Chemo cycles are every 28 days, so we end up at our routine clinic visit more than once some months.

Nico’s bone marrow appears “very robust” and even on the current increased chemo dosage, his blood counts are too high. The white blood cells (neutrophils) that form the basis of determining proper suppression are totally normal – normal for a child that is not on chemo! I know it sounds odd to say that Nico’s normal blood counts are worrisome, but we have been told that bone marrow suppression in the maintenance phase is key to treatment success. Nico’s bone marrow is not suppressed as it should be. So again, doctors are increasing his daily chemo dosage. I am giving the gist here. The above is the distilled version of a very long and involved conversation with our primary oncologist. 

With the increase dose comes more out-of-control behavior. There are extra layers here that make it difficult to navigate. Is he in pain? Is it general malaise? Is the lack of structure and routine of summer an adjustment for him? Is it chemo brain from the neurotoxic drugs? Or is it simply because he has Jeff and me for parents? All are plausible.

Nico’s oncology fellow suggested that in the summer, kids can experience an increase in drug metabolism with the increase in activity. He suggested that in winter Nico’s metabolism may slow down again, and his numbers might fall into place. I know our doctors want to reassure us, and we appreciate that. It feels like we are just riding out a storm.

Nico looks great. You would never know from looking at him what he endures. We incidentally discovered Nico had an ear infection and started antibiotics. A few days later he said, “I feel like someone took off my old ears and gave me brand new ones!” He just accepts discomfort and goes on his merry way. He is a handful, but we are grateful for everyday. We are glad to have our little guy, and if this is the road we have to take to give him a fair shot at life, we will take it.

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A good friend gently reminded me that I needed to update.

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!