sometime). It was So cute.
I know I will struggle to watch and endure all that the next month has in store for Alexandria and the entire family. I know in my heart that God has a plan and He knows what He is doing. Of course I hope and pray that our plans are the same, but only time will tell that. In the meantime, I am on my knees, praying hard.
It sounds like things are going good with the golf tourney and Alexandria is SO excited. It is really cute to hear her talk about it. Thanks to everyone who has signed up, sponsored the event or donated an item for the auction. It really means alot to us.
I great friend of mine Nancy just came over. She understands all too well what we have been through the last 2 years because her brother fought a similiar battle with cancer (and won, thank the Lord) when they were younger. She brought me a book and CD entitled I Hope You Dance, by Lee Ann Womack. I must admit that every single time I hear that song I think of Alexandria and pray so hard for her. On the way home from clinic, she said "mommy, I want to have at least two children when I get older....I never want to be lonely." Oh how my heart just broke and crumbled into pieces as I know that by giving her the radiation this will never be a possibility for her to have children naturally. But for now I will just think about the words of that song and pray so deeply that it will be her reality.....
I hope you never lose your sense of wonder
You get your fill to eat but always keep that hunger
May you never take one single breath for granted
God forbid love ever leave you empty-handed
I hope you still feel small when you stand beside the ocean
Whenever one door closes I hope one more opens
Promise me that you'll give faith a fighting chance
And when you get the choice to sit it out or dance
I hope you dance....I hope you dance
I hope you never fear those mountains in the distance
Never settle for the path of least resistance
Living life might mean taking chances but they're worth taking
Loving might be a mistake but it's worth making
Don't let some hell-bent heart leave you bitter
When you come close to selling out, reconsider
Give the heavens above more than just a passing glance
And when you get the choice to sit it out or dance
I hope you dance.....I hope you dance
Time is a wheel in constant motion always rolling us along.
Tell me who wants to look back on their years and wonder
where those years have gone.
I hope you dance...I hope you dance
I hope you dance
Please keep us in your prayers and I will hopefully update soon.
God Bless-
Alison
Saturday, September 21, 2002 at 07:31 AM (CDT)
Well, another busy week but how thankful we are that we spent it at home instead of the hospital. We know all too well that with counts this low she could get a fever at any time and we would have to go in. Hayden's 6th birthday was on Thursday (see pics in photo album) and we enjoyed Pizza Hut pizza and a big chocolate cake. (Alexandria was very disappointed in his dinner choice...she is anti-pizza these days) She did however enjoy an entire pack of chicken wings. She was waiting in the driveway for that pizza guy and quickly snatched the wings out of my hands and ran inside to consume. These steroid cravings are crazy. It is like pregnancy cravings x a million. Every morning we wake up to find the "remnants" in the kitchen of the night before when she decided to get up and fix a little snack for herself. Let's just say that I saw a great big chunk of Hayden's birthday cake missing this morning that was there last night when I went to bed. She will blame it on her daddy though. We are just so thankful she is eating because we have been warned that she will not eat much during the in-patient stay for BMT.
So, we got Hunter out of school Friday for his appointment with the psychologist. She always speaks to sibling donors before the procedure to see if they have any questions or concerns. I discussed with her afterwards some of her thoughts on how Hunter was coping with things. I was brought to tears by some of his responses to her. He told her how "mad" he is at this leukemia for what it has done to "his sissy." She asked him what the hardest part of his sister being sick was and he said "having to miss school and be away from his friends when it could get sissy sick." She asked him if he was afraid of the machine he would have to be hooked up to and he said "not anymore, there is a copying machine at my school that is about that big and so now he was not afraid of it anymore." The doc told me that he was a little concerned of the catheter that was going to put in his leg, but quickly followed that up with "this is going to help sissy though, so I will do it." The psychologist has warned us about portraying Hunter as a "hero." She said that children donors have a very difficult time and blame themselves if there is not a positive outcome to the BMT. So it is better to call him a "helper" and praise him for his bravery. She told him that his job is to give his blood and stem cells. Then she asked him "who is it up to then to take over and do the rest?" Guess, what his response was? He said, "God, of course....and also sissy's body." I was SO proud of him. That was perfect. We want him to realize his role is to give this gift, but then it is up to sissy's body to take over to do the rest. Of course, with a great deal of help straight from God. So, then we were off to the clinic with Alexandria, Addison and Hunter. Hunter was also supposed to get BMT blood work (re-drawn because the 30 day time period has lapsed). We were supposed to sign all the consent forms with the doctors and go over any further questions. This was put off for 2 hours because the BMT doc was in a meeting. So, we sat and waited...a very common thing in this ordeal. They finally sat down with us and we signed away, but we did not get a new house in the end. (we felt like we were buying a home we had to sign so many consent forms). Several times during this conversation, the doc referred to our child as "he." Can I just tell you how ANNOYING this was. I realize that with a boy donor and girl recipient that you could mix the two a up once or twice. But he did it CONSTANTLY throughout the entire conversation. I wanted to say "hello, her name is ALEXANDRIA....yes, that is right A L E X A N D R I A...and she is a girl, please refer to her as such. I know they are busy doc's with many patients, and we just officially became his patient since we have "BMT clearance", but still !!! Then a nurse walked in and informed us that after waiting all afternoon and Hunter missing school, that they could not do his lab work today because they must send it to Minnesota and no one would be at the lab on Saturday to accept the Fed-exed blood. Okay, I do not even need to explain to you my anger at this point. If this was an isolated event, so be it, but these things happen CONSISTENTLY at that hospital and after 2 years it is getting a little (ha) annoying. Could someone not have realized that we could not do this on a Friday for this reason?? Is it too much to ask that for once they consider what is in our family's best interest?? Or that we may have a schedule, or things to do, etc????? Oh well, par for the course. Well, disappointment in that situation was quickly replaced with total thankfulness. Another nurse walked in the conference room and said "I just got a fax from BC/BS and they are going to pay. Big, massive, huge relief, as we do not $350,000 laying around.
We enjoyed all snuggling up together and watching Monster's Inc. last night. We are savoring every moment of this weekend and next week since it will be our last prior to being apart for 1-2 months. We will go in-patient next Friday, September 27th and then won't come home until her counts come back up and she engrafts Hunter's cells.
Thanks for checking in and being there for us every step of the way. We certainly appreciate it.
God Bless-
Alison
Tuesday, September 17, 2002 at 09:43 PM (CDT)
Okay ...is everyone proud of me???? Please pay careful attention to the time of this update!!! P.M. not A.M. Well, the night is still young folks. Anyways, we were at the clinic yesterday getting a shot of L-asparaginase chemo and the doc's attempted several times to call the lab and find out the results of the bone biopsy....no luck. We waited and waited and called and called for results again today. Finally, at 4 p.m. Debbie Robinson called and said that the biopsy was read. (well, thanks for reading it lab guys since we were not waiting on pins and needles or anything ALL WEEKEND!!! oops...sorry for the sarcasm) The results were not a number...just the words "scant lymphoblasts." It said that her marrow was hypocellular and therefore difficult to get an actual count/%. (The chemo kills the good, the bad, and the ugly so now they see little remaining cells). Now, I am quite sure of what the word "scant" means but what does it mean to the insurance company. Debbie was not sure but would talk to a caseworker tomorrow to find out if they needed more "proof" of a remission or if they were satisfied with Dr. Wilson's call of 5% on Friday. If they are not satisfied with that, we will have to put Alexandria under anesthesia yet AGAIN on Friday for ANOTHER bone marrow aspiration and bone biopsy. Someone at Blue Cross/Shield needs to look at the history here and realize she has had anesthesia every week for about 8 weeks now and enough is enough!!! Not to mention that it is an exercise in PURE MISERY for Alexandria to undergo the procedure and for her parents who must console a child who is on steroids and quite accustomed to eating every 30 minutes almost around the clock to go 8, long, grueling hours without food for the anesthesia. Well, we'll cross that bridge when and if we get there (you'll be hearing my screams through your computer.) In the meantime......YEAH....HOORAY...and a HUGE THANK YOU TO GOD and for all of you who are praying. We realize all too well that the number could have definitely gone in the other direction. (up) So we are thankful. Eternally grateful that despite BC/BS attempts to get out of paying for this...we will proceed. Thanks be to God that after 9 long weeks of anticipation and constant ups and downs since her relapse on July 11th, 2002...WE ARE GOING TO BMT!!!!!!!!!!!
Now, we will all have to start praying hard for the donor/Hunter to have a painless experience, not many side effects for Alexandria, quick engrafment of the stem cells, Hunter's big and bad stem cells to kill any remaining hooligans and a PERMANANT CURE TO THIS DREADFUL DISEASE!!!! I know it is much to ask, but if anyone deserves this Alexandria does. She is an inspiration to us all. I thank the Lord each and every day for choosing me to be her mom.
Many of you have e-mailed or called me about the upcoming golf tournament. Information and sign up forms will be coming shortly. We will do a mailing or put it in your mailbox if you live close. There seems to be a lot of interest already and sounds like spaces will go quickly. I cannot tell you the feelings of gratitude I feel when I sit quietly listening and watching the women and men in this neighborhood talk about and plan for this event. They are SO enthusiastic, so giving of their time and talents. It is an amazing experience, a true testament to God and all that He stands for to watch people coming together, working for a common goal....to help others in need. We love you guys and are SO thankful for each and every thing you all are doing to make this event happen.
-A friend in deed is a friend indeed!!!
Thanks for visiting the website. Thanks for passing this it along to others who will pray for our daughter. We know God is listening. What a wonderful feeling for our family...12,500+ visits to the website. It is a great source of comfort and sincerely appreciated.
God Bless-
Alison
Monday, September 16, 2002 at 12:58 AM (CDT)
*** Please see previous journal entry for golf tournament details****
I am SO sorry for not being able to update sooner. I have tried to pull up the website many times this weekend and was not able to. So, the PRELIMINARY report is 5%. Grant and I have been praying long and hard this weekend that when the actual results come in tomorrow (today/Monday) that they will be the same. Typically, these results vary a great deal...up to double the % is usually seen from the Bone Biopsy. So, we are holding tight and hopeful that the results from Friday were very close to the actual %. The plan is to keep her on these drugs and finish the
re-induction until September 27th. Hunter will start receiving 2 shots per day for 5 days (GCSF/growth stimulating factor to stimulate his stem cells) and daily CBC's to check his counts. We will then go in-patient to start her conditioning regimen. She will get high dose chemo (cytoxan) on Saturday the 28th, and Sunday the 29th. Radiation will be on Monday September 30. Hunter will get the catheter placed in his leg on Monday as well. Tuesday, October 1st, Hunter will be hooked up to the pheresis machine, stem cells are spun off, taken to the lab for a count, then delivered to Alexandria's room and put into her like all other blood products...through her broviac catheter/central line. It is all SO amazing. October 1st is Grant's birthday. How awesome is that ????? That she will be getting her transplant on Grant's birthday!!!! I was hoping that it would turn out to be either on my dad's birthday, September 26th, or Grant's. I was so happy with the news, and hopefully it will turn out as planned. We decided to go with the single-dose TBI (total body irradiation). This was such a major decision. We went back and forth every day. We were on-line and talking to doc's all over the country looking for answers and advice. If we go with the lower dose she would be able to receive radiation again in the future (if she relapsed again and needed another BMT, you can two in a lifetime). If we went with the high-dose radiation, she would have had her maximum lifetime dosage. We pray that we made the right decision, it is a leap of faith really.
Grant and I have known or heard of so many children dying lately. Sometimes it is SO overwhelming to think of all these precious children, fighting so hard and not winning the battle. It just breaks our hearts and quite frankly scares us to death. Children should just not have to go through an ordeal like this.
We had a great weekend. We may have to take out a loan to pay for all the food Alexandria is consuming. Bless her little heart. The steroids just make you absolutely starving 24/7. In fact, I just made her a ham sandwich and a microwave meal. It will last but a few short hours and we will be up again. Oh well, I am usually awake anyways. Her big craving with this round has been Steak and Shake (one of my personal favorites). It is getting more and more difficult to resist getting a little "snack" for myself when we go there daily. (sometimes twice) It is certainly difficult for Grant and I to carefully watch our intake when you are fixing food for someone else SO much. Oh well, what's a few extra lbs at this point???? Saturday night Grant and I went out with a few couples from our neighborhood for dinner (and a round of golf too). It was so good to get out. We really enjoyed ourselves and we laughed so much. Thanks guys for a wonderful time!!
Well, Addison just came bounding downstairs to my room and it is 1:30 a.m. Okay.....we ALL have "sleep issues" around here. Even our nocturnal cats look at us like "are you guys nuts???, get some sleep already!!!!" Well good night or good morning....whatever!!!! I will post an update with results as soon as I hear the news.
