History

Journal History

Monday, June 04, 2001 at 06:37 PM (CDT)

Alex's counts and spinal fluid did come back fine.

I also felt compelled to send this out. It really "moved" me. I hope it does you...

SLOW DANCE

Have you ever watched kids
On a merry-go-round?
Or listened to the rain
Slapping on the ground?
Ever followed a butterfly's erratic flight?
Or gazed at the sun into the fading night?
You better slow down.
Don't dance so fast.
Time is short.
The music won't last.
Do you run through each day
On the fly?
When you ask "How are you?"
Do you hear the reply?
When the day is done
Do you lie in your bed
With the next hundred chores
Running through your head?
You'd better slow down
Don't dance so fast.
Time is short.
The music won't last.
Ever told your child,
We'll do it tomorrow?
And in your haste,
Not see his sorrow?
Ever lost touch,
Let a good friendship die
Cause you never had time
To call and say "Hi"?
You'd better slow down.
Don't dance so fast.
Time is short.
The music won't last.
When you run so fast to get somewhere
You miss half the fun of getting there.
When you worry and hurry through your day,
It is like an unopened gift....
Thrown away.
Life is not a race.
Do take it slower
Hear the music
Before the song is over.

The author is a special little girl who will soon leave this world as she has cancer. This little girl has 6 months left to live, and as her dying wish, she wanted to send a letter telling everyone to live their life to the fullest, since she never will. She'll never make it to prom, graduate from high school, or get married and have a family of her own.

Just give it some thought...

Today I am grateful for the breath that gives me words to say "I love you", for arms that let me reach out to give and receive hugs, and a heart that accepts being reminded that life is much too short.

Thursday, May 31, 2001 at 07:15 PM (CDT)

We just had another spinal tap and although the results haven't come back yet, I am comfortable saying it went well. The procedure was actually done a little differently this time due to some changes in the hospital structure but, overall it was fine. I'm sure by next time (8 weeks) they will have worked out all the kinks. We were in the first "batch".

Alex insisted that he was not going to sleep and since the procedure requires him to be sedated he did in fact sleep. He does not yet understand this mystery so, someday I will have to explain it to him. They always allow parents to stay if they wish and I do because to me it brings comfort just being there with him.

Alex finished Pre-K3 last week and Austin finishes 1st grade tomorrow. For the summer, Alex will return to his sitter's, "Nanny", who used to watch him before the diagnosis. Alex couldn't be happier about it! Austin will be attending several different camps this summer including horseback riding. I will make a cowboy out of him yet!

Thanks for checking in on us. We appreciate so greatly the wonderful support we have recieved from everyone.

Today I am grateful for a place to call "home", amazing teachers that give of themselves to teach and nurture growing children, and my wonderful pets that give complete unconditional love.

Sunday, April 15, 2001 at 08:21 PM (CDT)

Wow...over a month since I have updated! It has been a very busy month.

We participated in the Relay for Life on April 6 and 7th. Boy, what a great time we had. Our team, Alex's Angels, raised over $2600. We raffled a Kayak from Extreme Sports (thanks, Mom and Dad) and a manicure from my friend Amy. We also did a private Luminaria Ceremony for a women's group I belong to and had about 50 candles that honored or remembered someone with cancer. It was a beautiful ceremony and helped us raise our team money.

Alex is doing great...his counts were fine last week and his Spinal tap came back "negative" which is wonderful. As it starts to get hot again, we really have to watch him. He seems to get dehydrated very easily. I am getting much better at seeing the signs now...fatigued, grumpy (okay, yes, this describes any 3 year old mid-afternoon), fever, hoarse voice etc. It happened about 2 weekends ago and it had been several months since the last time. A little TLC, sleep and lots of fluids seem to do the trick, though.

Thanks so much to all those that helped us raise the money for our team to contribute to the Relay for Life...60% of the money stays in Brevard county and the rest goes to current research and educating the public on Cancer as well as many other Cancer related education.

Today I am ever so grateful that Alex loves to have his feet rubbed as much as I do, that Austin yells "Mom, watch" every 3 seconds, and that tonight I only had to say "get in bed" two times.

Happy Easter!!!

Tuesday, March 13, 2001 at 07:58 PM (CST)

All is quiet in the O'Brien household so, I thought I would take a moment to update...

Alex has been doing fine. He has lost his hair again and just in time for his Class pictures. Memories will be memories I suppose. He is still fighting some night time leg cramps. They happen unpredictably and he won't take the tylenol during the cramping which lasts about 10-15 minutes so, we just have to wait them out. It breaks my heart not being able to "fix it" immediately.

Austin continues to be a wonderful big brother. He still spends his recess with Alex in his classroom. All the kids love to see him. He finished up the soccer season with a great couple of games. He really enjoys it. He has been taking Tennis lessons as well.

Today I am grateful for my wonderful and caring parents who provided me with extraordinary life experiences, lessons and the courage to problem solve both small and sometimes difficult tasks.

Life is so much about finding opportunities in change...thanks, Mom and Dad.

***Relay for Life is coming up on April 6 and 7th!

Tuesday, February 13, 2001 at 08:09 PM (CST)

Sorry its been several weeks from my last journal entry...no excuses, I'll just give the update!

Alex had his spinal tap on Thursday. It went much better than the last one. First thing, Dr. Wall gave him some medication through the IV that prevents nausea. We also kept him laying flat for a longer time. He is so funny when he awakes from the anesthesia. He says the same thing everytime "hey, you got 4 eyes and 2 noses". It's so cute cause he drags it out and tries to point at my eyes.

