September is Childhood Cancer Awareness month. This is the month that is set aside to honor children fighting or who have survived childhood cancer, and to remember the children who have lost their battle. We see the phrase “Go Gold” as a means to ensure that childhood cancer is in the spotlight for that month.
Statistics on Childhood Cancer
The statistics of childhood cancer research are just as overwhelming. The money charged for childhood cancer research and treatment, compared to adult cancer, is very low. If you have been part of the childhood cancer world for any length of time you have heard “More Than 4” used as a battle cry from parents, patients, survivors, and pediatric oncologists. This is a cry to demand more funding for pediatric cancer research and treatment.
More Than 4
“More Than 4” stems from the lack of federal spending on pediatric cancer research, which every year hovers just below four percent of the entire outlay by the National Cancer Institute (NCI). More staggering than the lack of research dollars is that most current standard treatments for childhood cancer were approved over 32 years ago; many before the mid-1980’s and on average most clinical trials for children begin 6 years after they are offered to adults. And these treatments are so toxic and that 2 out of every 3 pediatric cancer patients will experience at least one chronic health condition later in life.
Maria and John Drews of Katy, Texas are parents of two active boys, Jacob and Lucas. Maria admits they used to recognize Childhood Cancer Awareness Month by sending their check to St. Jude’s and like so many, not talking about this overwhelming and uncomfortable topic. But that all changed on May 1st, 2019.
“Our youngest son was diagnosed at the age of 10 months with AML m7, now known as Acute Megakaryoblastic Leukemia. Leukemia is rare in children and those diagnosed with leukemia normally have ALL. Lucas was not only diagnosed with a rare form of childhood leukemia, but has a very rare form of AML. We were told not only was his type of leukemia rare, but very aggressive. Lucas has gone through 6 rounds of inpatient chemo, 2 bone marrow transplants and he is currently enrolled in a clinical trial in St. Louis. Lucas even celebrated his first birthday as an inpatient cancer patient”
Maria has realized that very few people are aware of the lack of research and treatment for childhood cancer and how isolating this journey can be.
“I am hoping to raise awareness about how childhood cancer not only affects the child themselves, but everyone that loves them. Seeing your child hurting, sick, and missing out on normal kid activities are some of the hardest things to watch. Raising funds for research is critical to continue providing different treatment options. The trial Lucas is in can only continue as long as there are funds, and there are very little funds out there. There is a desperate need to support childhood cancer families.”
Ways to Support Childhood Cancer Research and Families
Learn about the Gold Ribbon
The gold ribbon was made the official color of childhood cancer awareness by a group of parents who wanted the symbol to stand for something precious. Gold is the color of a precious metal and children are the most precious thing to their parents. Unlike other awareness ribbons that symbolize one specific disease, the childhood cancer ribbon stands for dozens of cancer types that impact children.
Be Bold and Share
All month long, share childhood cancer facts, inspirational hero stories plus research news and updates. The stories are hard, because they highlight small children fighting big battles. There are countless blogs and articles detailing the stories of these heroic and brave kids, so be brave like them and share their stories.
Support the Siblings
The whole family is impacted by this disease, and siblings of children with cancer need support. If you know a family going through cancer treatment, offer to take the siblings for a playdate, or send a gift or card. Even if you do not know a family personally, contact your local children’s hospital or Ronald McDonald house and offer to take toys for siblings or help plan a sibling support event.
Support Research, Funding and Families
Cure Childhood Cancer is an amazing nonprofit whose mission “is dedicated to conquering childhood cancer through funding targeted research while supporting patients and their families.” On their website they detail research they are funding, ways to support families, and how you can directly get involved in supporting those efforts too. Maybe you cannot make a large multi-million dollar grant, but you can host a lemonade stand in honor of a cancer patient. You can attend an event and donate to an auction.
There are many different organizations that help provide support directly to cancer families.
Texas Children’s Hospital
Ronald McDonald House Charities
BIG Love Cancer Care
His Grace Foundation
Other organizations such as The National Children’s Cancer Society, National Pediatric Cancer Foundation, and American Childhood Cancer Organization are all set up to not just help with research, but support the children fighting cancer and their families.
Become an Advocate
The Pediatric Cancer Research Foundation has been leading the charge for over 35 years to bring more research funding and to create lasting cures for children battling all types of cancer. On their website there are countless ways to get involved and they have detailed resources to really help understand the need and the ways to make an impact.
Other ways include going gold throughout the year, childhood cancer doesn’t go away when the calendar flips to October, so keep the gold ribbon clear for those to see. Write or call your State and National Representatives and demand they put forth more legislation and funding for pediatric cancer research. Find ways to help improve the science departments and STEM programs within local school districts. The desire to be a doctor is one that begins early and we need bright young minds on the cutting edge of research and treatment, so helping fund these, helps children live long and healthy lives.
These Children Deserve Our Voices.
This month should not be about wearing certain colors, but learning how to advocate for research, finding ways to support families, and being there to step into the gap when the need arises. This month is our opportunity to say these youngest victims of cancer have the right to a life free of cancer, free of treatment, and free of hospital visits. Let’s all use our voices this month and say More Than 4 and find ways to surround researchers and families with all that we can give them to keep pushing forward and finding a cure that lasts.
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