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.
P.S. If you want notification that I have posted, there is a RSS feed in the far right column that allows you to subscribe.