September is Childhood Cancer Awareness Month. Each day I will feature a different guest blogger who will generously share their personal experience with childhood cancer. Stories are always more potent than statistics. The hope is that by learning about children with cancer, readers will be more invested in turning their awareness into action. Read more about this series and childhood cancer HERE.
By Sandy Barrow
Many people divide their life into “before” or “after” events –“before I got married…,” or “after we moved…” I am one of those people and my event divided my life like nothing that came before it. It forever changed the course of my family’s life and continues to do so today. The date is forever etched in time—September 23, 2000. On this day, my perfectly healthy appearing and acting 3 ½ year old son, Sam, was following his big brother’s lead of rolling backwards off our couch.
He fell and hit his head and started acting like he had a concussion. We ended up in the emergency room having a CT scan of his head. I then received the words from the ER doctor, “I have good news and bad news. The good news is Sam does have a concussion, but there is no skull fracture, no internal bleeding. The bad news is we believe we found a mass, a brain tumor, located in his cerebellum.”
My world instantly stopped spinning. I had to call my husband on the phone at 2 a.m. to tell him. Middle of the night phone calls are NEVER good, and this one continued to prove this theory. That doctor standing there, giving me that news, became the defining moment in my life, the distinct division of time. Life, as I knew it before that moment, would never be the same.
Sam passed every neurological exam given to him and even his MRI didn’t make sense to the neurosurgeon. There was no enhancement (typical of brain tumors,) and three of his ventricles were completely blocked and the fourth was barely functioning due to hydrocephalus. But Sam was hopping around on one foot and playing catch with the doctor.
Four days later, I handed my healthy appearing son over to the neurosurgeon—before this, I thought I had done some pretty scary things. Nothing compared to this. He handed me back a very sick, scared little boy who we had to get to know all over again. Some days, thirteen years later, I feel like we’re still doing that. It was brain surgery, after all, the organ that contains the stuff that makes us, well, us.
After surgery, the doctor was able to tell us that he removed a golf-ball sized tumor, medulloblastoma, from Sam’s cerebellum. It was as close as it could be without being attached to his brainstem. It also took more than two hours to drain the fluid that had accumulated in his brain. We were told that the “window” for symptoms to begin appearing would have been very small and that more than likely, Sam would have lapsed into a coma and died. The tumor was getting ready to herniate, or “explode” in Sam’s brain.
I was bearing witness to a miracle.
Sam had a pretty tough time after surgery. He couldn’t walk, couldn’t talk, could only scream and vomit. We had about a month of reprieve and healing at home before the grueling and horrendous radiation started. Every day for six weeks, Sam received radiation to some part of his brain and spine. He was so sick, and I’m still not sure how he survived that six weeks.
About four weeks after radiation ended, 48 weeks of chemotherapy began. Sam was not your “smiling, bald kid” during any of this. He literally kicked and screamed his way through treatment. My Mom says that’s what got him through that part of the journey. He literally fought for his life. Little did I know at that time, that he would have to fight to live. He slowly began to heal. Milestones that he had achieved were achieved once again and celebrated vigorously. In December 2001, he was done with active treatment. A whole new level of scary….what to do now?
After is just a different path on the journey. It does not mean cured! Webster defines “cure” as “recovery or relief from a disease; a complete or permanent solution or remedy.” What Sam, and our family, was left with was neither a relief nor a solution.
Sam’s last 13 years of life has consisted of about thirty MRIs, too many tests/blood draws to count, hearing loss, cataracts removed from both eyes, migraines, learning disabilities, a cavernous angioma, growth hormone deficiency (he’s 16 and 5’1” if he REALLY stretches—that’s it, he’s done growing), hypothyroidism, adrenal insufficiency, and we’re currently watching his male hormones starting to not function. Those are the things we deal with now. He is at high risk for many other late effects, including other cancers. They are the “gifts” from treatment. It’s a fine line that we walk trying to be grateful that we got this far–I was once told that you have to have life to have side effects, but still.
Just as Sam fought through treatment, he has had to fight to live like a “normal” kid. Soon after him telling his story at a brain tumor fundraiser he organized at school, the taunting, teasing, and bullying started. We live in a community where differences are pretty much not accepted—they are cause for exclusion and being treated differently. I realize that kids will seek out whatever they can that they deem “different” about someone—height, weight, hair color, etc.—but to know that Sam being a brain tumor survivor was their “something,” their reason for telling him he couldn’t eat lunch with them, their reason for not picking him to be on a team, their reason to shun and ignore him, their reason to call him “tumor ass,” well, there are no words to describe a mom’s heartbreak.
Not one classmate has stood up for him, not one. I often ask in my darkest moments, “He survived for THIS???”
Sam just keeps fighting. He’s never once asked not to go to school and has maintained High Honor Roll status the last six years. Take that brain tumor and bullies! These kids are the ones missing out. They are missing out on knowing a pretty awesome kid who could teach them an awful lot. My hope is that at some point he finds that one true friend that will accept him for who he is. Maybe then he can stop fighting.
Max, Sam’s older brother, was 7 when Sam was diagnosed. He dealt with the same worries and fears as his Dad and I. He’s been there for Sam since the beginning. He saved his life twice. Once, by showing him how to roll off the couch allowing the tumor to be found. The second time was a few weeks after we brought Sam home from the hospital.
Sam would just sit on the couch, propped up in the corner, and just look at the world going by day after day. One day, Max kept crawling by the couch, pushing Matchbox cars. Imagine my surprise when I walked into the living room and didn’t see Sam on the couch! He had gotten himself off the couch and was giving everything he had to follow along with Max. The crawl wasn’t pretty, but he was moving.
From that point, Max has had his back, from helping him learn things, being so patient with him when he works himself into fits of frustration, to being the only student at school to stick up for him. He had to grow up pretty quick and he’s wise beyond his 19 years. Max knows what HOPE is and literally carries it around with him. To honor Sam, he has a tattoo that represents childhood cancer, Sam, and HOPE. Twelve years later, his worries and fears that he deals with are still the same as his Dad and mine—what does the future hold for Sam?
I know that as long as they have each other, things will be okay.
My family’s life before cancer doesn’t get visited very often. Pictures don’t get looked at and home videos don’t get watched. There are no winners in the “What If?” game. I don’t want to go back. We just have to keep looking forward, HOPING…..ALL ways, always.
If you’re looking for all of the posts in the Childhood Cancer Stories: The September Series, you can find them catalogued HERE.
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Mary Tyler Mom 