Journal History
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Wednesday, December 25, 2002 at 07:23 PM (CST)
Happy Holidays to All!!!
Everything is going well here and we have had a wonderful christmas. The kids have had a ball!!
27 weeks left of treatment. Is there light at the end of this tunnel??
More Soon.
Wednesday, October 30, 2002 at 07:18 PM (CST)
Happy Halloween to Everyone!!
Nick, Ali and I just finished carving pumpkins. Nick and Ali loved getting into the pumpkin goop. Nick decided on a vampire design for his pumpkin (complete with fangs) and Ali went with a happy face pumpkin and added paint for the finishing touch. Laura is helping plan and throw the Halloween party for both Ali's and Nick's classes tomorrow.. Ali is packing candy bags right now (and feeding her Dad way to much chocolate).
Nick's counts have been fabulous. The last three counts have been the highest they have been in over 18 months (2500-4000 range ANC). He has been feeling great and having a ball at school. He really ejnoys his class and loves his teacher Ms. Barnett. She has experience with a former student that had leukemia and has just been great for Nick and all of us. we truly do appreciate the staff at Sunnyside, especially David Kearney the principal. He has been just great!!
We had conferences for each of the kids last week. Ms. Barnett told us she just loved having Nick in her class. Ali received straight A's again, with several of her grades being A+. Her teacher Ms. Fischel commented on how terrific of a student Ali is and that she is an absolute whiz at mathematics. Laura and I are so proud of both of them!!
KC has been absoutely cold (40s) for the past couple weeks and has rained for 8 days straight. Just heard that now it is going to get really cold. Here comes winter.
Sorry for the long time between posts. Everything has been going so well for us on all fronts. Will try to update more frequently as the holidays are approaching and the activity level is increasing.
Thank you all for your kind words, thoughts and prayers. It means so much to all of us.
How bout those KC Chiefs!!!!
Quote of the...month??
"Some people see things as they are and say why.
I dream things that never were and say why not?"
--Robert F. Kennedy--Originally by George Bernard Shaw.
Friday, October 11, 2002 at 06:48 AM (CDT)
Nick turned 6 yesterday!!
He is having his first big birthday party tomorrow and couldn't be more excited.
Everything else is going fine right now. He is doing fine with his counts and his chemo has been increased as a result. Hopefully this will continue.
Hope this finds everyone in great spririts and health.
Tuesday, September 10, 2002 at 06:45 PM (CDT)
Sorry for the long period between updates. Our lives have been a little boring lately (and we love that).
The big news...Nick started Kindergarten!!! He absolutely loves it. His teacher is Mrs. Barnett and she is wonderful. We are fortunate in that the principal and Mrs. Barnett have has students with leukemia before. Nick and Ali both go to Sunnyside Elementary, only 4 blocks from our house.
Other big news...Laura has gone back to work!! She is getting up early for work for the first time in nearly 6 years. It is quite an adjustment for all of us but has been going great so far.
Ali is in 5th grade this year and has an awesome teacher, Ms. Fischel. Ali really likes her and when Laura and I met her we both felt the same. She is looking forward to being in the band this year and is leaning towards violin. She will have to make a decision in the next couple of weeks.
Nick's treatments have been going pretty well. His bone marrow seems to be recovering from all of the chemo and radiation of the last year and his counts are holding their own. He is doing 4 weeks of IV chemo followed by 6 weeks of oral. He will be on this maintenance cycle until his treatments are over. Last week they told Laura that he has 47 weeks left!! We are so hopeful that he make is through his treatments and gets on with his life. We will be counting down the weeks.
Hope this finds everyone in good spirits and health.
Sorry again for the long delay. I will try to update every couple of weeks assuming we stay in our boring pattern (we hope we do).
Wednesday, June 26, 2002 at 06:23 PM (CDT)
Nick and Laura are back home. They got back to Olathe yesterday afternoon and are glad to be home. Ali and I are glad to see them. Laura and I will be administering antibiotics to him for the next week. He is in great spirits.
Thank you for all of your kind thoughts.
Sunday, June 23, 2002 at 08:29 AM (CDT)
Nick is in the hospital. He was admitted to Children's Mercy yesterday morning. He is in Room 4613.
Both Nick and Ali have had a bad cough the past few days and Nick's turned into a fever. Laura took him to the clinic on Friday for a blood culture which alarmed (grew something) yesterday AM. Here we go again. Never seems to end.
Please think of Nick and pray that he gets through this latest trouble as soon as possible. The hospital is no place to be for a five year old boy in the summer.
We will update later.
Monday, June 10, 2002 at 06:25 AM (CDT)
Nick just passed the one year mark since his CNS relapse. He has come a long way and has 12 months of treatment left barring any setbacks. It ahs been a tough year on all of us but especially on him with all of the high dose chemotherapy and radiation. He has done wonderful and kept a positive attitude through it all. Laura and I could not be any prouder.
Last Monday Grandpa Jerry came over to watch the kids while we were away. I had been working on getting Nick to ride a small bike that I bought him without training wheels without much success. By the time I returned home that evening, Jerry had taken the training wheels off of Nick's big bike and had hime going up and down the sidewalk on his own. Needless to say both Nick and Jerry were both pretty proud!! Nick wants to ride all of the time now and to take family bike rides. He is really growing up. He starts kindergarten in just over two months. We can hardly believe it.
Thank you for all of the kind words and thoughts in the guestbook. they mean alot to us. I will try to update more often.
Quote of the month??
Watch Dad, I can ride by myself!!!!
Thursday, May 16, 2002 at 12:34 PM (CDT)
This was sent to me by my aunt and uncle, Harris and Arlene Serum. Enjoy!!
PS - Nick is doing just great. He is back on his chemo and his counts are reasonably strong. Laura and I are so grateful for all of the progress he has made since his relapse last June and for all of you. Thank you all for being there for us. The comments you leave in the guestbook never fail to brighten our day and our lives.
The Wal-Mart Parking Lot
========================
She had been shopping with her Mom in Wal-Mart.
She must have been 6 years old, this beautiful brown-haired,
freckle-faced image of innocence. It was pouring outside.
The kind of rain that gushes over the tops of rain gutters,
so much in a hurry to hit the Earth it had no time to flow down
the spout. Drains in the nearby parking lot were filled to
capacity and some were blocked so that huge puddles laced around
parked cars.
We all stood there under the awning and just inside the door of
the Wal-Mart. We waited, some patiently, others irritated...
because nature messed up their hurried day.
I am always mesmerized by rainfall. I get lost in the sound and
sight of the heavens washing away the dirt and dust of the
world. Memories of running, splashing so carefree as a child
come pouring in as a welcome reprieve from the worries of my
day.
Her voice was so sweet as it broke the hypnotic trance we were
all caught in. "Mom, let's run through the rain," she said.
"What?" Mom asked!
"Let's run through the rain!" she repeated.
"No, honey. We'll wait until it slows down a bit," Mom replied.
This young child waited about another minute and repeated,
"Mom, let's run through the rain."
"We'll get soaked if we do," Mom said.
"No, we won't, Mom"
"That's not what you said this morning," the young girl said as
she tugged at her Mom's arm.
"This morning? When did I say we could run through the rain and
not get wet?"
"Don't you remember? When you were talking to Daddy about his
cancer, you said, 'If God can get us through this, He can get us
through anything!"
The entire crowd stopped dead silent. I swear you couldn't hear
anything but the rain. We all stood silently. No one came or
left in the next few minutes. Her Mom paused and thought for a
moment about what she would say.
Now some would laugh it off and scold her for being silly.
Some might even ignore what was said.
But this was a moment of affirmation in a young child's life.
A time when innocent trust can be nurtured so that it will bloom
into faith.
"Honey, you are absolutely right. Let's run through the rain.
If God let's us get wet, well maybe we just needed washing,"
Then off they ran. We all stood watching, smiling and laughing
as they darted past the cars and yes through the puddles.
They held their shopping bags over their heads just in case.
They got soaked.
But they were followed by a few who screamed and laughed like
children all the way to their cars. I want to believe that
somewhere down the road in life, Mom will find herself
reflecting back on moments they spent together, captured like
pictures in the scrapbook of her cherished memories.
Maybe when she watches proudly as her daughter graduates,
or as her daddy walks her down the aisle on her wedding day.
She will laugh again.
Her heart will beat a little faster.
Her smile will tell the world they love each other.
But only they... will share that precious moment, when they ran
through the rain believing that God would get them through.
And Yes, I did.
I ran.
I got wet.
I needed washing.
Circumstances or people can take away your material possessions,
they can take away your money, they can take away your health.
But no one can ever take away your precious memories.
So, don't forget to make time and take the opportunities...
To make memories every day!
I believe that friends are quiet angels who lift us to our feet
when our wings have trouble remembering how to fly.
I HOPE YOU WILL TAKE THE TIME TO RUN THROUGH THE RAIN
by Bob Perks - BobPerks.com
Thursday, May 02, 2002 at 02:28 PM (CDT)
We are back from Orlando!! We had a wonderful trip and the kids had an awesome time.
The trip started great as Southwest Airlines had huge gift bags for each of the kids when we got to our gate at KCI. Two reps stayed with us and taked to Nick the whole time. It really made his fell special at 6AM.
We arrived in Orlando on Satruday the 20th and spent the day unpacking, swimming and then Laura took the kids to Mayor Claytons (a giant rabbit) birthday party while I went to a meeting about Give Kids the World (GKTW) and to get theme park and attraction tickets and information. Tried to get the kids to bed early (we were so tired) but they were so excited to be going to Disney that sleep did not come easily. GKTW is a wonderful place. We had a 2 bedroom 2 bath Villa just down the street from the pool and the common areas. I have put a link below on the page for Give Kids the World so you can take a peek.
Sunday we spent the day at Disney Magic Kingdom. Because Nick was on a Make A Wish trip we did not have to wait in any lines. We went on all of the rides (Nick loved Space Mountain, and did not like Its a Small World). We had an absolutely wonderful day and the kids were so well behaved. The kids saw several characters, including the one Nick most wanted to see, Mickey!! That evening we swam and played in the water park at Give Kids the World (GKTW). It was a great day and one that we have been looking forward for such a long time. We felt like a regular family and it gave us all a chance to be away from leukemia, chemo and radiation. It was terrific.
Monday we went to Universal Studios Islands of Adventure. This was our favorite park. Ali and Nick each bought a character autograph book on Sunday and at universal they received many autographs. Ali told me she has over 50 total. We ate a late lunch at Hard Rock Cafe with a gift certificate from GKTW. It was a great day. SpiderMan ride in 3D was awesome. The design of these rides was incredible to us. We swam that evening at the pool party. Nick volunteered me to be a contestant in a contest where the kids use a sponge full of water to try and fill a small paper cup with water. Tough part was that I had to lay on my back and have the cup on my head. I got soaked and Nick had a ball laughing at me. Laura has it on video. Ali met some girls her age at the party and was able to have a nice time with them.