God Bless You-
Alison
Friday, September 13, 2002 at 01:58 AM (CDT)
***SEPTEMBER IS CHILDHOOD CANCER AWARENESS MONTH***
UPCOMING EVENTS:
***2nd Annual Alexandria's Angels Golf Tournament***
Monday, October, 28th
WINGHAVEN COUNTRY CLUB, O'FAllON MO
More details to follow soon, however, if you are interested in volunteering your time,(they need many volunteers) finding out more information about company sponsorship or donating prizes, please contact the following chairpersons of the event:
Tara Zanti 561-0469
Nancy and Bill Cole 561-2804
Tammy and Dave Whalen 561-8288
Grant and I are so thankful for such wonderful neighbors and friends to put this event together on behalf of Alexandria. Words can not express our gratitude for everyone's support. It sounds like it is going to be an awesome day. Please plan to attend even if you are not a golfer to show your support of Childhood Cancer Awareness.
Today will be yet another extremely long day. Alexandria is due to get a round of chemo in the clinic and then we will go to the Procedure Center where she will get yet ANOTHER bone marrow aspiration and biopsy at 3:00 p.m. (PLEASE PRAY EXTRA HARD AT THIS PARTICULAR TIME). We have been praying hard that there is enough cells in her marrow to determine whether or not we are looking good for transplant. We are praying that we are under the 5% blasts in the bone marrow so that we are a "GO." We are praying that Alexandria will have comfort and peace as she endures anesthesia and a painful procedure of a bone biopsy/aspiration. God has carried us through these nerve-racking days so many times and I have faith He will be right there again. They will stain the slides which takes one (VERY LONG) hour and will be able to give us a "preliminary", "eye-ball" determination of how many blasts she has. The final results will probably not be in until Monday. The lab is closed on the weekends. We will be on baded breath all weekend until we learn of the news. We try so hard to "Do your best, say a prayer, let go and let God take it from there." But, I must admit that this is very difficult at times...to hand it completely over to God even though in my heart, I know HE will take care of us. It is just my human nature to worry....she is my baby and I want things to turn out alright.
It is 2:20 a.m. now and Alexandria just came downstairs for a snack....the first of many for the night. Bless her heart, these steroids really make things crazy in her body. I suppose there are much worse things, right? She just looked over at me and shook her head laughing at me...thinking I am the crazy one....up this late and No good reason. I just look at it as another opportunity to share a special "Lucky Charms moment" with a beautiful nine year old girl who means the world to me and I am SO proud of.
Our pastor, Lew Kimmel, and several others from our church came by the house tonight. They prayed for Alexandria, laid healing hands on her, and annointed her with oil again. Grant and I felt the power of so many praying last week at church, and knowing that her leukemic load went down because God heard our prayers. We wanted to repeat those efforts in the hopes of a similiar outcome (or even better) this week. I cannot put into words the feeling that God is just right there in that room taking care of what needs to be taken care of, giving us all peace. The impact of this act is amazing. Thank you to all who came. It means a great deal to our family.
Well, I guess I better try to get the doodlebug more to eat (I cannot wait to hear what the order is as it is always interesting to see what she is craving). Thanks to all of you for stopping by and saying a prayer while your here. Please do not ever feel that what you write in the journal will not be helpful or significant. Even the signing of your name to let us know you were here is enough for us and means so much.
God be with you-
Alison
Tuesday, September 10, 2002 at 05:22 AM (CDT)
I really want to figure out how to erase the time of journal update. I actually did get a little sleep last night. Alexandria went to the clinic today for a shot of
L-asparaginase chemo. She has had many in the last 11 days. Thank goodness we are able to put EMLA cream on her legs as it somewhat numbs the pain and makes it a bit more tolerable for her. She is on Day 12 post Daunoraubicin chemo and therefore her counts have dropped.....significantly.
White Blood Cell (WBC) 0.5 (Normal 4.5-13.5)
Hemoglobin (Hgb) 7.1 (Normal 11.5-15.5)
Platelets (Plt) 59,000 (Normal 140,000-440,000)
Absolute Neutrophil Count (ANC)(ability to fight infection) 190 (anything below 500 is critical and needs monitoring)
I will begin posting her counts as I know that some of my family members/friends are very familiar with these CBC results and I know they want to know what they are. Debbie, Alexandria's PNP, said that her counts could stay low until transplant. We all know what that means....my thermometer will be doing quadruple time...and let the feeling of the forhead begin. I pray hard that she will not get a fever. That means we must go in-patient. We are SO enjoying all being home together as a family...sleeping under one roof. We know that we will be in-patient for at least 3-4 weeks at BMT and therefore we do not want to add to that time. Please pray that she remains fever-free.
She had to get a unit/transfusion of red blood at the clinic and I think it perked her up a bit. I cannot begin to express our gratitude for those people who give their blood and platelets. There is such a shortage and we need these products frequently. What a selfless and wonderful gift that one could give to help someone in need. She was in a great deal of pain this morning from the Vincristine she received on Thursday. This chemo can cause severe nerve pain (this is the most painful of all pains). We are giving her a medication called Neurontin to help with the nerve pain but she is very sensitive to this chemo. So much so that we were at 1/3 the dosage before she relapsed. We want her to get the chemo because she needs it to get her back into remission, but it is vey difficult to watch helplessly as she agonizes in horrible pain. She took Oxycodone (an extremely strong narcotic) and I think it helped, but just slightly. She felt much better after a long nap in the clinic. As soon as her eyes popped open the steroid brain kicked in and IMMEDIATELY requested a trip to Red Robin's. So, guess where we went...you got it. We had appetizers, entree, and even dessert....hot fudge sundaes!!!! Life doesn't get much better than that to a child with an appetite like she has these days. We came home and watched a great family movie "The Rookie." Snuggling up with the kids was a real joy.
Grant did speak with the BMT doctor today. I was, at first, a little stunned and confused by his demeanor and attitude. He started the conversation by informing us that the wonderful Blue Cross/Blue Shield had been calling to find out Alexandria's remission status. They have informed our doctors that they have NO intentions of paying for the $350,000 bone marrow transplant unless she is in a COMPLETE remission. On the one hand, Grant and I do not want that issue to even show up on our radar screen. It is not important...it is insignificant. We must put all of our energy and thoughts into prayer and making the absolute best decisions for our child. We have a nice tent that comfortably sleeps 8 that we would live in to be able to pay for this transplant. On the other hand, is it not just a tad annoying to think that this is our only hope, our only chance at a cure, and someone is sitting in an office somewhere trying to decide my 9 year old daughter's destiny....her future? No matter if the number is 5% or 10% blasts...we have to do this BMT and the fact that they say they will not pay for something that is rightfully ours is unfathomable. Dr. Hayashi then proceeded to tell Grant that it is possible to get her back into a complete remission. Grant asked is it "possible or likely she will get there?" His response was "possible, but he would not say likely." He did not want to be "too optimistic or make any promises." Grant and I really were not prepared for his lack of positiveness. We feel like we are moving in the right direction, and other doctors feel the same. We are still trying to figure out why his attitude was such. I can guarantee that NO ONE or NOTHING will let me lose HOPE for my precious daughter. She has fought way too long and way too hard to go without the fight of her life. How dare ANYONE try and make us, as her parents, lose hope. I understand that as a doctor they must call it like they see it and be honest. However, we still have time...we still have options and things could be much worse right now. She continues to have NO blasts in her peripheral blood. This is a good sign. We feel that this chemo is working, she is responding and all else just does not matter. Grant and I have the faith and trust that God will continue to heal her and she will continue to be a testimony to His mercy and grace.
Our family continues to feel the love and support of all of you who are praying and holding tightly that God will see us through. We are constantly amazed at how this situation has healed so many wounds within us and brought people back into our lives who haven't been there for quite sometime. It means a great deal to us. I see God's plan, His work through us, every single day. To see the number of visitors go up and up constantly is so amazing. I cannot believe there is 11,000+ hits. Your kind thoughts, words and prayers written in the guestbook mean so much to Grant and I. We could only make it through with so many of you cheering us on.
We will have our radiation consultation tomorrow (Weds.) and more chemo on Thursday at the clinic and then the bone marrow aspiration on Friday. Quite the busy schedule, huh? I will keep everyone posted so please check back frequently.
God Bless You ALL-
Alison
Saturday, September 07, 2002 at 08:43 AM (CDT)
***Please check for an earlier journal entry that was written this morning. I bet any of you who read it thought that I fell asleep, but actually the website was experiencing some difficulty and it added my entry incompleted.*****
So... back to the results of yesterday's test. They needed more cc's in the sample to run the test. Grant and I were sad about this, but these things have happened to us so many times in the past. I guess we should be used to it by now. Alexandria will have ANOTHER bone marrow aspiration this coming Friday, Sept. 13th.....GREAT, huh? Bless her heart. She does okay with these because they have to put her completely out, but she is getting one every week now and it is getting old for all of us. You should see her back end at the hip area where they have poked her SO many times. She looks like a pin cushion. They have to use big needles for these too. So we wait....again.....wait, wait, wait. It seems like we are just constantly waiting to see and the not knowing and the anticipation can get a little overwhelming at times. The doc's say they really think she is moving in the right direction, and I believe that too. So, we are VERY thankful.
They are trying to "fit us in" to the radiation schedule. We have a consultation at 7 A.M. Wednesday. Oh, what fun that will be to get her up at 6 a.m. to drive to Children's. They will do measurements to calculate the correct dose for her body. Which brings us to yet another big decision that Grant and I will soon have to make. Whenever they decide that she is less than 5% and we are a "go" for transplant, hopefully within the next week or two, we will go in-patient.
They will start a "conditioning regimen." This is when she will undergo some more heavy doses of chemo, enough to completely wipe out her entire bone marrow....permanetely. At other times she has received the extremely high doses of chemo, they gave her just enough to take her to the brink and kill all the good, the bad and the ugly cells with the the goal that her bone marrow would eventually come back with good guys. Now, they give her enough chemo to completely kill her bone marrow cells so that it never comes back but will be hopefully regenerated by Hunter's bone marrow. She will have that chemo for several days and then we go to radiation. Things get a little tricky here. She can either get one single dose TBI (total body irradiation) for a total of 500 rads, or 4 equal lower doses of TBI which equal 1200 rads. Many cancer centers only use this higher dose regimen (1200 rads) which is the standard therapy. It has proven to be successful at killing the cancer but not without it consequences. The rate of morbidity and mortality is much higher with this one. There are many side effects associated with both, but much more with the 1200 rads. Barnes and Children's have been doing this protocol for 3 years now (single-dose TBI) and say that they are seeing the same benefits (long-term remission) and less side effects. Grant and I also must consider that her body has never seen radiation before. Is this the key to her cure?? I would hate to look back in a post BMT relapse situation and wish that we had given her more radiation. On the other hand, I cannot imagine watching her suffer from the HORRIBLE side effects of the other and wish that I had given her one single dose. If I only had that crystal ball!?!?! Grant and I have a meeting with the BMT doc's on Monday to discuss the issue more thoroughly and I can only pray that there is clarity to make the final decision easier. Many prayers will be said too.
Hunter will also begin his regimen too. He will begin getting two shots a day for 5 days prior to her transplant. This will boost his red blood cells, stem cells, etc. and stimulate his bone marrow to produce even more, making it better for Alexandria's body. He will go under anesthesia and get a catheter placed in his chest or in his groin. The next day he will have to lay still on a bed, hooked up to a pheresis machine for 6 hours while his blood is drained, stem cells spun off, and then infused back into him. Sounds like fun, huh? He is a little anxious about the whole procedure. It is the anticipation and the prolonging of the inevitable that is making it more difficult for him I am sure. He does realize that this can potentially save his sister's life and still willing to forge ahead. I am so proud of him. It has to be scary for a 7 year old. He is old enough to understand things and I know he worries deeply for his sister.
Well, sorry for the novel here and I hope I did not bore you with the details but it really helps me to put it all down.
Take care, God Bless, and we'll keep you posted.
Alison
Saturday, September 07, 2002 at 04:38 AM (CDT)
I know, I know, I should be sleeping right now like every other normal person but sometimes it just does not happen. Oh well, it gives me time to update the journal.
The reason I did not post an entry yesterday when we heard from the doc's was that many things were just "sinking in" and I did not want to write too quickly.
