Treatment
Eden is still in maintenance treatment for ALL. He was diagnosed at age 3 and just celebrated his 6th birthday. He isn't enrolled in school yet, but hopefully will be this fall once he is off treatment. We are having a very difficult time with him retaining information. We can work for days on the letter A, for example, then the next day, he acts like he has never seen it before in his life. Is it just typical 6 year old boy stuff or is it chemo brain? Its not just when he is working with me, he does this with his occupational therapist as well. He does have white matter brain damage, but we are unsure of exactly what that will mean in the long run. I would love to have a neuropsych evaluation once he is off treatment, but I don't know if insurance/oncologist will approve. Is chemo brain real? Why can't he remember things? How can he learn if he can't remember? Seeing these potentially long term side effects makes me realize just how important survivorship care is and how sad it is that its not offered at our hospital.