Even though it is only Day 14, we have been here 16 days - almost 2 1/2 weeks. Rich says I am becoming a little bit like Jack Nicholson from The Shining. After Nicholas got sick earlier this week, we have been confined to our room and have turned into slugs watching video after video. I can't even have a conversation about the weather, let alone what is going on with the debates! I can quote lines from Nemo and Toy Story though!
Enough about me, we are here to talk about Nicholas. Tomorrow (Friday) is our big day - Day 15 when certain markers need to be met. Specifically they want the bone marrow to show under 5% of leukemia cells. Last week we were at 60% (down from the 84% we started with, but still pretty high nonetheless). They have assured us that kids do drop to 5% in this second week and that it doesn't require a freak occurrence, but obviously we would have preferred him to be have been much closer to 5% last week. If we don't meet the marker, they will change up his current treatment plan to be more aggressive and try to get it under 5% by day 28. I can' stress enough how we need this information to be good tomorrow.
Also tomorrow we should hear back about the final chromosonal marker which will determine if Nicholas stays in standard risk or moves to high risk. It has to do with something called the Philadelphia chromosone and I can't begin to know how this this all works. One of the doctors on Nicholas' team feels that because of another chromosonal abnormaility, Nicholas shouldn't also have this one. Have no idea what other abnormality they found, but I hope he is right! The other chromosonal tests came back favorable.
Bottom line is that I hope tomorrow we are rejoicing in good news and I will post at the first opportunity, I appreciate your concern (since you are reading this I know you are worried too) and I ask that you pray, pray, pray for good results.
Here is a quick video of Nicholas taken tonight. He is a little swollen from the steriods and fluids he is being pumped with and has rubbed food and butter all in his hair, but he is still the same little guy you are used to seeing.
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Okay!! Now I am crying casue that little guy is SOOOO CUTE!!!! Donna, well the peanut thing is CRAZY!! I will jsut have to agree that your Mom is right, some angel whispered in his ear to go into that suitcase. I will be on retreat tomorrow am and at 8 am I will be in the chapel praying hard for that guy and make sure everyone there is as well!!! Day by day, even minute by minute...Be well!!!! Helen
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