September is Childhood Cancer Awareness Month. Each day a different guest blogger will be featured who will generously share their personal experience with childhood cancer. Stories are always more potent than statistics.
By Beth Cook
My son Travis is thirteen years old. He was diagnosed with an inoperable brain tumor when he was eight. He was a perfectly healthy, smart, athletic child, until the day he rode his bike off of the porch. I took him to the ER, thinking he had a concussion. I was not prepared for what came next.
Weeks that felt like months, tests, trips to the city, a parade of doctors, blood draws, scans and so much activity I couldn’t wrap my mind around it. The whole thing felt surreal. I kept waiting for someone to tell me it was all a mistake, or at least they could make it all better. Nobody did. There were no answers, no reassurances, just a lot of scary medical terms.
The tumor is inoperable because of location and nature of the tumor. It isn’t a solid mass, it’s cells with errors invading healthy tissue. It partially blocks a ventricle (drain) and pressure in his head was increasing. He needed surgery to place a shunt in his brain to help drain fluid. Two months from the beginning of our journey, we were told the tumor was stable and a wait and watch approach would be taken.
For two years, the tumor remained stable. Eventually, life went back to almost normal. During the summer of 2012, Travis began having troubling symptoms. An MRI showed his shunt was malfunctioning and his tumor was growing. Kissing your child goodbye and watching as they are taken away for brain surgery is a terror I cannot describe.
Travis began chemotherapy the day before his tenth birthday. We both thought we could continue our lives as normal, but it was not to be. Chemotherapy was very hard on him and he got really sick. I had to go on leave of absence from work and become a full time care giver. Our expenses skyrocketed and our income dropped to almost nothing. I’m a single mom and we relied on my income, but the only thing that mattered was Travis being okay.
We became frequent visitors to both the oncology clinic and the emergency room at CHOP (Children’s Hospital of Philadelphia). Sometimes he was admitted, sometimes not. His blood counts dropped, so did his weight. He endured countless sticks, blood transfusions, IV fluids, tests and scans. He became so weak, he needed a feeding tube. Through it all, no matter how sick he got, he never lost his smile.
Travis ended chemotherapy last year. It all became a bit more routine, although hardly normal. We don’t know what the future holds. We don’t know if the tumor will remain stable off treatment. The day I was told this tumor could kill him changed me forever.
I have struggled to keep our bills paid and my car on the road. Some days I don’t think I can keep going, but one look at Travis and I know I’ll keep doing whatever it takes to make him happy, safe and well. He told me when he was eight years old, “Mom, you don’t have to worry about me. I’m not going to die. God didn’t put me here to take me back so soon. I have a destiny. I have to help kids with cancer. I’m not going anywhere, I have too much to do.” He has never strayed from that belief. He plans to be a pediatric neuro-oncologist when he grows up.
Travis has an engaging smile and instinctively knows how to put people at ease. He’s an amazing boy, so full of compassion. I’ve seen him hold the hand of a three year old who was crying and trying to hide so he didn’t have to get a “poke.” with a needle. With Travis by his side, he was willing to be brave.
I’ve seen him cradle a four month old baby with a brain tumor and make her smile like he hung the moon. I’ve seen him lift his shirt to show a younger child his accessed port and scars so they wouldn’t be so scared. I’ve watched him bring comfort to kids and parents alike in clinic. I’ve watched him encourage other kids to participate in art projects, draw them pictures, or play with them to keep their minds off why they’re there. I’ve watched him start a “snowball fight” with gauze pads with a bored four year old who was sick of sitting in the chair while the chemo drugs slowly dripped into his little body. Only Travis can make his nine year old buddy go from crying to giggling because Travis threw a ball of model magic at him and got him to play.
He has an incredible gift for knowing how to make other kids with cancer smile and put their parents at ease. I’ve seen the gratitude in the faces of other parents when he does what he does so well. I’ve seen him drag himself out of bed at 6:30 am, the day after chemo, to give a speech at a Middle School to the entire seventh and eighth grade population about his journey. He felt awful, but spreading awareness and raising funds is more important to him than how he feels. For his birthday, he asked for money instead of gifts so he could donate it to the foundations that have given him reasons to smile. He is growing his hair long so he can donate it to another child.
Travis is passionate about raising funds and awareness for childhood cancer and has become an incredible public speaker. I am awed by his compassion, strength and courage. I am honored to be his mom. He’s my inspiration, my baby, my hero.
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Mary Tyler Mom 