By Jack Winters

My journey with cancer has taught me about the strength of the human spirit.

I’m a childhood cancer survivor. As a patient, cancer research advocate and pediatric nurse, I’ve seen hundreds of children and families overcome insurmountable odds and survive illness to live life to the fullest. Their courage has made me believe in the power of hope and love, and brought me through some very dark days.  

When I was 16, I was diagnosed with rhabdomyosarcoma, a soft-tissue cancer. I was a sophomore in high school at the time, competing in swimming and rowing year-round, and writing for my high school newspaper.

When I got the diagnosis, I felt mostly shock and uncertainty. Life seemed like a whirlwind as I shuttled between specialists. I was referred to Memorial Sloan Kettering Cancer Center in New York City for treatment, where I started chemotherapy.

I was high risk but my prognosis was positive, so we did have hope to cling to.

While I was undergoing treatment, my cancer started to advance again. At that point, my care transitioned to Yale New Haven Children’s Hospital, so I could be closer to home. At Yale, I had more intense, inpatient, hospitalized rounds of chemotherapy, in addition to surgery and radiation. My total treatment period was 18 months. And I am very happy to say that I just celebrated nine years of being cancer-free!

Most people don’t know that cancer is the #1 disease killer of children, and that two-thirds of the kids who survive will develop lifelong, debilitating side effects. If the harsh realities of childhood cancer were better known, we could come together to find new treatments and cures. During my own cancer treatment, I spent most of my days in the hospital vomiting, on a continuous narcotic infusion for the pain as the chemotherapy eroded my esophagus. Even though it’s uncomfortable to talk about, it is important to recognize that this is a horrible disease that needs to be eradicated.

Cancer is hard on everyone involved.

When you’re in treatment, your only option is to fight and keep moving.  And your family has to watch the child they love suffer. I am lucky to have an incredibly supportive family. And we were all embraced by an amazing community rallying around us—even people we never met—making donations, cooking, sending cards and showing love.

When you’re battling cancer, you can only focus on getting through the day or the moment. My advice to kids going through what I went through is to focus on the things that make you happy and give you hope; whether that’s your family, friends, reading, nature, watching TV or prayer. It’s okay to cry, see a therapist, punch a pillow and want to give up sometimes. It seems impossible, but things will get better.

When I was in treatment, my oncologist told me that CureSearch was the leader in driving the development of new childhood cancer treatments. CureSearch funds the kind of research that saves lives and it is important that they receive our support.

My hope for the future is that all children with cancer can have the wonderful care I did and join me in achieving remission. As a survivor, I am grateful to wake up every day and try to make the world a better place. That’s why I became a pediatric ICU nurse. All of us can take action—to find less-toxic treatments so children don’t suffer from long-term effects to their health—and to find cures. With our support, one day, children’s cancer will be a thing of the past.

—–

Jack survived rhabdomyosarcoma, the most common soft tissue sarcoma in children and adolescents. In the United States, about 350 new cases are diagnosed each year in children under 20 years of age. At CureSearch, we’re driving high-potential research to make a difference. Learn more about active CureSearch research projects addressing rhabdomyosarcoma.

The post All of Us Can Take Action to End Childhood Cancer – A Survivor’s Story appeared first on CureSearch for Children's Cancer.

CureSearch IMPACT Series Forums bring global pediatric experts in academia and pharmaceutical companies together to accelerate the development of pediatric cancer drugs.

“Children with cancer wait an average of 6.5 years longer than adults to access new drugs.”¹ Cancer is the number one disease killer of children, yet it is challenging for children to get access to the most promising and novel cancer treatments available for adults. CureSearch is driving the alignment of research much earlier in the development process to help drive new treatments to children faster.

Currently, companies developing cancer treatments for adults are not required to develop them for children simultaneously. Instead, information on proprietary research for adults is made public during Phase 2 clinical trials—a timeline that puts the discovery process for pediatrics years behind. 

To close that gap, CureSearch for Children’s Cancer created the IMPACT Series Forum, a first-of-its-kind collaboration to bring promising treatments to children faster. This confidential, closed-door session brings together a select group of leading international pediatric academics with one pharmaceutical company. The researchers get an early window into the drug development pipeline for adults, and are able to provide insights into the relevance for pediatric oncology.

“It would have taken me six months to have one-to-one meetings with each academic, and I would have walked away with half of the information I learned today.” – Pharmaceutical representative

Leading the way to advance children’s cancer treatments

This mutually beneficial forum was such a success that three IMPACT Forums are  scheduled for early 2020. CureSearch is planning to host at least four IMPACT Series Forums each year, partnering with academic experts, pharmaceutical companies and drug development leaders to accelerate the search for cures. 

¹ Boston Children’s Hospital. “Children with cancer wait an average of 6.5 years longer than adults to access new drugs: Call for expanding children’s access to experimental cancer therapies.” ScienceDaily. ScienceDaily, 21 May 2019.

——

For 30 years, CureSearch has been working to end childhood cancer by driving targeted and innovative research with measurable results in an accelerated timeframe.  We are focused on advancing the strongest research out of the laboratory and into clinical trials and development, where better, less-toxic treatments to help the children who need them. Follow CureSearch on Twitter @curesearch, join the conversation on Facebook at www.facebook.com/curesearch or Instagram at https://www.instagram.com/curesearch/.

The post Children are waiting longer than adults to access new cancer drugs. CureSearch is changing that. appeared first on CureSearch for Children's Cancer.