Mar 17, 2016 (Sara)
There is a very warm and palpable spark smoldering within Maya and it is no longer deep down. This spark is about to burst and the start of something more than just a flame…it will be an eminent blaze. One that is already fierce and legendary. Her fire has grown exponentially with every hour today. Maybe her strength came from the loving, enriching, and investing visits with Grandma Sandy over the last couple of days. Maybe it came from the exciting arrival of Grandma Bella today. Maybe it came from St. Patrick’s Day. Maybe her fire started to billow because today is day two without the full force effect of decadron. Maybe it is a combination of many things. What ever it may be…I’m so grateful.
I have heard more giggles today than I have all month. She has spoken more words today than I have heard in weeks. She spend more time outside today than she has since we have been home. She painted 4 pictures. She helped to complete a cool kid sewing project with Grandma. She played in the play room. She read books. She played with Lincoln. She laughed…oh she laughed, and my heart sang. She told Grandma what happens to a caterpillar in the most detailed way I’ve heard her say it (yes…she used the word metamorphosis). She wanted to wear a dress. She wanted fruit. She let me do more than braid her hair….she actually requested snuggles from ME. I probably held her tighter than I have in a year. In fact, as I write tonight…I am sitting on the end of her bed while she falls asleep to her Hawaiian music. A position that Scott is usually asked to keep. I have certainly witnessed a change in her. It hasn’t been drastic but it is more than welcomed. As selfish as it sounds…this change in Maya has been essential for my well being and for the soul of this mommy.
Physically she hasn’t changed as much. We have been told it will take a while for the swelling to decrease but she has gotten stronger. She walked up two stairs today while holding Grandma’s hand. Then she walked down them a couple of times too – she hasn’t walked up or down stairs in a couple weeks. I also saw her walk up one step out back with out any help or encouragement. She looked back at Grandma Bella and I with a crazy face when we cheered. She looked as though “why are you cheering you crazy ladies”. I think she has no concept of her weakness…perhaps it is only us adults who even fathom the weakness. Sometimes she makes this all look easy. She makes it look like all this is just an exercise in getting stronger. Honing her strength…stoking her fire.
Tomorrow we find out how her body…more specifically the leukemia in her body…has reacted to the chemo and steroid therapy. On Day 8, while we were still in Oakland, they took a sample of her blood for part of the clinical trial. They have taken several but this one is specific to the genetics of the leukemia. Not necessarily her genetics of our family, but of how the leukemic cells can mutate or change. A couple of weeks ago, Dr. Salo (the Reno doctor) discussed with us the results. Preferred results will show markers on the cells that indicate a direct sensitivity to the treatment – it would mean that there would be great anticipation that the chemo worked as it should. Other results can show markers that indicate the leukemia is more resistant – it would mean the strong possibility that the treatment would not work as well and that other treatment plans will need to be considered. Maya’s cells…well they were inconclusive. This means that they don’t know. Could go either way or a combination of any of the above…or something totally different. It just means that we cross our fingers, pray, meditate, surround in healing and strong light, and hope…that tomorrow we hear less than 0.01%. That would mean her cells were sensitive enough to the treatment that less than 0.01% are leukemia. It would mean we move on to the “consolidation” phase and that she’d stay in some version of “standard risk”. It would mean remission.
Her labs looked great on Tuesday. Happy would be the obvious feeling…but as Scott mentioned, we are cautious with our optimism. I truly am a naturally optimistic person but lately that optimism has been impeded by fear. I try to keep that natural Sara in the driver’s seat but sometimes she is tired and weary. There are many “big days”…but tomorrow is most certainly one of them. Not because of procedures, or pokes, or infusions, transfusions, travels, emergencies, or even more procedures. It is big because of what may be. Tomorrow will tell us what Maya will have to endure. Tomorrow will unveil Maya the Dragon’s enemy. She has been away at war but now the battle comes home. Breathe dragon breathe for no matter what, we will celebrate your triumphant fire. And we will win.
Love is Life.