First of all, please take a moment of silence and prayer for the family of Austin Young. Austin never again has to worry or be scared. He no longer has to receive chemotherapy. He no longer will suffer this dreadful disease. He is in heaven. He fought the battle for most of his little life, but no more. Please be with his family Lord and give them some sort of comfort during these most difficult days. I would ask that you continue to also pray for the Hallemeier family who also lost their son on July 22nd. I know that it is still extremely hard for the family to go on without him. Their daughter is getting married today and although such a wonderful and joyous occasion, still difficult when mourning the loss of a child. Sometimes it is just so overwhelming. To hear and know of so many children around you fighting hard to win over this awful disease and not winning the battle. It is an emotional world to live in but makes us appreciate our time with our children to an even greater extent. I try not to take one single moment for granted with them. I promise you I am no where near a perfect mom, but if one very life changing lesson is to come of all of this, that would be it. Don't put off until tomorrow what you must say or do today....you do not know if will have that opportunity tomorrow.
I received a call this afternoon and as upsetting as it is to write, I was told that they needed 10 cc's to run the flow cytommetry test and they only took 5cc from Alexandria. Grant and I just like to hear a definitve number, one that takes "human error" and subjectiveness out of the equation. In other words when they looked at the slide on Thursday, they do "a count" by "eye balling" it. It is very difficult to analyze the cells and tell if they are good guys or bad guys. The flow test is an exact %. It is all a numbers game. All of her lab work, % of blasts, it is all a numbers game. You look daily at all the numbers and it all blurs together sometimes
Thursday, September 05, 2002 at 08:36 PM (CDT)
PRAISE THE LORD!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!
PRAISE THE LORD!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!
PRAISE THE LORD for He is SO GOOD!!!!!!
We do not have an definitive number but the doc's feel like we are making progress in the right direction. (Maybe down to 10%, but they are not for sure). Therefore, we will stay the course and continue this protocol for a least another week. I will post the exact number tomorrow afternoon as soon as we hear the news. We are so thankful that no matter what the exact number is, we are headed down. We still need to be at less than 5% to go to transplant. This BMT could happen in the next few weeks even. All of our prayers are being answered and we know God is listening.
I would like you all to please take a moment to pray for a 6 year old boy, Austin, that is at St. John's in the PICU fighting for his life. This child and his family need prayers right now more than we do. He has a fungal infection and no immune system to fight it. This is a very deadly virus especially with no immune system. Our hearts go out to this family. Another one of our friends Kailie Rhines (also in-patient at St. John's with ALL - high risk) is having troubles with pain management and stomach problems. The have had to drain 1600 cc of fluid and still do not know the cause of the problem. Alex Pearl (also at St. John's, Fanconi Anemia, and friends of ours as well) has the same MRSA (staph infection) that Alexandria had last month. Thank goodness she has an immune system to fight it. This our life.....our world....you are either "in the building" as I say, or your not. In other words, as much as one tries to understand how difficult and painful this world is you would have to live it to completely understand. I would not wish this upon anyone. Please keep all these precious children...these special gifts from God and their families in your prayers. They all need it.
Thanks be to God for good news today. I must say that I REALLY needed it more than you could know. Alexandria is feeling pretty good despite a bone marrow aspiration, spinal tap and 5 different chemo's today. I am in awe of her. Let me be the first to admit that if I had had a day like hers, I'd be curled up in the fetal position whining and crying about the pain and the experience. She is happily laying in my bed, remote control in hand, happy as a clam. Oh how I love her and love to see her right there in that bed with a smile on her face. Today was a very long day. I have been on my knees in almost constant prayer and I won't let up now. Thank you to everyone who is doing the same because you love her too.
She is still on the steroids (and could not eat ALL day because she had to get anesthesia for her procedures). Needless to say as soon as her eyes opened today, she quickly put in a request (actually it was a firm demand) for onion rings and a turkey sandwich. Oh, the things we are thankful for.
I must go to sleep now... I was up half the night. When Alexandria needed her steroid snack in the middle of the night, I enjoyed a nice bowl of Lucky Charms and they really were magically delicious!!!
I'll post tomorrow....keep up the prayers.
God Bless-
Alison
Thursday, September 05, 2002 at 01:52 AM (CDT)
Yes, it is 1:52 A.M not P.M :( cannot sleep as usual and felt like writing things down would be therapeutic. Late at night (or early in the morning, however you look at it) I feel like things seem clearer to me. Or maybe it is just that I can actually complete a thought without someone interrupting that thought. I know sometimes it seems as though I put alot of information that is technical or maybe you are thinking it is TMI (too much information) but this journal serves a dual purpose. It informs those of you who care so very much about Alexandria and our family and it also helps me to deal with the every day trials and tribulations that we are as a family experiencing.
The last few days have been so emotional. My sister Michelle, who came for three weeks to help out, left last Thursday. She lives in New Jersey now. My sister, Stephanie and her daughter Sidonia were here over the weekend and left Tuesday. So great to have them here...so hard to say goodbye to those that have not only helped in their physical capacity but also as an emotional comfort to us as well. I thank God for my sisters daily and their constant caring and support.
Sunday, as you know from my last journal entry, they had a very special prayer for Alexandria during the 11:00 service at Dardenne Presbyterian Church. Last evening Grant, myself, Alexandria and my mom went to the "Hope and Healing" service there. We sang Alexandria's and my favorite song "Awesome God." That song is just amazing to me. It reminds me just how wonderful our God is and that He will always be here...never leave us nor forsake us. We sang "Rise and Be Healed", "Turn your Eyes Upon Jesus" and "Jesus Loves Me." I cannot adequately describe the feelings of comfort and thankfulness for my neighbors Tracy, Sheryl, and Nancy who came last evening. Or to my friend Monica, who has been a wonderful friend since the 7th grade. And imagine my surprise and gratitude when Rob, a wonderful previous neighbor and friend, came to show his support. Or Diane, Grant's 2nd cousin that we had never met before, coming to meet us, pray with us and for us. I just cannot tell each and every one of you how much it means to me, to Grant, to Alexandria that you all would take time out of your lives to come to our church to be with us. God Bless each and every one of you. Once again I could feel the power of God in that church as many adults and children as well laid hands on Alexandria, prayed for her and over her. As people took turns praying individual prayers for her, I felt so much positive energy coming from God through their hands into our bodies. I felt comfort and peace to know that so many of you care so much and join us in the belief that God will heal her. It was an extremely emotional and spiritual experience that I will never forget as long as I live.
As you know tomorrow, or rather later today, she will get another round of chemo in the clinic and then she will have another spinal tap and bone marrow aspiration. They should be able to tell us about where things stand. By looking at the slides under a microscope, it should be fairly evident if we are making any headway and are going in the right direction. They/we will know definitively on Friday afternoon when the actual test results from the flow cytometry test comes back. This number (% of blasts in the bone marrow after one week of this round of chemo) will determine if we stay on this path (continue the 4-drug induction for 1-2 more weeks) or quickly shift gears and move to the experimental drug. So, once again, we hurry up and wait. Much of this ordeal is a waiting game and I have to confess when it comes to things like this, it is the waiting, the anxiety and anticipation, that is SO difficult to get through.
I know that these journal entries are always long and I appreciate you taking the time to come to the website. Even if you just leave your name to let us know that you were here, checking in, we would really appreciate it. If we know that you were on the website, then we know that a prayer was probably said in Alexandria's name, and that means so much to us. The power of so many praying...I know God hears us.
I want to share the Prayer of Thanksgiving from the service because it is so special and meaningful (in which Alexandria also replied, "Hey it isn't Thanksgiving yet")
Gracious God,
We are reminded that you say that your Word is healing to the flesh! We praise you for the hope that we have in the life, the witness, the death and resurrection of Jesus Christ our Lord...who promises that we might have life and have it abundantly. Thank you first of all for the hope that is within us...the hope of your grace and Glory. Thank you for being the guard, guide and healer of our hearts. Thank you that you are able to heal fully, any part of our physical being. Yet, we want to be assured that our minds, emotions, spirits, relationships and hearts are subject to your healing mercies. We love you Lord and place our lives and all our needs and concerns into your loving care...trusting that you will never leave us or forsake us. We love you Lord and thank you for Your eternal commitment to us your children. And all God's people said "AMEN!!!!!!!"
Isn't that amazing? It was perfect prayer for a perfect evening. On the way home, I asked Alexandria how much it meant to her that people care so much about her and what she thought of the service. I know she sincerely appreciates the concern and caring but here is what she said, "It really meant alot to me mommy, I was listening to all the prayers but I also had to keep thinking about Nintendo to keep from crying because everyone else was crying." Whoops....Out of the mouths of babes." At least she is honest.
At the service, there were also friends of a young father who was just diagnosed with stage 4 colon cancer. I believe they said that he and his wife just had a baby and also had other children. The man's name was Craig...please pray for that family as well. I am sure that they would appreciate it.
We will keep you posted and thanks again for all that everyone is doing for our family....I know God is proud.
God Bless You-
Alison
Sunday, September 01, 2002 at 05:44 PM (CDT)
Hello to everyone-
I am trying to update the journal more frequently. First of all, on Thursday, we went to the clinic to start the 4 drug induction that we did almost 2 years ago. She had a very good response the first time but we know this time could be different. After all the chemo she has had, the doctors feel that her cancer could be resistant. Time will tell....in the meantime....we are in full blown CELEBRATION of LIFE!!!!! We have so many things to be thankful for.
She started the prednisone on Thursday so she is eating a great deal and the mood swings are scary sometimes but we know that it is just the effects of the medicine. We have seen the PMS premonition. YIKES!!!!! On Thursday they also found 2 blasts in her blood. It was scary that it had already spilled over to the peripheral blood, this is NEVER good. On Friday we went back for more chemo and for another checkup. She has been in a great deal of pain from a rip-roaring Urinary Tract infection this week. Of all things.....she could have done without this! It was resistant to the antibiotic she was on (sound familiar?) so they had to change it. Finally she was getting pain relief on Friday. We are hoping and praying that since there were NO blasts in the CBC on Friday, this is possibly a good sign. I should say, at least the count did not go up, which easily could have happened and we were expecting.
Some other great news is that my sister, Stephanie, and her daughter Sidonia, came to visit for the weekend. Alexandria was SO sad when she did not get to see her cousin last time because she was in the hospital. They are enjoying eachother immensely (in between Alexandria's naps).
The other most wonderful new is that at our church service this morning it was Communion Sunday. Grant and I took communion with our children, my sister, my niece, and our neighbors and friends who have been SO supportive in the last few months the Whalen's and the Cole's. Then, our pastor asked our family to come up to the front of the church. Everyone clapped for Alexandria and were so glad to see her in church after not being able to attend for so long. Everyone held their hands in the air in the direction of Alexandria and we all prayed together to rid Alexandria's body of this cancer. Several members of the church laid hands on her as we prayed. I could feel the power of God in each and every prayer and each and every person in that church. It was unbelievable. I felt so comforted, so moved by this act. Thank you and God Bless our pastors for doing such a wonderful thing for Alexandria. I cried and cried. Before the service, I had told her what we were going to do, and her words were "Wow, I guess everyone will know who I am after this service." I had to laugh at that one. Dardenne Presbyterian Church (our church) has a Hope and Healing Service the first Weds. of the month at 5:15. The elders will lay hands on her and annoint her with oil. This will be just in time for the events of Thursday, in which she have a Bone Marrow aspiration and we should find out the preliminary results of whether or not this chemo is getting us back where we need to be. If we do not get a good initial response, we will need to move on to the experimental drugs quickly. Please pray extra hard for her this week. We invite anyone who lives in the area to attend the service on Wednesday. It would mean a great deal to us, and to her. I will keep you posted. We are doing all of the chemo this week outpatient. (Thanks be to God for that too!!)
Thank you to each and every one of you who visit her website, pass it along to others, leave messages so we know you visited, put her on church prayer lists, are helping our family with childcare....the list goes on and on. It is this support system and group of caring people who are carrying us through this ordeal, and of course, God our Father.
