As I type, there is a mother and a father, or a single parent or caregiver being brought into a cramped little room in a hospital and the feeling of fear is palpable. Four words will be said in that room that will cause the lives brought together there to change forever: “your child has cancer.” It is a story that repeats itself over and over again with increasing frequency. In the United States, more than 15,000 children a year are diagnosed. In Canada, the number is approximately 1,500 children a year that are diagnosed. In the United States, childhood cancer is the number one disease killer of children, in Canada, the second largest cause of death by disease for children under the age of fifteen. Despite how those numbers appear given the respective populations, childhood cancer is not some distant concept that knocks on the doors of the unlucky. Rather, it is a biological disease that has many different forms that is all too real, and all too devastating. The following story about Collin’s diagnosis, treatment and life is one of fear, caution and hope. Collin’s family heard the horrible knock on their door despite never expecting it and is fighting for survival every day. My family heard that knock too, but unfortunately for my wife and I, there was not to be any happily ever after.
My son Collin was born on December 18, 2008, and was a healthy, happy baby. Soon after he turned a year old, he began having different symptoms that worried us, but it took a few months to put these clues together and realize there was a problem. He had started walking before he was a year old, but had terrible balance and was constantly falling. He wasn’t really talking. He started eating less and losing weight. There were times when he got sick to his stomach for no apparent reason. Sometimes he screamed inconsolably. At his 15-month check up, our pediatrician had some concerns about his balance and his eyes, and sent us to an eye doctor. At first he didn’t find anything wrong, but wanted to watch Collin closely. Three weeks later, the eye doctor saw pressure on Collin’s optic nerve that hadn’t been there before, and he ordered an MRI.
The next day, Collin kept throwing up even though he couldn’t eat anything. He was pale, lethargic, and unable to even cry. We wanted to take him to the emergency room, but the doctor encouraged us to hang on a few more hours until the MRI. I called my parents, who live out of state, and told them they had to get here because I knew Collin was going to die. Finally, it was time to take him for the scan. We did our best to comfort our baby and hold ourselves together as we watched him be put to sleep. We had no idea our lives were about to be changed forever.
The MRI showed a large tumor in Collin’s cerebellum, which was affecting his balance, his speech, and his swallowing. It was preventing the cerebral spinal fluid from circulating properly, which lead to hydrocephalus, or increased pressure in his head. This was causing terrible headaches and vomiting. The MRI also showed that there was an area at the bottom of Collin’s spine that the cancer had spread to. Collin was immediately admitted to the pediatric intensive care unit at Penn State Hershey Children’s Hospital, and the next day, April 23, 2010, he had brain surgery to remove the tumor. Four days later the biopsy results came back, and we learned that Collin had Stage 4 Medulloblastoma. He was just 16 months old.
After the brain surgery, Collin spent most of the next seven months in the hospital. The surgery left him extremely weak on his right side from his face all the way to his foot; the first goal his physical therapist had was for him just to be able to turn his head to the right. At first he didn’t really interact with us, or try to talk. Any efforts to comfort him only seemed to upset him more. From May through November of 2010, Collin had six rounds of chemo, an autologous stem cell rescue, and survived life threatening complications from his treatment. During those seven months, he had occupational, physical, and speech therapy. Gradually, his personality started to return. Slowly but surely, he relearned to swallow, talk, sit, and stand. And then, after a year of hard work and perseverance, Collin learned to walk again.
After coming home in November of 2010, Collin began eight months of maintenance chemo in January of 2011, but less than two months after finishing the chemo, he relapsed for the first time in October, 2011. He had more chemo in the hospital, gamma knife radiation to the new tumors in his brain, and more maintenance chemo at home. He took part in a phase 2 drug trial in NYC at Memorial Sloan Kettering Cancer Center in April of 2012, but right after completing the drug trial in May, we learned he had relapsed a second time. Radiation of the whole brain and spine is the best chance at “curing” Medulloblastoma, but because of the negative effects it can have on a young, developing brain, doctors don’t like to do radiation on very young children. By the time of his second relapse, Collin was three and a half, and we knew we couldn’t wait any longer. He had even more chemo, and in 2012, we spent the second half of the summer in Houston, where he had proton radiation to his entire brain and spine at MD Anderson Proton Center. Collin finished another year of maintenance chemo in November of 2013. He has MRIs every four months to check for any signs of cancer. Thankfully, his MRIs have been clear since having the radiation.
During all of his treatment over the last four and a half years, Collin has continued to receive occupational, physical, and speech therapy, and he continues to make great progress. He’s learning to run, and jump. His balance and coordination continue to improve. He has also been having acupuncture treatments, which have helped his right side facial paralysis. His right eyelid blinks more, and closes nearly all the way now when he sleeps. I also see tiny amounts of muscle movement in his right cheek. He is monitored closely by an endocrinologist, due to the permanent long term effects of radiation on his growth and hormones. He is currently being treated by a gastroenterologist due to gastritis and an esophageal ulcer, which are likely side effects from radiation. He has a neuropsychology evaluation every year to monitor the toll radiation has taken on his brain, specifically in the areas of reasoning, concentration, visual-spacial, problem solving, counting, language skills, and memory. He still has challenges ahead of him, and almost certainly will for the rest of his life. But he just takes life one day at a time. He has a great sense of humor, and is full of joy. He doesn’t give up, even when things are difficult. He is more courageous than I could ever hope to be.