April 26, 2017     (Sara)

Through out this journey, there have been times when I have had to remind myself to breathe. Just breathe, Sara. You have to breathe. I have held my breath more times than I would like to admit during this journey. And for the last two weeks…I think I have taken sips of air while holding all that I have in. Hoping. Praying. Wishing. Visualizing. Meditating. Holding on to the idea that my little girl is still in remission. I feel like I couldn’t really quite catch my breath.

Today we traveled to Dr. Zucker’s office for…what seems to have turned into the biggest “lab draw” or test this year. Last year had a few lab draws and diagnostics that were impressionable. Of course, the blood sample that Papez ordered that diagnosed Maya…and the results of her second bone marrow aspiration that indicated she was in remission. We had waited to hear if she was in remission and what risk level she was for what seemed like eternity. Those results were excruciating to wait for. Today’s lab draw seemed as terrifying as last year’s.

Last week’s labs indicated her ANC dropped further to 90 and her WBC increased WBC to 2.1. Dr. Zucker was kind and he physically looked at a blood smear to see if he could see any abnormalities. He called me back immediately and offered good news in that he did not see anything strange. We knew that 6mp takes a while to detox from the body so last week’s labs were terrifying but we were instructed to…well to not freak out yet.

Today we got to speak with Dr. Z even though I’m sure he was very busy and we were not scheduled to see him. We were just there for a Budda Button access with Denise. He spoke with us about possibilities and about options. He had not scheduled a bone marrow aspiration yet but that was a possibility depending on what today’s labs showed. If no recovery, we’d have to determine if she was still in remission. And we’d ALL start freaking out.

I’m unbelievably happy to say…we will not be needing a bone marrow aspiration this time. She appears to be in classic blood recovery mode and we will be resuming oral chemo tonight with Methotrexate. 6mp will resume as soon as we pick up the new prescription.

Motherly Assessment:
ANC 640
Platelets 390
Hemoglobin 9.4
WBC 3.5
These are numbers I never thought I would be so happy to see. While she is anemic at this point, RBC take a while to replete. She’s working hard on healing and I know she is well on her way. She continues to eat well, drink, and POOP. Stubbornness is the worst part as she most certainly associates moving her bowel’s with some pretty gnarly memories. We’ll work through this together and until we are healed from that…there is Mira Lax and CALM to the rescue.

The dragon appears to have been struck out of the sky. She hunkered down in her cave but is peeking out for a return to flight. Her armor is strong but even a dragon is vulnerable. She flies fiercely and flies high. Even with a hemoglobin of 5.7…she shows very little signs. She fights through discomfort and spits fire at weakness. We have been humbled and realize that while our strong dragon continues to win, we cannot let our guard down yet. What we can do is breathe. I work on this as much as possible and I hope today’s news helps those of you also holding your breath….exhale. Thank you. We love you. And Love is Life.