This past round of check-ups at Sloan Kettering were quite positive: 1% in height, and 2% in weight. Haley’s just on the growth chart, but it still counts, which means no need to contemplate a feeding tube again. Her bloodwork is stellarly normal, with a bit but only a bit more help with her Vitamin D levels (her levels have always low– the Tacrolimus she was on to prevent her bone marrow from being rejected gave her a higher risk of skin cancer, so we kept her out of the sun most of these past few years). Her EEG was also particularly strong. Haley still has many issues since her bone marrow transplant– allergies, constant diarrhea, and inturning of her toes and feet making it hard to walk, jump, run and balance. And her latest symptom– burning sensation in her fingertips– has made us realize that though she is cured, she’s still a ways to go. Her path out of old conditions is still unclear, and the new latent complications from the chemo regimen she was on — a phenomenon called “late effects”– make that path even more uncertain. We’re working hard to tackle these things as they come, amassing an impressive entourage of specialists including a neurologist, dermatologist, and endocrinologist. As the parent, you feel like you’ve been on a marathon, and when you reach 26.2 miles, you then only find out that the end isn’t there, but rather 100 miles further down. It’s a daunting because there’s less familiarity with the complications– every kid responds differently to the chemo and other drugs and it’s impossible even if two kids had the same exact regimen, how they will do.
We’d like to all resume our daily normal lives, but we’re realizing finally that such is not the plan for us, not yet anyway.