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April 25, 2014
When Kaeleigh Barney was diagnosed with Ewing’s Sarcoma - a rare form of bone cancer - at the age of thirteen, beating the disease that was attacking her was her only concern. Two years spent in hospital while receiving intense radiation and chemotherapy regimens meant that every aspect of her life was put on hold while she battled with every ounce of energy she had. Little did Kaeleigh realize that the effects of the life-saving treatments she received would be felt for years to come – possibly for the rest of her life.
That’s where the Oncology After-Care Program at Children’s Hospital, London Health Sciences Centre (LHSC) - which is celebrating its tenth anniversary this month - comes in. Launched in collaboration with the Pediatric Oncology Group of Ontario (POGO) in 2004, the program follows pediatric oncology patients from the time their condition is considered stabilized/in remission throughout the remainder of their lifetime.
Patients attend the multi-disciplinary clinic once a year for follow-up, with visits focusing on issues such as promotion of healthy lifestyle, screening for secondary cancers, as well as early detection of long-term side effects from treatments such as hormone changes, cardiac damage, and bone loss. They also receive psychosocial support as needed. Younger survivors may participate in the School Support program or see the Neuropsychologist while adolescents and young adults may become involved with a program called SAVTI (Successful Academic and Vocational Transition Initiative), which assists survivors who, as a result of their disease and treatment, may have developed learning difficulties or may have missed significant time at school, interfering with the achievement of their educational and career goals.
Kaeleigh was referred to the program several years ago, and has received ongoing monitoring and support for radiation related side effects including colitis and osteopenia which causes her bone density to be lower than normal.
“It is comforting to know that I’m being followed by a team of professionals who treated me as a child, and who know exactly what long term monitoring is required”, said Kaeleigh. “If I have concerns between appointments, they always make time to see me to make sure I’m alright.”
Dr. Beth Cairney – LHSC pediatric oncologist and program lead for the After-Care Program – knows that this reassurance is exactly what Kaeleigh and other patients need to hear. “As frightening as a cancer diagnosis is, it is also daunting to think that once your treatments are finished and you’ve been declared free of the disease, you may develop other problems, even potentially life threatening, years later as a consequence of that very treatment that saved your life,” said Dr. Cairney. “Potential late complications of therapy given to a growing child is an ever-evolving field, both as survivors continue to age, and as up front therapy changes”.
The Aftercare clinic, which runs every other Thursday, has had 2000 visits from patients since it began. Patients moving away from the London region to elsewhere in Ontario are referred to similar POGO programs to ensure continuity of care. “However, we know that we are still not seeing every eligible patient, that we have lost survivors to follow up over time”, said Dr.Cairney. “Anyone, child or adult, who was diagnosed with cancer before the age of 18 and treated with either radiation therapy or chemotherapy or both, is eligible to be followed in the Pediatric Oncology Aftercare Clinic. Patients can be referred by their family doctor, but can also refer themselves directly.”
For Kaeleigh, the care received in the clinic has allowed her to move forward with her life, and realize her dream of being a pediatric oncology nurse at Children’s Hospital. “I know I survived childhood cancer for a reason, and that is to help other kids who are fighting the disease and give back to the team that has given me so much. I’m happy to be working alongside some of the nurses and doctors who cared for me but most of all, I’m glad that I can help comfort other children who are facing the same fears I faced 12 years ago, and let them know that they are in good hands – now and long into the future.”
A celebration of the Oncology After-Care Program’s 10th anniversary was held for patients and staff recently. We were happy to have representatives from our program partner POGO in attendance for the event. See more photos on LHSC's Facebook page.