Last week we were lucky enough to catch up with one of the Penn State greats in Devon Still. We spent a few minutes talking about Leah’s experience, and in turn his, as Leah’s parent.
September is Childhood Cancer Month, and the Stills are partnering with United Therapeutics to launch “Braving NeuroBLASToma” in hopes of informing families dealing with the disease.
When speaking to Devon, one of the first things he shared was the amount of resources available for people to take advantage of. He wasn’t as prepared to deal with the rollercoaster of emotions that come with a diagnosis like this, but is grateful for all the help Leah’s doctors have given him, as he didn’t have time to go outside and do all the research. to do that he needed to be alone.
While there isn’t one specific thing he would have liked to have known beforehand, the concept of having a script available is something he finds immensely helpful in retrospect, especially when some of the conversations with the doctors sometimes felt like they were speaking a different language. . He hopes that by sharing these resources with families, they will be better prepared to face the challenges ahead. There are many resources available for people to educate themselves on the subject of neuroblastoma.
Leah’s message to other kids dealing with neuroblastoma is, “You’re not alone.” There are people like her who have been through it, ready to support those who are now going through the journey. There is light at the end of the tunnel, you just have to keep fighting.
Devon’s fondest memory of his time with the Nittany Lions sneaks into a question from Penn State and ran out of the tunnel toward Michigan State in 2008.
Due to the number of injuries he’d had prior to that game (a torn ACL in 2007 and an ankle injury earlier in 2008), he didn’t think he’d be able to play football again, yet he went on to play 10 snaps against the Spartans in the game, three more seasons for the Nittany Lions, and a few more in the NFL.
How to help
Whether you’re going through this journey yourself, want to support someone going through the journey themselves, or just want to join in, there are a number of resources available on the Braving Neuroblastoma page for anyone to get involved in. Some of the resources available include a range of free books (and other downloadable materials) to help people dealing with the disease.
To learn more about Devon and Leah’s partnership with United Therapeutics, read on:
In honor of Childhood Cancer Awareness Month (September), United Therapeutics Oncology is proud to partner with former NFL player Devon Still and his daughter Leah, a survivor of high-risk childhood neuroblastoma. Defying NeuroBLASToma – an educational initiative to support families affected by neuroblastoma and provide comprehensive resources no matter where they are in the patient’s trajectory: newly diagnosed, in treatment or post-treatment and beyond.
Neuroblastoma is a rare type of solid tumor cancer that can form in a variety of places in the body – abdomen, spine, chest, or adrenal glands and usually develops in infants and children under five years of age. About 800 children are diagnosed with neuroblastoma each year, accounting for 7-10% of all childhood cancers in the United States. At the time of diagnosis, nearly 70% of children will have advanced or metastatic neuroblastoma, with only half of these patients achieving remission.
Proud NeuroBLASToma Features:
A family-friendly toolkit with a resource-rich website, including an extensive library of information and resources, such as questions for your doctor, navigating clinical studies, treatment insights, and advice for healthcare providers. A series of four beautifully illustrated books, including the latest issue of Zara Takes Off – as hopeful and encouraging as the family’s transition to life after treatment. The new release includes a personal foreword written by Leah, detailing her personal journey. Each book highlights different stages of the journey to high-risk neuroblastoma, starting with The Big Adventures of Little Skivolo that helps families understand diagnosis and treatment, The Next Big Adventure of Little Skivolo that focuses specifically on the antibody therapy phase of treatment , Little Skivolo’s Big Book of Fun, an activity book to entertain children and families during hospitalizations, and culminates in Zara Takes Off.
United Therapeutics is continuously focused on addressing unmet treatment needs in the pediatric neuroblastoma population and is committed to the continued care of children affected by this devastating disease. United Therapeutics wants to inspire families and children affected by this disease to be vigilant at all stages of their journey so that they too, like Zara, can envision themselves becoming happy, healthy, strong and courageous. Together we can help educate many others around us and defy neuroblastoma. Visit www.bravingneuroblastoma.com for more information!