I kept him home from school on Tuesday because I couldn't wake him up for school that morning. My dad rushed over to let him sleep while I took Austin on to school. He finally woke up a little after 9am but, it took til 10ish for him to really come around. I took him to the local Pediatrician's office and they put him on antibiotics. He seemed fine as the day progressed...just tired. Geez...if I went through what he does I think I would have slept in a whole lot more than he does! I guess he is entitled to a "normal" slow morning every now and then.

A special note of "thanks" to our friend Shelly. She is running a marathon in Alaska to raise money for Leukemia research and Alex is her honorary coach. She is a dedicated, faithful and giving person whose life has touched me in more ways than she may ever know. Thank you, Shelly. She will have a web page in March that will chronicle her training leading up to the marathon.

Relay for Life is coming up...April 6 is the big day. A group of friends have put together a team we call "Alex's Angels". We are raising money to support Cancer research. The Relay starts at 6pm and goes until noon the next day. A member of your team has to remain walking at all times. During the evening there is a Survivor walk for those who have and are fighting the Cancer battle as well as a Luminaria ceremony to remember those who have lost their lives to IT. It promises to be an emotional and inspirational event!

Thanks for checking on us...sign the guest book!!!

Today I am ever so grateful for the peaceful quiet that surrounds us when I'm reading the boys a story at bedtime, for the great big sloppy kiss that comes as I tuck them each in, and for the soft sounds of breathing when I go back in to kiss them one more time before I go to bed.

Tuesday, January 16, 2001 at 07:43 PM (CST)

Week number 54...wow, it's hard to believe. We are in the Continuation phase of the protocol now. Only 76 more weeks left as long as we stay in remission...which, by the way, we will. In fact, Dr. Guisti said this week that Alex was doing really great despite the low counts the previous week. We have been so fortunate. I guess I got a little too excited cause when I asked about removing Alex's central line he wasn't quite ready to do that. It couldn't hurt to ask!

So, we had a major drop in the white blood counts (2.1) and subsequently his ANC was low (504) for the week of the 4th of January. They went ahead and gave him the Methotrexate in his thigh on January 11 as scheduled and we all just hoped that the blood they drew at the same time was going to come back okay...and it did! His ANC was over 6 thousand. The next day he came down with a cold which may explain what had been going on. But, Alex never missed a beat. It did however take 3 of us to hold him for the injection but, I'm sure like the blood draws, he will get used to it. With 76 more weeks of this, he doesn't have a choice but to get used to it.

February 8 is the next spinal tap, Vincristine, and prednisone...yuck!!! No point getting worked up over it now I suppose. Alex is a strong "little man". I hope he never has to realize the magnitude of all this and he wakes up one day to think it was all just a bad dream.

Today I am grateful for Movie Theater Butter Microwave popcorn (thanks, Mom), the statement "Mommy, can you tuck me in one more time and give me one more kiss and hug", and for my little boys belief that Mommy can make their bad dreams go away.

Monday, January 01, 2001 at 08:50 AM (CST)

HAPPY NEW YEAR!!! Hope the holidays were "warm-and-fuzzy" for everyone and that the New Year brings lots of wonderful things your way...

We had a nice Christmas surrounded by family. Alex and Austin's Great-Grandfather, Big Popa, visited us from Texas. We had a fun time with him and talked a lot about fishing! He IS the expert, you know.

Our local Candlelighter's gave us generous gifts this year! Many local folks offered toys, gift certificates etc. to the kids (and mom's and dad's)to make the year a little more special. Not only does Candlelighter's offer financial support through out the year but, they organized a Christmas party that even Santa took a break to show up for. I feel very fortunate to have had them in our lives this past year.

January 6 will mark the one year anniversary of Alex's diagnosis. It's hard to believe it's been a whole year, yet it seems, at times, like a lifetime. We've truly been blessed this year despite Alex's diagnosis of Leukemia. We have met some extraordinary people and been given the opportunity to remind ourselves just how fortunate we are.

On January 11, Alex starts his weekly injections in the thigh of Methotrexate. This is the drug he has been taking in all different forms over the past year. Initially, we would go to the hospital for 3-4 days to get it IV, he gets it with each spinal tap intrathecally (in the spine), and gets it orally every 2 weeks over the course of 24 hours for 4 doses. He doesn't seem to have any side effects other than being hoarse and mildly fatigued.

There is an ointment we can put on his leg 1-2 hours prior to the injection to numb the area however, he doesn't like it because of the bandage and tape. Now that he is a little older (a big 3 year old)I MAY be able to reason with him better...we'll see!

Today I am grateful for the heater in my house, that we live in a community that is so giving, and for each day I wake up to be surrounded by the love of a very supportive family.

Saturday, December 16, 2000 at 09:04 AM (CST)

Hi...thanks for checking in on us.

It has been a long few weeks. I am deeply saddened by the loss of Genny, a 3 year old little girl diagnosed with AML. Her mom, Barb, is a member of the CancerParents group that has been so important to me this past year. Genny is an angel now after fighting a most difficult battle with this horrible disease. Prayers and loving thoughts go out to Barb and the rest of her family during this difficult time.