Tuesday, being worn out from 2 days at the parks, we drove to Daytona Beach. Ali had her hair braided and then we all played on the beach and in the water. The kids buried me in the sand. We had the beach to ourselves and it was a beautiful sunny day. We had great weather (85 and sunny) all of the days we were in florida. When we got back to Orlando we went to a cool putt-putt course near GKTW and had a great time just being a family.
Wednesday we went to MGM Studios and then back to Magic Kingdon. Had a great day and were totally worn out. That evening GKTW provided Laura and I with reservations and a gift certificate to Cascades restaurant at the Grand Hyatt Cypress Gardens. We had a great table at the window overlooking a lake. It was a great evening. GKTW volunteers were with Ali and Nick all evening and the kids had a ball playing games. etc. It was great for all of us and Laura and I were grateful that we had the opportunity to be alone for a few hours. It was almost like we were on a real date.
I plan to post more later along with pictures (we took about 500).
Quote of the Day
There's No Place Like Home
Saturday, April 20, 2002 at 03:51 AM (CDT)
We are just about to wake Nick and Ali for the big trip to Disney. They were so excited last night that it was tough to get them to bed.
Hope everyone has a great week. We should have great pics and stories when we get back.
Sunday, April 07, 2002 at 03:52 PM (CDT)
Nick is back home!! He and Laura arrived back in Olathe yesterday afternoon. Laura and I will be administering IV antibiotics to hom for the next week to ensure that the infection clears. Luckily he did not require surgery to remove the port. Something actually went our way...
Thanks to everyone for your thoughts and prayers. They worked!!
Quote of the Day:
"The path to success is to take massive, determined action."
- Anthony Robbins
Wednesday, April 03, 2002 at 12:14 PM (CST)
Sorry for the lapse between posts.
Nick and Laura went for a clinic visit yesterday and ended up being admitted. Nick had a fever of 103. They gave him blood and are getting ready to start IV antibiotics. It appears that he has contracted a staph infection possibly in his port a cath. If so, this will require surgery to remove the port and place a new one. He is not feeling well at all and neither he or Laura enjoys being an inpatient.
Laura must have a sixth sense as I woke up at 3:15AM on Monday morning and found her doing laundry, cleaning the house and crying...she knew something was up and thought they may be admitted.
Nick and our entire family could really us your prayers and thoughts right now. We hope this is just another hurdle on our roller coaster of a life and that they can get this fixed withour surgery.
I will try to update daily until we get a handle on this latest setback.
Quote of the Day:
Do you not see how necessary a world of pains and troubles is to school an intelligence and make it a soul?
John Keats
Tuesday, March 12, 2002 at 07:46 PM (CST)
Nick has been feeling OK lately. We have noticed that he is sleeping alot more than normal. This appears to be one of the side effects from his cranial radiation. He has been falling asleep really early each evening and taking naps (both unusual for him). When he is awake he is in a good mood and interested in playing all the time.
He has been talking about Disney alot. He told me tonite that if he got to meet Mickey Mouse "that would be the best day ever". We are definitely going to try and get those two together.
Ali is at the YMCA tonite. They built a new YMCA near our home and she and her friend Olivia have been going to a class on Tuesdays and Thursdays to learn how to use the equipment. If they pass a test this Thursday they will be able to use all of the equipment in the gym at certain times during the week. The two of them have been having a ball going together. They challenged Nick and I to a game of basketball I before I took them tonite. Nick had a ball being on Dad's team.
Quote of the Day:
Perhaps the most valuable result of all education is the ability to make yourself do the thing you have to do, when it ought to be done, whether you like it or not.
Thomas Huxley (1825-1895)
English Biologist and Educator
Wednesday, February 27, 2002 at 07:44 AM (CST)
Nick has been feeling pretty good lately. His ANC counts were low last week but have rebounded nicely and are currently at 1950. His next clinic visit is next Monday to have his counts checked again.
Friday evening the Make A Wish Faoundation is coming to visit us in our home. Nick is excited about his trip to Disney. We are planning to stay a couple of extra days to take the kids to the beach. Neither has been to the ocean before so should be quite an experience.
Sorry for the long period between posts. I will try to update each Monday or Tuesday throughout Maintenance. More often if important events occur.
Quote of the Day:
"Whatever our souls are made of, his and mine are the same."
- Emily Bronte
Tuesday February 12, 2002 7:00 PM CST
HE DID IT!!!!! Your prayers, thoughts, kindness and caring have got us through!!
8.5 months after experiencing his CNS relapse, Nick is in Maintenance!!! We received the great news yesterday and got a follow-up call today to confirm that the bone marrow and spinal fluid they pulled from him yesterday shows no sign of leukemia.
We are so excited and happy for him. It has been a painful past few months, certainly the worst time of our lives, but he has pulled through. This is a huge step towards getting him permanently cured. Maintenance for a leukemia patient is the last phase of treatment, and consists of low dose chemotherapy and less frequent clinic visits. Barring any unforseen infections or high fevers he will not be an inpatient throughout Maintenance. This is not to say that Nick is out of the woods, only that he has been able to get through the intensive chemotherapy and radiation regimen that he has been on since he relapsed last June. It is certainly a time to celebrate, and celebrate we will.
Nick has been granted a wish through the Make-A-Wish foundation. For a 5 year old the ultimate is...you guessed it, DisneyWorld. Nick's social worker has submitted the application to the foundation and they will be visiting us in our home soon to ask him what he wishes for. Then it off to Florida and the complete VIP treatment at the parks. It is my understanding that they treat these children like kings and "give them the world". He will get the royal treatment and have the opportunity to experience the parks unlike any other vacationers. He is so excited!! We are tentatively planning on taking the trip in late April if all goes according to plan. This will be a great chance for him to esccape from the rigors of treatment for a few days and really be a kid again. Make-A-Wish Foundation is an outstanding organization and makes these wishes available through the generosity of corporations and private citizens.
Laura, Ali, Nick and I cannot begin to tell you all how much you mean to us. It really gives a sense of true human spirit to know so many of you are pulling for Nick and praying for him, thinking of him, loving him. You are truly special people. Thank you.
More later.
Quote of the Day:
HOORAY!!!!!!
Thursday February 7, 2002 7:31 PM CST
Attention TNT Runners:
TEAM IN TRAINING
National
Personal Stories Wanted
We need your assistance. A writer who is developing a book about Team
In Training (TNT) is looking for personal stories from participants.
If TNT has impacted your life or the life of someone you love, we
invite you to share your story by clicking on this page.
http://www.leukemia-lymphoma.org/all_page?item_id=57359
Please see the link below to go directly to the page.
Tuesday February 5, 2002 10:10 AM CST
Nick is finished with his radiation!!!!
His last session was Monday Janaury 28, 2002. I was out of town in Atlanta so he and Laura went. What a relief to be finished with another portion of the treatments. Thanks to everyone for their support. It means alot to our family to know so many of you are pulling for Nick. You are truly special people.
Nick had a clinic visit yesterday. His counts were a little low to be able to do the spinal tap and bone marrow that are necessary to get him into maintenance (his last phase). We will giving him Neupogen shots this week at home to boost his immunity and try again next Monday. Rosie will be going with Laura and Nick. His ANC yesterday was 851 and they wanted him at 1000. He should have no problems being there by Monday.
Thanks to everyone posting to the guestbook. It is wonderful to read how so many of you have overcome challenges in your lives. Keep them coming.
Quote of the day:
Five great enemies to peace inhabit with us: vice, avarice,ambition, envy, anger, and pride. If those enemies were
to be banished, we should infallibly enjoy perpetual peace.
Francesco Petrarch (1304-1374)
Italian Poet
Saturday January 26, 2002 6:18 PM CST
Nick has completed his third week of radiation. He has only one day left, Monday and then he is finished. It could not have come soon enough as the radiation has really started to take its toll on him. He is extremely lethargic, is getting frequent nose bleeds and headaches, has dark circles under his eyes, lost his hair and wants to sleep alot. This past week and a half have been real tough. We are so thankful that it is coming to an end. We know that this was a necessary part of the treatment protocol but it was one of the most difficult things we have had to go through. Now, on to Maintenance and hopefully he will complete it this time with no more difficulty. He has been through so much, he really needs your prayers to keep him free of the leukemia.
Thought you all would enjoy the following:
The government recently calculated the cost of raising a child from birth to 18 and came up with $160,140 for a middle income family. Talk about sticker shock! That doesn't even touch college tuition.
But $160,140 isn't so bad if you break it down. It translates into $8,896.66 a year, $741.38 a month, or $171.08 a week. That's a mere $24.24 a day! Just over a dollar an hour.
Still, you might think the best financial advice says don't have children if you want to be "rich." It is just the opposite. What do your get for your $160,140?
Naming rights. First, middle, and last!
Glimpses of God every day.
Giggles under the covers every night.
More love than your heart can hold.
Butterfly kisses and Velcro hugs.
Endless wonder over rocks, ants, clouds, and warm cookies.
A hand to hold, usually covered with jam.
A partner for blowing bubbles, flying kites, building sandcastles, and skipping down the sidewalk in the pouring rain.
Someone to laugh yourself silly with no matter what the boss said or how your stocks performed that day.
For $160,140, you never have to grow up.
You get to finger-paint, carve pumpkins, play hide-and-seek, catch lightning bugs, and never stop believing in Santa Claus.
You have an excuse to keep: reading the Adventures of Piglet and Pooh,watching Saturday morning cartoons, going to Disney movies, and wishing on stars.
You get to frame rainbows, hearts, and flowers under refrigerator magnets and collect spray painted noodle wreaths for Christmas, handprints set in clay for Mother's Day, and cards with backward letters for Father's Day.
For $160,140, there is no greater bang for your buck.
You get to be a hero just for retrieving a Frisbee off the garage roof, taking the training wheels off the bike, removing a splinter,filling a wading pool, coaxing a wad of gum out of bangs, and coaching a baseball team that never wins but always gets treated to ice cream regardless.
You get a front row seat to history to witness the first step, first word, first bra, first date, and first time behind the wheel.
You get to be immortal.
You get another branch added to your family tree, and if you're lucky,a long list of limbs in your obituary called grandchildren.
You get an education in psychology,nursing, criminal justice,communications, and human sexuality that no college can match.
In the eyes of a child, you rank right up there with God.
You have all the power to heal a boo-boo, scare away the monsters under the bed, patch a broken heart, police a slumber party, ground them forever, and love them without limits, so one day they will, like
you, love without counting the cost.
ENJOY YOUR KIDS AND GRANDKIDS.
Tuesday January 22, 2002 6:13 AM CST
Nick has completed over two weeks of his radiation and has only five days left. His last day is Monday 1/28/02. The spinal portion of the treatments are complete and the remaining days will treat only his brain (cranial radiation).
Nick has been experiencing heavy hair loss the past few days. Last night he and I decided the best thing to do would be to shave it all off. We did and he loves it!! It really helped that Ali and her friend Olivia showed up right after we were finished and both told Nick how "cool" he looked. That brought a big smile to his face. He thinks he looks like all of the big boys at Ali's school.