God Bless You All-
Alison
Wednesday, August 28, 2002 at 09:12 PM (CDT)
I just came inside from a wonderful celebration that my neighbors had. A pizza party!!! (Thank YOU Chris and Cheryl and Tracy and Everyone who came!!!) We all enjoyed ourselves so much......especially Alexandria. We are very comforted by the constant caring and giving of our new neighbors and friends. The compassion they have shown for our family is immeasurable and I do not know what I would do without them. Given the recent turn of events everyone wanted to see and spend time with Alexandria. To say that this week has been beyond my imagination of pain and sadness would be an understatment. Unfortunately, the Bone Marrow Aspiration done on Monday revealed a leukemic load of 30%. This is way far above the 5% or less we were looking for to go immediately to transplant. Despite what many experts say and feel, Grant and I will remain hopeful, faithful and trusting in God until the end. Our odds are not good at this point. It would be almost a miracle to get her back into remission and then to transplant. But I believe in miracles.....they happen all the time. We all have to keep believing and hoping and faithfully praying that God will save her. I know He can. Please put her on every prayer chain, church prayer chain anything you can think of .......we need EVERY prayer at this point. When they told us the news on Monday, Grant and I were devastated. It is so hard to hear the things the doctors are telling you and believe that it is even happening to you/your child. Of course, when they are talking about "Phase 2" trials and "experimental" drugs to save her life, we were in disbelief. How could this be???? They told us many times that they get kids into 2nd remissions all the time. Well, apparently, this time is different. They had to wait so long for the infections to clear and her counts to come back up, that in the mean time, her leukemia has come back too. I just cannot even imagine my life without this precious child. This child that has fought harder than I could even imagine and more than I ever could, losing this battle......I cannot even go there. It is just not fair. She has had the best attitude, been SO positive, and I am SO proud of her. On the way home from clinic on Monday, in the midst of heavy traffic, the clouds were forming overhead. The rain began. It would pour down rain...stop.......pour...stop, etc. I felt it was so symobolic of the last two years of our lives. As I was sitting next to her in the car..(thanking God that I had my sunglasses on so that she could not see my tears), I just watched her, held her hand and just tried to soak her up and enjoy every single second of that journey. I secretly prayed "Dear Lord, please, please let me see a rainbow....I need to know that it is going to be okay......I need to see a rainbow.....I need something to go on .......a sign ......hope......please Lord show it to me so I can go on fighting with her and for her. We got out of the car to eat at her favorite restaurant (Red Robin) and do you know that there was a rainbow right there........A FULL rainbow!!!!!!!!! I could not speak. I was in awe of it. The same God that created this beautiful sight, created my beautiful daughter and I know He loves her. I just pray that it is His will that she gets to stay just a while longer with her family here on earth. We have decided to hold off on the experimental drugs they are offering and will try the same re-induction that she did two years ago. Even though she responded well then, they say that her body has seen so much more chemo and that it is probably chemo resistant at this point. Please pray for our family. I cannot express deeply enough the pain and anguish we are experiencing. We will start the re-induction tomorrow. (thurs 8/29/02) Your/our prayers have worked in the past and pulled her through on several occasions and I know it can happen again. With 3 siblings that are perfect matches, it is inconceivable to us that we may never get to use their precious gift of life. In the mean time, we will celebrate every day with her as a gift from God.
We love you all-
Alison
Wednesday, August 14, 2002 at 01:17 PM (CDT)
WE ARE AT HOME!!!!!!!!!!!! YEAH!!!!!!!!!!!! We are all so happy and most of all Alexandria. She said that it felt SO good to be in her own fluffy bed, with no beeping, buzzing, machines, pumps, I.V. poles, vital signs being taken, etc. We all slept under one roof and it was such a wonderful feeling. They came into our hospital room yesterday and said we could go home. That excitement was quickly replaced by another setback when they said that her potassium was really high. (Potassium regulates your heart function/conductivity.) They think it was elevated from her TPN (I.V. nutrition) and she could not leave until they got it under control. So, several bags of fluids and a dose of Lasix later, we were out the door. We got home and quickly had to get ready to go to Hunter and Hayden's "Open House" at their new school. Crossroads is a brand new school that just finished construction. It is so nice and the kids are very excited about it. Their teachers seem to be understanding of our situation. One of the boys will have to miss some school to be Alexandria's donor.
We just received a phone call from Debbie, our Pediatric Nurse Practioner. She said that the Bone Marrow Aspiration that they did on Monday did not have enough cells to accurately evaluate. So, we do not know who is living on "Bone Marrow Avenue," tax paying citizens (good cells) or "hooligans" (bad cells/blasts) as Grant calls them. So, they will need to repeat the Bone Marrow Aspiration on Monday August, 26th. At this point the bone marrow will have recovered better and it will be a more accurate picture of what is going on. I think that many of the doctors are leaning toward taking her to transplant vs. doing another round of this toxic chemo. We certainly would not want to lose her to an infection before we even have a chance to get to BMT. The saga continues......
I was able to go to church on Sunday. It was one of those "this sermon was written for me" sermons. It was entitled "So Why Thorns?" We are always quick to thank God for all the blessings in our life, but do we ever thank God for the thorns in our life? Well, my daughter battling cancer for two years now is definitely a thorn in my life. I can honestly say that I had not yet thanked God for it. Someday I will see the big picture. I will understand it all with perfect clarity. I hope that through these many thorns in me, a rose is presenting itself. It is making me a better Christian, a better mom, a better person in general. It has forever changed how I view the world and view my priorities. I think that these days people are so focused on getting ahead in their careers, having their kids involved in many activities, etc., that we sometimes lose sight of the very basic and fundamental meaning of life and what God wants for us.
Here is the prayer of confession:
Ever-present God, when thorns in the flesh and in the spirit hurt and nothing we can do stops the pain, we quickly cry out to summon you. We confess how frightened we can become. Forgive us for failing to remember that you are with us in Christ Jesus, able to still our fears even today. Only in retrospect do we see that faith in ourselves falls short and that only faith in You can really sustain us. Only in retrospect do we thank you for the difficulties that test our utter dependence on your grace. How we need forgiveness and wisdom, patience and trust. Speak your peace to our hearts, we pray in Jesus name. WOW!!!!! How powerful is that??
Thanks to all of the people who have left me recent e-mails offering to help out in many various ways. We really appreciate everything everyone is offering and doing.
We will keep you posted as new events unfold.
Just got a call from the lab...... ANC 200!!!!!!!!!!!!!!!!
whoo hooo....God is Good!!!!
love-Alison
Monday, August 12, 2002 at 09:17 PM (CDT)
I must say that my emotions in the last few days have closely resembled Alexandria's ANC. Down, down, down, up, down, up, down, up............you get the idea. Her ANC has been 60, 132, 64, 32 and is now hovering in the 60's range. Well, at least it is not zero.
They did a Bone Marrow Aspiration and bone biopsy today. I think a wore a hole in the tile floor from pacing. Grant and I kept telling eachother, whatever the results.....we will deal with it, just like we have dealt with everything else in the past. (This was actually of no comfort whatsoever, but it did help pass the time!) Anyways, Debbie, our PNP, and Dr. Wilson came to tell us the news of the "PRELIMINARY" results (not actual/definitive lab results.....they will be back late Wednesday). They only see 2% blasts now.(down from 10%) Grant and I were shocked as by now, I think we have subconciously decided to expect the worst and if it turns out any better it is just a bonus. I know that is horrible to admit but we have been through so much that you just have to be realistic. I could have shouted from the roof top of Children's Hospital I was so happy. We have also learned that you have to cautiously celebrate even the smallest of victories. There are many hurdles in this race and we just leaped over one of them. Dr. Wilson felt like by looking at her bone marrow that her counts would probably not come back for another week. He did see good things brewing (good white blood cells, baby red blood cells) and felt like this infection coupled with intense chemo just took its toll and therefore is taking more time to come back. So, the official results will be in on Wednesday. All the doctors will sit down on Thursday and decide based on this last round of chemo, the benefits (getting her closer to remission) and the downfalls....toxcicity, infections, taking her to the brink, how we should proceed. The options are to give her another round of the last chemo but a modified dose, and duration of the chemo. Or, to proceed directly to BMT. I am sure that will be a very interesting conversation and I am anxious to hear what their opinions are. You may be thinking, if she is at 2% why wouldn't you go straight to BMT? Two reasons, 1) her cancer is a very aggressive kind and the possibilities that that % could increase in the time it takes to get to transplant. 2) Several docs from around the country have told us that you need to be in a complete remission (zero or 1% blasts max). This way the bone marrow of one of the boys will have less work to do. So, I am scared to give her another round and I am scared not to.
The other GREAT news is that he said he thought that we could go home in the next day or so!!!!!!!!!!!!YEAH!!!! I have not told her and won't until it is a "go." She is SO anxious to get home.......we all are. This has been the longest in-patient stay so far.
Please keep up the prayers, we need them and they are working!!!! Thank you to everyone who is doing so much to help us. Thank you to my sisters and mom who have come in town to watch the kids. Thanks to my neighbors for also watching the other children, meals, goodies for all of the kids and mowing our lawn every week!!!! Thanks to everyone who has e-mailed us or left a journal entry. I cannot tell what all these things mean to us. We love you guys!!!
Love and God Bless!!
Alison
Thursday, August 08, 2002 at 11:27 AM (CDT)
I know that most of you are in disbelief that I am updating the website so frequently. I just want people to know what is going on so that they can pray for Alexandria. We know that God has listened to all of our prayers for her in the past and we know He is still listening.
Well, we had an ANC of 66 yesterday. But, I did not get excited (or post it on the website) because I had a feeling it was short-lived. Today it was ZERO again. I cannot even put into words the continual range of emotions that Grant and I feel on a daily basis. It sometimes just gets overwhelming. It is one step forward, 2 steps back. I usually try to think so positive but I just am a little sad today. Sad that she has been here so long...(almost 3 weeks)..sad that she should be outside, enjoying a summer break from school, not spending it all in the hospital. So much has happened since July 11th to our family and several families close to us. I think it would be nice for our family to have time together. I miss the other kids so much. Addison turned 3 on Sunday and Grant could not even be with her. You feel so torn sometimes on where it is more important to be. Today is DAY 27 with no ANC (immune system) and it is really starting to scare Grant and I. Especially with there being 10% of blasts still in her bone marrow.....if we don't give the next round of chemo soon enough, the aggressive form of leukemia she has could come back gangbusters. However, if they give her more chemo without the staph/pneumonia being completely cleared, it could kill her as well. I am tired of being stuck between a rock and a hard place. Why can't anything be easy???? With 3 sibling perfect HLA matches it is hard to ignore the facts. I feel almost like we should have gone to transplant initially, instead of waiting for her to relapse. Maybe she would not be in this predicament. But who has the crystal ball???
So many families have come and gone since we have been here. Bummer!!!!! Anyways, please keep Alexandria in your prayers, we love you all and thanks for continuing to be there for us.
love and God Bless-
Alison
Tuesday, August 06, 2002 at 08:01 PM (CDT)
HAPPY 9th BIRTHDAY ALEXANDRIA!!!!!!!!!!
A long time ago, I remember finding out that I was pregnant with you and how excited I was. You would be the first grandchild on my side of the family and the first girl on Grant's side. I remember telling my mom (Nana) and your Granddad Johnny that I was going to have a baby. It was a magical moment that a daughter always dreams of. Sadly, your Granddad Johnny never got to meet you but I know he is looking down on you from heaven and is SO proud!! (I certainly hope he has got some connections up there). I have been thinking about that special day August 6th, 1993, all day. You were/are so sweet and precious. I thank God for each and every day that you are here in my life. I do not know what the future holds but I cherish each and every moment we get to spend together and view it as a gift from God. I love you so much doodlebug. You are the strongest girl I have ever seen and your daddy and I could not be more proud. It breaks my heart to witness all that you have endured in the last few years. I know that if you are that strong, then I must be as well. I am so sorry that you had to be in the hospital for your birthday but it wasn't so bad. So many people sent cards, balloons, stuffed animals and other presents. THANK YOU EVERYONE!!!!!!! It really helped to brighten the day. She had a big beautiful cake decorated with lots of butterflies. Of course, since she has not eaten in more than 2 weeks, she was not interested in the cake.
We still have no ANC..........no immune system.........this is DAY 24!!!!!!!!!!! It is so scary, especially since the longer she goes with no counts....the longer it will put off the next chemo and the BMT. We obviously need to get to BMT as soon as possible. I few people have requested our new address. I had the best intentions of sending out change of address notifications but well.........been a little busy.
NEW ADDRESS:
241 Chestnut Hill Drive
O'Fallon, MO 63366
636-561-8680
Thanks again to all of our neighbors and church members who are watching the other kids so that Grant can get some work done and also visit Alexandria here at the hospital. We really appreciate it greatly!!!!
I believe that some of our neighbors are going to start planning another "Alexandria's Angels Golf Tournament." Anyone interested in helping or volunteering please let me know and I will forward it to them. I think it will be late September, or October.
I will update soon.......God Bless You All-
Alison
Thursday, August 01, 2002 at 07:18 PM (CDT)
Well, we got back the results of last weeks bone biopsy. Alexandria's leukemia in her bone marrow has gone from 94% to 10% with this last round of chemo. This is a GREAT reduction but not a CR (complete remission). So, the plan is to do another round of this last chemo as soon as she recovers from these infections/pneumonia and her immune system returns. Hopefully this will get us to a complete remission so that we can immediately proceed with the BMT. She must be at this stage (complete remission or very close to it to even go to BMT). It is looking like the first or second week of September for transplant. I know you are probably wondering how this child can make it through any more torture on her poor,precious little body. Believe me, Grant and I are wondering the same. She has been through so much and has such a long way to go. She has been too close to death on too many occasions. To hear her moaning and struggling to breathe these last weeks is much for me to bear. She has felt so incredibly miserable. It is so hard to fathom that she more than likely got this staph infection from the hospital. This staph is notorious for being found and spread through hospitals. She could have gotten it at any time when she has been here but it wasn't until her counts went back to zero that the bacteria had a chance to grow and get into her blood and spread to her lungs. YUCK!!!!!