Alex had a spinal tap on Thursday. He had a reaction to the procedure and had a terrible headache and vomiting for several hours that afternoon. He even started a fever that kept inching up every 20 minutes. We were packed and ready to head back to the hospital but, decided with the Oncologist to wait until 7pm and see what his CBC counts from earlier were. At 7pm, the counts were back and fine, and his temperature started going back down. He even got up and ate a piece of bread at about 8pm that evening. I was so relieved. Late that night, Alex and I were talking and he said he won't be sleeping in my bed anymore. Evidently, he thinks my bed is what made him throw-up. I explained to him that it was the procedure not my bedn that had made him sick. In that case, he said, he could sleep in my bed again.

Getting ready for Christmas...warm wishes to all.

I am grateful today that I have a warm home every night, a house full of love, and my boys tucked in tight beside me.

Sunday, November 19, 2000 at 08:33 PM (CST)

Well...no news is good news. Sorry about the delay in getting the update out. I couldn't get into the site, guess I had a brain overload cause...seems I had forgotten my password. Yes, it's sad, I know, to be so young and yet so forgetful!

Anyway, Alex had his 2 Vincristine injections recently. He has started to lose his hair again. I took him to get it trimmed this weekend so it doesn't look like permanent "bed-head". Though, I do hear this is the new "look". Just thought for our holiday pictures it should be shaped up a bit!

Alex is recovering from a cold, just like everyone else, I'm proud to say. He only missed one day of school. He took his Divided dose of Methotrexate Friday which causes him to sound hoarse and worse then the beginning of this cold. But, he actually seems to be feeling much better. In fact, Saturday and Sunday was the Annual Harbor Fest in downtown Melbourne and we spent most of the weekend there hanging out with the family while they launched kayaks for people and talked about the store. What fun we had! Austin and Alex joined in a hermit crab race and Austin came in 3rd out of 50 crabs! Alex was a finalist, too! Boy, were they excited...

I met with a pediatrician last week who is willing to take on Alex's care during the last 18 months of his chemotherapy. He will have to get weekly injections of the methotrexate in addition to the weekly blood draws. The pediatrician will work with his oncologist who will continue to be his primary but, this will allow us to go to the local pediatrician for at least 2 out of every 4 weeks rather than drive to Orlando every week.

Counts continue to look good. Hope we make it through the holiday season without any hospital "runs".

Prayers and hugs to Genny and Collin who have been very sick lately...and to their moms, Barb and Pam, who are fighting the fight with them...I hope you can all go home soon.

Today I am grateful the "bed-head" look is in, for family who live so close in distance and even closer at heart, and for hermit crabs, cause they brought lots of smiles to two precious little boys.

A great big HAPPY ANNIVERSARY for KK and Popa who are celebrating their 35th Wedding Anniversary this week...thank you, Mom and Dad, for being so supportive, loving, and generous with your time. And most of all, for being parents I'm so incredibly proud of. I love you.

Saturday, October 14, 2000 at 07:41 PM (CDT)

We had a very interesting camping trip! We arrived at the camp ground Friday evening just in time to put the tent up in the dark. We met a few people and listened to some music while sitting around the camp fire. We called it a night around 10pm so, we could be "ready to go" early in the morning. And, early we were. Austin was up at 6am sharp and wanted to know where everyone was. Sleeping didn't make sense to him because there was just too much to do. So, we had breakfast then took the boat over to one of the Disney Resorts and played in the pool for several hours. We ate a late lunch in the hotel and then hit the arcade. We were pretty tired about this time and it was approaching 4pm so, we hopped on the boat and headed back.

Alex didn't seem himself but, I decided he was just tired. But, by the time we got back to the camp site, I knew he had a fever. We rested in the tent for a while and when dinner was ready and he wasn't interesed in playing I started to worry. We called the First Aid station and asked if they had a thermometer (since this was the first time I didn't bring one with me.) They said they would send someone out to us. Here came the Paramedics, lights and all. I walked up with Alex and said, "I just need a temperature taken." They were very nice and even gave Alex and Austin a Dalmation souvenier. The bad news was Alex had a fever. So, I made the dreaded phone call and Dr. Guisti confirmed the need for us to return to the hospital. Although I really hesitated I'm glad we went because by the time we got there his temp was 102.5. They did all the procedural stuff (blood cultures, CBC, fluids, tylenol etc.). His CBC came back okay, so they said we could go back but, to return in the morning for a recheck. Alex and I got back to the site about 1am. His fever broke about 10am so, we packed it up and headed home. He probably got dehydrated and was in the sun too long. It's easy to forget he is "sick" sometimes. I will certainly be more careful from now on! This was the second time this has happened.

The kids are anxious to go camping again so, the good news is that the "good" memories out weighed the "unusual" ones.

There was no school Friday, the 13th, so, the boys came to work with me and went to the preschool/child care downstairs for the day. One of the Teachers Assistance told me Austin put Alex down for his nap, tucked him in, and rubbed his back til he fell asleep. He is such a good big brother!

This is our YUCKY week for treatments. Thursday Alex is scheduled for several chemo treatments and a spinal tap. ANC was high last week (over 5000). Hope and pray all goes well.

Today I am grateful for high ANC counts, brotherly love, and for "quick" trips to the hospital...our prayers are with Samantha and Genny and their families while they are going through some difficult times dealing with this disease.

Thanks for checking on us!

Thursday, October 05, 2000 at 08:30 PM (CDT)

It has been a while since the last entry! Rather uneventful I suppose...this is good news.

I participated in a fundraising event for Candlelighters earlier in the week and this weekend we are going camping with them at Fort Wilderness in Disney. The boys are sooooo excited they can hardly stand it. Austin has made a list of all the items we need for camping. Alex just wants his flashlight! There is a cold front coming in so, yes, it could actually dip down into the 70's. It will be a beautiful weekend, I'm sure.