Thanks to everyone for all of the guestbook entries. We love reading the stories of the runners and it is always so nice to hear from family and friends. Keep writing!!
Quote of the Day:
Sorrow is a form of self-pity.
John F. Kennedy (1917-1963)
Saturday, January 12, 2002 at 08:06 AM (CST)
Nick has completed his first week of cranial and spinal radiation. He came through it without much difficulty. He experienced some headaches each evening and complained a little of backpain. In addition, he was quite lethargic in the evenings and quite melancholy. All of these types of side effects are very normal. 5 treatments down, 11 to go. Thank youto everyone for your kind words and prayers in this difficult time. It really means alot to our family to know that so many of you are keeping Nick in your thoughts.
Thank you to the many runners who have left a message in the guestbook. The overall theme of the messages is that participating in TNT is a very fulfilling experience, so much so that I may be temtped to give it a go in the future (if my legs and feet would hold up). We will see. I certainly have the right motivation in Nick. I think it would be a great experience. Congratulations to all of the runners and thank you for being a part of TNT.
Jeff - better get that checkbook out and anty up for all of the stories.
Please continue to keep Nick in your thoughts and prayers. I am so thankful that he is getting a break from the treatments this weekend. He will be back at it on Monday.
Ali was asked this week to join an uppper level spelling group at ther school. She has done so well at keeping her grades up during all of Nick's treatments. I know it is hard on her but it does not show in her school work. We are so proud of her. She is getting ready to start swimming and karate at the new YMCA near our home.
The weather in KC has been unbelieveable. Today it is supposed to be sunny and 50, and nearly reaching 60 tommorrow. Thinking about getting the golf clubs out...definitely have the itch.
Quote of the Day:
Nothing is to be feared but fear.
Bacon (1561-1626)
Monday, January 07, 2002 at 06:37 AM (CST)
Nick begins his radiation therapy today. Please keep him in your prayers.
Laura, Ali, Nick and I went to the radiation clinic last Thursday. Nick was put to sleep and they made a mask that will be used to lock his head in place for the treatments. In addition, they placed permanent tatoos on his body for use in alignment.
Nick will be going in for radiation each day for 16 days in a row (no Saturdays or Sundays) at 2:00PM. The most difficult part for him is that he will not be able to eat for 6 hours prior the visit. To compound this he is on a very strong steroid and wants to eat constantly. Should be interesting.
Thank you to everyone for their support. Anxious to hear how the Disney marathon went for Nick's team. Hopefully we will get an update soon.
Quote of the day:
Is not prayer a study of truth, a sally of the soul into the unfound infinite? - No man ever prayed heartily without
learning something.
Emerson
Sunday, December 30, 2001 at 07:10 AM (CST)
We are hoping that everyone had a great holiday.
Nick and Laura toured the radiation oncology clinic on Friday. This is where Nick will receive his radiation therapy. When I spoke with him about the visit he seemed pretty comfortable with everything. He is under the impression that it is a big camera that takes pictures inside your body and does not at all seem apprehensive. With all he has been through nothing is to big of a deal to him. Laura said he behaved wonderfully during the visit and the staff all took to him. He has such a great personality that people just seem to smile when they are around him (keeps his devisish side for home I guess).
The current plan for the radiation is to have his counts taken on Monday 12/31/01, go to the radiation clinic on Thursday 1/3/01 for measurements, tatooing and to make a "mask", and then to start the treatments on Monday 1/7/01. There will be a total of 16 sessions Monday through Friday so we should finish up late January.
Other than Nick we are all apprehensive and a little scared about this phase but we know in our hearts that this type of treatment, along with the chemo that he has been on will give Nick the best chance for cure and survival. The choices we make for him are based upon the input from our physicians, nurses, clinicians and alot of prayer and soul searching. While this phase has caused us the most apprehension, we know that it is the right thing to do and without it he may not make it.
So onward we march with the support of family, friends, neighbors and alot of you we have never met. I cannot begin to thank you all enough.
Quote of the day:
"We gain strength, and courage, and confidence by each experience in which
we really stop to look fear in the face...
we must do that which we think we cannot."
-- Eleanor Roosevelt
Tuesday, December 25, 2001 at 10:01 AM (CST)
Merry Christmas Everyone!!!
Monday, December 17, 2001 at 01:58 PM (CST)
Nick had his clinic visit this morning. The visit included a checkup, blood test and a spinal tap to administer chemotherapy to his spinal fluid. Unfortunately Nick has an ANC (absolute neutrophil count) of 474 and is considered neutropenic. This type of compromised immunity system will preclude him from being able to see his relatives (cousins!) during the holidays. The physicians advise that a patient with an ANC of less than 500 be kept away from any situation where he could pick up a bug. Any acquired fevers, viruses, etc. will require immediate hospitalization. He just cannot seem to get a break.
According to Laura the spinal tap went well. The good news is that this was his last bit of chemo until his radiation is complete. It appears at this point that his ANC will be checked again on December 31, 2001 and if it is at 1000 or higher he will begin radiation that day. Radiation will continue for 16 days (Saturdays and Sundays off). By mid-January he should be finished with radiation and onto Maintenance.
Nick, like all 5 year olds, has a x-mas list a mile long. Laura and I spent Saturday afternoon shopping for the kids. We had a lot of fun and did not have to fight to many crowds (suprisingly). Ali and her friend/neighbor Olivia watched Nick and each earned money for babysitting. Laura took them out shopping later in the day and then out to dinner. They are both growing up so fast and have been friends since we built our house 7 years ago. This was their 3rd time babysitting Nick together and they did very well. We still have some shopping to do but we are nearly finished (a record for us).
Cathy asked about the fundraising that is mentioned on the site from time to time. This fundraising is part of Team in Training -–Leukemia Society of America. These runners have each committed to raise a specific amount of money and then to run in a marathon in January at Disney World. Nick was asked to be a sponsor child and each runner has a badge to wear while running with his picture on it. They have all commented on what an inspiration he is to them. We feel really lucky to be a part of this event. All funds raised by team in Training benefit the Leukemia Society of America. Keep up the good work and best of luck in the marathon. Runners still seeking pledges are encouraged to post in the guestbook with contact information.
We wish you and your loved ones a safe holiday season filled with the treasures of life... family and friends, peace and prosperity, good health, goodwill, and good cheer.
Mike, Laura, Ali, Nick
Wednesday, December 12, 2001 at 03:49 PM (CST)
Nick is doing fine right now. He has no clinic visits this week!! He has a visit (including a spinal tap) for next Monday.
Hope everyone is getting ready for the holidays. It does not feel like winter yet in KC. It was in the 60s last week. I remember x-mas in Iowa when there was so much snow...
Thought this was pretty neat: (I wish you all enough)
"I Wish You Enough"
Recently I overheard a father and daughter in their last moments together.
They had announced her departure and standing near the security gate, they
hugged and he said, " I love you. I wish you
enough."
She said, "Daddy, our life together has been more than enough. Your love is
all I ever needed. I wish you enough, too, Daddy." They kissed and she left.
He walked over toward the window where I was seated. Standing there I could
see he wanted and needed to cry. I tried not to intrude on his privacy, but
he welcomed me in by asking, "Did you ever say good-bye to someone knowing
it would be forever?"
"Yes, I have," I replied. Saying that brought back memories I had of
expressing my love and appreciation for all my Dad had done for me.
Recognizing that his days were limited, I took the time to tell him face to
face how much he meant to me. So I knew what this man was
experiencing. "Forgive me for asking, but why is this a forever good-bye?" I
asked. "I am old and she lives much too far away. I have challenges ahead
and the reality is, the next trip back would be for my funeral, " he said.
"When you were saying good-bye I heard you say, 'I wish you enough." May I
ask what that means?"
He began to smile. "That's a wish that has been handed down from other
generations. My parents used to say it to everyone." He paused for a moment
and looking up as if trying to remember it in detail, he smiled even more.
"When we said 'I wish you enough,' we were wanting the other person to have
a life filled with just enough good things to sustain them," he continued
and then turning toward me he shared the following as if he were reciting it
from memory.
I wish you enough sun to keep your attitude bright.
I wish you enough rain to appreciate the sun more.
I wish you enough happiness to keep your spirit alive.
I wish you enough pain so that the smallest joys in life appear much bigger.
I wish you enough gain to satisfy your wanting. I wish you enough loss to
appreciate all that you possess.
I wish you enough "Hello's" to get you through the final "Good-bye."
He then began to sob and walked away.
Monday, December 03, 2001 at 07:57 AM (CST)
Nick and Laura are back home. They arrived back in Olathe around 11:00AM on Sunday. Both were a little tired but very glad to be home. Nick has his next clinic visit scheduled for this Thursday. He is nearly complete with all of his high dose chemo (he gets a little more in the clinic) and unless he runs into furhter trouble he is finished with his inpatient stays for chemo infusion. This may seem like a small victory but to us it is a huge milestone.
Ali's slumber party was a huge success. The girls got around 3-4 hours sleep but had a ball. They were all wound up when I went to pick her up around noon on Saturday. I know she will miss Kaitlin when she moves to Georgia later this month. Ali's best frined Stephanie won the all-school spelling bee last Friday. She is in fourth grade and was up against a fifth grader for the title and won. Way to go Stephanie!! Ali told me she was so happy that she cried. Her and Stephanie have been best friends since kindergarten.
Hope all is well with everyone. Jeff - if you get a deer I could sure use some deer sausage. Also, a bag of Bud's beef jerky sounds pretty good right about now. Nick asks almost daily when we are going back to 'Uncle Jeff's lakehoue". He wants to see his older cousins in the worst way. We will plan a trip next spring.
Please be sure to sign the guestbook!!
Quote of the Day:
It is easy to believe that something must be true because
everyone else believes it. But the truth often only comes
to light by daring to question the unquestionable, by
doubting notions which are so commonly believed that they
are taken for granted.
NN
Friday, November 30, 2001 at 08:57 AM (CST)
Nick made his counts on Thursday. He was admitted mid-morning and will be there until Saturday evening. Both he and Laura seem to be coping well. He is in Room 4616 if you would like to call and say hi. they do so look forward to getting phone calls.
Ali has a surprise going-away sleep over for one of her friends tonite. These brave parents are hosting several 10 year old girls for 16 hours. I know she will have a ball.
Will update saturday when I know they are coming home. Thanks for all of the nice comments in the guestbook. Have not heard from many of the TNT runners lately. How is it going??
Quote of the Day:
What does not destroy me, makes me strong.
Nietzsche (1844-1900)
Wednesday, November 28, 2001 at 06:37 AM (CST)
Nick had a clinic visit on Tuesday. He was to get his ANC checked prior to getting admitted for his final Methotrexate dosing. The good news is that his ANC was 1250, the bad news is that they saw a developing ear infection in his right ear and orderd Zithromax antiobiotics. He will go again on Thursday to try for the admittance.
