January 17, 2017  (Sara) 

We went to see Dr. Zucker today and we are grateful we didn’t need to get admitted. Dr. Z could tell Maya’s coloring was off at first sight and he “guessed” we’d be halting the 6MP for a little while. Maya’s labs confirmed his suspicion. It appears she is may not be metabolizing the 6MP (the daily oral chemo). Of course they tell you in the beginning “there is a rare chance of …this or that” and it appears that Maya might be proving her rareness in this not-so-awesome way.

Her liver enzymes are elevated but not near as elevated as I had feared (phew!). This means that while her liver is “angry” as Dr. Zucker puts it….it is still working. I did fear an elevated bilirubin that was confirmed today at 5.5 (normal maxes out at 0.8). Direct Bili is at 3.8 which indicates a halt in the 6MP. He tested for uric acid (normal). Kidney function looks great. Hydration looked good too….we’ll take those small wins! He also is testing for certain “metabolites”. We all have incredible enzymes that help us metabolize everything and sometimes if we are missing a specific enzyme it can get in the way of detoxing. Some of these enzymes could be depleted and we would never know…unless we were on chemo. That is what we might be looking at now. A possible deficiency in a specific enzyme that would normally not be a cause of concern unless heavily medicated with a very specific medication (i.e. 6MP). There is a chance we might need to deviate from 6MP all together but I will wait to hear the doctor’s insight before I delve into that issue too much. I did see that one of the tests looked high on our print out of labs but it might not be “too high”. I don’t know as it is not a typical lab value familiar to a dietitian. I don’t want to freak out over things I don’t know about….. Blah. I wish that was possible.
Even with good hydration, we still got some IV fluids for her while she had her budda button accessed. She slept for most of the appointment and Dr. Zucker noticed she was quite different than when he met the spunky and interactive Maya the first time. We are hoping the hydration will perk her up a bit. Her ANC is 3300…ironically this is pretty scary since this phase is supposed to keep her immunity at a consistent suppression. This is the third month with a high ANC. This only increases the risk of relapse since leukemia can mutate and then take over so quickly. IF she perks up, we can go ahead with her IV vincristine to knock down her ANC as soon as possible. If she doesn’t…we’ll have to wait. And as Dr. Z said “we can’t treat a sick child”. And she is sick. I can tell. I imagine the chemo is solely responsible but there could be a virus at fault too. We don’t know.
Our job is to keep her pooping, eating, and drinking. And we wait. Waiting sucks. But we wait together. I’m so thankful to have such a patient and loving person at my side. Scott makes this so much more easy than it would be without him. His natural patience is inspiring and tangible. I’m not saying he isn’t worried. He is. He is to his core but he has a loving way of dealing with his anxiety. And dealing with me.
We will keep you updated. Thank you again for all the love, prayers, support, light….everything.
Love is Life.