Have not gotten results from Alex's weekly CBC yet. If all is well, we are due for the next divided-dose Methotrexate (5 pills every 6 hours for 24 hours.) This one seems to cause mild fatigue and vocal hoarseness. We have the "ugly" spinal tap with intrathecal Metho, divided-dose Metho, prednisone for 7 days, and Vincristine injection coming up on the 19th of October. It will be a heck of a week for little Alex. Please send prayers that he stays healthy during all this. It can cause his immune system to really struggle making him vulnerable to any "bug". And, not to mention the drugs themselves don't make you feel that great! Then, the 26th of October he will get a 2nd injection of Vincristine. This is just another chemo drug but has to be given directly through his port. This one seems to be a little harder on him than some of the others-- especially since it happens 2 weeks in a row in addition to all the other stuff. One of the drugs (maybe the Metho) causes him to have weakness in his legs and/or toes which then makes him clumsy and trip a lot. More than anything, this just makes him angry with his feet for not participating but, it sure does break my heart to watch.

He has amazing innocense with all this. He will be an incredible and strong young man one day. I am so proud of him and of Austin. Austin is so protective of him when they are around others. Of course, at home it's another story all together!

Today I am grateful for my cozy house with air conditioning (which I'm quite sure the tent does not come equipped with), my warm soft bed that by morning has 2 little bodies snuggled up close, and my computer, because it allows me to keep in touch with so many people who care so much about my special little boy. Thank you.

Please take a minute to sign the guest book.

Thursday, September 14, 2000 at 08:15 PM (CDT)

Hi! It's been a great couple of weeks for us. Alex seems to be feeling well and is really enjoying school. He enjoys playing with his friends but, boy, he is tired at 12:15 when it is time to go home! His teacher told me he dressed up in a beautiful dress the other day and topped it off with a surgeons cap for a duration of the morning. I'm not going to begin to try and read into that. I'm just glad he is having fun.

He had his weekly blood draw today and decided to take the nurses some "treasures" he had found. These were the most beautiful rocks anyone has ever seen. He was so proud presenting them with his "gifts". When they were done taking blood, the adults in the room joked that he really brought the rocks in to throw them at the nurses when they were done! Actually, he is getting much better. He even chooses which arm he wants the blood drawn from if they don't have to access his "port". What a trooper!!!

September is Childhood Cancer Awareness Month. There will be a Candlelight Vigil on September 27 to remember our angels and honor our survivors. In October, we are going camping with our local Candlelighters chapter at Disney's Fort Wilderness. The boys are really looking forward to this.

One of the families from CancerParents is suffering the loss of their precious daughter Ariel, who passed away yesterday, September 13, 2000. She was 5 years old and had been diagnosed with Leukemia on 12/21/99. She now joins the heaven of angels and lives on in our hearts as we continue to fight the battle she fought with such great strength. May she and her family celebrate the time they shared and find peace in the gift of life she offered those around her.

Today I am ever so grateful for every waking moment, every sleeping dream and every opportunity to say "I love you."

Thursday, August 31, 2000 at 06:15 PM (CDT)

Hi friends...thanks for checking in on us.

I am delighted to say, we must have been dealing with a virus last week when we rushed over to the hospital. Alex was tired for a couple days and had a low grade fever, but was able to attend the first day of school in Pre-K-3. I was so proud of both the boys. I took a picture of the two of them outside the school in front of a beautiful big tree. They looked so happy. You would never know that smiling little boy had such a terrible disease.

Alex had a spinal tap and intrathecal chemo last Thursday. His counts came back fine so, he also had his divided dose Methotrexate on schedule that Friday. This week, he had his CBC drawn locally and his ANC is over 2000!!! Hasn't been this high in a while...and it is only 5 days after Metho and a full (3 mornings) week of school! What a blessing and a celebration. (I'm knocking on wood now, just in case.)

Today I am grateful for teachers who choose their career because they truly enjoy teaching children, for the warm embrace of a child in the early morning hours, and for God, who reminds daily, how fortunate I really am.

Monday, August 21, 2000 at 09:11 PM (CDT)

We had a wonderful vacation in the Florida Keys. We couldn't have asked for better weather or a more beautiful place to stay. We had a wonderful suite that overlooked the bay and pool area. We brought a couple kayaks with us and were able to launch them from right outside our door. Austin was able to practice his snorkeling skills that he learned in camp. Even Alex learned how to use a snorkel and mask. We saw the most amazing tropical fish. I think we spent more time in the water than out and came home feeling refreshed and tan.

Within our first hour home, Alex spiked a fever of almost 102 degrees. So, at about 7pm Sunday evenning, after 6 hours in the car for the ride home, Alex and I hopped back in the car to meet Dr. Wall at the Urgent Care wing of the Childrens Hospital. We arrived at about 8:30pm and fortunately they weren't very busy. We watched 2 videos and when his counts came back good, Dr. Wall said we could go home for the night but, to call first thing in the morning or if his fever went any higher. She felt like it was probably a viral infection but, they took blood and urine samples to see if either grow bacteria...just in case. And, I'm happy to report that 24 hours later, so far so good. He seemed to run a fever most of the day however, he clearly felt better and even ate some too. They gave him fluids at the hospital last night and that seemed to regenerate him some today. Alex kept anticipating a call from Dr. Wall because I told him if she said she needed to seem him again we may have to go back to the hospital. So, every so often he would try to casually ask "Did Dr. Wall call you yet? I'm drinking lots of juice...thats what she said". What sweet innocence!

