The Road to Understanding and Acceptance of the Late Effects of Pediatric Brain Tumors and Treatment

We had little warning or time to adjust to our daughter’s diagnosis. A call from her third grade teacher reporting that Sarah seemed to be having vision problems rapidly led to eye exams, an MRI, and the discovery of a Germinoma brain tumor in the suprastellar region of Sarah’s brain. We were terrified but began treatment feeling optimistic about the outlook for Sarah’s recovery. Luckily, Sarah’s treatment was relatively non–invasive and quick, chemotherapy and radiation, five months start to finish. We were thrilled to have Sarah’s treatment behind us.

As any parent of a child with a life–threatening illness knows, family life is seriously disrupted by the countless doctor, lab, and hospital visits, the worry, and the financial strain that are suddenly added to the demands of everyday life. We did our best to balance our focus on both of our children as Sarah is a twin and we didn’t want her brother Will to suffer as a result of his sister’s illness. It wasn’t easy but we found a way to schedule Will’s usual play dates, baseball practice, and family time. We were all happy and relieved when Sarah’s treatment was completed, yet we would later learn that we had been incredibly naïve in two ways; we thought that our brain tumor journey was over after Sarah’s treatment was completed and we thought that we’d brought Will through the process without effect. We had a lot to learn.

At the time of diagnosis we knew that Sarah’s memory and ability to express emotion had already been impacted by the tumor but we didn’t yet know what that would mean to her quality of life. We were virtually unaware however that at age nine the chemotherapy and radiation treatments that Sarah received would result in profound late effects. Following treatment Sarah successfully completed 3^rd grade and even received excellent STAR test scores (California state standardized tests). In 4^th grade however, Sarah’s performance began to diverge from that of her peers and she found herself struggling in school and unable to make friends. We began looking for ways to help our daughter.

What followed was a five year long journey through testing, evaluations, individualized education plans (IEPs), and therapies, which, in the end, left our family needing to accept the fact that although Sarah remains intelligent and artistically talented, she suffers from a constellation of late effects that will always affect her ability to function in the world. As a result of Sarah’s tumor and treatment she struggles with Auditory Processing Disorder, word finding problems, poor executive function, inability to recognize how she feels, significant difficulty making decisions, inability to read social cues, poor memory, slow processing, an emotional age of about nine, and lots of anxiety. She is also panhypopituitary, meaning that she has no remaining pituitary function and must take replacement medications by pill and injection, has hypothalamic obesity (HO), which is primarily controlled by more medication, and Raynaud’s Disease. The HO is an ongoing challenge because if Sarah does gain weight she can’t lose it again and exercise is not an easy solution because, like many pediatric brain tumor survivors, Sarah is easily fatigued. Finally, although Sarah’s vision improved after treatment her vision loss is significant enough to prevent her from driving. We pieced together this understanding of Sarah’s challenges and disabilities slowly so it wasn’t until the end of our children’s middle school years that we finally accepted the magnitude of the damage caused by the tumor and treatment. Thereafter we changed our focus from what Sarah might achieve in life to how to support her in the activities at which she still excels and how to keep her active, interested in life, and feeling good about herself.

It would have been a huge gift if we had been provided with information about the possible late effects that can result from treating the brain of a 9–year–old...