September 22, 2018 (Scott)
September is Childhood Cancer Awareness Month. Today is September 22, 2018. Five months have passed since the conclusion of Maya’s treatment for standard risk ALL. Her monthly labs look great, her port has been removed, and our scars are healing.
Many years ago, I read a manual on motorcycle riding that said it’s a mistake to focus your vision on hazards in the road. Looking directly at the thing you want to avoid tends to steer you closer to it. Instead, recognize the hazard and focus your vision on the clear path through the trouble. Similarly, it’s hard to hit a baseball by telling yourself not to strike out.
From Maya’s diagnosis, through her treatment, and now in the mysterious world of the aftermath, we’ve come to recognize a multitude of hazards. Looking back, it’s hard to say whether or not we fixated from time to time, out of fear or frustration, and rammed right into more trouble than necessary. Some of that is inevitable I suppose– we’re only human, imperfect parents, and driven to give our children every chance for a long, happy, healthy life.
I can say for certain, though, that we often fixated on the life beyond treatment– the family vacations, the first days of school, and the mysterious wonders beyond this immediate set of hazards in our path. The fact that we were even able to do so was the result of great treatment and great support.
Maya finished treatment on April 21, 2018. In May we threw a giant party with our friends from Shoetree Brewery and Sassafras Restaurant. A bounce house, DJ, and face painter were all there as donations, and businesses and individuals gave services, crafts, and cash for raffles. Hundreds showed up– friends, family, and strangers, and we raised over nine thousand dollars for the Northern Nevada Childrens Cancer Foundation. It was a beautiful event and a testament to the power of caring community.
In June we went to Kauai with family and friends. We hit the beach every day, went hiking and paddle boarding; we cooked, ate, and laughed together, and the kids did exactly what kids should do when they get to live in a beach house with their friends for two weeks. It was amazing– I
even took up surfing. As messy and complicated as it was, I realized this was
the best vacation I’ve ever had in my life.
Now we’re simply adjusting back to some kind of normal life, though I question if there really is such a thing. They say the only constant is change, and parents are reminded of that every waking moment. Maya and Linco are growing fast, learning fast, and taking on new challenges, like kindergarten. Actually, the transition to kindergarten is more challenging for Sara and me than for Maya– she seems ready for anything.
I don’t think I can tell you how grateful I am for the love and support my family has received. I am grateful for this life and for the chance to look beyond the hazards, to fix our vision on the beauty and strength waiting just beyond. The beauty and strength is in the people like you who share their courage to lift the spirit and guide the path of those who momentarily struggle. In that act, we can all be heroes. And we are forever grateful for our heroes.
We will be closing our caring bridge site and continuing to post periodically on MayatheDragon.com. Please keep in touch. With love, thank you.