Editor’s Note: Throughout the month of June, Cancer Survivors Month, we are hearing from and about those who have been diagnosed with pediatric cancers, and learning about the long-term impact and late effects of cancer treatments. The month of June also marks four years since the focus of this blog post, Brooke, was first diagnosed.
When you’re a kid with cancer, you’re not thinking about long-term impacts of treatment: you just want to get better. Parents, too, are rightly focused on a desire to put cancer behind the family and get on with life.
While some childhood cancers still have no cure, overall survival rates have climbed into a figure that’s around 80%, so more attention is being paid to those long-term impacts. What if the treatment you get today can lead to all sorts of unwanted side effects later? And, if you survive as a child, as you move into adolescence and then adulthood, what can be done to ensure you have the best possible quality of life?
Dr. John Gates, a survivor now in his 40s, has worked tirelessly to help treat kids with cancer, and to ensure that those who do survive know how to face future challenges head on.
It was an inspirational story that was tough to miss: Tyler Trent, Purdue student and Boilermaker superfan, battling a cancer that would prove fatal, and doing so with grace, poise, and character that belied his 20 years. His story has been told during countless television pieces, and social media posts, and even a book. Behind the scenes, though, Tyler made a decision that could potentially mean lifesaving treatment in years to come for others faced with aggressive cancers. He agreed to be treated by a team of professionals that would try a precision oncology approach, with genomics front and center, to test what could potentially work for others in the future. The medical team hoped to learn ways to minimize the long-term effects from a wide range of cancers for those who survive.
One member of the team that worked with Tyler, and got to know his family, too, was Dr. Jamie Renbarger, a six-time St. Baldrick’s Foundation shavee and Division Chief of hematology/oncology at Riley Hospital for Children at Indiana University Health. During her nearly twenty years as a pediatric cancer doctor and researcher, Dr. Renbarger has learned a few things about genomics, about targeted, precision therapies – like those tried with Tyler – and about how research can lead to unexpected discoveries.
It started as a lot of St. Baldrick’s Foundation events do: a few people getting together at the local spot to shave heads and help raise money for pediatric cancer research. After seeing volunteers participate, Terry Binkely-Paterno wanted to get involved in a different way.
And for very good reason, as her nephew, Aiden, had been diagnosed with rhabdomyosarcoma in July of 2008. Wanting to take action, Terry and her mothers’ group – the Wednesday Mothers Club – decided to host a bake sale and contribute the proceeds.
Editor’s Note: We’re delighted to give the floor to Rebekah, who is our guest blogger and a leader of the 46 Mommas. In this blog post, she shares what she has learned about helping kids with cancer, and keeping her own sisterhood strong.
Ellie is just like every other Mom in that she juggles all sorts of things, from kids’ schedules to work/life balance. Except she does it all while caring for a child with cancer. On her own blog, she tells stories of her family’s day-to-day with style, grace, and compassion.
Today, as we celebrate Mother’s Day, and especially the Moms who have the added complexity of pediatric cancer, we’ve decided to let her tell a Mother’s Day story on the St. Baldrick’s blog.
“Same old, same old … doesn’t count.” Bob Arceci didn’t think that old methods were going to tackle pediatric cancers. As you can hear him talk about in this video, he was looking for new ideas, for thinking that wasn’t just “out of the box,” but never really in the box in the first place.
It’s a lofty goal that’s right below the St. Baldrick’s logo for all to see: Conquer Childhood Cancers. And it’s a goal that takes a multi-faceted approach, a robust network of hospitals and researchers, and labs with professionals from throughout the age and experience spectrum.
As we learned recently when we interviewed Dr. Jeff Lipton, there’s real value in building a “pipeline” of researchers; and one way this pipeline grows is by funding the training of new researchers at hospitals and research organizations throughout North America.
We don’t collect hair donations, but volunteers are welcome to shave their heads at St. Baldrick’s events and donate their hair to another organization. It’s a great way to help two charities at once, and you can do it all in five easy steps!
Not ready to rock a bald head? You can still donate your hair AND help find cures for kids with cancer with a Do What You Want fundraiser.
Alliance for Childhood Cancer Action Days in Washington, D.C., is an
opportunity for members of the childhood cancer community – from kids and their
families to health care professionals and volunteers – to advocate for
childhood cancer issues before Congress.
St. Baldrick’s Honored Kid, Scott, a 10-year-old whose cancer is in remission, attended Action Days with his mom Nancy and has provided us with the following report on his experiences in Washington.
St. Baldrick’s Foundation1333 South Mayflower Avenue, Suite 400Monrovia, CA 91016 USA(888) 899‑2253·firstname.lastname@example.org
The St. Baldrick’s Foundation is a non-profit 501 (c)3 organization, IRS identification number 20-1173824.