Searching for meaningful gift ideas? Donate to pediatric cancer research.
Last year we put together a little guide to help with holiday gift giving by sharing with you our favorite ocean friendly environmental organizations to which you could donate your dollars in honor of someone you love. It makes for easy online giving, especially when faced with buying for those who already have everything.
This year, we are featuring something that is also near and dear to our hearts, and has recently been on our minds.
As many of you already know from our IG account, I spent around ten days in Denver this past month to help out around the house and hospital for one of my oldest and dearest friends as her family deals with a relapse of neuroblastoma in her seven year old. I am not here to toot my helper horn, but I am here to shed some light on pediatric cancer and how your donations and gifts can help.
Types of Pediatric Cancer
Pediatric cancer is horribly, wretchedly, disgustingly ugly and will rip your heart out while it destroys your otherwise perfect child. It comes in many forms. The following is not an exhaustive list, but you’ll get the idea. Most of the information can be found on cancer.org.
Perhaps the most well known and best researched is leukemia, of which there are three different kinds that occur most often in young children: acute lymphoblastic leukemia, acute myeloid leukemia, or chronic myelogenous leukemia. Treatments are usually 2-3 years long.
Hepoblastoma generally starts in the liver - this one is really rare, but I have some familiarity with it because one of my other dear friends watched her 10 year old suffer and quickly pass away from its ravages a few years ago. The treatments are basically the same as adult treatments and can have dire effects on the young patients.
Neuroblastoma generally starts in the nerve tissue and develops into larger tumors that can be quite difficult to remove and deeply involved in delicate areas, like around the heart. Once you relapse the survival rate drops to 5%. Also known as Nephroblastoma, Wilms Tumor develops in the kidneys.
Rhabdomyosarcoma or RMS is a tumor in which malignant cells look like young, immature muscle cells. It is the most common soft tissue sarcoma found in children. It has a high recovery rate, but can spread to the lungs, bones, and lymph nodes.
Lymphoma also occurs in children, both Hodgkins and non-Hodgkins, but the latter is most common in children between 10-20.
An estimated 200-300 children in the U.S. will be diagnosed with retinoblastoma, an eye cancer, this year. It makes up around 2% of childhood cancers. Though it is highly curable, those who are diagnosed and treated will be at higher risk for developing other cancers like bone cancer and brain tumors.
Bone cancer or osteosarcoma and the Ewing Sarcoma is another childhood cancer that affects the bones. Around 400 children under 20 per year are diagnosed in the U.S. Five year survival rate is 67% and the treatment is chemo, surgery, chemo.
This is not meant to be a complete list, but it shows you what is out there in the world of childhood cancers.
Treatment and Research
Generally speaking, when it comes to pediatric cancer, the research is slim, clinical trials are few, and treatments are rooted in what has proven effective at the adult level of treatment. This means that, particularly for those families facing truly rare childhood cancers, it can be difficult to find leading edge clinical trials and/or treatments applicable to their child.
Once a treatment center is found, a team is employed and a plan is created, actually implementing the plan can be challenging. Balancing travel, school, siblings, work and life, all while spending months at a time attached to a hospital can be overwhelming and near impossible without the help and support of multiple caregivers and financial assistance.
There are just over 200 children’s hospitals in the U.S. that have fulfilled the National Cancer Institute’s criteria for quality assurance standards and can be considered part of the Children’s Oncology Group. These amazing hospitals aren’t always located in your region, and the one closest to you may not have the right trial or the best, most knowledgeable team available to treat your child’s specific cancer.
This means most families will end up traveling great distances to seek treatments. This can create undue burdens outside of the actual treatments and insurance issues. That’s where many grassroots and local level foundations and organizations, often created by cancer families and survivors, can help.
We have created a short list of some of our favorite organizations that assist families and children with pediatric cancer. It is our hope that this holiday season, as you are considering gifts for loved ones and friends, you may consider supporting one of these incredible institutions and the work they do around pediatric cancer research, treatment and care.
In no particular order:
Bags of Fun provides entertaining and thoughtful bags of goodies to kids who are undergoing treatments for life threatening diseases or conditions and are in the hospital for longer periods of time. They are based in Kansas, Nebraska, and Colorado. In 2019 they delivered over 9,000 bags of fun across the country. Bags include such things as toys, games, books, movies and electronics. Bags of Fun has played a big role in helping my friend’s kid get through his long treatments in Denver.
The mission of Alex’s Lemonade Stand Foundation is to “change the lives of children with cancer through funding impactful research, raising awareness, supporting families, and empowering everyone to help cure childhood cancer.” Alex started her lemonade stand at the age of four, having been diagnosed and treated for cancer since she was age one. Her wish was to raise money for a cure. By the time she passed away at age eight, she had raised over $1 million. This foundation works with partners all over the country to assist families in need and to fund research.
The Ishan Gala Foundation is specific to Charlottesville, Virginia (and the UVa Battle Building) and is close to my heart in ways the others are not. I actually taught Ishan’s brother to swim when I was coaching at the ACAC club in Charlottesville and I became friends with his dad (who, by the way, provided lots of fierce competition in our athletic conditioning classes). Ishan was diagnosed just after his first birthday with neuroblastoma and even after moving to NYC to be treated, succumbed to the disease at age two. His dad Mayank created this foundation to assist families in Virginia, but they also help with financial assistance throughout the entire country. Their mission is to improve quality of life and support the entire family. They are meticulous stewards of every dollar donated.
In 2020 at the start of the pandemic when we were all taking more walks in nature, we began seeing these painted rocks on our trails that said Love, Team Tessa. We found out that our neighbors down the street had been close to a family that lost their Tessa to neuroblastoma. But Tessa was so fierce in her battle that her parents created a foundation in her name to continue her fight. Love, Team Tessa’s mission is to “support neuroblastoma fighters—patients and their families, as well as doctors and researchers—by funding pediatric research and helping families throughout treatment and recovery.” They are based in Michigan but support online fundraising everywhere and give to research on neuroblastoma.
St. Baldrick’s Foundation is ALL about filling the federal funding gap in pediatric cancer research. Their mission is to “find cures for childhood cancers and to give survivors long and healthy lives.” They are the largest non-government funder of childhood cancer research grants. They fund cooperative research through the Children’s Oncology Group and here’s where you come in. Of the $9.4 million needed to fund every grant application that received an outstanding score in June 2021, only $3.5 million was available and granted. Your dollar really counts here.
Lastly, we recognize the tireless work of the National Pediatric Cancer Foundation. Their mission is dedicated to funding research to eliminate childhood cancer. They focus on finding less toxic, more effective treatments through a unique collaborative research initiative called the Sunshine Project. They have so many fun and unique ways to get involved and donate.
Holiday Giving Made Easy
We appreciate you stopping by for our little Ted Talk on pediatric cancer and we hope that you will consider some of these fantastic organizations when you’re fulfilling your shopping lists or for your end of year giving in general.
These kids deserve better than 4% of federal funding. They deserve better than watered down adult treatment courses. Every family that is going through this deserves support and assistance, and to know that the world cares about them.