Today I am grateful for being surrounded by wonderful and supportive people, prayers that are answered and some that are not, and that children are so conveniently naive.

Friday, August 04, 2000 at 08:06 PM (CDT)

Thanks for all those journal entries! Keep them coming. It's wonderful having so many people checking in to see how Alex is doing. Thank you! He will appreciate them some day when all of this is long behind us and a distant memory...

It has been a long week. It was the last week of summer since public school starts on Tuesday. Austin and Alex don't go back until August 23rd so, we have another couple weeks still to go. We are planning a trip to The Keys for some snorkeling fun for a few days. And, next week, Austin and I are taking Popa and KK to Islands of Adventure/Universal Studios for the day to celebrate Popa's birthday. (Also, thought it would be nice for Austin to have some individual attention!) Alex will stay with his other grandparents, Omi and Opa, like he usually does on Wednesdays.

Today, Alex went to the preschool in the building I work in. It is a school for children with Special Needs and typical developing children. Austin went to preschool there for pre-kindergarten. It was an incredible experience. So, Austin has been going just for this past week for child care and Alex has been asking to go with him. Since his counts were good on Thursday, he got to spend Friday playing with children his own age! He really seemed to enjoy playing with peers rather than adults. In fact, by the end of the day, Alex wasn't quite ready to come home. So, Austin and Alex each brought a friend home for the night! You can, therefore, imagine the state of affairs in our home tonight! Actually, its quite fun...popcorn, movies, laughing, fighting, tents, forts, etc.

As I said, counts were good this week...ANC>1600. Lets just hope I didn't overdo it for him today!

Thanks again to all of our friends and family for checking on us and continuing to keep us in your thoughts and prayers. And, please continue to do the same for all the children and families having to learn more about Childhood Cancer than they ever wanted to.

Today I am grateful for a house full of children, peace and quiet at bedtime, and knowing tomorrow is going to be another wonderful day!

Thursday, July 20, 2000 at 08:46 PM (CDT)

Well the Birthday party was wonderful! It couldn't have been better. The beach was perfect and the day was just great. Alex got a little tired so, he asked my dad, his Popa, to take him home. It's funny how he knows when he has had enough. He had gifts he had to continue opening after we got home and then the next day too!

His counts are low this week (ANC=589). We will have to limit his exposure to other kids and/or people who may be sick. I have lots of questions for the clinic appointment next week. I'm feeling anxious about sending him to preschool in the fall but, he is really looking forward to it. I am too actually. It just creates a lot of questions when we have weeks like this. He seems to be feeling okay...

Please keep a little boy named Collin in your prayers. His mom is with the online CancerParents group and he has just relapsed. He is 5 years old and has the same kind of Leukemia (ALL) Alex does. The Make A Wish Foundation has just sent him and his family to Disney here in Orlando.

Today I am grateful for quiet, rainy evenings, the gift of life, and for sweet moments with a 3 year old--"You are the best mommy in the whole world cause you let me eat grapes!"...I wish it was always that simple.

Tue Jul 4 13:12:21 CST 2000

The spinal tap went as expected on Thursday. The nurses all felt like Alex was in a better mood than ususal since he entertained them with "fish lips" and silly conversations. I prepared myself for yet another lecture from Dr. Guisti about the correct placement of "magic" cream. The lumbar area is patched with cream 2 hours prior to the puncture so it becomes numb. I usually do this in the dark early in the morning while he is still half asleep. Then, we get right in the car with pajamas still on make the hour and a half drive to the hospital. The timing is perfect but, frequently I place the "magic" cream a little too high, or a little too low. So, Dr. Guisti started to tell me how to find the right place, again, and I politely interrupted with "I know, I did the best I could, it was dark and he hates having that thing put on, I'm trying, you know, I'll do it right next time..." Well, being a man of very few words, he just stared at me and refocused on Alex. The nurses were giggling and trying to look away because it was such a predictable outcome. Dr. Guisti is a very kind and gentle man. Some times while we were in the hospital, I saw him come in the room early in the morning and just look at Alex sleeping and smile. Boy, it takes a unique and courageous person to be a pediatric oncologist. We pray for Dr. Guisti and Dr. Wall to have continued strength and knowledge in treating all "their" children. We feel so fortunate to be under their care.

We had a break through giving medication last night! This is the week we are on 21 doses of prednisone which tastes so horrible. One of my on-line cancerparent friends, told me how she gets her son to take his meds easily. This gave me the renewed strength to experiment again to find what might make it easier for Alex. So, we went through a lesson about how to swallow pills with juice, and lots of demonstration...He finally tried, and thinking he got it I started high-five-ing and yelling when he looked at me and started crunching the pill in his teeth, then began heaving and then, well, I won't describe the ugly seen after that. So, after cleaning up, I wasn't yet ready to give up on this. It is as traumatic to Alex as it is to me when he has to be held and have it forced down him. So, we got the strawberries out--his favorite food in the world! We have tried this before but, we tried just sneaking it in. We were caught each time. Being almost 3 now, and having a lifetime of experiences behind him...this time he was told exactly what we were going to do and accomplish by putting the pill in the middle of the strawberry. It worked! It wasn't a fluke either cause we have done it again. Thanks, Katrina for your empathy and time in talking me through this!

Counts were a little low this week (ANC=986). We are hoping on Thursday they will be back up (over 1000) in time for the big birthday party!

