30 DAYS/30 STORIES® 2021
There is a fine line between making sure your cancer survivor is living their best life as a normal child and not making excuses for them and actually taking into consideration that cancer will forever be a part of them in some way. As for our amazing child, Max, he is a typical 9 year old little boy who LOVES to torment his older sisters, can be a bit of a pest, plays video games, shies away from sports, loves to dance, hates to read, and loves Legos. Oh, and as a side note he has bilateral hearing aids and one eye - side effects from the retinoblastoma he had as a baby. His original diagnosis was at 4 months old when we noticed a white glow in his pupil.
Side note: as my advocacy speech - if you see a photo of a child 5 years or younger with a white pupil, please encourage their caregiver to bring them to the pediatric ophthalmologist immediately. Just to be on the safe side.
Back to Max - he had 6 months (12 rounds) of chemo - not a whole lot in the cancer world. One of the chemo drugs was possibility ototoxic (damaging to his hearing). We certainly were not going to reject the chemo that would be saving our child's life, on the off chance it may affect his hearing. A very, very small percentage of children's hearing is affected. Max was done with chemo before he was a year old. Over the next two years he received eye treatments to control the tumors in his eye and it worked brilliantly. By three years old, all was quiet. The summer before his 5th birthday (when he would officially be in the clear of any recurrence) the doctor opted to remove his right eye, because the tumor was no longer visible for her to monitor. As a precaution and to be proactive in protecting his life, should the tumor reactivate and spread, the unhealthy eye was taken out, and he received his super cool, healthy, prosthetic right eye. No one, not even Max because he never had sight in it anyway, knows the difference.
As Max began his educational career, his teacher mentioned getting his hearing tested. Sure enough, he fell into the very small category with ototoxicity. With significant high-frequency hearing loss, he received bilateral hearing aids, which he hated to wear. I wasn't going to argue. He needed to protect his good eye by wearing glasses. There was a lot going on behind his little ears, and I wasn't going to push for him to wear them. As he got further into school, we realized that the hearing aids were critical to wear. But my focus has always been protecting the eye and wearing sunscreen because he is pre-disposed to melanoma. Other than that, he is a normal kid. We treat him like a normal kid. Push him in school, on the soccer field, in chores at home, etc. And he grew and developed as a kid not thinking he had any disabilities. We did not treat him as if he had disabilities. And he began to compensate in life. He adapted. But deep down, this kid was struggling to hear, to see, to understand what was going on in groups with lots of sound and input. And we never knew. Just two months ago, his 3rd grade teacher recommended possibly getting a 504 plan. That set a ball in motion of significant discovery. Through testing, evaluations, observations, we have been discovering how insanely amazing this kid is, and how hard he has truly working at being a normal-functioning kid, as if there was nothing different with his vision and hearing. Now is the challenge to help him without calling out the differences. But it can and will be done.
The truth is, cancer gave him these differences. Through these differences, he also received strength and grace. That's the thing about cancer, when you think it is in the rearview mirror, something pops up. Not necessarily life-threatening but challenging. His cancer story continues, and we continue to learn the true and amazing miracle he is.
Written by Max’s mom, Tina
Please consider donating in Max’s honor to support PCFLV's mission.
Please also consider helping local kids with cancer by donating blood at Miller-Keystone Blood Center: