In honor of 10 years cancer-free, a high school student is fundraising to raise awareness about the long-term risks of cancer treatment.
While giving my son Zachary a bath more than a decade ago, I noticed several large, strange-shaped black-and-blue marks on his 3-year-old belly, back, and legs. Something felt deeply off. Had he been looking very pale recently? As a physician, I knew in my heart something was wrong, so I took him out of the bath and did a quick exam. When I examined his little belly, I could feel a large spleen beneath my fingertips. I was sick to my stomach, reeling — I knew this was not a good sign.
An urgent blood count performed by his pediatrician confirmed that Zachary’s blood counts were markedly abnormal. I was advised to immediately go pick him up from kindergarten and take him to the hospital. Hours later, we were sitting in front of a pediatric oncologist. The nightmare had just begun.
A few weeks after his fourth birthday, Zachary was diagnosed with leukemia. He went through years of treatment: endless injections, chemotherapy, and brain radiation. He endured countless side effects due to treatment. But throughout it all, Zachary kept a positive mindset, and he and I — a gastroenterologist and director of the Jay Monahan Center for Gastrointestinal Health, a center named after Katie’s late husband Jay, who passed from colon cancer — give thanks to the many nurses, doctors, researchers, and scientific breakthroughs that led to his cure. Today, he can proudly say that he’s a survivor.
Zachary’s hair has grown back. Not exactly to his former blond ringlet curls, but the tell-tale sign of cancer — a bald-headed child — is no longer evident. The puffiness and excessive weight gain from steroids has been replaced by a lean a 5’9” frame. The years of school lost due to an immunocompromised state from treatments have been replaced by sleepless nights of studying for high school exams. All seemingly wonderful things — blessings actually.
However, lurking in the background for any survivor of a childhood cancer (and in the mind of their parents) is the potential for long-term and late side effects of their treatment. The range and severity of potential lifelong issues vary based upon the treatment type and duration, age at time of treatment, gender, and overall health. Some children of survivors of childhood leukemia or lymphoma will either have no significant or very mild effects, while others may have serious complications. The long-term effects may include:
- Learning (cognitive effects): Difficulties can begin either during treatment or evident months or even years after treatment. Mathematics, problem solving, planning and organization, reading, and spelling can all be affected.
- Physical development, like issues with growth delays; heart, thyroid, or other organ damage; and obesity
- Fertility problems
- Development of secondary cancers
Blood cancers account for more than 40 percent of all childhood cancers, and although the survival statistics in the treatment of some leukemias are now amazing, with nearly 90% of children achieving remission and cure, too many children with other leukemias and lymphomas still succumb to their cancer, or are left with lifelong complications.
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What’s also frustrating is that, although there’s been significant progress in advancing new therapies for adults with cancer, only a handful of oncology drugs have been approved for first-use in children over the past four decades. Most children are treated with the same toxic combinations of chemotherapies developed decades ago. But children are not mini-adults, and the lifelong harms they may incur from their cancer treatment are vastly different, and can have significant impact on the length and quality of their lives.
Following Zachary’s cancer treatment, he has worked incredibly hard to overcome treatment side effects: He continues to take daily injections for issues related to growth delay, requires echocardiograms to watch his cardiac function, and is followed closely for secondary cancers. Zachary has also been left with many questions, such as which additional risks he might face over his lifetime.
It’s been 10 years since Zachary finished treatment. As an energetic 16-year-old school student at Fieldston High School in NYC, he’s proud to have the opportunity to give back and help others who face the same struggle he did.
That’s why he turned his attention to helping to find better treatment options for kids like him, through the Leukemia and Lymphoma Society’s Children’s Initiative, whose goal is to find more effective and safer treatment options. He has been nominated as a Student of the Year (SOY) by the Leukemia & Lymphoma Society (LLS) and along with me and his team, the Z Machine, he has been on a seven-week campaign which will end today Thursday March 3rd at 5pm. Zachary’s hope is that his campaign and the monies raised will shed more light on the reasons why certain children develop long-lasting side effects of treatment — and discover ways to mitigate their risks.
Zachary’s fundraising campaign ends at 5pm EST today, Thursday March 3rd. If you’re so inclined, donate right here, and learn more about the mission of the Leukemia and Lymphoma society.