Posted by Erin Schwartz on February 15, 2011
February 15th is International Childhood Cancer Day The Max Foundation is acutely aware of the need to bolster support to families facing childhood cancer, especially in low-to-middle-income-countries (LMIC). After all, childhood leukemia is at the heart of how the organization started, when Max’s family originally from Argentina learned so much after looking for treatment for him at age 14.
Pat, our Executive Director was Max’s caregiver and she reflects here on what it was like for him to experience cancer as a teenager and what it means for teens today:
“Max was 14 when he was diagnosed with CML. A lingering cough and a doctor’s check up revealed an enlarged spleen; from there, blood tests, more tests, shock. It was August of 1989.
Max lived with CML for almost 3 years, from ages 14 to 17. There were no patient support groups back then. In fact, there was no internet; no contact with other people with CML, no disease information other than the one provided by Dr Talpaz, his doctor. Max did not want to think about his disease if he didn’t need to. He didn’t hide it, but for the most part, while he was with his friends or in school, he enjoyed not thinking about it.
Many teenagers just want to live their lives, and not really dwell on the reality of the disease. Nowadays they seek information online when they want it, in their own terms, and they come to us when they need us. As adults, our job is to be there and alert to catch those moments in which a little window opens, and we must be prepared with our answers.”
While the world has come a long way since we lost Max, there are still many barriers for children and families living with cancer and so today, we introduce a great new resource created for families facing CML, the Junior CML Advocates website. This website is the part of the CML Advocates Network where they will publish news, e.g. when new publications were published on pediatric CML, or when the patient community takes action on CML in children and adolescents. Furthermore, visitors can learn what CML is in children and adolescents, and see the list of publications on pediatric CML. It is also possible to find a list of organizations supporting children with CML and their caregivers. Finally, visitors to the website can subscribe to the Junior CML Advocates email newsletters for email updates.
Statistics on pediatric cancer:
According to information put together by the International Confederation of Childhood Cancer Parent Organizations (ICCCPO), Union for International Cancer Control (UICC) and World Child Cancer:
“Although cancer in children is a small fraction of the global cancer burden most of them can be cured if prompt and essential treatment is available, approximately 80% of the deaths will occur in resource-constrained settings as appropriate treatment is not available or affordable.
In the developed world children on average have a 75% chance of surviving cancer, however the situation in low-and-middle-income countries, which accounts for 80% of the global incident of childhood cancer, is very different, with only 20% of those that do receive treatment surviving as appropriate treatment is not available or affordable.”