After the Cure
May 2nd, 2017 by Sarah Turner Davis
For kids who survive, fighting cancer is just part of the battle.
Cancer treatments have made thrilling strides in recent decades: for childhood cancers alone, the survival rate has increased from 10% to nearly 90% in the last 40 years. But there’s another part of the fight that many people don’t understand: growing up after cancer. Nearly 60% of children who survive cancer face devastating late effects, often as a result of the very treatments that saved their lives.
Let’s talk about Hallie. First, Hallie suffered a stroke immediately after the removal of her first tumor that caused extensive damage to the right side of her brain. As a result, she remains paralyzed on the left side of her body, and cannot stand or walk. She remains in a wheelchair. Hallie also experience hearing loss due to two of the chemotherapy agents used. Her family was told the loss could possibly continue even after chemo was complete. Today her hearing is still partially impaired. She is unable to hear specific sounds, including “t” and “s.” She also started chemotherapy just before her second birthday, during some of the most critical years for development. As a result, she lost a year of growing and developing. At five years old, they tested her development. Her bones were the size of a three year old; her cognitive ability was even less. During her relapse, she also developed epilepsy, which was worsened during her 32 rounds of radiation. Children undergoing radiation are sedated for each session; sedation medication is known to increase seizures. She remains in physical, speech, and vision therapy four years after treatment. Just recently, she underwent a bilateral osteotomy for hip dysplasia that is a result of her stunted bone development. Recovery from this is painful, but the surgery is supposed to spare her from chronic pain and arthritis, and hopefully help her stand better after recovery.
Brennan was much older than Hallie when diagnosed and fought a different battle. For him, one of the most notable side effects has been extreme fatigue. This is not normal, growing kid “tired”; he has been in remission for six years, but has only recently been able to carry his own golf bag for 18 holes. In the 7th grade, he missed 78 days of school. In 8th, it was down to 36. Last semester, his first of 9th grade, he missed 0 days! But after contracting a common cold virus in February, he has been in and out of school for the last five weeks. He’s made great strides, but even a cold affects him much more than his classmates.
Chemotherapy, radiation, and bone marrow transplants during formative years can certainly affect growth and development, and cancer survivors are often smaller in stature than their peers. Pulmonary function can also be permanently affected, adding to overall fatigue. And even children who weren’t treated for brain tumors can struggle with cognitive problems: radiation and complications such as viruses contracted during treatment can cause issues with executive functions. Executive functions include planning, staying on task, organization, and short-term memory. So when a cancer survivor cannot remember the new desk she was assigned in class yesterday, it’s not simple forgetfulness. For individuals with executive function problems, short-term memories take more time and more repetition before they are transferred to long-term memory. Add those executive function problems to the fact that these children have been taught only in hospital rooms for months or even several years, and traditional school can be overwhelming for a survivor. It takes years of hard work for the brain to create new neural pathways to overcome these problems.
With all of these side effects setting them apart from their peers, it’s no wonder that one in three children suffering cancer are bullied when they return to school. The average person—one who doesn’t have an intimate knowledge of pediatric cancer treatments— might think that once the cancer is gone, the problems are gone too. Adults think this too, so we can hardly blame children for believing it. So when a cancer survivor returns to class and complains of being tired, her classmates may label her as “lazy”, and resent her for getting “special treatment” by more understanding teachers and school administrators. If a survivor can’t remember where his newly assigned desk is, his classmates might tease him for being “stupid.” And what if her hair hasn’t grown back yet, or his growth is stunted? Classmates might even interpret a survivor’s shyness—probably caused by exhaustion, confusion, and being in the spotlight for years— as an attitude problem. What survivors need is patience and support, not ridicule. If your child has a classmate who has undergone cancer treatment, please consider having a family conversation about what it truly means to survive cancer. It is never okay to ridicule a classmate for being different, but understanding why those differences exist can help children be more supportive peers.
As for the health-related side effects, cancer survivors are monitored for the rest of their lives; doctors watch for changes in organ and cognitive function as well as secondary cancers. That’s right—certain treatments are known to cause entirely different cancers in the very patients they are meant to save. One of the most common secondary cancers is Acute Myeloid Leukemia, Brennan’s primary cancer, and the poorest prognosis leukemia. For some, treatment proves too much for a child, and though they beat the cancer, the child still dies from complications such as necrosis of the brain or organ failure. All of this is why Press On’s mission is what it is: we must find less toxic, more targeted treatments for these children because they are still growing and developing. Cancer survivors should be left healthy enough to reach the five year cure mark and beyond. They deserve a chance not only to survive, but also to thrive. Supporting doctors and researchers is imperative in this fight, and that is why Press On exists.