by Keren Fitzgerald
Mom to childhood cancer hero Cole Fitzgerald
I was hoping the first line of this blog was going to be… “Eureka! Cole has mastered riding his two-wheeler!” But, I would be getting ahead of myself.
I’m sure every parent cherishes every milestone that their children achieve and we are no different. First words, first steps, potty training, first baseball game, first bike ride without training wheels, etc... None of this has come easy for my son, Cole. He is a stage 4 neuroblastoma survivor who was diagnosed at 2 and remains cancer free at 9 - an absolute blessing. And I am grateful for every day that we have his beautiful soul here on earth with us because I know he is in the minority of children surviving their disease. However, what most parents take for granted in their young child’s developmental life - we have had to hope, pray, strategize, coach, encourage and flat out fight for him to achieve. And we still have quite a road ahead of us.
The journey for every young childhood cancer survivor is a fight for normality. The fight we fought through his cancer treatment 6 years ago still echoes in our lives to this day. Survivor is a relative term. Cole bears the lifelong scars of receiving adult level chemotherapy and radiation. He lost part of his hearing at age 3 because of a specific chemotherapy drug that was part of his treatment protocol. We knew the risk going in, but the treatment decisions we made centered on saving his life and dealing with the aftermath later. He wears hearing aids full time, has an auditory processing issue and receives varying degrees of interventional services at school. He has some balance issues as well, due in part to a congenital hip defect, but we also know that his cancer treatment impacted balance and some cognition too. Cole has seven specialists following his care on a semi-annual basis. In every discipline from neurology, cardiology, endocrinology, ophthalmology, etc...he has a specialist that is helping him and us understand the aftermath of cancer treatment and what his future will bring.
Schoolwork can be challenging for Cole at times, but with extra tutoring and support, he achieved honor roll four consecutive marking periods this year. Honor roll for a child who has had as much cancer treatment as Cole is an amazing accomplishment.
We strive to treat Cole the same as his two incredibly gifted sisters who naturally excel at everything they do. The girls are a tough act to keep up with, but they provide great motivation for him. But deep down, his dad and I know that he will have struggles in his life that his sisters won’t, and we choose not to discuss them in front of Cole. Instead, we serve as his relentless cheerleaders who encourage him to do the best he can to achieve his full potential and step a little closer to the normal. In case you are wondering, there is nothing normal about any of this, but I like to say that we do the best we can and we take each day, week, month and year as it comes. Despite the bleakness of everything I’ve mentioned so far, I forgot to tell you the one thing that Cole has a result of his cancer diagnosis - resilience.
Cole has a ‘happy-go-lucky-light-up-the-room-smile’ and personality, but don’t let that fool you. He is 51 inches of pure determination. Cole’s enthusiasm is never ending. He springs out of bed every morning with a smile and a ‘let’s go’ approach. We saw his spirit throughout his treatment - wanting to run up and down the hospital hallway while receiving his chemo, trying to spring out of bed after surgery, demanding five grilled cheeses in one day because, "he needs to grow bigger than his cancer" (his words). He is passionate about playing sports - he loves to play baseball and is working on his green belt in karate. Cole is a “yell and cheer at the TV” fan for Philly sports teams across the board. As he has gotten older, he has become fearless about speaking in front of large groups of people about his cancer journey and Alex’s Lemonade Stand Foundation (check out him presenting an award at this past year's Lemon Ball). He is passionate about hosting lemonade stands, just like Alex was, because he is compelled to give back to the kids who have not been as lucky as he. So back to the bike riding...Cole was honored to lead off last year’s inaugural Lemon Ride as he proudly called to the riders, “Gentlemen, start pedaling!” in a megaphone that he so wanted to take home with us. (No, that did not happen thankfully!)
He had been riding a small bike with training wheels for some time, but had been struggling to master two wheeled riding. He told me last year that he was going to learn how to ride for this year’s Lemon Ride so we bought him a brand new ‘crank-forward’ bike… no ordinary department store bike. After assessment at two different bike stores and a ton of online research, we purchased a bike that would help Cole ride successfully despite his hip and balance issues. He has been practicing since the weather broke, took a break for baseball season and is now back at it.
As I type this, he is still working on it. Right now he can sit on and pedal/coast the bike, but we are working on starting, stopping, not crashing and staying on the bike. So we’re not exactly riding independently just yet. I’m out there with him trying to be the cheerleader, but it is tough watching him struggle. I’m not giving up and just when he is about to, I remind him of all he’s overcome to date - and to his credit, he keeps trying. I don’t think either of us is ready to give up. For him, I know he wants to ride independently with his friends. For me, I refuse to let his cancer take one more thing away from him.
As I type this, he is still working on it. Right now he can sit on and pedal/coast the bike, but we are working on starting, stopping, not crashing and staying on the bike. So we’re not exactly riding independently just yet. I’m out there with him trying to be the cheerleader, but it is tough watching him struggle. I’m not giving up and just when he is about to, I remind him of all he’s overcome to date - and to his credit, he keeps trying. I don’t think either of us is ready to give up. For him, I know he wants to ride independently with his friends. For me, I refuse to let his cancer take one more thing away from him.
So we’ll keep on helping Cole with his bike riding this week, I’m not sure where we will land for this Sunday’s Lemon Ride. He may be riding solo, he may be on a tandem with one of us or we may just put his training wheels back on and strive for next year’s Lemon Ride. We have a small but mighty team this year, The Fightin’ Fitzgeralds, and we will be riding in the 4 mile family ride. Either way, we’ll keep cheering Cole and the other survivors who will be out there with us and continuing to reach for the normal.
July 16, 2013