Laura and I met with the Radiation Oncologist for an hour on Tuesday morning at the clinic. She explained the radiation procedures, side effects (short and long term), answered questions, etc. She seemed very nice and easy to talk to. She has invited us out for a tour prior to starting the treatments. She has just moved from midtown KC to a new location about 10 minutes from our house. This will make it much easier on laura and Nick. Nick will have a total of 16 treatments. He will be getting 1500 rads to his spine (10 visits) and 2400 rads to his brain (16 visits). She assured us that at the 1500 rad level in the spine there should be no loss of growth. It does sound like there can be alot side effects but the first goal is to save his life and cure him of the leukemia. We will deal with side effects as they present. Both Laura and I are much more apprehensive about the radiation than we have been about the chemo. It may be because we have lived in the chemo world for almost 2 years now. They are planning to begin the treatments right after the first of the year.
When Nick completes the 16 radiation treatments he will be finished with his intensive treatment regimen and will be placed on Maintenance. If all goes well, this lower dose (and final) phase will last until June, 2003. We definitely have alot in front of us, but we should be able to see the light at the end of the tunnel in the coming months.
Hope all is well with everyone and that you had an enjoyable Thanksgiving. I will try to post Thursday to let everyone know if he gets admitted. And yes Jeff I will put some new pictures up soon. Laura and I just got a digital camera and once I figure out how to work it I will put new pics up often.
Quote of the Day
Happy the man who can endure the highest
and the lowest fortune.
He, who has endured such vicissitudes with equanimity,
has deprived misfortune of its power.
Seneca (B.C. 3-65 A.D.)
Roman Philosopher, Dramatist, and Statesman
Thursday, November 22, 2001 at 02:46 PM (CST)
Of all the profound gestures of the human heart, thanksgiving is the most communal and the most basic. Its presence creates a universal bond that transcends differences throughout the world.
Happy Thanksgiving!!
Saturday, November 17, 2001 at 07:25 PM (CST)
I spoke to you today and you smiled,
But the smile never reached your eyes.
Standing there with your colleague at the desk, stacked with neat manila
charts.You politely waited till I moved away, And then, your heads bowed, as if in prayer above the papers that you
studied.
Whose child is it today?
Where is the parent that sits in silence and in grief? Are there arms comforting them or do they feel alone
As everything they trusted and have known crashes around them?
How many times have you had to see this happen? How many times more are you
willing to be their witness?
When you were fresh and young in the scrubbed halls how did that first child
with frightened eyes affect you?
Did it frighten you too?
Did you dream of them and their tears?
Did you flinch when you saw them pale and bald in the spotlight of morning
rounds?
You have seen so many children come and go, now. You have rejoiced when they come in to see you – chattering about their plans for the future, fresh and glowing – their treatment’s a fading memory.
You have wept with grieving parents when there was nothing more man could
do. You have wept that the science is so imperfect, so flawed so impotent to
soothe all human misery.
But, you do the best you can, with what you’ve got.
You do the best you can with what you’ve been given.
Thank you.
And if I misunderstand sometimes, If I take your mood and tone in the wrong
way I know you’ve seen this before too, in the heartbroken and the
frightened. And if you are new to this, as I am, then let me help you learn how to deal
with people in my situation.
Pray long and hard about the decision to become a physician for these
children. We will require much of you because we so want to see God work His healing through your hands.
It is a lot to ask, I know. But I wanted you to understand where we are,
Where you one day might be.
Thank you for doing the best you can with what you’ve got, The best you can with what you have been given.
Monday, November 12, 2001 at 02:44 PM (CST)
Thursday, November 08, 2001 at 07:36 PM (CST)
Nick and Laura are back home!! they arrived back in Olathe at around 10:00PM last night. Nick was asleep in the car when they pulled in. I put him straight to bed and he slept like a log. Much better than being waken every few hours for vitals.
Just wanted to let everyone know.
Thanks for all the well wishes. Can you believe that Thanksgiving is 2 weeks from today??
Quote of the day:
Only the fool hopes to repeat an experience; the wise man knows that every experience is to be viewed as a blessing. Whatever we try to deny or reject is precisely what we have need of; it is our very need which often paralyzes us, prevents us from welcoming a (good or bad) experience.
- Henry Miller-
Monday, November 05, 2001 at 10:30 AM (CST)
Nick's ANC (absolute neutrophil count) was 1767 this morning when tested at the clinic. He was admitted at 9:45 AM for his methotrexate infusion. He and Laura will be at Children's Mercy Hospital, Room 4611 until at least Wednesday evening. He has only one more of these infusions and then on to the cranial radiation.
We are so glad that he made counts. Want to get on with these infusions and through with the radiation. If all goes well (like that ever happens) he could be back on maintenance by late January, 2002. This would last until June, 2003. We are very hopeful that this thing is going to get back on track and our son will be cured of this terrible disease. We are feeling pretty positive right now. We hope you are too.
Ali is out of school today and is at the hospital with Nick and Laura. She has made so many great friends with some of the patients on the Hematology/Oncology floor at Children's. Some of these kids are in for months and they are so excited when Ali is able to spend time with them. She is so great with these kids. We are so lucky to have a daughter that sees through peoples exterior and forges friendships with people who really need kindness. Unfortunately some of these families do not have the luxury of being with their children 24/7 during their hospital stays. Social, financial and other situations prevent this. These are the children that Ali spends the day with and she is a much better person for doing so.
The Team in Training group that Nick is the sponsor child for is holding a All-U-Can eat Mostaccioli Pasta and Bread fundraising event at DaVinci's Pasta Shop and Deli on Wednesday November 14, 2001 from 5:00PM-8:00PM. DaVinci's is located at 4671 Indian Creek Parkway in the Foxhill Retail Center (106th and Roe, across from Suburban Lawn and Garden). If you are able to, we would love it if you could come out and support the team in this event. These runners have been working for quite a while on their marathon training and fundraising. Laura and I really count on the Luekemia and Lymphoma Society for so much. Pleae help if you can (and enjoy a great meal while you are at it).
Please send well wishes Nick's way. Hope this finds everyone doing great. We hope to see and speak to all of you soon.
Quote for the Day:
If you do not think about the future, you cannot have one. - John Galswothy
Friday, November 02, 2001 at 06:30 PM (CST)
Nick had a clinic visit yesterday. His ANC was 472, 28 points shy of getting admitted for his Methotrexate dose. He and Laura will return to the clinic first thing Monday AM to try again. We feel pretty good about his chances to make it.
Nick and Ali both had a great halloween. It was so much fun seeing them dressed up. Nick was a red Power Ranger and Ali was a baby. Ali went out trick or treating with her firned Olivia and her family, while Nick, Laura and I went with some of Nick's friends (Josh, Ellen and Megan) and their families. I think the kids have enough candy to last a year!! One of the homes in our neighborhood had a haunted house setup in their garage. Depending on age, the scare increased. Nick had nightmares about the "witch in his dream". I think it was a combination of the hounted house and the candy he ate. They both had a ball and can't wait until next year.
We plan to update everyone on Monday with the results of the ANC test. We really want to get on with this. As it is, it appears now that Nick's cranial radiation will start the week of X-mas. Yuk!! He has one more Methotrexate infusion after this one and then on to that phase.
Hope everyone had a great halloween. Can you believe it is November already. Weather in KC is absolutely gorgeous!!
Quote of the Day:
The eye speaks with an eloquence and truthfulness surpassing
speech. It is the window out of which the winged thoughts
often fly unwittingly. It is the tiny magic mirror on whose
crystal surface the moods of feeling fitfully play, like the
sunlight and shadow on a still stream.
Tuckerman (1813-1871)
Monday, October 29, 2001 at 12:30 PM (CST)
Welcome to Holland
When you're going to have a baby, it's like planning a fabulous vacation trip -
to Italy. You buy a bunch of guide books and make your wonderful plans. The
Coliseum. The Michelangelo David. The gondolas in Venice. You may learn some
handy phrases in Italian. It's all very exciting.
After months of eager anticipation, the day finally arrives. You pack your bags
and off you go. Several hours later, the plane lands. The stewardess comes in
and says, "Welcome to Holland."
"Holland?!?" you say. "What do you mean Holland?? I signed up for Italy! I'm
supposed to be in Italy. All my life I've dreamed of going to Italy."
But there's been a change in the flight plan. They've landed in Holland and
there you must stay.
The important thing is that they haven't taken you to a horrible, disgusting,
filthy place, full of pestilence, famine and disease. It's just a different
place.
So you must go out and buy new guide books. And you must learn a whole new
language. And you will meet a whole new group of people you would never have
met.
It's just a different place. It's slower-paced than Italy, less flashy than
Italy. But after you've been there for a while and you catch your breath, you
look around.... and you begin to notice that Holland has windmills....and
Holland has tulips. Holland even has Rembrandts.
But everyone you know is busy coming and going from Italy... and they're all
bragging about what a wonderful time they had there. And for the rest of your
life, you will say "Yes, that's where I was supposed to go. That's what I had
planned."
And the pain of that will never, ever, ever, ever go away... because the loss of
that dream is a very very significant loss.
But... if you spend your life mourning the fact that you didn't get to Italy,
you may never be free to enjoy the very special, the very lovely things ...
about Holland.
Thursday, October 25, 2001 at 01:56 PM (CDT)
Nick had a clinic visit this AM. He had his counts checked in anticipation of being admitted for his next to last Methotrexate induction. Unfortunately his counts (immunity system) were to low to admit him. His ANC was just over 200. They plan to retest him next Thursday in the hope of getting him admitted and through with this round.
We found out today that they have moved Nick's cranial (brain) radiation up to December. With the new schedule he should finish up in early to mid-January. This is all dependent on him getting through these final two Methotrexate inductions and keeping his counts up. Ultimately this will result in Nick getting back on Maintenance in late January (we hope). If everything goes well he will be on maintenance until June, 2003. This means that he will be on chemo throughout his kindergarten year and into the summer. The cranial radiation scares me as it can result in aloss of math abilities, make learning much more difficlt and could result in a future brain tumor and other complications. This wil be our first, and hopefully only, exposure to radiation therapy. While I know it needs to be done, I am much more apprehensive about this than I have been about the chemo. We will get through it. I really hate seeing him robbed of his childhood. He is such a bright child and I am hopeful that his cognitive abilities are not badly damaged.
I have included a new link below for those interested in learning more about radiation therapy. It is a pretty good article and I encourage everyone to take a look.
All in all Nick has been acting pretty normal and active the past few weeks. The weather in KC has been outstanding and he has had alot of opportunities to play outside with his friends. Laura and he have been working on his writing, coloring, counting etc. in anticipation of kidergarten in fall, 2002. He is looking forward to going to school.
We had Ali's first parent/teacher conference and report card last week. She got straight A's (as always)!! We are so proud of her. Speaking with her teacher, I could really tell that she enjoys having her in class. She is really pleased with her reading, writing, spelling and mathematics. Ali is such a bright girl that if she stays focused she can do anything she wants to do. Her and I worked on the parts of the eye and ear in preparation for a test and she aced it. Her spelling tests have been in the 95%-100% range always, and she scored 198 out of 200 on her life words test. I could not be more proud of her.
