From survivors: Cancer journey doesn’t end at remission

Today, more and more children with cancer are expected to survive. However, research from The Hospital for Sick Children (SickKids) shows that many childhood cancer survivors will develop some kind of late effects of their cancer or its treatment – including increased risk of heart problems, mental health concerns, and new cancers – at some point in their lives.

SickKids’ AfterCare Program, part of the Garron Family Cancer Centre, provides survivors of childhood cancer with a variety of services, including surveillance for specific late effects, health promotion, school and psychosocial supports.

“Survivorship is an integral part of paediatric oncology. Improved cancer therapies and supportive care have resulted in a higher likelihood of children with cancer surviving longer, often into adulthood. However, there can be significant long-term consequences of chemotherapy, radiation and other cancer treatments. It’s important to provide life-long individualized care for treatment effects that can range from mild to serious issues,” says Dr. Paul Nathan, Director of the AfterCare Program and Oncologist in the Division of Haematology/Oncology SickKids.

For this year’s Childhood Cancer Awareness Month, two families of children in remission from their cancer are raising awareness about the long-term impacts of cancer and its treatment that affect them every day, and what they would like all families, parents, kids, youth, and adults to know.  

Q1: When did you first find out that your child has cancer?

Laura: I remember the day so clearly. Meera was diagnosed at 22 months in 2011 with an aggressive form of cancer called alveolar rhabdomyosarcoma right on her face. After 28 rounds of radiation and 40 weeks of chemotherapy, we celebrated, thinking that the cancer was gone. We were wrong – Meera relapsed and this time around, we made a difficult yet necessary decision to remove 90 per cent of her nose and upper jaw to save her life. She’s been clear of cancer since 2013 but now we’re facing another difficult journey – a series of reconstructive surgeries.

Kim: Noah was diagnosed on his first birthday over a decade ago with a cancer called hepatoblastoma, which is a rare cancer that starts in the liver. He’s been in remission for quite some time now, and is an outgoing, smart kid who loves to read. But we’re still dealing with effects from his treatment including impacts to his hearing and teeth, physical delays, emotional issues, and risk of heart problems.

Q2:  What are some of the ongoing challenges for your child as result of cancer therapy?

Kim: Noah’s cancer treatment, especially at such a young age, has left me with many unknowns including “Will he have heart issues? Will he be deaf by the time he’s 40?”.

Laura: First, Meera is a survivor! She’s thriving and surviving, and is the most wonderful little ‘mom’ to her four younger siblings. But as she goes back to school and gets older, I can’t help but wonder how other kids will interact with and perceive her. I hope that they will be able to look beyond her facial difference and see her for the caring, wonderful, and spunky kid that she is.

Q3: What is one thing about childhood cancer that you want people to know?

Kim: When Noah was cleared of his cancer, the unknown scared us the most. For the first time, we were on our own to deal with the after effects of his cancer and treatment. It’s important to recognize that even though the cancer itself is no longer a part of a survivor’s life, lingering issues – such as heart and hearing in our case – will always be.

Laura: Even though our chemotherapy days are over it doesn’t mean that our journey is over. Cancer will always be a part of our lives in some way or another. Most people may not know that chemotherapy can have an array of lasting effects – it’s important to remain curious and have patience for kids like Meera and other childhood cancer survivors. The more you ask and learn, the more you’ll understand!

The AfterCare Program at SickKids is one of a network of five paediatric programs across Ontario that are run under the support of the Pediatric Oncology Group of Ontario (POGO). The clinic is staffed by two oncologists, a nurse practitioner, nurse, health psychologist, neuropsychologist, and a dietitian. In addition to a weekly clinic for survivors, the program holds monthly specialized clinics for survivors of brain tumors and stem cell transplant.

The Garron Family Cancer Centre (GFCC) at SickKids is an innovative and collaborative initiative that brings together scientists, clinicians and educators from across the hospital to advance treatment of paediatric cancer. Approaching care in an integrated way offers the most promise to improving the overall health of children with cancer.