September is Childhood Cancer Awareness month.
Regular visitors to my site will know of my connection to childhood cancer. At the end of 2013 my 9-year-old daughter was diagnosed with Burkitts Non-Hodgkins Lymphoma. It was a rare type of cancer that had grown to a tumour the size of a golf ball on her tonsils, and it was in danger of blocking her airwaves. Within hours of seeing the doctor she was rushed into emergency surgery and the tumour was removed. That was the start of a rollercoaster that I can only describe as hell on earth and it changed our lives forever.
Over the following months we watched our beautiful girl battle through rounds of chemotherapy (Cyclophosphamide, Vincristine, Doxorubicin, Prednisone), anti-nausea (Ondansetron, Metoclopramide, Diphenhydramine, Metoclopramide), painkillers (Morphine, Fentanyl, Ketamine, Oxycodone, OxyContin), other medications (Clonidine, Buscopan, Ranitidine, Movicol, Lactulose, Larazapan, Cephalexin), CT scans, PET scans, Ultrasounds, more surgery, and all of the sickness it brings. It’s still so terrifying and raw that it feels like it was yesterday.
I’m so thankful to say that she was one of the lucky ones (if there is such a thing with childhood cancer) and the treatment resulted in remission. Today she is still in remission and going well, but the dark shadow of relapse or other health problems due the chemo are always at the front or our mind.
Due to the treatment that kids receive, more than 99% of childhood cancer survivors will have chronic health problems later in life, and 96% will have severe or life-threatening conditions. By the time they reach 50 years old, survivors of childhood cancer experience about five severe or life-threatening chronic health conditions on average.
Although the success rate in treatment of some childhood cancers is relatively high, it’s not high enough. There needs to be a lot more attention from Governments to fund research to find treatments that are better and safer, and thus reduce the severity of the late effects that are sure to come along. The first step is AWARENESS. Awareness will bring FUNDING, and funding will hopefully bring CURE.
After our daughter’s treatment I joined a local charity, Kids Cancer Support Group, here in Perth as a sitting committee member. Over the past few years we have grown and increased our presence to help other families caught up in the terrible journey of childhood cancer.
Childhood Cancer is a life-changing event that affects families in so many different ways. There’s nothing that families want more than to return to the time before diagnosis.
Earlier this year, KCSG partnered with the (Perth) North Metro TAFE media students. We wanted to show some real stories about the impact of childhood cancer on some our very own KCSG families. The media students interviewed and filmed 6 brave families who have trodden this path. They were all asked the same handful of questions and the results were collated by the media students into this touching, no apologies, and honest short movie called Childhood Cancer – Inside Out.
We pass on a huge thank you to all of the lecturers, students, and families involved. This video was first shown at our recent inaugural WA Childhood Cancer Conference.
Please take some time to WATCH it for yourself and SHARE it to help us raise Childhood Cancer Awareness this September and beyond.