Hope this finds everyone well.
Quote of the Day:
It is an inexorable Law of Nature that bad must follow good, that decline must follow a rise. To feel that we can rest on our achievements is a dangerous fallacy. Inner strength can overcome anything that occurs outside.
I Ching (B.C. 1150?)
Wednesday, October 17, 2001 at 06:36 AM (CDT)
Nick had a clinic visit on Monday. His ANC was 1035 so we are feeling pretty good. He had a spinal tap to administer some medicine. They have had to up his "sleepy" medicine as he has been trying to move around during the past couple of taps. They need him to lay real still for these procedures.
Nick had a great birthday. Thanks to everyne who sent a gift, card, etc. He loved getting them. The TNT team presented him with a handmade PokeMon quilt and pillow. They are beautiful. I plan to post some burthday pictures here when they are developed.
I hope this finds everyone doing well.
Quote of the Day
Life is 10 percent what you make it and 90 percent how you take it.
~ Irving Berlin ~
Wednesday, October 10, 2001 at 06:33 PM (CDT)
HAPPY BIRTHDAY NICK. TODAY YOU ARE FIVE!
Hold Within Your Arms a Sun
H old within your arms a sun
A nd let it smile and wish you well.
P lay with it, and when you're done,
P ut it where you'll never tell.
Y our sun will smile just for you,
B eing yours, and yours alone,
I nside your palace, out of view,
R esting in a place unknown.
T he sun we wish for you is bright,
H appy doing what suns will:
D aring to hold off the night
A s loves and dreams your future fill,
Y our cares caress and sorrows still.
Saturday, October 06, 2001 at 05:00 PM (CDT)
Nick and Laura are back home!! They arrived back in Olathe on Thursday evening around 9:30PM. Nick is doing just great. He is feeling well and has been in a great mood.
Thanks to everyone who called and sent notes and cards. We really appreciate everyones kindness.
Nick will be going to the clinic on Monday for some tests and chemo. His next overnight stay is scheduled in three weeks barring any unforseen problems.
Nick turns 5 in four days. His birthday is October 10th. Several have written and called to get our address.
Nick Serum
18460 W 160th Terrace
Olathe, KS 66062
Thanks to everyone who has already sent a card and/or gift. He really loves getting those cards and carries them around with him for everyone to see. I would love it if he could get a great big bunch of them!!
Hope this finds everyone doing well.
Quote of the Day:
To array a man's will against his sickness is the supreme art of medicine. -- Henry Ward Beecher
Tuesday, October 02, 2001 at 06:30 PM (CDT)
Nick made his counts today. His ANC was 511 so he just barely made it. He and Laura were admitted at around noon today and will be there until at least Thursday evening. Nick is receiving a 24 hour Methotrexate dose that bagan at 6:00PM this evening. They plan to keep him for atleast 24 hours of observation following the end of the treatment.
Please say a prayer for Nick. This particular medicine is very powerful and can had very severe effects on him.
I plan to update everyone tomorrow.
Quote of the The Day:
We are continually faced with a series of great opportunities brilliantly disguised as insoluble problems.
John W. Gardner
Sunday, September 30, 2001 at 04:06 PM (CDT)
The TNT auction last night was a huge success. It is my understanding that the Amigos 4 Nick team raised in excess of $4000. Way to go!! Laura and I had a wonderful time and met alot of great people. The 2 condo weekends at Lake of the Ozarks that Jeff donated went for $435 and $500 for a total of $935. Thanks Jeff. Those really helped get that total up. Gene and I went in on a bid for a golf package, including dinner for 4, and we won. Can't wait to get out and use that.
I just got off the phone after talking to Gladys Serum. As many of you know, Gladys lives at 38th and 3rd in NYC (Manhattan). She gave me alot of information about the terrorist attack that only a local would know. It was great talking to her and we are so thankful that she is OK. Everyone there was personally touched in some way. They are finding it hard to get back to a sense of normalcy and she had nothing but great things to say about the mayor of NYC. Best of luck to everyone dealing with this tragedy.
Nick is feeling great today. I am really hopeful that he gets to go in on Tuesday. I have a feeling he will. The TNT runners had great presents for him, he was so excited. One of the presents were bath animals and toys, Nick immediately stripped his clothes off and took a bath. He stayed in ther for over 30 minutes, and would have stayed longer if we had not made him get out and get dressed. They also had a gift for Ali which really made her day. Laura's supervisor Susan also sent some gifts for Nick. Hot wheels trucks!! Nick and I have been playing with them all day, setting up ramps and jumps and having a ball. Nick is playing outside with Ellen and Josh right now. It is a beautiful day in KS (Sunny, 72) and I wanted him to get some fresh air.
Laura's sister Lisa and her husband Doug are here today. They flew in this AM on a corporate jet for the NASCAR race at the new Kansas Speedway. They are only here for the day so Laura and Ali are spending the day with Lisa visiting relatives, shopping and eating out. Laura really misses Lisa and is so happy when she comes to town.
More later...
Quote of the Day:
Go Chiefs!!
Thursday, September 27, 2001 at 07:36 PM (CDT)
Nick did not make counts today. His ANC was 420. He was not admitted for his Methotrexate chemotherapy. Laura and he will return to the clinic on Monday to try again. We are praying that he makes his counts and gets on with this important medication.
Nick turn 5 on October 10, 2001! He is so excited. He asked me today how many days until his b-day. When I told him about 15 days, he responded with his "oh man". 15 days to a 4 year old may as well be a lifetime. It will be here before we all know it. With what he is dealing with, birthdays are that much more precious. We hope to get to a point in future years when we can have a HUGE party. Hopefully soon.
The 4 Amigos TNT team, of which Nick is a sponsor child, is having a huge auction fundraiser this Saturday, September 29th, as Freddy T's in Olathe at 135th and Mur Len. I would like everyone to come out to this important event. A good time is sure to be had. I have added a link below to get to their web site. It is a great site and has an area where you can see the list of the auction items. They have done a great jod with getting donations, and Debbie has been working her tail off helping them find donations. Thanks to each of you and I hope to see many of you there on Saturday.
Quote of the day:
What lies behind us and what lies before us are small matters compared to what lies within us. Oliver Wendell Holmes
Friday, September 21, 2001 at 07:41 PM (CDT)
Nick had a pretty rough clinic visit on Thursday. Dr. Woods had a very difficult time with the spinal tap and required 6 sticks in the spine before he had the needle seated properly. Nick did not take this very well needless to say. I could tell it put quite a bit of stress on Laura. I plan to go with them for the next one to lend my support.
The good news is that Nick's ANC is at 1058 which is a nice jump from last week. He is right on track to get admitted next Thursday for another round of Methotrexate. He will be in about 2-3 days. My plan is to get him completely hydrated prior to having him admitted. We are hopeful that doing this will allow him to get in and out as soon as possible. We will see.
Ali has a soccer game tomorrow. With Nick's ANC above 1000 we may all get to go together. We have only been able to do that once this season. Hopefully he will feel up to it.
Hope this message finds all of you in good health and good spirits. Wasn't that a wonderful speech by President Bush last night? His address to Congress and the nation was well written but his delivery of it mnakes him appear so human. I am completely behind him and know he will do the right thing. God bless America.
Quote of the Day:
Of one thing I am certain, the body is not the measure of healing - peace is the measure. - George Melton
Monday, September 17, 2001 at 09:12 AM (CDT)
Nick had a terrific weekend. Tyler Beller sent home a big stack of Japanese holographic Pokemon cards with Ali and these were a huge hit with Nick. Thanks Tyler!! Nick has not let them out of his sight since Ali brought them home.
Nick had an opportunity to meet several Team in Training participants this weekend. Thanks to Deanna Peterson, Gretchen Jansen and Heather and Scott Gleason for taking time to visit with Nick and I. Believe it or not Nick acted very shy when meeting these participants. For those of you that know him well this will come as quite a surprise as Nick doesn't have a shy bone in his body. He told me on the ride home that he was scared and that the next time he had a chance to see them he would not be as shy. The big hit for Nick was a chance to sit on a Harley Davidson and have his picture taken. I hope to post some pictures from our visit on this site in the next few days. It sounds like they have had alot of success in fundraising and have several events planned in the next couple of months. Let's hear from other participants on how their fundraising is going as well. Best of luck to each of you. we look forward to meeting all of you and are interested in participating in your activities...just ask us!!
Nick has been feeling pretty well. he has been a bit bummed in that we have not let him be around to many of his friends. with his ANC kinda low right now we do not want to take any chances. He and I have been playing alot of baseball and hockey in the yard and on the driveway. He has turned into quite a hitter and I am the one who has to chase the ball all over the place.
Nick's birthday is coming up on October 10, 2001. He will be turning 5 and we are looking forward to it. Prior to his relapse we were planning to hold a huge party but have scaled back our plans considerably. He told me yesterday that he wants power rangers, pokemon and a remote controlled car. I will have a great time shopping for those!!
Ali has been having a ball with soccer. She has CCD on Mondays, soccer practice on Tuesdays and Thursdays and soccer games on Saturdays. She keeps us running!
We paid a visit to Mom yesterday and she is not feeling well. She has been having severe back problems and had an MRI on Friday. Hopefully all will turn out well and she will be back to normal soon. We found out yesterday that Karen Serum (Jeff's wife) took a spill at their home in Iowa and broke her ankle in 2 places. It required 8 pins and a plate to put her back together yesterday evening. She has quite a road in front of her but is a strong person and will do great. karen we are all thining of you.
We hope this message finds everyone in great spirits and health and keep those thoughts, prayers and guestbook entries coming. We are going to whip this thing and each of you are a big part of that. Thank you.
Quote of the Day:
We must be the change we wish to see in the world. -Mahatma Gandhi-
Friday, September 14, 2001 at 09:01 AM (CDT)
This was written by Leonard Pitts of the Miami Herald.
We'll go forward from this moment
It's my job to have something to say.
They pay me to provide words that help make sense of that which troubles
the American soul. But in this moment of airless shock when hot tears sting
disbelieving eyes, the only thing I can find to say, the only words that
seem to fit, must be addressed to the unknown author of this suffering.
You monster. You beast. You unspeakable bastard.
What lesson did you hope to teach us by your coward's attack on our World
Trade Center, our Pentagon, us? What was it you hoped we would learn? Whatever it was, please know that you failed.
Did you want us to respect your cause? You just damned your cause.
Did you want to make us fear? You just steeled our resolve.
Did you want to tear us apart? You just brought us together.
Let me tell you about my people. We are a vast and quarrelsome family, a family rent by racial, social, political and class division, but a family nonetheless. We're frivolous, yes, capable of expending tremendous emotional energy on pop cultural minutiae -- a singer's revealing dress, a ball team's misfortune, a cartoon mouse. We're wealthy, too, spoiled by the ready
availability of trinkets and material goods, and maybe because of that,
we walk through life with a certain sense of blithe entitlement. We are fundamentally decent, though -- peace-loving and compassionate. We struggle to know the right thing and to do it. And we are, the overwhelming majority of us, people of faith, believers in a just and loving God.