Today I am grateful Mom taught me the old counting to 10 trick BEFORE I lose it, that miracles come in all sizes, and for the joys of motherhood.

Sunday, June 25, 2000 at 08:07 PM (CDT)

I finally got some old film to the store to be developed this weekend...these things happen...anyway, some Sea World pictures were in there from one of our trips prior to the nights we were admitted for treatments. Boy, was it nice to see the positive changes in Alex. Besides the obvious hair growth, he just looks healthier! It's nice to see the subtle change in his eyes that goes unnoticed when you look into them everyday. I am hoping to get some help posting them on this site this week...

Alex will be 3 years old on July 9th. What a true celebration of life this will be. He, of course, wants nothing less than a Scooby Doo/strawberry cake so, that is what he will get. He has also put in a request for no singing "Happy Birthday". I'm not sure if this is a reflection on me or something he just doesn't like. I will wait til he is a little older and wiser to answer that.

We have a spinal tap and chemo scheduled for this week. This will mark the end of this phase of treatments. Then the following week, we will get the next protocol. I have already picked up the prescriptions for this but, won't start until they explain how it is to be given. He will continue to go weekly to have his blood drawn and chemo as an outpatient but, no more hospital unless he gets a fever! I feel confident he will continue to grow stronger daily and we will fly through the next 2 years.

Today I am grateful for my Faith, pull-ups with Mickey Mouse, and the sweetest words I've ever heard "I love you too, Mommy".

Monday, June 12, 2000 at 09:31 PM (CDT)

Thanks for checking on us! It means so much to me when I see a new journal entry. It's all I can do to update this page so I apologize for not writing back but, I thank you very much for just checking to see how Alex is doing.

Alex completed his last "round" of hospital treatments this past Thursday. We have 2 more weeks of this stage then move into the third. I don't know much about it but, will update here when I do. KK is taking him to his appointment this week with Dr. Wall. She is writing a letter with diagnostic and treatment description for KK and Alex to take with them on their trip to Texas should Alex get unexpectedly sick. The letter will serve only to keep him healthy as if we were unprepared he would certainly need it. Anyway, it will be a wonderful weekend for everyone. I will be waiting patiently for their return and sending lots of prayers. I only wish I could go too however, I have already taken a great deal of work off as you can imagine.

While Alex and KK are having fun with Popa, Austin will attend a camp all day Saturday for children whose lives have been affected by cancer. I hope he uses the opportunity to ask some of the tough questions I have difficulty answering. He is such a thoughtful, creative and wonderful little boy. It's hard to imagine life BC (Before Children)!

My thoughts and prayers go out to the other parents of children with cancer who are fighting a tough road these days. I have met some incredible moms on-line that are battling some very difficult days and some who have recently suffered the loss we all so desperately fight.

May God Bless our children and provide us the strength to deal with the path He has chosen for us.

Wednesday, May 31, 2000 at 07:31 PM (CDT)

Sorry it has taken me so long to update! I went to San Francisco last week for a conference then a couple days of relaxation. It was a wonderful trip; however, I missed my boys beyond belief. The first night I called home Alex said "Are you at home? Where are you?...Well, you can just come home now" Yes, this broke my heart. Even harder to deal with is the fact they did just great without me! Imagine that...my mom took Alex to his clinic appointment. When I asked Alex how it went he reported back that "Dr. Guisti is doing grrreat", and this, I was very happy to hear. In addition to this, my mom did happily report, that Dr. Guisti also felt like Alex was doing "grrreat". We are all so pleased with his progress.

Speaking of progress...we are making great strides in the area of potty-training. In fact, he told KK the other day (very politely I might add) that she should leave now because he really needed his "pwivacy". I had assumed with everything he has been through that this would come much later. With the frequent IV treatments the little guy has to "go" pretty often!

This week all we have to do is a blood draw for a CBC and can stay here in town for that. Our friend, Joy, at the H.O.P.E. clinic takes care of him. Next week, we have our last scheduled trip to the hospital! Wow...it's hard to believe it has been almost 6 months.

For Father's Day, Alex and KK are going to Texas to visit my Grandfather, better known as Big Popa. It will be an incredible weekend!

Today I am grateful for velcro diapers, a child's contagious laugh and time away to remind yourself of just how wonderful home is.

Thursday, May 18, 2000 at 05:48 AM (CDT)

We are off to Arnold Palmer Hospital again for another scheduled treatment. Alex has been tired lately but, that seems to be typical for him these few days before this treatment. We are in Week #19...there is only one more scheduled treatment like this after this week... what a celebration that will be.

Austin graduates from Kindergarten Friday. Alex and I will be thinking of him during his special time and wishing we could be with him. He is such an awesome big brother. I am so proud of his understanding and the love he expresses daily towards his little brother. He brings home a picture or card he has made for Alex almost every day.

Today I am grateful that the Veterinarian's office takes credit cards, for pre-mixed cookie dough, and for hugs from a child that say "I really mean it."

Sunday, May 07, 2000 at 08:14 PM (CDT)

Oh no! We are back on Prednisone...not only do I have a 2 year old in the house but, a 2 year old with mood swings. And, I have the pleasure of attempting to make this 2 year old understand that we in fact are NOT here to take orders from him or to suddenly change all the rules.

Tonight Alex spent a solid 45 minutes in fits of tears and anger because he caught me changing his sheets...yes, I was changing his sheets. I'm not sure what pushed me over the edge but, I indeed accepted the challenge. Alex spied me in his room, commanded attention and insisted I put the old sheets back on because these (he then bent down and smelled them) smelled like they must be clean!