I am praying still that she can leave before her 9th birthday on August 6th. She is going to be bummed if she has to be here. The surgeons put in a new broviac catheter in her chest yesterday. THANK GOODNESS!!! She had been poked more than a pin cushion and she was black and blue from "sticks." Now they can give her TPN (nutrition) since she has not eaten for almost 2 weeks.
They could not give it before in a peripheral line. It was hard to get all of her meds in her during the day with only one line.
Her spirits have been lifted since she began to feel a little better. YEAH!!! She is always SO positive that I get really nervous when I see her down. If anyone would like to send her a picture or homemade card, she would LOVE it. It really brightens her day.
Her fevers are persisting so they are monitoring her very closely. Please continue to pray for her as we are not out of the woods yet.
Monday, July 29, 2002 at 09:11 PM (CDT)
Okay, I just spent two hours (on and off) updating the website and it did not load up. FRUSTRATING!!!!!!!!!
I'll try to remember what I wrote, even though the brain cells are limited. Thanks to everyone who has been praying. God has answered our prayers once again and I believe although we still have a ways to go, she has turned the corner towards recovery.
She had her broviac catheter taken out on Thursday to hopefully stop the high fevers and infection from "re-seeding". She will get a temporary line placed in tomorrow since she has shot all of her veins. They are hoping to get her very low platelets high enough to do the procedure so that she will not bleed out.
It has been a long, scary, and uncertain week, but thankfully God has answered out prayers again. Amazingly, Grant and my initial concern was a hopeful remission and successful BMT. Little did we know at the time that she would have a grade 4 staph infection with pneumonia to boot. She is one strong little girl and Grant and I are so proud of her. She desperatley wants to get home for her 9th birthday next Tuesday, August 6th.
I would like to thank our former church, St. Mark Presbyterian for having "Alexandria Day" at Vacation Bible School. The kids made her cards and prayed for her. They showed her picture up on the big screen. She thought this was really special. One child gave her his allowance and another girl gave Alexandria her tooth fairy money. What wonderful and thoughtful kids. A friend of hers, Kailie, who also has leukemia, sent her a black lab stuffed animal. Even though she has her own battles to fight, she was thinking of Alexandria. Our new church, Dardenne Presbyterian has much of the congregation praying and offering to help in various ways. Her VBS class sent her a package last week too. It is times like these that Grant and I feel so comforted by the many prayers and outpouring of support for our family.
Thank you all for everything, I'll try to keep the updates coming.
love-
Alison
Wednesday, July 24, 2002 at 09:06 PM (CDT)
I apologize for the delay in the update, as I know many of you have been checking in. I will try to briefly recount the past week and a half.....which seems like an eternity. I frequently lose track of the days.
As Grant stated before, on 7/11/02 during a routine spinal tap, the doctors found her bone marrow to be 94% packed with leukemic cells (blasts). She was admitted to the hospital immediately, and started chemo the next morning to try and get her back into remission so that we can proceed to a Bone Marrow Transplant (BMT). She will need at least two rounds of this intense chemo and will get Total Body Irradiation before this can even occur. We are still waiting for final blood tests to decide who will be the best match for her but I think they are leaning towards one of the boys since they are bigger.
So, last Thursday we got to go home but this would be a only a short stay. Saturday night/Sunday early a.m. I had taken Alexandria's temp several times knowing that her ANC (absolute neutrophil count) (the bodies ability to fight infection) was zero, and that she may develop a fever. Sunday at 6:00 a.m. she woke me up to tell me that she did not feel right. I took her temp again, but this time she had a fever...102.5. Grant jumped in the car and took her to the hospital.
Since Sunday, things have been absolutely crazy. First, on Monday morning we found out that she had a staph infection in her blood which is dangerous, especially with no immune system to help fight it. Her temperature, even with the most potent antibiotics available, has jumped around from 102 to 105+ since then. The next day we found out that it is even more dangerous because it is resistant to some antibiotics commonly used to treat this type of infection. Last night, Alexandria told us that her chest had a sharp pain in it. It was even worse when she coughed. The cough that she had was progressively getting worse each day. She is so in-tune with her body, especially for an 8 year old. They decided to do a CT scan today to see what was causing the pain and guess what.....pneumonia. Okay, now she REALLY did not need this one. Today she had x-rays, 2 ct scans, and an ekg of her heart. She was exhausted by the time we were through. She then needed a little oxygen because it was a little harder to breathe. To say that she has felt absolutely MISERABLE would be an understatment. She has been through SO much, I honestly do not know where she gets her mental strength. Her cousins are in town and she is so sad that she is stuck at the hospital when they are at home playing. I believe we will be here for awhile 1-2 weeks getting antibiotics, and getting her counts back up, then we will start all over again with the same round of chemo.
This is so incredibly difficult for our family to be apart for long stretches of time. The kids miss eachother and I miss the kids so much. I have not been home since Sunday. I just could not bear to leave Alexandria when I know she needs me. I thought I would go home tomorrow but those plans changed when the docs rounded this evening. They said that since she was having persistent fevers, and that they felt her catheter (central line into the heart) was a source of the problem with the bacteria, and that they needed to remove the line from her chest as soon as tomorrow. WOW, what a day/two weeks this has been. Things just have to get better from here, right?????????
On an even more tragic and upsetting note, a wonderful friend of mine lost her son to leukemia on Monday, July 22nd. Matthew Hallemeier was a 16 year old who was 66 days post BMT. My heart aches for this family. Please say a prayer for strength and comfort in the coming days for the entire family.
Well, Alexandria just fell asleep and for a brief moment, there are no alarms sounding or pumps (she has four) beeping and we have yet another big day tomorrow. So, I better make my way over to the "window seat" bed.....this will not last long.
Thank you to all of my family, friends, neighbors and church memebers who have pitched in so much in these last couple of weeks. We could not have done it without you and sincerely appreciate all that you have done. Thank you for all the kind gifts and cards for her. It really lifts her spirits to hear from everyone by e-mail or on the website so........please write in the journal to let us know you were here.
God Bless You All-
Alison
Sunday, July 14, 2002 at 08:38 PM (CDT)
Last Thursday night was magic. Alison, in an effort give the children something to do while I was away on an up-coming business trip, brought home one of those pre-cut, assembly-required backyard swingsets. As you might expect, the swingset came in two monstrous boxes. While I did my best to get it put together, Hunter and Hayden did not fail to see the potential of those boxes as a magnificent backyard slide. Before long, Alexandria and Addison joined the fun. We taped the lengths of cardboard together with some trusty duct tape (completely abandoning the task at hand, i.e. the swingset, in favor of the unfolding spectacle) and lashed on a few wardrobe boxes sitting in the basement to make it even longer. From 8:30PM until 10:30PM, Alexandria, Hunter, Hayden and Addison squealed and screamed and slid up and down that make-shift slide. Upside-down, belly-first, head-first, on cardboard "snowboards" and on their bottoms, they shot down that little hill and clamored back up to do it again. By 10:30PM they were all covered in sweat from the effort and completely exhausted. We then went in for bed: the children dreaming of their best "run," and Alison and I pleased at witnessing the collective "great fit of mirth" our accidental corrugated luge track had occasioned.
The next day, Alexandria had a routine visit to the clinic for chemo and a lumbar puncture(LP). Unfortunately, with her hemaglobin and platlets dropping rather inexplicably, the clinic thought it would be prudent to do a bone marrow aspiration (BMA) along with the LP. The BMA came back positive for a relapse. After around twenty months of hard chemo, she has relapsed.
They admitted her to the hospital on Friday, that same day, and began administering more chemo to get her into a second remission. She will be in the hospital for the next six days getting some potent chemo. They will release her for two weeks and then re-check her with another BMA. It will likely take several "pulses" of this harsh chemo to put her back into remission. When (not if) they get her into a seceond remission, they will then admit her again for final conditioning before one of our other children-- hopefully, prayerfully-- give her the gift of life: a successful bone marrow transplant.
Right now, from our perspective, there is far more heat than light. As this shock and sadness fades and is replaced by knowlege and understanding, we will write more. Please pray for Alexandria and for the many, many people who daily need some clarity and focus in what appears to be a murky future.
Sunday, June 09, 2002 at 10:06 PM (CDT)
Hello Everyone-
GUESS WHAT?????????
It only took a year but WE HAVE NEW PICTURES AS OF JUNE 2002!!!!!!!!
Once again I must apologize for the long period of time between updates. As you know, we recently moved and things have been crazy. On moving day, amidst a sea of boxes and movers, we got a call from the oncology clinic saying that the last bone marrow aspiration they had sent to St. Judes came back that she had relapsed. They wanted to do a repeat bone marrow aspiration ASAP to confirm St. Judes report. The doctors from Children's were convinced that she probably had relapsed they were just hoping they had caught it quickly. After one LONG week of nervousness, anticipation and horror, we received the results back. The repeat test said that she had not relapsed and that she was still in complete remission. How's that for conflicting reports????????? They were two different tests but the one that St. Judes did is supposed to be more accurate/sensitive. Children's decided not to do a Bone Marrow transplant based on the results of their test. Well, as you can imagine, this has left Grant and I even more confused than ever before. We are really not sure which test to believe in. Believe me, we are doing alot of praying that she is still in remission and that the chemo continues to fight those cancer cells.
Grant finished another semester of school and we were both relieved to have the first year over with. Grant won a sales contest through work and so we got to go to Aruba for a week. (Just the two of us......have not done that for FIVE YEARS!!!!!!!!!!) We thoroughly enjoyed each and every moment of it (well....after day 3 at least I could finally relax and not feel like I was accidentally leaving a child behind somewhere). It was SO hard to leave the kids but Grant and I very much needed to get away by ourselves and would never had done it on our own. Another big thanks to Memaw and Pawpaw (Grant's parents) for taking such great care of the kids while we were gone.......we could not have done it without you!!! They even took Alexandria to get her chemo.....We love you guys!!!
Last week we went to Destin with my sister and her family. We had the absolute best time. It is so wonderful to be at the beach. I feel so at peace and close to God there. Alexandria had a ball and didn't want to come home except she was missing her new friends that she has made in our new neighborhood. The parents and kids here are wonderful and Grant and I truly appreciate how quickly they have made us feel welcome. Alexandria has even taken up a new sport of scootering. (against her parents better judgment, but whatever). She has however, developed what her doctors have termed as "scooterfoot." The vincristine chemo she received has caused some nerve damage and after riding around on the scooter and using those ligaments that she has not used in awhile, she was VERY sore. Needless to say, she has been taking it a bit easier lately. She has had a great deal of energy and has generally been feeling well. Praise God!!!!!
Thank you for continuing to check in on us. It means a great deal that you are concerned about Alexandria and her well being.
It is with great sadness that I share with you that our friends whose son Matthew who had a Bone Marrow Transplant just two months ago, has relapsed again. Unfortunately, there are no safe options for Matthew and they will be bringing him home soon on hospice. Please pray for this family as they need each and every prayer.
God Bless You All-
Alison
Monday, March 25, 2002 at 08:56 AM (CST)
Hello to everyone-
Did I say I was going to get better about writing on her website? Well, I must not have anticipated how crazy things were going to be with Grant back in law school at night, Grant traveling a great deal with his job, moving to another house in O'Fallon (Winghaven), etc, etc!!!!!!!!!! That is right we sold our house here in Ellisville quickly and bought a house in a neighborhood with lots of activities for the kids (and Grant and I)......golf course/country club, swimming pool, tennis courts, playgrounds, shopping, and a brand new elementary school that is actually in the neighborhood opens this fall. Alexandria had decided that she did not want to go back to her current school because "everyone there knew she had cancer." So, seeing that we all would do anything for our children, Grant and I set out to find a new home. It won't be easy on any of us to move as we all love our friends and neighbors here in Autumn View. Everyone has been so good to us this last year, so helpful and understanding of our situation....some of you even giving your own platelets when Alexandria needed them. So many of you have shown us new meaning to the words "giving of oneself." Autumn View friends will hold a special place in our hearts, could never be replaced and will never be forgotten. Thanks for all that you have done for us and remember that we are only 20 minutes away....please come visit!