Some people -- you, perhaps -- think that any or all of this makes us weak.
You're mistaken. We are not weak. Indeed, we are strong in ways that cannot be measured by arsenals.
IN PAIN
Yes, we're in pain now. We are in mourning and we are in shock. We're still grappling with the unreality of the awful thing you did, still working to make ourselves understand that this isn't a special effect from some Hollywood blockbuster, isn't the plot development from a Tom Clancy
novel. Both in terms of the awful scope of their ambition and the probable
final death toll, your attacks are likely to go down as the worst acts of
terrorism in the history of the United States and, probably, the history
of the world. You've bloodied us as we have never been bloodied before.
But there's a gulf of difference between making us bloody and making us
fall. This is the lesson Japan was taught to its bitter sorrow the last time
anyone hit us this hard, the last time anyone brought us such abrupt and
monumental pain. When roused, we are righteous in our outrage, terrible
in our force. When provoked by this level of barbarism, we will bear any suffering, pay any cost, go to any length, in the pursuit of justice.
I tell you this without fear of contradiction. I know my people, as you,
I think, do not. What I know reassures me. It also causes me to tremble with dread of the future.
In the days to come, there will be recrimination and accusation, fingers
pointing to determine whose failure allowed this to happen and what can be
done to prevent it from happening again. There will be heightened security,
misguided talk of revoking basic freedoms. We'll go forward from this moment
sobered, chastened, sad. But determined, too. Unimaginably determined.
THE STEEL IN US
You see, the steel in us is not always readily apparent. That aspect of our
character is seldom understood by people who don't know us well. On this day, the family's bickering is put on hold.
As Americans we will weep, as Americans we will mourn, and as Americans, we will rise in defense of all that we cherish.
So I ask again: What was it you hoped to teach us? It occurs to me that maybe you just wanted us to know the depths of your hatred. If that's the case, consider the message received. And take this message in exchange: You don't know my people. You don't know what we're capable of. You don't
know what you just started.
But you're about to learn.
Thursday, September 13, 2001 at 03:10 PM (CDT)
Nick had a clinic visit today. His ANC was 674, so while he is not below 500 (neutropenic) we are planning to keep him away from situations where he could pick something up.
Nick and Laura were at the clinic for around 6 hours today. Besides having his blood counts taken, he received Cytoxan and a new medication, Etoposide. I have included a link for information on Etoposide in the Links area below. Please take a look to become familiar with this medication. Nick will be seeing these meds several times over the coming months.
He seemed in good spirits when I spoke with him and asked if I was interested in getting him some Digimon Action Figures. I plan to do something fun with him tonight while Ali is at soccer practice. He has really gotten into Candy Land lately and I am hoping that he does not want to play that. I think I have played that game over 1000 between the him and Ali. I need to come up with a good alternative.
Happy B-Day to Mom. Her birthday was September 12th.
We hope all is well with the TNT runners. We plan to schedule a time for you all to meet Nick sometime soon (when his counts go over 1000). We are looking forward to meeting each of you.
Keep signing that guestbook. We so look forward to reading your comments.
More later...
Quote of The Day:
A cheerful heart is good medicine.
Proverbs 17:22
Wednesday, September 12, 2001 at 08:47 AM (CDT)
On this day following the tragic events in New York, D.C. and Pennsylvania, please take a moment to reflect on freedoms we enjoy here in America.
Please pray for the families of the victims. This is a very difficult time for them and for America.
Quote of the Day:
We are not weak, if we make proper use of those means which the God of nature hath placed in our power... The battle, sir, is not to the strong alone; it is to the vigilant, the active, the brave.
- Patrick Henry
Sunday, September 09, 2001 at 06:37 PM (CDT)
Nick and Laura returned home today. They were discharged at 9:00AM and were home by 9:30Am. I know both of them are glad to be home and Ali and I were glad to see them.
If all goes well he will be back in the hospital in 3 weeks for another round of Methotrexate. Laura and I have talked about having him completely hydrated prior to being admitted, with the hope that his body will be able to better matabolize the chemo, and getting him out of the hospital earlier.
Thank you for all of the prayers and well wishes. We really feel like Nick has alot of people praying for him and including him in their thoughts. That is so powerful...keep up the good work!!
Good luck to the TNT runners. I understand that your team was planning your first 10 mile run this weekiend. We are interested in finding out how it went. That is a huge commitment on your part and your efforts will help out a terrific organization.
Ali went to the Ringling Brothers circus with her Aunt Debbie this past week and had a ball. She particularly enjoyed the high wire act (When I was a child it was a favority of mine as well). Gunther Gabel Williams has retired (remember him??) and has been replaced by Sara, who Ali was not to impressed with. I always thought Gunther was the greatest.
Quote of the Day:
It is greatest to believe and to hope well of the world, because he who does so, quits the world of experience, and makes the world he lives in. - Ralph Waldo Emerson
Thursday, September 06, 2001 at 07:53 PM (CDT)
Nick made his counts today (ANC of 1172). He was admitted to Children's Mercy at around noon today. He began his 24 hour Methotrexate IV at around 4:30PM. They are planning to test him for "recovery" from the Methotrexate at 4:30 on Saturday at which time we will find out how long he will be in. Right now they think it may be until Monday.
Laura is with Nick at CMH. I just returned home from visiting them and both seemed in good spirits. I know that it is very hard on both of them but they are both so strong that they always carry through. Laura's birthday is tomorrow so I will be planning something fun for both of them. They are in room 4617.
While at the hospital this evening I saw a family of a child who had just been diagnosed with leukemia. It made me think back to those days in our lives. The fear and emotions that envelop your life during diagnosis are overwhelming. I could see the pain on the faces of this family. I wanted to tell them it would be all right, that their child would be all right. I pray that this family is able to find the strength to get through treatment.
Ali is staying with the Olivia and her family tonite. The Faber's are planning to have her over tomorrow night and keep her through Saturday. She is a real trooper and is quite comfortable with both families during these stays. Thanks to all of you for helping out. It really means alot to us.
Please pray for Nick during his stay.
Quote of the Day:
To believe yourself to be brave is to be brave; it is the only essential thing - Mark Twain
Monday, September 03, 2001 at 01:34 PM (CDT)
Nick has had a good past few days. We went and played goofy golf yesterday. Ali and Nick both had a ball. I am beginning to think that the ice cream man has a mandatory route that includes our street. The kids have been seeing him nearly everyday.
Nick has been feeling pretty good however has been tiring rather easily. We are having him lay low today to get some rest. He and Laura will be going to clinic on Thursday. If his Anc is >500 then they plan to admit him for Methotrexate. We are praying that he makes counts and gets on with his treatment.
I have included a web link below to a great site for the Team in Training program. As many of you know, Nick has been asked to be a sponsor child for this program. The Leukemia Society created a booklet about Nick for each of the runners and included some great pictures, several of which have been put up here in the past. Please take a moment to look at the TNT site. It has alot of great information about these marathons and bike rides that benefit the Society. The runners on Nick's team are planning to run the Disney World Marathon in 2002.
Quote of the Day
I do not ask to walk smooth paths nor bear an easy load.
I pray for strength and fortitude to climb the rock strewn road.
Give me such courage and I can scale the hardest peaks alone,
And transform every stumbling block into a stepping stone.--Gale Brook Burket
Thursday, August 30, 2001 at 02:25 PM (CDT)
I have added a poem written by the mother of a child with ALL. Please see below for this touching poem.
In addition I have added a link below for all of the new comers to gain an understanding of Acute Lymphoblastic Leukemia (ALL). Please click on the link to view WebMD information on this type of leukemia.
Nick did not make counts today and so he was not admited for Methotrexate. Laura accurately predicted that he would be low (she has gotten pretty good at that). His ANC was 250 and he needed to be at 500 to be admitted. They will retest him next Thursday and if he is at 500 he will go in then (Laura will be there over her birthday). He is generally feeling pretty well and acts OK, but all of his Methotrexate administrations are count dependent. We are all praying that he makes counts next week.
Ali is doing great in school. She has her first spelling test of the year tomorrow and we worked on her words last night. She breezed through all of them. She takes alot of pride at achieving 100% on her spelling and loves to take on additonal challenge words whenever possible. Her team won the class spelling contest yesterday. She was quite sad this AM when her and Laura were talking about Nick and Mom being gone for a few days. She and Laura really have a great relationship which has grown much stronger the past several months (she is growing up!).
Welcome to all of the TNT runners and their supporters. We are definitely behind you and I just know that Nick will provide the inspiration you need to achive your goals. My sister Debbie is working with some of the runners to help organize fundraising events for the Leukemia Society. If anyone is interested in helping I know that they would welcome your assistance. thanks to everyone for their hard work.
We had a wonderful time visiting with Brad Serum and Cindy last Saturday. It was nice to see Brad after so many years. He has turned out to be a great person; interesting, intelligent, articulate and fun. Nick and his friend Ellen talked Brad into pushing them on the swing and Nick has asked me ever since when Brad is coming back to swing him again. He had a ball!! Cindy brought over huge jars of her freshly made salsa which was quite a hit!! Laura prepared a wonderful dinner and we all had a great time. We plan to make it a regular occurence.
I have added a picture to the Photo Area from the Leukemia Society golf outing. Please take a look.
The Littlest Soldiers
The medal on our chest
Is a porta-cath 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 cancer hell.
So bring on the medals
The Purple Hearts of War
The Gold Cross, The Silver Star
To place upon my scar
For We are the Children of Cancer
No one has fought so hard
But every day we struggle on
Our life is our reward.
Quote of the Day:
Life is an oportunity, benefit from it. Life is a beauty, admire it. Life is a dream, realize it. Life is a challenge, meet it. Life is a duty, complete it. Life is a game, play it. Life is a promise, fulfill it. Life is sorrow, overcome it. Life is a song, sing it. Life is a struggle, accept it. Life is a tragedy, confront it. Life is an adventure, dare it. Life is luck, make it. Life is life, fight for it!
Mother Teresa
Saturday, August 25, 2001 at 11:05 AM (CDT)
New pictures in the Photo Area - Enjoy!!
Nick's clinic visit on Thursday went pretty well. He had a spinal tap to administer three medicines directly to his spinal fluid. Since his relapse was confined to the spinal fluid he is getting additional medicines specific to this area. The clinic days that include a spinal tap can get quite lengthly and both he and Laura are usually quite tired upon their return home.
The current plan is to admit Nick on Thursday morning for a 3-4 day stay. Nick will be getting Methotrexate during this stay and this is a particularly difficult medicine. As many of you are aware, Nick has not gotten sick once from the chemo so far however Methotrexate nearly always casues problems. We will see how it goes. He will be admitted every three weeks from now until X-Mas for Methotrexate. I have included a link below for those interested in learning more about this medicine.
