Mar 16, 2016 (Scott)
I often forget to thank those closest to me–those whose support has no substitute (I can’t see the forest for the trees I guess). I couldn’t do any of this without my Muse, my Love, my Wife Sara. We’ve worked through this as a team–as we always do–sharing the burdens, the tasks, the responsibilities, the stress, and the joy. Sara is my one; I adore her. She makes me laugh, she challenges me, she comforts me, and I trust in her intuition. I know she and I could survive this under different circumstances, under more difficult circumstances; she makes me stronger, as strong as I need to be, and together we have no limits. That said, I’m grateful for the circumstances we have–for the support we have and for the path laid out before us. There are unknown numbers of ingredients that are critical to our success in this fight–family, community, faith, hope, strength, patience, dragon’s fire, chips and salsa and sourdough bread. For me, the critical ingredient is My Love…. I adore you, Sara Moore. You are absolutely amazing, beautiful, and one of a kind.
There is much to celebrate today. Our trip to Oakland and back was on schedule; we arrived home this evening at about 10pm. Maya’s procedure went as planned with no surprises–lumbar puncture, intrathecal chemo, and bone marrow aspiration. Maya took her last dose of Decadron this afternoon–mind, body, and temperament can begin to recover. Special thanks to the Family House at Oakland Children’s Hospital for making space for us Monday night; I don’t know what we’d do without them, and I’m so glad we haven’t had to worry about it.
The drive to Oakland was smooth. Traveling a long distance with two kids in car seats is rarely easy, but they both handled it well. Avoiding crowded public places like rest-stops and convenience stores makes pit-stops special opportunities for family bonding–the port-o-potty in the back of the SUV is a nice touch, and we had the opportunity to try out many more off-ramps than usual. The only complaint out of Maya was that she was hungry, and we’d packed plenty of snacks. Grandpa Pat handled feeding and entertainment duty in the back seat with exceptional results.
Speaking of hunger, Maya began pre-surgery fasting at midnight Tuesday morning. This started to become an issue about 9am when she saw a coffee bar in the hospital lobby with fruit and scones–“That smells good,” she said. “Ooooh, they have food.” By 11am the hunger became a bit more… shouty. There was commotion. People noticed.
All went well with the procedures. Recovery was standard, and food was first on her mind as she woke up. The recovery nurses were terrific and managed to get her a sack lunch from downstairs. She pretty much just ate food for the next two hours–it’s a little scary to see a kid eat three hard boiled eggs in a row… as an appetizer. We’re happy to be finished with the steroids.
As Maya was recovering, we got a look at her labs from the morning: platelets had increased to above 200, hemoglobin had decreased slightly to 8.6, but her white cell count had increased to 4.4 and her ANC had jumped dramatically to 2200. Sara and I talked the rest of the day about what this means, what’s expected, and whether or not we should be excited; at this point we’re cautiously very excited.
We should know the results of the MRD (minimal residual disease) test on Friday. This will be critical information to determine her risk group going forward.
It’s been a very long couple days with little sleep and a lot of driving, so I’ll wrap this up with some gratitude:
Thank you to Oakland Children’s Hospital for treating each child as the most special one and treating parents with illimitable care, respect, and patience.
Thank you grandparents for your strength, energy, and help.
Thank you to Maya for carrying the weight of this illness and this treatment with the ease of someone who know’s she has what it takes to win.
Thank you to Lincoln for rolling with all this turmoil like it’s just another day in paradise. He’s just barely turned one, and we’ve put the poor kid though weeks of chaos in Oakland, a new house, very little regularity in his day to day life, and twelve hours of driving in the past two days. It was tough to get him to sleep in another new location last night and with all the focus on Maya being ready for her procedures. He handled everything else with ease until we were about an hour outside of Reno tonight, and the poor little guy had just had enough of the car seat. He cried in that exhausted, choking way that just breaks your heart, but considering all the different ways this trip could have gone, this was not so bad. So, thank you, Linco, for being the strong little man we need to to be and for making your sister laugh when she needs a distraction.
Through all this, Lincoln has learned to walk, made every new place his home, and perfected a unique dialect of Ewok. . . I’m pretty sure it’s Ewok. . . “Eee-woo uh choo tah,” sounds like Ewok anyway.
Thank you for reading and caring. Your support means more than you know.