Alexandria is doing pretty good on her treatment. One of the chemo drugs causes a great deal of leg pain and nerve damage making it hard to walk. (drop foot) So we will start physical therapy soon for that. Her chemo is getting less dosage wise and therefore her counts are not expected to drop so dramatically. This is GREAT!!!! It is when her counts drop to zero that we become so concerned about infection. We recently passed our half-way mark. Can you believe it? Part of me thinks, wow, we've come a Long way....then I realize we still have a LONG way to go. Her spirits remain high although she was down a few weeks ago as she started to lose some hair again. I think it is harder emotionally to lose it the second time. Even though the chemo is a little less, it is the new combination that is causing the hair loss. Hopefully it will all come back before the fall. If not, I am sure she'll handle with the same positive attitude she has in the past. We'll better go......boxes to pack.
Our new address as of April 11th-
241 Chestnut Hill Drive
O'Fallon, MO 63366
I'll post the new phone number as soon as I get it.
Our friend Matthew H. is at Children's Hospital as I write this message. He is supposed to get a BMT (bone marrow transplant) on Wednesday, March 26th from a matched unrelated donor. He was on the same protocol Alexandria is on and he relapsed in December. His 16th Birthday is March 29th. This is no way to spend your 16th birthday and our hearts ache for this family and everything they have been through. Please say an extra prayer for Matthew and his family that the BMT is a success and that Matthew is fully healed and cured of this dreadful disease. Thank you for any and all prayers. If you would like to leave him an encouraging message to lift his spirits, his website is:
www.caringbridge.com/mo/matthall
Saturday, January 05, 2002 at 04:09 PM (CST)
Hello everyone-
I know , I know it has been an extremely long time since you have seen an update from me. Actually, in November I spent about two hours updating the journal and I looked the next day and it was not there. I just have not had the time or the energy to re-update. So I do apologize, but hopefully everyone understands. It is one of my resolutions to update more frequently.
Things have been going as well as can be expected in this situation. We have had several in-patient stays since I last wrote. They have all been from fever with neutropenia (low counts) but they have not been serious thank goodness.
We had a wonderful Thanksgiving with much to be thankful for. My sisters and their families came in from Denver and Mississippi and it was so nice to spend time with family. The cousins love to play with eachother and it is always a treat for them to get to spend time with one another. We were all very close before this happened, but this past year has just increased the love, friendship and sisterly bond. I do not know what I would do without them!
Alexandria was in-patient a few days before Christmas and we were concerned that she would be there for the holidays. (We were there last year for Christmas Eve and part of Christmas day with her strange paralysis and slurred speech) We were SO thankful when we got to bring her home the night before Christmas Eve this year. Her counts bounced back up and we left Monday a.m. to drive to Mississippi to visit with my sister Stephanie and her family. We were there for about a week and had a great time.
Alexandria continues to do well with the chemotherapy and we are again thankful. She seems to take it all in stride which has been one of the biggest blessings I believe. She views cancer as just part of her life and something she has to do, but it does not seem to phase her too much. She amazes me. I can imagine that I would be SO cranky, irratible and generally angry if this was me fighting the battle. She has a very positive outlook and attitude. It makes me realize that if she can do this, what do I EVER have to complain about! She is truly an inspiration to me.
We have learned from some good friends of ours , whose son is on the same very high risk protocol as Alexandria and is at Children's Hospital as well, that he has relapsed on treatment. It is never good to relapse on treatment....especially when you are getting as much chemo as these kids are getting. He is about 9 months further along in the protocol than she is. They are praying for a sibling match so they can do a bone marrow transplant on him. Please keep this family in your prayers as this is a particularly rough time for them. It is also scary for Grant and I to think they we may be staring at our own future. It is almost impossible to fathom this, but we know that it is a very strong possibilty for Alexandria as well. We will keep praying for a cure so that no child will have to suffer what these kids have had to.
I hope that this update finds you all happy and healthy and enjoying the new year-
God Bless- Alison
Monday, September 17, 2001 at 11:04 PM (CDT)
Dear friends and family-
I apologize for not writing sooner but things have been so crazy this last month that I have not had the opportunity to write.
We went to Destin with my sister and her family in August and had a wonderful time. Besides Grant and Hunter almost being eaten by a bull shark, it was a very relaxing and enjoyable time away from the hospital, chemo and cancer. The shark was about 6-8 feet long and about 15 feet away from them. It was chasing another fish (for its dinner) and thank goodness it did not attack big daddy rabbit. Although Hunter would have been a tasty appetizer and Grant a delicious main course, the shark pursued the fish instead of them. Unfortunately, Grant did not leave the waters when everyone on shore was screaming "Get out of the water", which sent me screaming and yelling down the beach (this was quite a sight I must admit). We had to leave the beach early the day before because of storms, so when I heard everyone shouting I thought someone had seen lightening. Little did I know at the time, "Jaws" was drawing closer and closer to my husband and son. Hunter was closer to shore and Grant was less than waist deep. Grant said that he was afraid to move for fear that quick movements would draw attention to him and so he elected to stay put.(Absolutely CRAZY, in my opinion.) Needless to say, after they both were safe on the beach, we quickly elected to head for the pool.
After many sleepless nights, much discussion and many prayers, Grant and I decided to send Alexandria back to school this year. Unfortunately, after only a week, we began to second-guess this decision. The first week of school was very difficult on her physically and horrible for me emotionally. I spent a great deal of my time crying, praying and asking "Are we doing what is best for Alexandria?" Her chemotherapy will remain so intense that her counts and ability to fight infection is still so compromised, that she probably would be in the hospital a great deal more. As psychologically beneficial as going back to school would be for her, physically, it would be too detrimental. The scale was just too swayed in favor of keeping her at home for so many reasons. Therefore, Grant and I spoke with the principal, counselor, and her teacher about her attending at a later time when she is better able to handle it. For various reasons, we feel that homeschooling is the best option for her and myself right now. So, along with my Ph.D in leukemia, nursing and psychology I have elected to become an elementary school teacher as well. I have done a great deal of research in a short period of time and have chosen a curriculum that I think will benefit Alexandria and give her a good educational experience. Green Pines school has been supportive of our efforts and it is greatly appreciated. We intend to keep in close contact with her school and classmates so that when she is able, she may return seamlessly.
The Ice Cream Social held on August 19th, at St. Mark Presbyterian Church was a huge success. Alexandria, as well as the entire Haddock family, is indebted to all those who helped put the event together, worked at the event or attended. It was such a comforting feeling to know that so many of you have been praying for her and supporting our family during the last 10 months. She was absolutely overwhelmed at the sight of all of you there. She asked me "Mommy are all these people here for me?" It was so nice to see so many of you that we have not seen for so long. Please know that your generous donations are greatly appreciated and that you made a positive difference in the life of an eight year old girl. A sincere and heart felt thank you to Becky Eggman, Lisa Williams and Kathleen Maas-Stokes and all of the other volunteers for all the hard work and dedication in pulling off this fundraiser. Thank you to Schnucks for donating the food as well.
As if our lives were not busy and crazy enough, Alexandria wanted to seal the deal. Her best friend Abby was here last Thursday and they decided to listen to music and do some dancing. (to Brittney Spears no doubt - but we are trying to keep a lid on that one!) I am not sure what type of dancing they were doing but Alexandria broke a bone in her foot doing it. I could not believe it!! We took her to get an
x-ray and they said it was probably a bad sprain. The radiologist called the next day to say that it WAS broken. She now has a cast on her foot. LOVELY, huh? Oh well. The saddest part of the whole thing is that Grant and I were hardly phased by these events. We said "hey it's a bone , we can fix that one!" Her bones may be somewhat weaker due to high-dose steroids and that coupled with low counts, could certainly take longer for it to heal.
She received Ara-C last week and today we are day 10 post Ara-C. Given her history with this particular chemo, again, we are extremely nervous and the thermometer will be getting good usage. Her counts today were very low and she will need platelets tomorrow. The doctors want to make sure that she keeps her platelets strong for risk of hemorrage with this broken bone. So, it is off to clinic tomorrow for that and hopefully a consultation with a pediatric orthopedic doctor.
UPCOMING EVENTS:
September is Childhood Cancer Awareness Month.
The Haddock Family will be attending "LIGHT THE NIGHT" sponsored by The Leukemia and Lymphoma Society of St. Louis. It is a nationwide event to celebrate and commemorate lives touched by cancer. It will be held on Friday, September 21st at 7:00 p.m. at Forest Park. Walkers carry illuminated balloons: red for participants, white for cancer survivors. You can bet that Alexandria Nicole Haddock will be there, proudly displaying her white balloon. (Unfortunately, it will be tied to her wheel chair instead of her arm due to her broken foot!) If anyone would like to join us for a night of music, many kid-friendly activities, and the satisfaction that comes from helping to save those affected by cancer, please give us a call, we would love to have you!
As we approach the one week marker of the tragic events that unfolded before our country last Tuesday, September 11th, please take this moment to pray.
Dear Lord-
Our nation suffered a great tragedy last week. It is devastating to see this destruction and lack of respect for human life. We look to you for guidance and wisdom at this time. We have not lost faith in you, for this was not your act: it was evil and love conquers evil. Please watch over those who are still working diligently to rescue others. Give their bodies and minds strength to endure what their eyes see. Bless and give wisdom to those of authority making decisions about our country's response. We have united as a nation; a family that will stand strong and proud on the foundation it was created on. Lord, we know that you welcomed many into your kingdom last week, but please console and comfort the families and friends that lost loved ones. Give them strength to make it through the day. Instill in each and every one of us Hope. Hope of better days ahead. We ask these things in your name, Amen.
God Bless You All-
Alison
Monday, August 06, 2001 at 09:37 AM (CDT)
My dearest and most precious Alexandria-
I am so amazed as I watched you sleeping this morning at how much you have been through in the last 9 months. You have been so strong and so brave. Eight years ago today, August 6th 1993, God blessed me with the birth of a beautiful baby girl and I have been thankful for that gift each and every day since then. I cannot believe you are eight years old! The years have flown by. As we celebrated your birthday at your party Saturday, I had to catch myself from crying several times. I was so thankful that we were able to have your party at all due to your hospital visit last week. I was also thankful that you were here to celebrate another year of life. You are such an inspiration to me. You are going to grow up and be able to do anything you set your mind to. Your determination will serve you well. I think through this experience that someday you will be able to help others in trying to cope with cancer. God has a purpose in all of this and it will be revealed to us someday. So many people love you sweetheart and are praying each day that you continue to do so well. We have so many angels both in heaven and on earth that help us get through each day. Your granddaddy Johnny is looking down from heaven and watching over you too. I bet he is SO proud of you! Keep the faith doodlebug! God and Jesus love you and so do we!!!!
HAPPY 8th BIRTHDAY!!!!!!!!!!!!!!!!!!
Love -
Mommy and Daddy
UPCOMING EVENTS:
Everyone is invited to attend an Ice Cream Social to support Alexandria.
DATE: Sunday, August 19th, 2001
Time: 11:30 a.m.
Place: St. Mark Presbyterian Church
Claymont Drive, Ballwin
A $5.00 donation is appreciated and proceeds will go to the Alexandria's Angels Foundation. It includes hotdog, chips, drink and ice cream. For information or tickets please call
Becky Eggmann at (636)230-7481.
Alexandria is going to be there and would LOVE to see all of the people who have been praying for her and supporting her for so many months!!
Thursday, August 02, 2001 at 04:38 PM (CDT)
Hello Everyone-
I have traded places with dad for the day and he is with Alexandria at the hospital. She is feeling well and has not had a fever since late last night. She is in good spirits. She made up a song last night as I was tucking her in to the tune of "The sun will some out tomorrow." Her version is "My counts will come up tomorrow, but I've got to hang on 'til tomorrow..come what may...when you're stuck with a day at the hospital that's boring, I just stick up my chin and grin and say ...My counts will come up tomorrow, I just have to hang on 'til tomorrow come what may." Is she a trip, or what? Sometimes she just leaves me completely speechless. She is amazing. She looks so cute with her "peach fuzz" and we will post new pictures when Grant gets home so that you all can see it. Her 8th Birthday is on Monday and her birthday party is "Supposed" to be this Saturday. We are doing some serious praying that her counts come up before then and she will be able to leave the hospital and enjoy her party. We are also supposed to go to Destin, Florida with my sister and her family on Monday. She has been told that SHE MUST HAVE A TALK WITH HER COUNTS AND THEY ARE TO COME BACK UP.......NOW!!!!!!!!!! And that was an order direct from mom (who really, really really wants to go to the beach!!!!) Anyways, she just looked at me and said "mommy, I'll do my best." If anyone can do it, she can. This week has been tough. Her blood pressure was 72/36 on Tuesday night and we were very nervous but her blood pressure has stablized since she got platelets and blood yesterday. Thank you all for your prayers. We appreciate each and every one. A special thank you to Judy Vollmayer who came to our house at 1:30 a.m. to be with the kids so that Grant could come to the hospital. Thank goodness God blessed us with great neighbors! Take care and look for birthday pic's soon. Alexandria got a baby kitten for her birthday that she has been begging for for quite some time. Her name is Bailey and our other cat Brittany is not too thrilled about this newcomer. It is a Ragdoll kitten and VERY affectionate which is exactly what Alexandria needs. Especially when she is not feeling good. Bailey just snuggles up to her and it is wonderful.