Ali is really enjoying her class and teacher this year. She has been working hard already and seems up to the challenge of 4th grade. CCD starts next week so her schedule will be pretty full with that, school and soccer. She is really growing up.
Mom watched the kids last night while Laura and I went out for dinner to celebrate our anniversary. We had dinner at Hereford House in Leawood and had a wonderful time. Neither of us could recall the last time we went out on a "date" and we agreed that we need to do it more often. The kids had a ball with their grandmother and she seems to enjoy spending time with them. Thanks Mom!!
We have invited Brad Serum and Cindy out for dinner tonight. Brad just moved to KC this week and we are anxious to spend time with him. I believe it has been well over 10 years since I have seen him. Should be fun. Thought we would grill out and I am quite sure Laura will whip up something fabulous.
Welcome to Ann, another of the TNT runners who Nick will be providing inspiration to. we look forward to meeting all of the runners soon. Thanks to Debbie for offering to help with sponsorships. Debbie has a whole host of contacts at area businesse that may prove beneficial to the runners. Please see her message in the guestbook and contact her via email for more information.
More later, and keep those comments, thoughts and prayers coming.
Mike
Monday, August 20, 2001 at 06:52 PM (CDT)
Three great new pictures in the Photo area. Have a look!! Thanks to Paul and Tori McWhorter for scanning the pics for me.
Nick had a clinic visit this morning. His ANC was 1750. He had low platelets and was given platelets to boost him back up. Laura foresaw his need for platelets as he has been bruising pretty easy the past few days. He goes back on Thursday to have his counts taken.
Nick saw his friend Alexa Faber at clinic. Alexa also has ALL. She is 5 years old and just started kindergarten. The Faber's live in Olathe and were the first family we met when Nick was diagnosed. Laura and Wendy Faber have become close through all of this and talk for hours about the kids. They also have a son, Jake, who is Ali's age and she often goes to their house while Laura and Nick are at clinic. Wendy always has great crafts, etc. for Ali to make. She brought Nick a handmade PokeMon blanket today, and as most of you know, anything with Pokemon on it is a big hit with Nick.
I would like to welcome Courtney, Gretchen and Deanna. Each of then has made a commitment to train in the Leukemia Societys Team in Training Program, and to run a marathon at Disneyworld in January as a fundraiser for the Society. Nick has agreed to be an honor patient for this program and will have opportunities to participate in events with each of them. We are excited and want to thank each of them for their participation. I encourage everyone who visits the site to think about providing sponsorship to each of them Welcome!! Please feel free to call us at anytime. We are at 913-780-3647. Good luck in you training!!
I would also like to welcome Brad Serum to Kansas City. Brad has accepted a position with Hallmark cards and willbe moving here later this month. We look forward to spending time with him.
Keep those guestbook entries coming . We look forward to reading them!
Quote of the day...
Champions are made from something they have deep inside them - a desire, a dream, a vision. They have to have last-minute stamina, they have to be a little faster, they have to have the skill and the will. But the will must be stronger than the skill
- Muhammad Ali
Thursday, August 16, 2001 at 06:24 PM (CDT)
Nick had a clinic appointment this morning. The good news is that his ANC was 5000. The bad news is that his counts are headed down and his hemoglobin is getting pretty low. He is scheduled for a transfusion tomorrow morning to get him boosted back up. He has been on a rollercoaster ride the past few weeks. We are hopeful that this transfusion will put him over the top and he will stay up for a while. I will update everyone on the success of the transfusion in the next couple days.
Ali started school this week and is glad to be back. She loves her teacher Ms. Jones and is looking forward to 4th grade. As alot of you know, Ali is a straight A student (always has been) and she knows that to maintain that in 4th grade it is going to take alot of hard work. Her homework load will definitely increase. I know she is up to the challenge!! She has soccer practice every Tuesday and Thursday and games on Saturday. She loves her teammates and the parents are terrific. Go Fireballs!!!
Thanks to everyone for visiting the site. We love reading the guestbook so keep leaving those messages. They mean alot to us.
Nick has become a Team in Training child through the Leukemia Society. Several runners will be using Nick as inspiration while preparing for the Disney Marathon and while collecting donations.
We should have alot more pictures for everyone to look at in the next day or two. We have some great pics of the kids and look forward to sharing them with everyone.
More soon...
Sunday, August 12, 2001 at 01:10 PM (CDT)
Nick and Laura are back home. Nick was released on Saturday 8/11/01 at 1100AM. I know they were both ready to get back here.
Laura and Nick have been in the hospital more than 8 days during the past 3 weeks. Barring any unforseen admissions, they should be at home until the end of August. The plan is to do monthly admissions through the end of the year for chemo. The next series is methotrexate. In addition, Nick will be getting chemotherapy at the clinic twice a week, and daily at home. Nick will be receiving spinal and cranial radiation in January, 2002. This will involve 3 weeks of radiation treatments (Monday through Friday).
Nick is in great spirits right now. He really likes being at home. He has been getting quite restless in the hospital.
Ali is all set for school. She just came and showed me her first day outfit. She looked terrific!! She received a letter yesterday to let her know who her teacher is this year. She immediately called Stephanie, her best friend. to find out if they were in the same class (they have had the same teacher for the past several years). Alas, they will be in seperate class this year. She did inform me that they would be lunching together and playing together at recess. She is really looking forward to 4th grade. Tonight marks the first night she is going to bed at her school time (900). We will see how that goes.
The Buck O'Neil Celebrity Golf Tournament was a great success. The tournament was a benefit for the Leukemia and Lymphoma Society and the Negro League Baseball Museum (located in KC). I met Lou Brock, Buck O'Neil, Frank White, Pete LaCock and several other former pro athletes. Janna LaCock took a picture of me with Lou Brock. If I end up with a copy I will post it here. My team ended up at 11 under par. The team that won shot 19 under. The tournament was followed by a banquet, auction and raffle. My number was called during the raffle and I won 2 Chiefs tickets!! All in all it was a great day. The start was delayed due to rain, but once the play started, the temps were in the mid 70's and beautiful.
Hope this message finds everyone in good spirits and good health.
Quote of the Day: "One of the secrets of life is to make stepping stones out of stumbling blocks" - Jack Penn
Thursday, August 09, 2001 at 11:30 AM (CDT)
Nick made his counts today. His ANC was 2,175. He is being admitted to Children's Mercy to receive his next dose of ARA-C chemotherapy. We anticipate him bottoming out sometime next week. Laura and he will be admitted at least once a month (for 3-4 days) for the next several months.
Nick inadvertently pulled the needle out his cath last night. We called the Hem/Onc unit at Childrens and they suggested we have our home health nurse come out to reaccess him. the nurse who came over did not have the proper needle so he was unable to help much. We were unable to give Nick any antibiotics as his line was competely out. Chilrens was going to go ahead and finish up with those today.
Ali has soccer practice tonight (Go Fireballs!!). I plan to leave her a little early today, head down to Childrens, visit with Nick and Laura and then bring Ali back to Olathe for her 7:00PM-8:00PM practice. We always make sure we find a way for Ali to be able to participate in all of her activities regardless of what is going on with Nick.
More later...
Quote of the day: "For the things we have to learn before we can do them, we learn by doing them" - Aristotle
Monday, August 06, 2001 at 01:02 PM (CDT)
Nick had a great clinic visit today. His ANC had jumped to a whopping 26,000 (that is not a typo!!). We will stop the Neupogen shots for now and pick them back up following his next ARA-C dose. He is definitely back to his old self and now he will be able to play with Ellen, Josh, Austin, Zach, Megan and everyone else in the neighborhood. Not being able to play with his friends when his counts are low is really tough on him.
We are still a little up in the air right now about when his next admission for ARA-C will occur. It could be as early as this Thursday. We should know more later today.
I have included a link below so that everyone can view Ali's Monet interpretation. Please click on the link below and look for "Alie, Ms. Mowrey, 3rd Grade". She is pretty proud of this, what with having her art work on the internet and all, and with having it displayed in the art gallery.
The Leukemia and Lymphoma Society contacted me today about playing in a benefit golf tournament this Friday. Of course I said yes!!. Those that know me know that golf is one of my passions. I will let you know just how poorly I play as I generally get to see parts of the course that others seldom do (trees, bushes, lakes, ponds...).
Laura has been spending time with Ali getting her ready for school. All supplies are purchased, as are all the new clothes except the "1st day outfit" which of course will have to be just perfect. They should have everything wrapped up this week. Ali had her hair cut short this weekend and looks adorable. I will post some new pictures of both kids soon.
More later...
Quote of the Day: "Difficulties strengthen the mind as labor does the body" - Seneca
Sunday, August 05, 2001 at 10:56 AM (CDT)
It has been nice having everyone back home. Nick seems to be feeling better every day. He has a clinic visit with Dr. Woods on Monday AM for counts, etc.
We have been doing the antibiotic infusions three times a day at home and they are going fine. It is quite a process to do that and we have gotten really good at it over the past 3 days. We continue to administer Neupogen each day toget those counts back up. We are up in the air right now on the next ARA-C chemo series. It may be as early as next week. We should find out more tomorrow. This will put Nick and Laura back in the hospital for 3-4 days.
Ali starts soccer this Tuesday and is pretty excited. She starts school at Sunnyside Elementary the week after next. I have added a link below to her schools web site for those interested. If you visit the site, please be sure to click on Student Art Gallery to view "Alie's" 3D interpretation of a Monet painting(she thinks it is called "garden" but it looks more like "Waterlies, Green Harmony" to me. Ideas????) She is under 3rd Grade Ms. Mowrey. The school chose hers for the art gallery in the library. Way to go Ali!! I think she is ready to go back. She has had a busy summer, having flown with her cousin Jennifer to visit Steve, Tina and Justin in Austin, TX, spending a week at the Lake of the Ozarks with Jeff and Karen and family, soccer camp,plenty of sleep overs with friends and a trip to World's of Fun with our family and Cindy. One highlight was her trip to Sea World with Steve and Tina. She had a blast on the Steel Eel rollercoaster that she went on with Steve (65+ MPH). Thanks to everyone for helping make her summer a memorable one.
I will try to update the site after Nick's clinic visit tomorrow.
Several have emailed us for our address. Thought I would include it here:
Serums
18460 W 160th Terr
Olathe, KS 66062
(913) 780-3647
Daily Quote:
"The ultimate measure of a man is not where he stands in moments of comfort and convenience, but where he stands at times of challenge and controversy."
- Martin Luther King, Jr.
Thursday, August 02, 2001 at 07:38 PM (CDT)
Nick is home!! He and Laura got home within the past hour. His ANC today was 600 and going up. Great news!! I know both he anad Laura are glad to be back home.
A home health nurse will be arrivng in about 30 minutes to teach Laura and I how to use the pump to administer the antibiotic. He will be receiving a dose every 8 hours for 8 days.
Nick is great spirits today. He was visited by some Kansas City Royals and KC Chiefs. He met Pete LaCock, a former Royals player and had his picture taken with him. Nick has been talking about him ever since, however he swears that I can still out hit anyone.I have posted the picture on this site so be sure to take a look.
