Today marks the first day of Childhood Cancer Awareness Month accompanied by the donning of gold in many parts of the United States and the world. September is a gold rush of sorts, yet each year I find myself questioning the value of awareness if it does not translate into ACTION.
Awareness is defined as “having knowledge or consciousness of something”. I think is is fair to say that there is not one individual who hasn’t been affected by cancer, childhood or otherwise, whether personally or in the life of their family or friends. I also believe that most, if not all, are aware that children get cancer too.
ACTION, however, involves DOING something about it, childhood cancer and survivorship, in this case. It’s about raising the cause, the needs, then setting a course to bring about change. Research dollars are the greatest need, but heart-soul encouragement and tangibles like play dates, help with the laundry, a meal, notes-handwritten have a role to play in the health and wellbeing of those living the reality.
MHYH’s focus will be on those needs specific to survivors of childhood cancer as our mission is to educate and equip, inform and inspire survivors to arm themselves with knowledge of their cancer history in order to be their strongest advocate as they transition into young adulthood.
Let’s begin with some Awareness Facts.
- In 2014 roughly 16,000 of our children were diagnosed with some form of childhood cancer
- Childhood Cancer is considered rare (at least, until your child is diagnosed), yet it is the leading cause of death in children beyond infancy
- A designation of rare has catastrophic implications for funding
- The average age at diagnosis of a child is 6 years of age compared to 66 years of age among adults
- There are 16 major forms of childhood cancer and more than 100 subtypes
- Diffuse Intrinsic Pontine Gliomas (DIPG), a malignant brain tumor, remain uniformly fatal with death occurring an average of 15 months from diagnosis
- The National Cancer Institute allocated a mere 4% of their $5,000,000,000 to childhood cancer to address both cure and survivorship
- Children are not miniature adults; they are growing children with rapidly dividing cells throughout their bodies increasing the likelihood of achieving cure and reclaiming their lifetime, but also making them more susceptible to late effects of cancer treatment that can occur months, years, even decades after their last treatment
- Many though not all childhood will survive their cancer and carry a unique set of risk factors based on the treatment they received that MUST be screened for across their lifetimes
- The emergence of the adult survivor of childhood cancer populations is presenting us with a need to balance research priorities between the pursuit of cure for all and the prevention, early detection of late effects among survivors
- Greater than 95% of adult survivors of childhood cancer have at least one chronic condition directly related to the combination chemotherapy and/or radiation used to cure their cancers
You can find more “Awareness Facts” related to diagnosis and cure available by clicking on the following sites:
Survivorship Resources Available by clicking on the following sites:
Day 1 of 30 Days of ACTION:
Drop a note-handwritten to a family with a child actively receiving treatment, one who has survived their cancer, or to the family of a child/adolescent who has died from some form of childhood cancer in the mail today or tomorrow.
If you are considering sending a note to parents whose child died from cancer, remember that the very mention of their son or daughter’s name is a blessing in and of itself.
Please feel free to share with us what you are doing THIS month, every month on behalf of children with cancer; your ideas and pictures may ignite the imagination of others or better yet call them to ACTION.
For more of my heart-thoughts on notes-handwritten, I invite you to stop by my blog over at Connect4Cancer.