Marcy Lewis
"Henrik was an average 10-year-old when a monster came out of his closet and tried to kill him. That monster's name was cancer. He began having trouble reading when he experienced black spots in his vision. Before long, they were accompanied by headaches. During a week-long wait to have his eyes examined to figure out what was going on, he rapidly declined with fatigue, confusion, and further deterioration of his vision. We thought he was experiencing migraines and when things got worse we thought it was the flu. His optometrist had us rush to a retinal specialist, who in turn had us rush to the local children's hospital. Within hours, an MRI showed that he had a tumor growing inside his brain. We celebrated after his second brain surgery when they told us the tumor was benign. Our celebration was short-lived. His tumor is not operable due to blood vessel involvement, and since it's benign cancer treatments like chemo and radiation won't work. We were left with a "wait and watch" approach. His symptoms before diagnosis were due to the tumor's growth blocking his spinal fluid flow, causing hydrocephalus and pressure to build inside his head. Because of that, they surgically re-routed his spinal fluid. That operation allowed for some tumor growth over time, so we hoped. His tumor remained stable for almost a year, but then we noticed one of his eyes drifting and he moved from honor's math to regular grade level. When his one-year MRI showed tumor growth, they deemed it necessary to go in and attempt to remove it, despite the risks to his life. We weren't sure he'd come through the surgery, or if he did we knew he might be blind or cognitively affected. Our hearts sank when we were told they had finished surgery many hours before he was due to be done; we thought they simply gave up and there was no more they could do. When we sat down with his surgeons, the first words one said were 'whatever god you've been praying to, it worked.' We were told that initial pathology, in the operating room, showed that his tumor was now malignant. My husband and I both wept tears of joy. We were told our son had cancer, how could we be joyful? Because we knew it meant his tumor was now TREATABLE. Henrik to date has had three major brain surgeries, chemotherapy, and radiation. He's been left blind in one eye with mild vision loss on the other. He's living with mild high-pitch hearing loss. Now 13, he's growing, and entering 8th grade is in honor's science, math, and English and about to take a foreign language. He's a typical teenager, so it would appear. What a lot of people don't see is his fear, his inner turmoil, his physical and emotional scars, and his survivor's guilt. He's made friends with other kids who are fighting, he's lost friends who fought so hard, and he fears others will also die. He knows some will die. He lives with the remaining benign tumor. He can't play contact sports. He has to be aware, always, that his surgical fix for hydrocephalus can fail without notice. He lives with vision loss. He lives with the fear that his remaining tumor will grow, or turn malignant again, or that the malignancy itself can return. He doesn't know what his future holds - what side effects he may have from cancer treatment as he grows up."