March 28th, 2018     (Scott)  

On Monday (March 26th) we visited the infusion center for Maya’s final lumbar puncture and chemo infusion. This was a milestone that Sara and I didn’t fully recognize until we arrived that morning– the infusion center staff had set up a princess-party for Maya complete with Anna/Elsa balloons, gifts, and a cake! This amazing group of professionals has been with us since March 2016, and their care and compassion has made our frequent trips to Renown feel like visits to see family and friends as much as monitoring and treatment. We cannot thank them enough for cultivating an environment of comfort and healing within our journey of anxiety and uncertainty. 

Over the next three days, Maya will finish her last pulse of Decadron (steroid), and over the next three weeks she’ll continue to take her daily chemo med (oral 6mp). Her end date of treatment is April 21, 2018. And then we monitor and assess and get our heads straight about what’s next.

For the past 18 months or so, Maya has been in the ‘maintenance’ phase of treatment, and for nearly the entire time we’ve struggled to find the right dose of meds to maintain her numbers in the right range (ANC 750-1500). During this time we’ve seen her ANC anywhere from 200 to 4500, and her hemoglobin has been anywhere from 5.7 (transfusion low) to 11. While this is a moving target for any patient, and especially for those who are growing and changing so rapidly, Maya presented a unique challenge. Early in maintenance we began including allopurinol in her daily regimen which both helped and complicated the cocktail. I am happy to report that in the past two or three months, Maya’s numbers have slowly and consistently settled into the desired ranges with Monday’s numbers being better than almost any other point in treatment- ANC 1640, Hgb 10.3, Plt 300+. It’s funny that her system finally would start to cooperate right at the very end of treatment, but you know what they say– it’s not how you start, it’s how you finish. As Dr. Z commented, “She’s really stuck the landing.”

We are looking ahead to scheduling Maya’s port removal soon and enjoying many upcoming celebrations (MAY 26 in Carson @Shoetree Brewery!… there will be a bounce house!)

We look forward to seeing you all at some point this summer and thanking you in person for your love and support.

Thank you.