My New Year's Wish

When I first heard the news that $190 million in funding for pediatric cancer research had been stripped from the latest spending bill in Washington, I couldn’t stop thinking about my daughter, Maddy. I thought about how her life, cut too short,—and the lives of so many other children—depended on access to cutting-edge treatments and groundbreaking research that funding like this makes possible. Because let’s face it: funding is already terrible for children: only 4% of funding for cancer research goes towards children’s cancer. We do NOT put children first and most childhood cancer drugs are DECADES old and VERY toxic. 

It brought me back to the day my husband, Dan, and I heard the words all parents fear: “Your child has cancer, and it’s rare.”

Maddy was just four months old when she was diagnosed with a genetic variant of leukemia: infant leukemia (mLL-r). She was immediately admitted to INOVA Children's Hospital in Fairfax, Virginia, where she began her first round of treatment. Her twin sister stayed at home with grandparents and rotating family members while Dan and I took turns doing shifts at the hospital each night. I'll never forget the night her high-dose chemotherapy medicine caused her to spike a fever so high that we had to place ice on her body. It was 2021, but it felt like I was back in the dark ages. The toxic chemicals running through her body were supposed to kill the cancer cells, but the therapy didn’t work. So, we knew we had to look beyond Virginia for more advanced care. Her life depended on it.

If we didn't have the privilege of having excellent insurance or access to some of the best doctors in the world, we would have had to just see what happened .

Instead, we began the difficult process of interviewing four different hospitals, eventually choosing The Children’s Hospital of Philadelphia (CHOP). They gave us the best chance at saving Maddy’s life—offering a cutting-edge treatment known as CART-cell therapy, which was far less toxic than the traditional options. Because Maddy’s cancer was so aggressive, the plan was to follow CAR T-cell therapy with a bone marrow transplant. To our relief, Maddy’s fraternal twin sister was a perfect match for the transplant.

We lived in and out of the clinic for three months. Yet amid the overwhelming challenges, we were grateful- grateful for moments when Maddy could enjoy life as a baby and when our family could be together with two aunts and a nana who gave up everything to help us. Unfortunately, just after her first birthday, her disease became much worse very fast. We had the privilege of switching hospitals and covering the medical bills, which would have amounted to over 2 million dollars. Despite our best efforts and the incredible care we received, Maddy passed away on August 13, 2022.

Another friend and advocate and nonprofit founder of the Callahan Murphy Hare Foundation, Kate Hare, shared her story with us about her son, Callahan, who has the same disease as Maddy. He was born with cancer. He could not access the best course of treatment because of the toxic drugs that left him with severe liver damage. And although he has survived, as a result of receiving decades old treatments that weren't made to take into consideration the differences in children, he faces many developmental challenges. His liver is an ongoing organ they watch, he has long-term Gastrointestinal dysfunction, his language skills at three-and-a-half years old are equivalent to an 18 month old, he wears braces on his feet and legs as his overall development and growth has been impacted.

What we both witnessed during our time in the hospital was deeply troubling. We saw babies who had no one with them, left alone in their rooms because their parents or caregivers had to choose between being by their child’s side or keeping a roof over their heads. No parent should have to make that decision.

This is why my husband and I founded the Madelyn James Pediatric Cancer Foundation. Our mission is clear: we are committed to increasing access and equity in pediatric cancer care. We want to ensure that every child, regardless of their family’s financial situation and where they live, has access to the life-saving treatments they deserve.

We want to stand with you and tell Maddy’s story and the stories of so many other children who need support to survive. We believe that if we can help children get the treatment they need, we can save countless lives and give more families a chance at survival and hope.

Here are the stark realities we are trying to change (data was pulled from the NIH and the Kira Bona Equity Lab):

• Cancer is the leading cause of death by disease after infancy among children in the United States.
• 15,000 children are diagnosed with cancer each year in the U.S.
• 4,000 of these children live in poverty.
• Survivorship rates and relapse rates are lower for children living in poverty.
• The average number of years lost to cancer is 70 for the 20% of children who lose their lives to cancer each year

The abysmal truth is that low-income children in this country are more likely to die from their cancer diagnosis, a reality that we can't live with. Access to care determines the outcome. 

We need more funding, resources, and attention paid to this critical issue. Even though our government did renew the Gabriella Miller Kids First Research Act, what was not funded was three other pediatric cancer bills which included a policy to make it easier for low-income children on Medicaid to cross state lines for specialized cancer treatment, and two bills aimed at incentivizing pediatric cancer drug development. We should be increasing funding and access to care. This is a devastating setback—one that will cost lives. It sends a clear and heartbreaking message: children fighting cancer are not a priority. But we cannot, and will not, accept this.

With every day that passes without action, more children and families face impossible battles. Cutting funding AND access to care doesn’t just slow progress—it condemns children to outdated treatments and fewer chances for survival. This cannot stand.

Please join us in supporting children like Maddy. My New Year’s Wish is to ask Congress to increase funding for childhood cancer and pass bills to ensure all children have access to a cure: no matter where they come from or how they identify. At Madelyn James, our work is just beginning, and with your help, we can make a difference. Let’s demand that our leaders restore and expand funding for pediatric cancer research and access to groundbreaking therapies. Let’s raise our voices, tell our stories, and push for the change that children fighting cancer so desperately need.

If we don’t care about our children, what do we actually care about?

With love and hope,

Jackie Horstmann Didio