Ultimately, he cried himself to sleep since we then chose to seize the moment and give him the last dose for the day since he was miserable anyway. On Friday I gave him the second dose of the day 3 times because he spit out the first attempt, threw up the second and I managed a surprise attack with the third go-around while he sat in the tub. I guess it is obvious that not only does it cause mood swings, nightmares, sleeping difficulties, extreme irritability etc. but, the stuff tastes horrible too! Go figure!

This week we are due for a spinal tap, Vincristine injection and Methotrexate intrathecally. This allows the chemotherapy to be directly injected into the cerebrospinal fluid to kill any possible cancer cells (blasts) and prevent relapse. He sleeps for most of it. And, the nurses and oncologists are wonderful and kind through the whole thing.

I remember so vividly the first time he went for this procedure and I sat on the floor outside the door crying and crying. I felt like my little "healthy" boy was changing before my eyes and I was so powerless to help him. Now, I am a pro. I stay with him the whole time and rarely shed a tear. I even "chat" and ask questions sometimes. Funny how your new "normal" begins to develop. The docs and nurses are incredible people who ease you into this new norm with amazing sensitivity and understanding.

On that note, I am grateful today for patient and knowledgeable doctors and nurses who oversee the difficult and emotional management of childhood cancers, for every moment of life with a cranky 2 year old, and for weekends!

Tuesday, April 25, 2000 at 07:13 PM (CDT)

Time continues to fly by and once again it is time to go back to Arnold Palmer Childrens Hospital for a few days. Alex had a spinal tap and chemo last week and did quite well. The morning of the procedure however, he woke up complaining his eyes hurt. It appears as if he had developed "pink eye". We medicated his eyes for the prescribed number of days yet, it is still lingering. For the first time ever, he actually asked for his medicine this morning. When we go Thursday for admission the docs will check it out.

On April 15th we celebrated Austin's 6th birthday at the zoo with many of his friends. We had a nice time visiting with the animals and eating pizza and cake. Austin is an amazing big brother and very protective of his Alex.

This past Easter weekend, Austin and Mark went to Ft. Lauderdale to visit Uncle Mike and Aunt Kathy. Mark's cousin Kevin and his family were in town visiting from Texas. Alex and I had to miss out on the fun and stayed home attempting to recuperate from the very contagious pink eye and over all fatigue. After a late afternoon nap on Sunday, we met KK, Popa and Uncle Scotty at the river and played around in a couple of kayaks with Scotty's new puppy Fae. We knew Alex was tired when he his half closed eyes looked in my general direction and he mumbled "I'm ready to go now." He seems to play hard and tire easy these days. He has put most of his weight back on and wears his bald head well...his head is just so perfectly shaped!

I am trying to get some pictures posted. I will try and make it a priority after discharge next week. And, by the way, since we haven't been busy enough lately we have adopted 2 new kittens, Daisy and Buster...

Today I am grateful for bedtime with a good book, my answering machine, and Alex's daily challenge to me "I will kiss you Mommy if I beat you..." (oh darn, he beat me again!)

Thanks for checking on us.

Wednesday, April 12, 2000 at 04:35 PM (CDT)

Thanks to everyone who has entered a message in the guest book. It is great going through all the notes and smiling knowing our friends care so much. I hope that some day when all this is behind us, Alex will find great joy in reminiscing through these pages and messages to rediscover the love and support that has touched our lives during these days of challenge!

Well, we survived 4 days in the hospital last week which was kicked off with a fantastic day trip to Sea World. Sunday morning, when we are typically discharged, Alex's chemo levels were still too high to allow us to go home. We both cried. The nurse reluctantly agreed to draw another sample at 6pm but, told us not to count on going home till Monday morning. Enter my mom...she saved the day once again...she played with Alex and I got out for a few hours, what a break! It makes all the difference in the world being able to escape even for an hour. And Alex appreciates the change in play mates too! Then, another surprise, his level came down by 7:30pm and we were home by about 10:30pm. What a relief!

We received wonderful news this week...Alex has been accepted to Austin's school for preschool in the Fall. And, to top it off, a very good family friend, Mary Ellen Williams, will be his teacher. Getting into preschool is such a milestone for me in that it represents "normalcy"-whatever that is! His oncologists have encouraged his participation in school with the understanding that there may be times his inability to fight off infection may not allow for exposure to the other children. Although he is in a phase now that significantly restricts his circle of friends, by August, if all goes well, we will be at the next stage of treatment called Late Intensification. This phase starts in July and is scheduled as outpatient treatments on a weekly basis without the hospitalizations! Hallelujah!

Today I am grateful for beautiful Florida weather, meals that take less that 10 minutes to plan, cook and prepare and for little pajamas with the feet in them.

Thursday, April 06, 2000 at 05:23 AM (CDT)

Hi everyone! Thanks for checking in on us. We are off to Arnold Palmer hospital for the next 4 days. Alex will be getting a 24 hour IV drip Methotrexate treatment. Before we leave the hospital, he then has to flush that from his body with lots of fluids. We hope to be home Sunday afternoon (in time for Austin's soccer game!)

Today, we will stop at the clinic and get checked by the doc to make sure he is up for the treatment. Then, Mom and I are taking Alex to Sea World. He has never been and I think he will really enjoy it! Of course, I am bringing the camera. He has been so tired lately so, we are bring the stroller and hoping he will let us know when he gets too tired and needs a nap, yeah right...With luck on our side, he will be exhausted when we check in to the hospital and sleep like a baby through the night (yes, me too!)

