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April 30
Drs say xanders cultures came out negative, he is on his
way home today. He may not take any classes Dr orders until his counts go back up. We will get counts done on Wed. or
Thurs. to check his current levels. Today his coughing is down a tiny bit, and his energy is up. He stayed up until 1:00 last
night wanting to go home, so we are delighted that can happen today.
April 29 B,
Xander is doing very well. The antibiotics have knocked down
his cough to a reasonable level. The infection tests are not back yet. The DR.s will do counts in the morning and we will
know more by afternoon. So far he is enjoying having access to cable television ( something we don't have at home ) and his
grandparents bringing him tasty food to tempt his appetite. Today that is oven roasted chicken thighs.
April 29,
Well our end of April problem wasn't to be a mobility issue.
Xander came down with a cold last Sat. It went from his nose to his lungs on Monday. From there it gradualy got worse. Thurday
night he was up most of the night coughing. Friday night he came down with the fever we all feared. His ANC count was so high
last Thursday that everyone was optomistic that this would only mean a quick (ha ha) ER visit for counts then home. Well,
his ANC went from over 2000 to 500 with this one week cold. We are now at Doernbecher. Its a minimum of a 48 hour stay, but
that depends on the DR.s view of the chest exrays he had done, and how his counts behave. If they go up we could be home soon.
April 21,
Taking in Xander to the DR and discussing his limp was allot like
taking your car the the mech. when its not acting up. Xander wasn't physically tired so the limp wasn't there. The DR. believes
it was, but there is no pain this exact second. The result of that conversation was if the discomfort is this minimal now
then as long as Xander can handle the pain on his bad days with pain killers we continue as is. Its more important to kill
the cancer then be comfortable during treatment. He has a codeine prescription for his bad days now, and we plan for the pain
to come very soon. This weekend we have planned physical out in the sun activities while he can. Other then the leg issue
his counts are great. Platelets are all the way up to 350. Not that of a normal immune system, but very good for a cancer
patient. Reb cells are also doing great. His ANC (white cells) are an issue because they are doing as well as they are. The
DR. wants to maintain them at 1000 to 1500 in order to continue fighting the cancer at a maximum level. Xander is over 2000
right now. WOW I love that number. He is in the middle of a 12 week cycle right now, but at the end of the cycle if his ANC
remains high we will get an increase in meds to bring the count down to the most beneficial level possible. The that causes
the leg problem will not be increased, and I've been told repeatedly that Vincristine toxicity is totally reversable. Over
Over time full function will be totally restored.
I also had a chance to talk to Xander's karate partners mother.
Her son had been told at the beginning of the term that Xander had been ill and he should be careful with him as a partner.
They didn't even mention the illness, and he had asked no questions. Do to his comments to Xander we agree that he may have
unasked questions and maybe she should initiate some discusion. You never know what is rolling around a 7 year olds mind until
you ask. Cute little guys is turning out to be a great partner, and challenge for Xander.
April 12,
Xander is having a good week. His limp is worse not better,
but he still claims he is only tired not in pain. We have chemo next Thursday and will address it with the Dr. then.
He has had Swimming, Karate and Roller Skateing this week as well as our at home school classes. He is exhasted, but so happy.
I need to sit down with the parents of he partner for Karate. Issac ( 7 years old ) and Xander were talking about Xander's
leave of absence for a year from Karate. Xander said he should have continued classes even with bad counts and being so sick.
Issac said then he would be !!! Xander has no clue that Lymphoma is potentialy Fatal. His DR.,
social worker, and us both agree that is something for the future not now at 6 years old. I think talking to Issacs family
so they are aware of Xander's health standing would be healthful since they boys may be working together for years
Linda, thank you for the two recent care boxes for Xander. He particularly loved the book with the night creature sounds!!!!!!
April 8
We attended the Candle Lighter Easter Egg
hunt today. Xander had a blast. His legs are working
almost back to normal. ( he says he is fine with no pain, but when he is tired a limp shows up ) There were clost to a dozen
therapy dogs at the egg hunt. Xander got his picture taken with three of them as well as the Easter Bunny.
April 4,
Xander had his counts taken today at Doernbecher.
We could have had them done localy, but after the last horrible experience we chose to go with a familiar location and nurse.
It turned out to be a good choice. He was very worried about pain again. The port access was very routine and caused no unusual
pain. Xander's counts are bouncing up and down. We are just watching for stable numbers before the DR. decided how to adjust
his meds next time. Xander has a limp when he is tired, but claims he has no pain.
April
1,
Xander's
mobility is a tiny bit better today. No fever and lots of giggles have been the theme of the day.
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