Felix has been missing a ton of school this year. He makes it about 10 days a month. In between his chemo cycles. I just reached out to the school to get a tutor on board. One of his fears is that he won’t move forward with his class. Although he’s missed all of dec-June 2017 and much of this school year he is still determined to learn and he loves to read especially.
Everyone has said that during maintenance we would see a big difference in Felix’s energy level. So far their hasn’t been much change except his hair is growing. That’s pretty exciting for all of us especially Felix. . Life isn’t even close to being back “to normal “. I really don’t see how it ever will be yes, his chemo treatments and lumbar punctures will end in around 13 months from now. But it’s really never over. About 20% of kids who fight hard through the grueling 2 year treatment plan will Relapse. Because of the cancer treatments Felix has received he has a 99% chance of having a chronic health problem and a 96% chance he could developed a severe or life threatening condition. So that being said I’m pretty sure every fever or bruise he has for the next 10 yrs I will be bringing him in to the ER for a CBC blood test. He is doing really well for all he’s going through. He is so very excited to be HOME for Christmas this year. After spending last Christmas at children’s hospital. Although he keeps asking me to promise him he won’t be in the hospital this year for Christmas. I expect he absolutely won’t be but I tell him the truth. That I cannot guarantee it. We just can’t wait to all be together for the holidays this year. Plus Felix’s one yr cancer diagnoses anniversary is Dec 19 th and we want to celebrate his life, his strength and his resilience. We also want to celebrate the strength of our other 3 kids as well it hasn’t been easy for any of them.
So back to Boston on dec 10 th so Felix can get a echocardiogram and more chemotherapy. Just to get back and start his normal cycle of methotrexate, dexamethasone, 6mp and bactrim. Which ends in nausea, very intense muscle and bone pain and severe headaches for Felix. He’s 9 yrs old!! I hate seeing him in so much pain. I wish I could switch places with him so bad. He nor anyone deserves this. Thank you to all who have stayed around us,it means more than you’ll ever know, this is a very isolating experience so we appreciate any and all the help, prayers and random hugs and stop byes . Thank you