Nico’s blood counts (specifically his white blood cells) continue to be higher than desired. As written previously, the goal of the maintenance phase of treatment is to keep the bone marrow in a suppressed state. There is a delicate balance -- keeping the marrow suppressed but still functioning enough to allow Nico to fight potential infections. There is a chemo protocol that we follow, but there are individual biases of treating physicians. Our treating oncologist is adamant that in the maintenance phase of therapy, the only positive corollary in treatment success is tight marrow suppression. So we continue to tic up the dosage of chemo each month in response to these high counts. One of two (of several types) chemo drugs is titrated in increments of 25% each month. So now Nico is on a dose of 150% of both his daily and weekly oral medication. They will not increase his monthly IV chemo (thankfully).
We have a lot of questions about how we are proceeding, but I will hold off on updating that portion until next month when we have seen our doctor and gotten counts since the last dose increase. Basically, it seems (and our doctor confirms) that Nico’s metabolism of these chemo drugs has changed. And now he requires a higher dose to achieve the desired effect.
Summer is great. Nico took a trip to Salt Lake City for a family wedding. We were able to see family and friends though not everyone we wanted. It was a special trip. Nico was surrounded by so much love there. And we were able to connect with some of the people that have been on this journey with us from the beginning. We were also finally able to meet and thank Rebellion, a girls’ softball team, who has played in honor of Nico via the Wacky Warriors pretty much since the beginning of treatment. It was a restorative trip.
I will keep this one short with the intention of updating again very soon!