UPCOMING EVENTS:
There will be a casual lunch/Ice Cream Social for Alexandria's Angels at our church, St.Mark Presbyterian.
Date: Sunday, August 19th, 2001
Time: 11:30 a.m.
There is a $5.00 suggested donation that includes hotdog, chips, ice cream and drink.
Everyone is invited to this event and Alexandria is planning on being there. She would love to see you all there and know that so many people care about her and are supporting her. Thanks for all you do! You are Alexandria's Angels!
For more information or to purchase tickets please contact Becky Eggmann at 636-230-7481. A big "Thank You" to Becky for putting this event together!!
Sincerely -
Alison
Wednesday, August 01, 2001 at 12:39 AM (CDT)
Alexandria spiked a fever this evening (another post-ARA-C fever). Alison is now with her at Children's and I am- Daddy- sending this message to keep everyone informed. Her ANC (ability to fight infection) is close to nothing. A fever and a low ANC are serious and we, therefore, need lots of extra prayers. Please remember Alexandria in the kindest possible terms in your every prayer. As the situation unfolds, either Alison or I will provide updates.
Wednesday, June 20, 2001 at 08:58 PM (CDT)
Hello everyone-
I am so sorry for the delay in this wonderful news but I have not been able to access Alexandria's website for several days. The GREAT news is that on Monday the lab called me to tell me that her ANC (absolute neutrophil count/ability to fight infection) was 2744!!!!!!!! YEAH!!!!!!(should be at least 1500). This was awesome news because she had received the dreaded ARA-C several weeks ago and this is the one that gave her an Alpha-strep infection the only two times she has gotten it. It happened both times when her ANC went to zero. Needless to say when she went to zero at the end of last week, Grant and I were VERY nervous. In fact, because she got SO sick, SO quickly last time and had to be in the ICU for 7 days and in the hospital for another 7 days, with septic shock and respiratory failure, I was taking her temperature constantly all last week. This included all hours of the night. I got up at 12, 2, 4, and 6 a.m. to check her temp. It was a LONG week but WE ALL SURVIVED!!!!!! Do you all detect some enthusiasm? Believe me, we were all singing, dancing and high-fiving on Monday when we got that phone call. Not only did her counts come back but they came back big-time. I was so anxious and a mental wreck last week as many of you can attest to. I think I painted everything but the kitchen sink. I had to keep myself preoccupied in between taking her temp (which was about every hour during the daylight hours). I know you all think that is a bit extreme, but when you almost lose your baby, you will go to the ends of the earth to protect them the next time. We still cannot believe that she did not even get a fever! On Father's Day, (holiday- always a trip to the hospital on a holiday) and a Sunday(almost always admitted to the hospital on a Sunday for fevers) her temperature got up to 99.1 and we were pacing the floors wondering where this was going. Thankfully after several hours, it went back to normal. We worry even at 99.1 because she normally runs so low, 96.5, 97, or 98 degrees. Anyways, thank you all for every single prayer....that is what got us through this. God heard all of our prayers for that precious little girl who has endured so much. We go to clinic tomorrow (Thursday) for a shot of Methotrexate and start a week of oral chemotherapy, 6MP. She felt so good the last couple of days that she even had her best friend Abby Newsham sleep over. You should have seen them singing, dancing, and giggling like little girls should. It warmed my heart to see her have so much fun and feel so normal.
Thanks again everyone, we love you guys!!
-Alison
Sunday, June 17, 2001 at 09:40 PM (CDT)
Dear Daddy -
I know that this is a special Father's Day for you. I know your feelings as a daddy and for me have grown exponentially over the last 7 months. You are such a good daddy. You give me everything I need and so much more. You have the strength for both of us when I have none. You comfort me when I am sad or sick. You are my rock. My hero. You are the knight that rides in on the horse and saves me when all hope is lost. You are my advocate. I know you will always be on and by my side. You are my doctor and nurse and help the boo-boo's go away. You wrap your loving arms around me at times when I need a papa bear hug. You read me Shakespeare even though I gross out about Romeo loving Juliet. You teach me new words all the time because you know that someday I will use them. You build us things like a clubhouse and a playground so that we can enjoy being kids and have fun. You work hard so that we can have many things but more importantly are the lessons you are teaching us every day. Thank you for teaching us that GOD is GOOD and that Jesus and other people love us SO much whether we have hair or not. Thanks for telling me each and every day how much I am loved and how special I am. You are my friend. I am so glad that God chose you to be my daddy......he chose the very best one.
I love you daddy-
Your princess, doodlebug, sweetie pie,
hun-bun, sugar drop, sunshine and pumpkin pie (to name a few)
Alexandria
Sunday, June 03, 2001 at 09:25 PM (CDT)
Hello Everyone-
We arrived home from Alexandria's Wish Trip last Thursday night after seven fun-filled awesome days of fun, laughter and excitement. However, within 24 hours we all came down with colds/flu except for Grant. Thank goodness he stayed well to take care of the rest of us. Alexandria got a fever on Saturday so she and Grant spent the entire day at the ER. They sent her home after giving her antibiotics and said they would call us if anything grew from the cultures. She was not neutropenic (low counts) so that is why she did not have to stay. We assumed she had the same virus that we all had. We were so thankful that we got sick after we got home and not in Orlando.
The trip was absolutely WONDERFUL!!!!!!!!! It was so nice to be a normal family (whatever that is) and not have to worry as much about germs, infections, ANC's and leukemia. It was a refreshing break after the last 6 and a half months that we have been through. Alexandria was treated like a real princess while we were there. We were put at the front of all the lines at all the attractions. She had many character autographs, and got to meet many personally after the shows. The place where we stayed, Give Kids The World, was an absolutely magical place. Everyone there has a child with a life-threatening disease. It was both comforting and sad to look around the room and see so many others going through similiar situations. It was so good for Alexandria to feel so normal around so many kids with no hair and broviac catheters. At Give Kids the World they have an arcade that is free of charge, an ice cream store open all day, a movie theater, a carousel, two pools, a fishing lake, a huge model train room, trains that run around the premises and so much more. She felt great while we were there and the weather cooperated. Although we did have one smokey morning due to the brush fires, they really did not bother us.
On Tuesday, May 29th, I took Alexandria to the clinic for a spinal tap with methotrexate, a bone marrow aspiration, and 3 other kinds of chemotherapy. We were on such a high from the trip, it was difficult to go back to the hospital/clinic. It certainly was a strong dose of reality. It was a long day but she did great.
We go in-patient tomorrow, Monday, June 4th-June 6th for Ara-C. This is the same chemo that she has gotten the bad infection from twice. Needless to say, Grant and I are very nervous about this one. It seems to lower her counts so much that the bacteria in her body has the opportunity to grow. We will be praying heavily that she will be okay as we aren't sure how many times the antibiotics that fight the infection will work.
We will write again soon-
love-
Alison
Wednesday, May 16, 2001 at 10:45 PM (CDT)
Mom:
Alexandria, you just finished 6 months of intense chemotherapy treatments for your leukemia.....gave your parents the scare of their lives on more than one occasion, have been poked more than a pincushion, spent more time in the hospital than out including ALL holidays, gotten over 2300 visits to your website, managed to keep up with your schoolwork, have become an expert Nintendo player, have defied all odds, been such a fighter, made many people believe in miracles, changed the lives of many, and so much more.......................
What do you want to do now????
Alexandria:
I'M GOING TO DISNEYWORLD!!!!!!!!!!
That's right........we just got word that her counts are good enough to travel and so Grant and I are frantically packing away for 6 people to go to Orlando for a week for her "Wish Trip" sponsored by Dream Factory. This will be the vacation of a lifetime as we have so much to celebrate. It has been a long six months with many more to go but this trip will afford us the opportunity to forget about leukemia for awhile and just be a family. We will take lots of pictures and post them when we get home. Please say travel prayers for the safety of our family.
Love to you all-
Alison and Grant
Thursday, April 19, 2001 at 09:17 PM (CDT)
What a week, no two weeks, this has been. So much has happened I do not know where to begin. The basic story is that on Sunday, April 8th, I took Alexandria's temperature and she had a low grade temp. Within two hours, it was 103.7 and we were rushing to Children's Hospital once again. I could tell she was deteriorating quickly. She went from feeling fine to absolutely miserable and hard for her to breathe or even walk in a matter of an hour. They took blood cultures when we got there and did a chest x-ray. We got up to the floor and I tucked her in and learned that her fever was nearing the 105 degrees mark. They could not even use a "tempa dot" they had to use a mercury thermometer. This made me very nervous but I kept thinking that it would probably be like last time and we would be fine. We would just stay here for a week, take antibiotics, clear the infection and go home. Unfortunately, this was not the case. By 2:00 a.m. the cultures had grown bacteria. Not Good!! The quicker they grow, the worse things are. So I knew this would be a battle, but I still had no idea how big of a battle it would actually turn out to be. I stayed up all night praying. The doctors came in early Monday a.m. and said that she had 110 colonies. (She only had 1 colony the last time she had a strep infection.) I asked them how serious she was and they said very serious to critical. I had to quickly sit down because it hit me like a ton of bricks. I knew things could go either way with this one. They said they only see 2 or 3 cases a year that are this bad. Half make it, half do not. (And we just love statistics, remember) The cause of this infection is due to the heavy-dose chemotherapy destroying the lining of her intestines etc, therefore allowing bacteria to get into her bloodstream. Even though we got her in at the first sign of a fever, the bacteria was out of control. She had been feeling great just before bedtime the night before, this was so hard to comprehend.
Grant's parents came over and he quickly got to the hospital. She was having persistent fevers at 105 to 106 degrees, was hallucinating and was really out of it. It just broke Grant's and my heart to watch her and listen to the things she was saying. Several times she looked at me and said, "Mommy I know it's really bad, please pray for me." We would immediately join hands and pray.
They wanted to get her moved to a room that was better equipped to handle her needs with more monitoring, etc. Her respirations were in the 70-80 range and should be about 20. Every breath was a struggle. Her blood pressure was not good either. Grant and I did not sleep one minute but stayed by her side and prayed over her constantly for many days. It appeared on Wednesday that she was doing worse and a repeat x-ray showed that now the infection had gone from her blood to her lungs. Not Good!! We then moved to the PICU. We had always said that if we could avoid the PICU through this thing, we would really be doing good. After being there when she was initially diagnosed for 5 days, we never wanted to see that place again. For several days the x-rays were staying the same or worsening. We just needed a sign that things were going to get better but that sign was not coming and in fact, on Saturday, my birthday, she got even worse. She had been on oxygen for 5 days but she now needed the mask instead of the nose prongs because she was not getting enough. This was very scary. I prayed for a Good Friday miracle and for a birthday miracle and then for an Easter miracle that she would come out of this. Many other things had happened during this time period. Low blood pressure that had to be regulated by medicine, high blood pressure, over-hydration, under-hydration, clotting in her central line (rendering it useless) and the list goes on and on. I could tell the doctors and nurses were very worried and not sure she would pull through. Many nurses up on the floor kept telling me they were all praying for us. I knew it was really bad when our Pediatric Nurse Practioner told us she would pray very hard for us. I am confident they did not have any idea if she could come through all of this. The pain and fear Grant and I felt in those days I hope none of you ever have to endure in your life. We saw several children lose their lives in the PICU. I will never forget the impact of that continous nightmare. It will forever be etched in my memory.
On Easter, after many days of all of you and Grant and I praying constantly, God answered our prayers. Her x-ray had "slightly improved" and she was breathing just a little bit better. Her blood pressure had gotten better and we were able to turn down her oxygen just a little bit. These were the first good signs we had that she would be okay. We knew she was a fighter, but once again she showed us how strong she really is. She has one very special guardian angel too.
She moved back up to 9 west Monday evening and has gotten better each day. She even wanted to play Nintendo yesterday and today. She actually ate today for the first time in a week and a half. However, she has not lost one pound. By Sunday or Monday she will be able to come home. What a homecoming that will be. Thanks be to God. Thanks also to all of you who helped us so much these last two weeks in a variety of ways. Thank you to all of you that prayed for her without fail. We know that your prayers helped us and Alexandria when things looked so bad.
God Bless You All and continue to believe in miracles, they happen every day.