The Relay for Life is April 8 at Cocoa High if anyone is interested in attending this amazing event to raise money for cancer research. I will be thinking of all the families that have been touched by cancer.

Today I am grateful Pizza Hut delivers to the hospital, lollipops come in lots of flavors and for the intimate and knowing look between a mother and child.

Thursday, March 30, 2000 at 05:43 PM (CST)

This morning Alex had a scheduled spinal tap and chemo. He did GREAT!!! One of his oncologists, Dr. Wall, brought me a picture she had taken of Alex several weeks ago. Together, Alex and Dr. Wall communicate through something they call "fish lips". This picture exemplifies what that is. I was flattered when she asked for permission to share it for several different purposes...even her photography class. She, in fact, has already made the picture into a slide! I feel so grateful to have such wonderful physicians watching over and guiding us through this journey.

Speaking of that, several other "angels" come to mind...with our weekly trips to Arnold Palmer Hospital, PRISCILLA HAMENT offered to organize many of the parents from Austin's school to provide us with a meal once a week on those difficult days we travel to Orlando. Boy, did we get great meals! It has been so helpful coming home and not having to worry about what to cook.

Alex's great-grandfather, CARL POFF, lifted us up in prayer at his church in Texas and the "supporting cast" there at FIRST BAPTIST CHURCH in Whitesboro has blessed us with spirtual strength, words and letters of kindness, books and treats for both Austin and Alex and fun pictures from the Sunday School classes. My mom always told me that my Popa had a direct line to the Man upstairs...and I have never doubted that for a second.

My sisters in BETA SIGMA PHI have reached out to our family through cards, phone calls and even the donation of blood and platlets. This group of women, I am so proud to be associated with, has held my hand and answered prayers of friendship that reach deep into my heart.

Ever so important to our daily functioning, are the "front line" troops, aka GRANDPARENTS, who take shifts so Alex can keep his exposure to other children and illnesses to a minimum...in addition to taking care of Alex several times a week, escorting us to Orlando, helping with groceries, doing laundry, providing entertainment for both Austin and Alex for numerous reasons, well, what more do I need to say. They are incredible!

Today I am thankful for my family, friends, and even strangers, who have reached out to us in a time of need. I am also thankful for gum and lollipops 'cause sometimes bribery works with a 2 year old!

Thursday, March 23, 2000 at 10:12 PM (CST)

I picked up pictures yesterday of Alex that began in January and continued through the next 6 weeks...it was difficult viewing my healthy child change before my eyes. The eyes that once sparkled and lit up with his smile seemed to be drowned out by a forced and difficult stare.

More recently, although bald headed, he began to shine again. When he smiles and laughs he causes a chain reaction for those in the same room. He recently asked me "Why I sick, Mommy?" I answered the best I knew how in a language I hoped he would understand. He listened. He sat quietly. Then, he responded, rather insisted "No, I not sick, I'm okay" I started to argue with him and stopped myself...the power of positive thinking and prayer...what more could I ask for.

I am ever so grateful for the wisdom of a child.

Tuesday, March 14, 2000 at 06:02 PM (CST)

So many of our friends and family have expressed concern and shared in our prayers thus far, we felt this page would assist in keeping everyone updated!

Our journey with Leukemia began in May 1999 when Alex began limping. Nothing was noted on the xrays and the limping came and went in about 3 weeks time. The following November it started again, just as it had in May. This time it did not go away. Several doctor appointments later, we still were unsure about the unusual way Alex was walking. By Christmas he had gotten worse as we left to visit his Great-grandfather for the holidays. While in Texas, Alex was unable to walk at all at times. As soon as we returned home, our doctor began investigating more aggressively for a cause. This landed us in the pediatric orthopedist's office in Orlando on January 5, 2000. The doctor spent 2 hours with us mumbling under his breath several times "he is a mystery". Looking back now I realize what he meant. Alex presented to him as a healthy 2 year old little boy who had no history of illness, fevers, or anemia...he just walked funny, if at all, in the absence of an orthopedic problem.

As a last resort, he chose to do a complete lab work-up and check for "bone marrow problems"...our first clue. Although, Alex had an ugly bruise on his cheek (Austin accidentally "clocked" him with a golf club Christmas day) that seemed to take a while to go away, and an unexplainable fractured wrist, and compared to his brother was mildly pale...okay, so hind sight is 20/20.

The doctor called the next day and asked me to please sit down (my second clue). Alex had blah, blah, blah in his blood work, in other words, "we think he has Leukemia and you need to see the pediatric oncologist in the morning".

So, began the journey. And, through the eyes of a child, I have learned a new language, a new life style, a new normal, a new spirituality, and most of all I have learned patience and gratitude for every living moment- through the eyes of a child.

Now in March, we have achieved the anticipated remission (February 10) and made a 2 month dent in the 130 week "road map" to healing. Alex continually strives to find excuses for taking his medicine "later" and we battle the ongoing confusion of scheduling doctors appointments, work schedules, Austin's soccer games, medication doses and times etc. We are ever so fortunate to have both our families so close and so flexible. Everyone takes shifts to make sure Alex can stay as healthy as possible and at home. Sometimes I come home and the laundry is done or the frig is filled with food...mothers will always be mothers...thank goodness!

It is bedtime for two beautiful little boys and life is much too short to let it pass without making sure they know how much they are loved.

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