Wednesday, September 18, 2013

Restart!

I never thought I would find such comfort and rejoice to be able to put chemo into my little guy's body again.  But yes I did!  After 25 days of chemo hold (18 days days of 6MP and 2 doses of oral MTX before the hold), Lucas finally recovered to ANC = 1015 and we restarted both MTX and 6MP at 50% dose last night.  Lucas was so active Monday evening during our neighborhood stroll.  He hadn't been able to walk a distance on his own ever since diagnosis.   Monday evening, he kept running and running for a rather long distance. His little face was red and pumped afterwards and he told me he was running a race and finished first place.   Yesterday morning when I took Lucas for his CBC, it was also the first time that we didn't push the stroller and he didn't ask me to hold him during our hospital visit.

We didn't get to see a nurse practitioner or doctor yesterday.  We came straight home after finger poke.  I have left messages for our doctor for the dose that I think is reasonable.  And since Lucas learned how to swallow pills during the 25 days of break (I started with toasted bagel pieces, then we practiced with Predinisone during the steroid pulse), I calculated the daily pill dose while I waited for the results.  I was glad to find the dose came really close to my calculation when we picked up medicine from pharmacy.  6MP is 1/2 pills (25mg) a day for 6 days a week -- that's 47% of the dose he was on before, but since he has gained some weight during the 25 days break, it's actually less than 47%, so very much in line with what I think the dose we should restart with.  MTX is 2.5 pills a week, which is a little over 50% of the dose he was on before.  I do not suspect MTX was the culprit of counts crash for Lucas.  So if Lucas's counts will be higher than 1500 consistently, I will suggest to raise MTX dose first.   My evidence is when Lucas was on HDMTX infusion and 1/3 of the 6MP dose compared to LTM dose, his counts was stable around 1500.   When Lucas was on AraC infusion and 80% of the 6MP dose compared to LTM dose, his counts crashed and he needed 4-5 of blood transfusion and weeks of neutropenic.  

Today is also going to be first day of school for Lucas.  I will take a 1.5 hour (it would have been an hour if the parking at work is more friendly!) lunch break MWF to pick up Alex from his day school, pick up Lucas from home, send them to the part-time school.   Alex would have to have lunch in the car and he is actually looking forward to that (we pack lunch for his school anyway).  Lucas finds comfort in knowing that Alex would be in the same classroom with him as he still doesn't speak English.  Alex is excited that he gets to go to two schools and have two batches of friends and he would be the oldest in Lucas's class and be a leader there.  Jianwei will need to pick them up at 2:45 MWF and work from home when they take a nap afterwards.  

Today is also going to be first evening at AWANA for Lucas.  I will stay in his room with him.  Alex surprised me by remembering his first verse after he had to miss a class because of strep throat and I was not able to find his book and teach him more.  I hope Lucas's counts will stay above 1000 (or at least 750) and he can join us with our busy life routines.

3 comments:

  1. I've been following your blog since our son was diagnosed with ALL. Glad to hear you guys will be continuing on with treatment!

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  2. You are so busy! Happy to see that you are doing so well.

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  3. Hi Crystal,

    I talked to my mom (retired cancer doctor and general surgeon) about Lucas situation. Here are some suggestions from her. Hope it can help: 1,创造一个清洁的环境,减少感染,如口、鼻、皮肤的清洁,保证大便的通畅、小便部位的卫生。
    2,可输注单采的血小板悬液,不可单独输升白细胞的药物。
    3,可用升白细胞的辅助药物,如口服螺旋藻、蜂王桨、百令胶襄。
    4,尽量避免感冒!!
    5,每天可于早晚吃一小碗枸杞、小红枣、薏米仁“三种等量、枸杞、薏米仁最好中药店买”熬的粥。
    God bless!

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