Jun 25, 2016 10:43pm (Scott)

Maya’s latest clinic visit went smoothly. We ‘welcomed’ the second week of DI with 20160624_104512a new dose of doxorubicin (aka koolaid kicker), vincristine, and an ANC north of 3000. The elevated cell counts are a side benefit of steroid therapy.  Friday begins a one week break from decadron (steroid) and marks the 8 day point since the first dose of doxo–its effects hit a peak around 10 to 14 days, so we’ll expect much lower numbers on Thursday.

We celebrated Bapa Pat’s birthday Saturday evening with a BBQ (see Linco’s party shades) and small gathering at home. We took advantage of Maya’s strong ANC, and she had an absolute IMG951232blast. She and Lincoln played in the backyard with two Grandmas, two Bapas, and one superstar auntie as the sun was sinking and the summer temp was cooling off. I’m sure she hasn’t felt great in quite a while with all the meds she’s on, but you wouldn’t know it watching her run, jump, scream, and play. Her joy and excitement continues to transcend the chemo funk.

Earlier in the day, Sara and I watched a speech given by our friend Victoria Matthews at the HOSA (Health Occupations Students of America) International Conference in Nashville. Victoria is a very impressive young woman working through her sophomore year in high school despite being treated for a rare form of AML (acute myeloid leukemia). You can watch her speech here (you will need to enter an email to get access; the speech starts at minute 52). As Sara and I watched Victoria recount the ups and downs of her journey from diagnosis through seven months of treatment, we were both struck by her confidence, composure, and openness. For quite some time before her experience with AML, Victoria’s career goals were focused on the medical field–in particular a specialization in pediatric oncology… extraordinary circumstances for an extraordinary young woman with undeniable potential. As we listened and contemplated all the contributions Victoria will make toward treating and curing childhood illnesses, Maya felt compelled to interrupt with, “If any of you guys need a new tissue there’s a whole thing of them right here on the table.” Sweet kid.

We’ve met so many kids and families through our experiences with Oakland Children’s Hospital, the Renown Children’s Infusion Clinic, etc. finding their way through diagnosis, treatment, successes, and setbacks. They fight as they live, day to day with the small struggles over fear of needles and procedures and side effects and a plethora of meds on very strict schedules and limitations on refills and insurance coverage. But in between those small battles there are glimpses of normal life–it does go on, and it gives us hope like the familiar landmarks we pass returning from a long road trip. We know that just over the horizon things look more like our natural surroundings–more and more like home. The kids continue to grow–new words and questions and clothes outgrown. They grow through this as though growing is the obvious priority, which of course it is. It’s only everyone else who needs to be reminded that being sick isn’t the most important thing in the world.

Thank you Victoria, for having the courage and grit to make the drive more than 2000 miles and more than 30 hours to Nashville to deliver a speech and make a firm statement that your dreams and your life come first. Maya is pretty sure you’re a superstar, and I’m pretty sure she’s right.

Thank you everyone for your continued support and love. We wish you all good health, success, and courage.  20160623_195133