New in 2018, JUST TRYAN IT is honoring a childhood cancer patient / family as the Face of the Race. The Face of the Race will share their story and be at the triathlon to meet and inspire our racers.
Whitaker – Face of the Race, Alexandria
This story was written by Whitaker’s dad, Seth.
By Sunday, our son had stopped crawling or turning his head. Two hours later we were admitted to Children’s National Medical Center here in DC. It took three teams of doctors and a few misdiagnoses, but six days of testing later we were told Whitaker has Stage IV High-Risk Neuroblastoma, a childhood cancer affecting around 700 kids a year in the USA. And with that, the life we had always dreamed of for our kids vanished.
The cancer was everywhere: Whit had a tennis-ball-sized tumor above his kidneys; his entire skeleton lit up under scans, showing that every bone was compromised, complete with a scary spot inside his head. Since then, he has endured chemotherapy, radiation, two bone marrow transplants (both month-long isolation stays in the hospital room), Surgeries, antibody treatment, home medicines, and tests and scans galore. He has spent over 200 days (in three different cities) separated from his home and most importantly, his older sister.
Erin had to quit her job and is now a “stay-at-home-nurse.” She once doled out over thirty syringes of medicine in one day. We moved to a cheaper apartment. Our daughter has to limit her friends from coming over, and she changes her germ-ridden school clothes immediately upon coming home. She knows to be gentle and has learned that his mood swings are a result of steroids, not his character. Whitaker spent his toddler years with nurses and doctors, not toys, dirt, and playgroups.
One parent is always with Whitaker and the other with his sister, so we when he is in the hospital, we don’t see each other more than ten minutes every few days. Thankfully, both sets of Grandparents are freshly retired, so they are able to help us. One set moved here to help out, and his other Grandma rescues us during his long hospital stays and manages to run the house and keep everyone clothed and fed.
But the future isn’t set, and we look forward with hope. The Cancer is now out of his skeleton, with just a small patch remaining in his skull. Almost all of his hair has grown back. The tumor was cut out, and then the tumor site was radiated to eliminate any small leftover “bits.” He may walk with a slight hitch in his gait but runs after his sister and her friends just fine. The chemo part of his treatment is hopefully done, and so as we move on to other treatments his immune system is regaining strength and our son is beginning to play with other toddlers, but sharing when he’s only ever played alone, can be tough for a three-year old. We might get to go on an actual vacation!
Living with Cancer is normal for Whit. He still just wants to throw a ball, play with his trains, and visit the garden to smell flowers and overwater his special plant. Hopefully, we will bring him to school in a couple years.
We know there is a 50% chance of his Cancer coming back, and we will face that if/when it does, but until then, we—all of us, Whit, us, our friends and family, and you—can only just keep tryan’ to live as best we can.
We are excited to welcome Whitaker and his family back at our finish line handing out medals to the racers as they cross. Join us in Alexandria, September 16, 2018.