May 10th, 2017      (Sara)

Two weeks ago we started back on a 75% of the originally prescribed dose of 6mp. Actually, since we started back on tablets rather than a compounded solution, Maya is technically on a 71″ish” % dose (250mg 6mp) of what the typical ALL maintenance kid her size and weight is on (which is 350mg 6mp). A reminder that she is also on Allopurinol to help her metabolize the 6mp more efficiently for our goals of “mylosuppression” (bone marrow suppression) rather than the liver toxicity build up. Two weeks ago we started back on the increased dose even though we all (DrZ, Scott and I) think it is too high of a dose, the doc felt bound by protocol. We trust him and so two weeks ago we started a dose close to the one that wiped her out. Well. One week ago, Maya’s labs came back almost beautiful; while her hemoglobin continued to be 9.7 her ANC was 1010 and other numbers looked ideal. We were cautiously optimistic and made no changes.

Today we went for our monthly clinic visit and IV Vincristine. Maya got to see our super star nurses and other staff that she adores. I feel bad that I didn’t have the brain power to bring cookies for Nurses Week! They deserve far more than cookies… but I have learned during this experience that most nurses really like cookies. I will remember one day. Till then, I hope our nurses know that they mean the world to us and we wouldn’t be able to handle this without them. Our nurses help save Maya’s life while enriching her life. They offer support as well as independence and education at a time when she cannot go to school. Clinic visits ARE her school right now. The clinic IS her playground for now. And she gets new experiences each time because the nurses are able to surrender and trust her. Thank you. From the bottom of our hearts, Thank you.

Speaking of nurses…independence and education…Maya pulled her labs (practically on her own) today. Mary accessed her buddah button (aka port) but Maya helped with her flushes as well as pulled back the “waste”. Then she took the vials and pressed the “squishy part” into the needle and watched as the blood entered the vial. When Mary told her to pull it off, she did. Then she inverted it a few times just like the nurses do. I am so happy I actually caught it on video. I will post it on the front page. It is awesome.

The good news is that we are not still there at the clinic getting platelets or packed red blood cells for lunch. We are home and heading into nap time.

The uneasy news is that we are still flying through a bit of a storm.

While 3 data points are typically needed to determine a trend, today’s counts look to indicate yet another drop when compared to last week’s numbers. Again, we are on the increased dose and none of us were all that “shocked”…although no matter how well prepared I am or how much I expect something like this, the varying numbers make me queasy.
ANC: 710
WBC: 1
Platelets: 111
Hgb: 8.7

Liver function: perfect.

The WBC count of 1 made my stomach tight since a number that low could easily indicate a much lower ANC. Her neutrophils must just be thriving this week. Yay for that.

So what does this mean. DrZ is still thinking. Scott and I assume that he will be calling to let us know of a dose change – perhaps to 200mg or 225mg 6mp (57-64% of the original dose…perhaps lower now that she has finally lost her decadron/induction weight). I suppose the percentage really doesn’t matter to me aside from the fact that most “parent blogs” discuss “percent of the dose”…it’s all about getting the right amount of medicine in to do its job with out killing her. Since we are on 50mg tablets now, we can’t really get to a nice, clean percent like 75% or 60%. With a compounded solution, it is easier to administer 37.5mg each day for 75% dose but it also introduces the possibility that the solution isn’t completely mixed. Tablets eliminate some of that variability but also eliminates easily discussed calculations. None of this is “clean” or “easy”. It has sort of been messy from the beginning. After all…life is messy yeah?

We are grateful to have a doctor who listens. Who asks questions. Who might not know all the answers but some how finds the ones we need. And while he is rigid with some protocols, he is open to truly see Maya…not a typical ALL child. We are grateful that there are amazingly smart individuals researching the addition of Allopuriol to help with 6mp metabolite shifts. We are grateful for healthy livers. And for incredible feats in modern medicine. We are grateful for our nurses. We are grateful for dinners that friends make for our family. We are grateful for Grandparent’s and other family and friends that play with our kids and keep them happy. We are grateful for each other.

The calibration continues but we are hopeful. With each lab draw the perfect dose of 6mp feels closer. While the winds of the storm test the dragon’s flight, her momentum is consistently forward. She is strong. We are strong. Because of you…our family is strong. Thank you for your continued support and love.
Love is Life.