Apr 21, 2016 7:30pm (Scott)
The past few weeks have been smooth. We’ve seen stable, strong labs and a very energetic three year old girl back to her usual behaviors–both good and bad. Thinking back to our first panicked drive to Oakland on February 12th–it seems like a lifetime ago–I wondered then whether or not we’d ever see our little girl healthy, happy, spunky again. It is an absolute blessing that I can say that I have–she is here in full force having weathered the initial storm and emerged on the other side, seemingly unchanged.
I think it’s at times like these that parents might begin to wonder whether these next stages of treatment, these escalating doses of vincristine and methotrexate, more steroids, and more lumbar punctures are really necessary. She looks great, just what you’d expect for a child pushed to the brink and now healed–maybe it’s all over. But many decades of research and trials and tragic losses paint a very different and very compelling picture. My heart breaks for the kids and for all those people who’ve suffered and helped modern medicine to learn and to be as effective as it is. We know the illness is still there, and we know the many paths it would take to overwhelm Maya’s body. So we will move ahead and do everything in our power to ensure the leukemia never gets the chance.
This is day one of Interim Maintenance I, a 57 day phase with increasing doses of IV chemo (vincristine and methotrexate) every ten days. With each phase there’s a set of new challenges: a new schedule of blood draws and visits to the infusion center, new side effects, and new potential risks to major organs or infection as cell counts waver. We learn as much as we can as fast as we can from the professionals we work with and from the other families at different stages of the treatment. But it’s a little different for everyone, so we know the most important thing will be to pay close attention to our little girl and do the very best we can as often as we can.
Finishing a phase of treatment is a wonderful thing, but at this moment the stress levels have jumped up again as we prepare for more of the unknown.
We’re so thankful for the continued support from friends, family, and strangers. A special thank you to the Firkin and Fox in Carson City, to Jim and Gabby Phalan for hosting a wonderful benefit.
Another special thank you to Grandma Sandy, Bapa Pat, and Aunt Katie for looking after Maya and Linco so Sara and I could get away–every moment of our ten hour vacation helped relax and rejuvenate our spirits and added strength to keep us rolling along.
We thank you all for your continued thoughts and prayers, and the list of those we keep ours continues to grow… Ethan, Alicia, Kyra, Victoria, Kyla, Amaya, Danton, Jim, Mark… know that you are not alone… Strong and calm… never afraid. This world can be a very big, very lonely place, but together we make each other strong. Our strength is your strength–Thank you.