All our love-
Alison, Grant and Alexandria
Sunday, March 25, 2001 at 03:23 PM (CST)
Hello Everyone-
Just wanted to inform anyone who does not already know about the Golf Tournament, or remind those of you that want to play, but have not RSVP'D to Ann Newsham, to please do so. She needs to give the golf course a number of people who are participating. If we do not have enough people, then we will have to cancel. If you need a registration form, e-mail me or Ann and we can get you one. Alexandria will be in the hospital that weekend but one of the grandparents will be with her that Saturday so that Grant and I can both be there at the golf tournament. We hope to see all of you there. I know that Ann needs volunteers to help out with a variety of things so, ladies (or men), if you are not golfers and would like to help out or attend the lunch, please feel free to let one of us know. The particulars are:
What: Alexandria's Angels 1st Annual Golf Tourn.
4 Golfer Scramble with shotgun start
When: Saturday, April 21st, 8:00 a.m.
Where: Incline Village Golf Course, Foristall, MO
(just west of Wentzville)
Cost: 65$ per golfer
12$ lunch only
PRIZES- TROPHEYS -MULLIGANS FOR SALE- -RAFFLE-
And most importantly FUN!!!!!!!!!!!!!!!
Please feel free to invite your friends, all are welcome.
Please contact Ann Newsham 636-458-0676
e-mail address Newsham6@aol.com
or myself, AGHaddock@msn.com
636-405-0780
Thank you all for the tremendous amount of support you all are giving our family. It means so much to us. Alexandria goes in-patient this Thursday, March 29th for the "doozy chemo." This is the one that brings her counts to zero and makes her feel pretty rotten. Say extra prayers, please. God Bless You All- Alison
Friday, March 09, 2001 at 11:34 PM (CST)
My dearest Alexandria-
I know how much you enjoy reading the messages on your website everyday, so I wanted to leave you a special message from me, your mommy. I wanted you to know how proud I am of you. You are the bravest little girl I know. You are my sunshine. You are my life and I do not know what I would do without you. You are my first born. The little girl I hoped and prayed for all of my life. God sent you as a special gift to me. The best gift I had ever been given. You have touched my life in ways that words cannot begin to describe. You are so much like your mommy. Not only do we look so much alike, but in our personalities as well. You are such a fighter but with a big heart. Your strength, will and determination through this battle is something I have never seen before. I am constantly reminded of how precious life is. You are my inspiration....the reason I find strength to keep going. My heart aches to witness what you have endured these last months. It is something a mother hopes her child will never have to go through. You have demonstrated so much faith. You are my hero. I wish all the way to my soul that I could trade places with you and endure the pain myself. I know that as your mommy I am supposed to be teaching you life lessons, but you are the teacher my beautiful child. I am the student and everything I need to know about life and what is important I have learned from you in these last four months. When I grow up doodlebug, I want to be just like you. Always keep the faith and know that God and your family love you so much. You are the wind beneath my wings.
I love you- Mommy
Tuesday, February 27, 2001 at 03:43 PM (CST)
Hello everyone-
Okay, are you all sitting down? Grant and I got a call from our PNP at Children's Hospital this morning. She was calling to report the results of our bone marrow matching tests. Guess what?!!?!!? Incredibly, unbelievably and miraculously, ALL OF THE KIDS MATCH ALEXANDRIA!!!!!!!!! THEY ALL PERFECTLY MATCH EACH OTHER!!!!!!!!!!! Grant and I are in total shock. It is hard to even fathom how this could be. BLESSINGS, BLESSINGS, BLESSINGS!!!! This may be the best news we never have to use, but nonetheless, we have plan B, C, and even D if we need it. This is a very, very, rare occurence and we are so thankful for this news. Please include in your prayers for Alexandria, prayers of thanks to God.
God Bless-
Alison
One joy shatters a hundred griefs.
(Chinese Proverb)
***Thanks so much to all of you who have written journal entries as this is so exciting and encouraging to Alexandria.
Sunday, February 25, 2001 at 06:52 PM (CST)
Happy Sunday Everyone-
Alexandria and I went to Christian singer Cheri Keaggy's concert on Friday night. It was absolutely wonderful!! We got to meet her before the concert and she gave Alexandria an autographed picture. Then Cheri dedicated a song (Alexandria's favorite) to her. She was so excited! I must say that this time Alexandria and I shared, away from hospitals, and the everyday reality of her situation, was so refreshing and I will cherish it forever. It is the first time in so long that she was in public, just being a normal child, enjoying something she absolutely loves... music. I am so thankful to Cheri Keaggy for this opportunity to enjoy an evening with my daughter. Cheri has so many inspirational songs that fill us with hope and encouragement. If you ever have the chance to go to her concerts or listen to her CD's, you will love her music. Thank you all for your very kind journal entries. She is really getting a kick out of seeing the entry # go up every day and hearing all the things that you all have to tell her. Grant and I really appreciate it.
P.S. There is a new picture of Alexandria and Cheri (photo # 2)
Love-Alison
" I believe that friends are quiet angels who lift us to our feet when our wings have trouble"
Source Unknown
Monday, February 19, 2001 at 08:51 PM (CST)
Hello everyone-
I just wanted to let you all know that we received a very special package on Friday. Guess who it was from???? JAY LENO!!! I told Alexandria that she got a package from a famous person and she said "Mommy this is so exciting, this is SO great, wow, I cannot believe it...........who IS Jay Leno????? Grant and I laughed so hard. Anyway, he sent us Tonight Show t-shirts, hats, a picture signed "to Alexandria, your friend, Jay Leno", and the movie "The Grinch" that is not even out on video yet. One of our neighbors knows Jay Leno and he called Ron Howard to get the movie for her. A couple of times during the movie it says "this movie is for Academy Awards presentation only." We were all excited and thankful for the gifts. Just a reminder, please sign in to let us know you were here!!
Love-Alison
P.S. There is a new Valentine photo of Alexandria (2nd picture)
Thursday, February 15, 2001 at 02:33 PM (CST)
What Cancer Cannot Do
Cancer is so limited................
It cannot cripple love
It cannot shatter hope
It cannot corrode faith
It cannot destroy peace
It cannot kill friendship
It cannot suppress memories
It cannot silence courage
It cannot invade the soul
It cannot steal eternal life
It cannot conquer the spirit
- Source unknown-
Monday, February 12, 2001 at 01:34 PM (CST)
Hello Everyone-
Although we were supposed to be in-patient for 5 days, Alexandria did so well on the first 3 days of treatment, we were able to come home on Sunday night. More Blessings!!!! Grant took her back to clinic this a.m. and I will take her back tomorrow a.m. for her treatments, but at least we did not have to stay. I must say that we were pleasantly surprised (and thankful) with the way she was able to handle this treatment. Her counts will be coming down by the end of the week from the chemo and she has two weeks to recover again. I received an e-mail message this week from my/Alexandria's favorite Christian singer, Cheri Keaggy. She is going to have a concert at St. John's Lutheran Church on February 23rd. I had e-mailed her a few weeks ago letting her know how much we loved her music and how much her songs meant to us especially with what we are going through. She has invited us to her concert as her special guests!!! I don't think that Alexandria will be in-patient but I do not know how to get around the "germ issue." If her counts are high enough I may just go early (to avoid crowds), sit far away from others, and quadruple mask her. She may not be able to breathe, but will enjoy the concert, I am sure. Hope everyone is doing good. We will talk to you soon. -Alison
Thursday, February 08, 2001 at 04:17 PM (CST)
Hello Everyone-
WOW!!!! Almost 400 hits to "Alexandria's Angels" in only 4 days. We know that there are alot of people out there who care and are praying for her, that's for sure. We are gearing up for a 5 day in-patient stay at Children's Hospital. She will have a spinal tap and bone marrow aspiration tomorrow before they start the chemo. The bone marrow aspiration was per Grant and my request so that an M.R.D. (minimal residual disease) study could be done on it. We know that she is in "clinical remission", but that only looks at 100-200 cells, MRD looks at 10,000. This is a much more accurate way of determining how much leukemia, if any, is left. Children's Hospital usually does not do these tests but St. Judes does. Although they could not take her as a patient, the chief medical officer of St. Judes hospital agreed to do these extensive studies for us, FREE OF CHARGE!!!! We are so grateful. BLESSINGS, BLESSINGS, BLESSINGS!!!!!!!!!! Please include in your prayers a special prayer for my dear friend, Ann Newsham, and her family. Her mother passed away unexpectedly yesterday. Ann has helped me so many times in the last 3 months. Whether by updating everyone on e-mail, cooking us dinner, taking over the Brownie troop by herself, or just being there with a shoulder to cry on. She has been my surrogate sister through this and I am so sorry for her loss. I told her a few months ago that God had put her in my life at just the right time. He knew I would need a friend just like her to help me through. I hope that I can reciprocate in her time of need. Thank you all for all you do!!! Don't forget to sign in and let us know you were here. God Bless - Alison
Wednesday, February 07, 2001 at 07:23 AM (CST)
Hello Everyone-
I am so glad to report that after 8 days in the hospital, Alexandria was able to come home!!!! YEAH!!! Our family slept under one roof, a rare event these days. She is feeling great. Her Home Health Care nurse will be coming today and tomorrow to draw labs to see if her counts have recovered enough to proceed with another round of chemo on Friday. If we can proceed, she will have a 5 day in-patient stay. Depending on how well she does on it, they said they may let her do 3 days in-patient and 2 days outpatient. This would be a big bonus...two days less at the hospital. We have gotten a good response to the website already. We have read all the e-mail messages and she loves them all. Thank you all for everything. -Alison
Saturday, February 03, 2001 at 10:54 PM (CST)
The update for the week is that Alexandria has been at the hospital since last Sunday 1-28-01. She had a slight temp and I took her in to Children's Hospital. They discovered that she had a strep infection in her blood that can be life threatening/fatal but we caught it very early and she had already been on the potent antibiotics for two days. She has a minor allergic reaction to the antibiotic so they premedicate her with Benedryl. So needless to say, she is getting much rest. On the contrary, I am not and therefore Grant is at the hospital with her now so that I may get some much needed rest. I have only left her one other time before. She usually wants mom and I cannot stand being away but I am exhausted from sleeping only a few hours a night. Grant is back in town after a National Sales Meeting in Phoenix this week. When he left we thought she only had a virus. Within 24 hours, 92% of labs will have grown something if there is a bacterial infection. Grant left Monday night 29 hours after the labs were drawn because they did not show anything. 72 hours later, they grew this bacteria. How's that for odd's??? We certainly like defying them, don't we??? Statistics do not mean much to us anymore. If it can happen it will happen.....end of story. They think she could have possibly gotten the infection when she lost her tooth. So sad to think that a visit from the tooth fairy and a measly dollar could earn you a trip to the hospital for a week. She has really been in great spirits since Tuesday and we were even dancing in her room yesterday to her Radio Disney CD. I don't know how she does it sometimes. We are supposed to go back on Thursday (Feb. 8, 01) for more chemo for 5 days in-patient but her ANC (ability to fight infection) has been 0 for a week now. I do not know if she will make it up by then. I am almost hoping she won't so that she gets a break from the chemo and hospital. It is to the point that we are spending more time there than home. I must tell you what a wonderful homecoming treat I had. There were over 30 e-mail messages from you all. Thank you so much for your caring, concern and taking the time to write us. It means so much to be reminded of how many of you care and are praying for Alexandria. Your support is overwhelming. I know that some of you have expressed that you aren't sure what to say and I want to assure you that just hearing from you is enough and important to us. I'll say it again, you all are our angels on earth and we thank God for each of you. We love hearing how things are going in your lives as well. Please keep the e-mails coming. Alexandria has even gotten a few e-mails herself and she loves it. Please feel free to have your children e-mail her. She thinks she is way cool to have her own website complete with pictures of her and her family. It will be neat for her to see the "number of visitors" go up. Thank you all for everything you are doing for us and keep praying please.
God Bless-
Alison Haddock
Saturday, February 03, 2001 at 10:36 PM (CST)
Hello Everyone-
It is Alison here! Just wanted to welcome you all to Alexandria's Angels. I am happy that you all found the website that we have created to keep everyone informed regarding our seven year old daughter Alexandria. Please feel free to give the website address to any of your friends or family that may be concerned, praying for her, or wants to correspond with her/us.
Most of you know that she has Acute Lymphoblastic Leukemia with a subtype of 11q23. A rare kind that is seen in around 100 children (mostly babies) per year. I can not believe it has been almost 3 months since DD (diagnosis day). On November 7, 2000, while most people were counting the votes for one presidential candidate or the other, a lab technician was counting 1 million white blood cells in Alexandria's CBC. This has been a roller-coaster several months (that seem like years) but we have faith that God will see us through this difficult time.
Saturday, February 03, 2001 at 05:34 PM (CST)
Saturday, January 27, 2001 at 03:27 PM (CST)
This page has just been created. Please check back for additional updates.
Click here to go back to the main page.
----End of History----