September is Childhood Cancer Awareness month, a time set aside to remember and support the children and families affected by the disease, to raise awareness about the risks and symptoms, and to support life-saving research through fund-raising.
Only one percent of all new cancer cases diagnosed in the United States occurs in children, but it is the second-leading cause of death among children ages 5 to 1 4.
Research is slowly improving the odds in childhood cancer survival, but the numbers remain troubling.
This month alone, nearly 15,000 children under the age of 21 will be diagnosed with some form of the disease. In the U.S. one in every 285 children will be diagnosed with cancer, and one out of every five will not survive. The majority of children who do survive will suffer long-term side effects later in life caused by the potent chemicals and radiation that was used to cure them.
Steve and Linda Zinser of Peebles are all too familiar with the ravages of childhood cancer. Steve is the pastor at the Peebles United Methodist Church and Linda is a teacher at Peebles High School. Three years ago their three year old grandson, Eli, was diagnosed with Neuroblastoma, a rare form of childhood cancer. In the years since his diagnosis the Zinsers and their family have been witness to the horrific suffering cancer can inflict upon a child. The following blog written by Eli’s father is a poignant illustration of a family’s struggle to cope with the fear and anguish that is the constant companion of childhood cancer.
Why do we #gogold in September and why do we support CancerFree Kids and The Dragonfly Foundation – The Atomic Atoms
In 2013 my son Elijah, then 3, was diagnosed with Stage 4 High Risk Neuroblastoma. It’s really hard to explain what that feels like. You start with complete incomprehension. You can at least pronounce the word. You rapidly begin learning all sorts of statistics and information you’d never want to know. Heaven help you if you check google image relative to the treatments involved. No one wants to see so many children in pain like that…
As treatment progresses you become your own google image database of personalized memories of pain and sorrow. You’ve accidentally memorized the statistics though you know it’s best to never think about them. “One day at a time” becomes a meditative mantra. Statistics don’t matter to the individual; your tiny individual. Your life is irreparably changed. You will spend months and years ping-ponging through the stages of grief… if you’re lucky.
At best, your child will be “cured” (A bit of a misnomer that doctors avoid using, yet statisticians seem perfectly okay with, more correctly read as No Evidence of Disease (NED) for 5 or more years) and the cancer will never ever-ever relapse. At best, your child will receive treatments that could kill him, could cause a second cancer, could permanently damage his hearing, permanently damage his brain, permanently alter his behavior, mental development, and personality, or permanently damage his reproductive options later in life.
At worst… your child dies during treatment. Or, at worst, your child survives treatment, but it isn’t successful, or your child develops a second cancer, or the original “cured” disease relapses for which maybe, as is the case with Eli’s High Risk Neuroblastoma, there is no curative treatment to even consider.
Eli has wound up somewhere in the middle for now. His disease may, possibly, hopefully, be “controlled”. He recently had his first day of kindergarten. We’re still living scan to scan and have never got to hear the magic word “remission”, but it’s stable. We’ve seen him through 18 months of treatment. Inpatient for 197 days (six rounds of chemo, MIBG radiation, tumor resection, stem cell transplant, 17 days of external radiation, six rounds of antibody therapy). After all that, Eli’s scans are still not clear.
But he’s still here. We’re on the “lucky” side right now. We’re lucky that we get to be terrified of what they’ll find every 3 months when we go back for more scans (scanxiety they call it). We’re lucky that we at least are some sort of “stable” and not in any treatments right now. We’re lucky that his hearing is permanently damaged. We’re lucky that his learning and development may be damaged in some permanent way. We’re lucky to experience months and months of pain like we’d never even imagined. We’re lucky to have spent so much time feeling so helpless. We’re lucky because Eli’s still here.
All of this is where a group like The Dragonfly Foundation (http://dragonfly.org/) comes in. Their mission is to ease the pain and bring joy to families going through these joyless times of treatment and “scanxiety”, cancer and BMT.
Burned into my memory are days when Eli was an inpatient and didn’t want to eat or get out of bed and the only thing that perked him up was a gift-wrapped present from The Dragonflies. On one occasion in particular (that makes me tear up even as I sit here typing) they sent him a wind-up trick motorcycle toy. In my memory we played for days on the floor with that bike though I’m sure it was only a handful of minutes. But they were the minutes that mattered that day. He got out of bed that day. He smiled that day.
There is so much more they’ve done for my family; the laptop I borrowed to use for work during Eli’s radiation treatment, care items they sent for use while we were inpatient, meal cards, the tickets to the circus during treatment downtime for our whole family to sit in an isolated suite (hugely important when your child is immunocompromised) and feel normal for just a little while…
But this is just one story. That’s ours and Eli’s. And that’s just one type of pediatric cancer.
Here are just a few details from cancer.gov:
-Cancer is the leading cause of death by disease past infancy among children in the United States
-the incidence of childhood cancer has been rising in recent decades
-The causes of most childhood cancers are not known
-Survivors of childhood cancer need follow-up care and enhanced medical surveillance for the rest of their lives because of the risk of complications that can occur many years after they complete treatment for their cancer-long-term follow-up analysis of a cohort of survivors of childhood cancer treated between 1970 and 1986 has shown that cancer survivors remain at risk of complications and premature death as they age, with more than half of survivors having experienced a severe or disabling complication or even death by the time they reach age 50 years. It is not known whether children treated in more recent periods will experience similar risks of “late complications”.
-In 2014, it was estimated that nearly 16,000 new cases of cancer would be diagnosed among children 19 years of age and younger in the United States and that about 2,000 would die from the disease-childhood cancers generally differ in type and biological behavior from cancers diagnosed in adults
-only a small number of targeted therapies are currently available for childhood cancers
Our children deserve better. Most of the dollars that are donated to the American Cancer Society go to research and trials for adult cancers. For each dollar, only a penny goes to pediatric cancer. As for your tax dollars, NCI only gives about 4% to research for pediatric cancers. To often treatments for children are based on adult research with the notion that kids are just little adults irrespective of the efficacy of this approach. It’s a bure
aucratic money and numbers games. But you can’t simply halve the recipe!
That’s where a group like CancerFree Kids (http://www.cancerfreekids.org) comes in. Their mission is to fund pediatric cancer research. Period. The research they fund will help find the causes of diseases like Eli’s Neuroblastoma, will help find safer treatments that are less harmful to patients, will increase survival rates, and someday will find true blue cures.
CancerFree kids hosts a variety of great events all around the area that are worth looking into and attending; Events for families and some just for the grown folks. Our favorite is The Butterfly Walk because it’s right around Eli’s birthday. This past year we even won for Best Team Spirit!
However you do it, and I’m asking all my Cincinnati musician friends and everybody else who sees this to take part, and whatever organization you personally find to donate to or raise awareness with – there are so many reasons to Go Gold this September. Raise awareness. Create the buzz. Spread the joy. Get the funding. Impact and save the lives of so many strong, amazing, resilient, and wonderful little humans.
#gogold #cincinnatigogold #musicgogold #cancerfreekids #diditfordragonfly