Books often indicate that siblings of cancer patients frequently feel neglected. This however, was not the case with me. I have never once resented the cancer or my brother. Instead, I feel that I have learned from it. When my brother was diagnosed, with a brain tumor in 1991, I started checking out all the books on cancer I could find in my school library. There weren’t many but, the explanation that I remember best is “a good cell gone wild.” I chose to explain cancer to my third grade class when a classmate asked what cancer was because Glenn Brenner had just been diagnosed with a brain tumor. The explanation I had found in books seemed to satisfy me and I soon stopped reading about it and began focusing on what was really happening. I remember late Monday nights after Bryan had spent the day at the hospital, getting vincristine and carboplatin, trying to make him take Phenergan and Ativan. We used to try all kinds of tactics! A few times I had to even pretend to take it before he would. Sometimes we had to hold him down and make him. Then he’d spend the night throwing up in “barf buckets” with my mom or dad taking care of him, depending on the night. I was thankful I got to sleep.
Every once in a while I got to go with him to the hospital on a Monday. The waiting room was jam-packed. You might expect a depressing atmosphere but, the optimism the younger children had was amazing. I remember two little boys in particular, both of which have succumbed to their disease, playing in the playhouse. One had blue marks, on his head, from radiation. They were too young to know what was going on but somehow had a grasp on the situation. It didn’t seem to phase them much, though the parents were often paranoid with all right to be so. At the camps, I have heard many of the older children complain that their parents were often overprotective. I can understand why they might feel that way but, you can’t take the kid out of a kid. Nothing would hold Bryan back, not IVs, fevers, or low blood counts.
Bryan was a wild thing. For years he was not allowed to use scissors because my mom was afraid that if he learned to use them he might cut his broviac. She carried blue clamps around with her everywhere.
Bryan was very pale much of the time. Surprisingly, his hair only thinned. Most children on chemotherapy lose all their hair. His counts often dropped so low that he had to have a transfusion. Most of the time family members would donate for him. My aunt, Susie, and Bryan considered themselves “blood brothers.” During this time, Bryan bruised very easily and we had to be careful with him. He would become very sad because he was not allowed to go to Discovery Zone. One time in frustration, Bryan threw a videotape at me and narrowly missed my head, denting the wall, my mom told him he could not go to Discovery Zone. Bryan quickly told her “You can’t punish me that way. I can’t go anyway, I’ll bruise and my counts are too low.”
Bryan couldn’t go to preschool for nearly six months at the beginning of treatment. Amanda, my younger sister, and I held preschool for Bryan nearly every day. We taught him to write his alphabet, colors, shapes and most other preschool type activities. When Bryan finally went to preschool, it was a school for the visually impaired. He was thrilled at the opportunity to attend school with kids his age. Most of his friends at the time were my friends and people from the hospital.
Bryan had lots of fun at Camp Friendship every summer. This gave us a break too! The camp staff often reported his wild antics saying “He bounces off the walls!” I went to the overnight session once Bryan became of age. The camp has changed my life. I have met so many people who I look up to and admire. I go back each summer to this day and volunteer at the day camp for the younger children. Last year I was touched when I went back and visited the camp during an overnight session. My four-year-old buddy had come with his mom to visit too that day. When he saw me he ran up, hugged me, and said “I knew you’d be here!” His mom later told me that she had spent the entire car ride trying to convince him I wouldn’t be there so that he wouldn’t be disappointed.
My mom gained pleasure helping other cancer organizations. When she heard that the Irvin’s, another brain tumor family, and Dr. Packer had started The Childhood Brain Tumor Foundation, she went to one of the first meetings. Soon she and my dad were on the board. Amanda, Bryan, myself, and many of our friends enjoy helping at fund-raising events such as the biathlon, art auction, and with newsletter production. Many dedicated board members, and supporters help to make the foundation successful at raising funds to support seed grants. The medical/scientific advisory does a fantastic job providing their knowledge and expertise, but speaking, writing articles, and most importantly putting the grants received through a rigorous review process to ensure CBTF funds only the best quality research.
Overall, I would say I’ve gained a lot from my experiences as a result of Bryan. I had the privilege of going to Disney World because of the Make A Wish Foundation. Bryan was very sad when we had to leave. I have learned that an optimistic attitude can be an asset in unfavorable situations and I have seen courage in the smallest of children.
As the years have passed since Bryan’s journey through treatment into adulthood, it is a joy to say he continues to be a survivor and is considered stable.
Written by Ashley Young, sister of Bryan.
Reviewed 2019