Pete LaCock has invited Nick to a Royals game at which he have an opportunity to meet some of the players. Nick and Pete really hit it off. He owns a business called "Old Ballgame" that is an indoor baseball training facility. He has invited Nick down to the facility for a visit. we are planning to contact Pete soon to setup a time for the game and the visit.
Pete's wife Janna LaCock is the Executive Director for the Leukemia and Lymphoma Society and they have asked Laura and I if we would be interested in making him a sponsor child. Nick has said he would like to do it, and with his personality he will be a great addition to the program. For those that do not know him well, Nick is a very outgoing, social child, loves interaction and is never at a loss for words. We will keep everyone updated.
The past few days have been tough on us all. I know that Laura is worn out for being at CMH for 4 days. I want to make sure she has a relaxing evening and gets a good nights sleep. Thanks to everyone for their kind words, thoughts and prayers during the past few days. The battle would be much more difficult to wage without your support.
Quote of the Day: "It is the mind that makes the body" - Sojourner Truth
Wednesday, August 01, 2001 at 09:45 PM (CDT)
Nick's ANC was 92 today and headed up. I am hoping for a good number tomorrow. We received Nick's blood culture results and he has Staphylococcus (Staph). I placed a link to drkoop.com below for information on this infection.
They have switched him to a powerful antibiotic and the plan as it stands now is for he and Laura to come home tomorrow. Following his return home, we have the option of having a home health nurse come over to administer the antibiotic through his central line port, or doing it ourselves. We will find out in the AM is they are indeed coming home. I know they are both more than ready.
Nick was in great spirits tonight when I was up there. We played the entire time, he has been eating a bit and getting back to normal. We are hopeful that we will get a good set of counts tomorrow and get them home.
Wednesday, August 01, 2001 at 06:51 AM (CDT)
Nick's ANC reached a whopping 12 yeterday. He is on very strong antibiotics as the blood culture he had taken Monday alarmed at 24 hours. This indicates the possible presence of some type of bacteria. They will have confirmation at the 48th hour (11AM today) on this. Just what he needs is another problem to deal with. We really could use some good news right about now.
Ali and I went to see him yesterday afternoon and he looked great. He was pretty excited when we showed up with Pokemon cards. We played, talked and had a great time. Laura and he are both amazing. I do not know how she does all of this and still stays so positive. She is a rock.
I will try to update this later with the culture results.
Thanks and keep signing that guestbook.
Monday, July 30, 2001 at 03:28 PM (CDT)
Nick has totally bottomed out on counts. His ANC this AM was 0. The ARA-C that he had administered during his last hospital stay is causing this problem. He went this AM for a clinic visit and ended up being admitted to the hospital. They plan to give him platelets and a blood transfusion.
Please pray for Nick to get through this latest difficulty. He and Laura will be at childrens mercy until his counts rise, and then we will get him ready for his next dose of chemo.
Thank you to everyone for your kind words, thoughts and prayers.
Quote of the Day: "Just remember-when you think all is lost, the future remains" - Robert H. Goddard
Thursday, July 26, 2001 at 07:38 PM (CDT)
Nick had a great clinic visit and checkup today. His ANC was 1652, and with the Neupogen that we are giving him he should be at his target of 3000 by early next week. His next clinic visit is scheduled for Monday. Dr. woods thought he looked terrific and was a little amazed that Nick is not having any pain, nausea or mouth sores. He is incredible.
Ali went along with Laura and Nick today and took her friend Olivia with her. They are such good friends; her family lives down the street and the girls have been playing together since they were 3. I just reminded them that they only have 3 weeks to go before school starts and they both responded with an UGHHHH!!
Nick and I played pitch/hit baseball in the driveway for an hour tonite (as we do every night). He has turned into quite a little hitter. To think that with all of his physical challenges he is this good of an athlete I can't help but wonder what he would be like if he was healthy.
I hope this finds you all in great spirits. Thank you all so much for the comments in the guestbook and keep them coming.
Love Mike, Laura, Ali, Nick
Tuesday, July 24, 2001 at 02:18 PM (CDT)
Nick's treatments at Children's Mercy went great. As is always the case, Nick experienced no side effects (nauseua, etc.) from the high dose ARA-C he received. He is truly my hero! Laura was understandably tired after spending two nights there and being awoken every 2 hours so that Nick's vital could be checked and eye drops administered. Ali and I picked up Laura and Nick on Saturday morning and we were all back home by early afternoon. Nick has a clinic visit scheduled for this Thursday to have his blood counts taken and a examiniation with Dr. Woods. we are working on getting his ANC up to 3000 right now so that he can go in for his next round of high dose chemo.
Monday, July 23, 2001 at 07:49 AM (CDT)
Nick's treatments at Children's Mercy went great. As is always the case, Nick experienced no side effects (nauseua, etc.) from the high dose ARA-C he received. He is truly my hero! Laura was understandably tired after spending two nights there and being awoken every 2 hours so that Nick's vital could be checked and eye drops administered. Ali and I picked up Laura and Nick on Saturday morning and we were all back home by early afternoon. Nick has a clinic visit scheduled for this Thursday to have his blood counts taken and a examiniation with Dr. Woods. we are working on getting his ANC up to 3000 right now so that he can go in for his next round of high dose chemo.
Someone sent me this song and I though I would post it on the site. It is so true...
HE'S MY SON
>
> DOWN ON MY KNEES AGAIN TONIGHT,
> HOPING THIS PRAYER WILL COME OUT RIGHT.
> THERE IS A BOY THAT NEEDS YOUR HELP,
> I'VE DONE ALL THAT I CAN DO MYSELF.
> HIS MOTHER IS TIRED, I'M SURE YOU CAN UNDERSTAND.
> EACH NIGHT AS HE SLEEPS, SHE GOES IN TO HOLD HIS HAND, AND SHE TRIES
> NOT TO CRY
> AS THE TEARS FILL HER EYES.
>
> (CHORUS)
> CAN YOU HEAR ME?
> AM I GETTING THROUGH TONIGHT?
> CAN YOU SEE HIM?
> CAN YOU MAKE HIM FEEL ALL RIGHT?
> IF YOU CAN HEAR ME
> LET ME TAKE HIS PLACE SOMEHOW,
> YOU SEE HE'S NOT JUST ANYONE,
> HE'S MY SON.
>
> SOMETIMES LATE AT NIGHT I WATCH HIM SLEEP.
> I DREAM OF THE BOY HE'D LIKE TO BE.
> I'LL TRY TO BE STRONG AND SEE HIM THROUGH,
> BUT GOD, WHAT HE NEEDS RIGHT NOW IS YOU.
> LET HIM GROW OLD,
> LIVE LIFE WITHOUT THIS FEAR.
> WHAT WOULD I BE, LIVING WITHOUT HIM HERE?
> HE'S SO TIRED
> AND HE'S SCARED
> LET HIM KNOW
> THAT YOU'RE THERE.
>
> (CHORUS)
>
> CAN YOU HEAR ME?
> CAN YOU SEE HIM?
> PLEASE DON'T LEAVE HIM
> HE'S MY SON..............
Thursday, July 19, 2001 at 12:52 PM (CDT)
Nick made his counts this morning. Laura and Nick will be staying at Children's Mercy Hospital (see address at bottom of web page) for the next 3-4 days. Nick will be receiving a powerful chemotherapy medication, ARA-C (Cytarabine), which interferes with the growth of cancer cells which are eventually destroyed. This medication can have significant side effects on Nick and while he has seen this medication before, his dosage will be very high this time around due to his relapse.
Nick will be monitored during this round of chemo (hence the admission into the hospital) as headaches, dizziness and nausea are all possible.
Once Nick returns home from his stay, Laura and I will be asked to administer Neupogen to him to up his immunity system. This involves intramuscular leg shots. Nick absolutely hates us giving him shots in his legs, however these are necessary to allow him to recover in time for his next round.
I will keep everyone apprised of his progress here on the site, so check back often for updates.
Thanks to everyone for the guest book comments. Keep them coming as they bring a smile to all of us and are really appreciated (I plan to preserve this site for Nick to read later in life).
Monday, July 16, 2001 at 09:03 PM (CDT)
Nick failed to make his counts today. He needed to be at an ANC of 1000 and he was 925. They will try and test him again on Thursday in the hope that he hits 1000 and can be admitted for his ARA-C regimen.
Thanks for all the great comments in the guestbook. We love reading them. If you have a minute while on the site, please add a few comments in the guestbook to let everyone know what is happening in your lives. This site should be a meeting place for our family and friends and could grow to be so much more than what it is today.
Love Mike, Laura, Ali and Nick
Sunday, July 15, 2001 at 03:43 PM (CDT)
Nick had his blood counts taken on Friday and his ANC (absolute neutrophil count) was 1250. His ANC is a combination of several blood values (white blood cells, neutrophils, etc.) that indicate his level of immunity. At times when Nick's ANC falls below 1000 we limit his exposure to situations where he could pick up infections.
Given the ANC of 1250, we spent Friday and Saturday with Jeff and his family at the Lake of the Ozarks. Ali had been there for a week and we took Nick with us to pick her up. Nick had a blast. He boated (Jeff let him drive) and thought it was cool to get the boat "airborne". Ali, Nick and I went together on a jet ski and Nick drove. That was an experience. He wanted to go full power over huge waves, needless to say Ali and I got drenched. Jeff and Karen were great hosts.
Nick has his ANC checked this Monday AM and if his ANC is above 1000 he will be admitted for 3-4 days to undergo some intensive chemotherapy. The medication he will be receiving, ARA-C, has the capability to damage kidneys if it is not flushed through the system quickly. They will keep him and give him IV fluids to ensure that he moves it through his body. When he comes home, Laura and I will have to give him injections in his leg of a medicine called neupogen. Neupogen increases the ANC in the kids following intensive chemo (which ahs a tendency to depress the immunity system).
We plan to place photos on the site early next week. We have a friend scanning some for us. This will become much simpler if and when we are able to get a digital camera. When we have one we will be putting new pictures up all the time.
Thanks for taking time to look at this update and keep putting those messages in the guestbook. They are great to read and it makes us feel like this site is worthwhile.
Thursday, July 12, 2001 at 08:46 AM (CDT)
Background
Nick was diagnosed with pre-B Acute Lymphoblastic Leukemia on January 12, 2000 at Children's Mercy Hospital in Kansas City, MO. Under the treatment of Dr. Gerald Woods, Nick achieved remission 21 days later. Nick progresed wonderfully and was placed on Maintenance in December, 2000. Unfortunately, Nick had a relapse in his Central Nervous System on Moday June 4, 2001. This is a major setback. Nick has started a new protocol of very high dose chemotherapy and achieved a second remission on July 2, 2001. Nick will continue to undergo an intensive chemo regimen and will undergo Radiation in January, 2002.
Thursday, July 12, 2001 at 08:05 AM (CDT)
Nick's Journey was created on this day. Please check back weekly for updates.
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