Rollercoaster
After being on an elimination diet for the last week and a half, Noah has less blood in his poop, but it isn’t all gone yet. I am still hopeful it is a dairy or soy intolerance.
This week Noah had an appointment with his pediatrician followed by a phone appointment with his Hematology/Oncology doctor. The labs drawn in Mankato showed 0% blasts, we were told this by his pediatrician. Tears. I wanted this to be true!! A few hours later that day we received a call that that number was actually 9%. BUT then Hem/Onc doctor called us from Rochester saying not to trust that number.
After discussing the pattern with the Hem/Onc doctor, we discovered that apparently the equipment here doesn’t give accurate results all the time (but sometimes it might be correct as the discrepancy wasn’t too far off a few times). Looking at the history of bloodwork, it looks like the white blood blasts in Noah’s blood are sometimes down in Mankato, but in Rochester they are about 20-25 percentage points higher. The blasts are what we are most concerned about, but we don’t have an accurate picture of what they are doing from the labs drawn at home. We go back to Rochester in 2 weeks. When we thought those blasts were going down or spiking up, they were likely making small changes week to week and hovering around 30-40%. Good news– sort of. I’d rather see them hovering a bit lower. It makes me wonder if those blasts were actually higher when his hemoglobin was dropping a few weeks ago when he needed a transfusion. I’m not sure what the lesson is, and I’m irritated about the emotional rollercoaster I’ve been living these last months.
The longer he has this, the higher the chance he would get full blown AML. About 80% of babies who overcome this transient Leukemia have done so by 36 days of life. Noah’s 3 month birthday is this week. Every day he isn’t better, increases the likelihood of getting AML. I’m impatient for him to be done!
Noah is my sweetest baby yet! Sleepier than my other babies, which makes him super snuggly. The only time he really cries is if he is lying alone, and whaps himself in the face or scratches himself. Then he angry cries until I pick him up, and he is instantly soothed. Even when he has labs drawn, just picking him up makes everything OK. I wish I could make it ALL better with a snuggle.
Maybe this is the lesson to be learned.
Some trust in chariots and some in horses, but we trust in the name of the LORD our God. PSalm 20:7
Some trust in lab results and some in percentages, but we trust in the name of the LORD our God.
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