Like all parents, CNN national correspondent René Marsh and her husband, Kedric Payne, could not wait for the arrival of their first child.
“March 14, 2019, remains the best day of my life. That was the day that I became a mom. I got to meet this person who had been growing inside me for nine months, and he was a very happy, fun and smiley baby up until 9 months old,” Marsh tells Yahoo Life.
After noticing that Blake could no longer control one of his eyes, making him appear crossed-eyed, Marsh took him to see an ophthalmologist. The doctor informed her that Blake would need an MRI if his eye did not improve. Fear set in as the new parents closely monitored Blake’s condition. On Dec. 22, 2019, they rushed him to the hospital after his eye became puffy.
“I could read the body language of the doctor before they even said the words. He said that your son has a fast-moving aggressive tumor right in the center of his brain,” Marsh tells Yahoo Life. “And that was how our cancer journey with Blake began.”
The first step was surgery to remove Blake's tumor. Then doctors presented Marsh and her husband with a treatment plan involving chemotherapy drugs. Chemotherapy is designed to kill cancer cells and can cause symptoms like nausea, fatigue or hair loss. For Blake, the side effects got more severe.
“We went through the chemotherapy. We did cycle one and at the end of cycle one, Blake had a toxic reaction to one of the chemotherapy drugs, and he went into cardiac arrest,” explains Marsh. “That was directly correlated to one of the chemotherapy drugs.”
While chemotherapy drugs have been approved for use on children by the Food and Drug Administration, most drugs were created for adults and the doses are lowered according to the size of the child. These drugs are the best course of treatment for pediatric cancer but leave many parents searching for better options.
Says Marsh: “Forty-year-old chemotherapy drugs made for adults and that was his best shot at survival. This is what we have, and this is what oncologists are working with. In my son's case, we saw some successes. Blake was in remission, and when I say remission I mean the cancer was not detected on MRIs for about seven months, but then it came back.”
On April 14, 2021, Blake died at just 25 months old. Since then, Marsh has been navigating her grief with the support of Kedric and their family, friends and co-workers. Marsh says that she tries to do something for Blake every single day as a way to honor his life and create lasting change.
“I want all this terrible pain that I'm feeling, for something positive to happen so that no other mother has to feel this. Because honestly, it is so bad that you would truly want to spare a stranger from it,” says Marsh.
According to the Centers for Disease Control and Prevention, pediatric cancer is the No. 1 cause of death from disease among children. Nearly 16,000 children and adolescents will be diagnosed with cancer in 2021 and nearly 2,000 will die of the disease, according to the National Cancer Institute. Some cancers, like leukemia, have seen survival rates improve due to the treatments available. However, brain cancers like the pineoblastoma that affected Blake are the deadliest form of pediatric cancer and still have no cure.
The lack of research comes down to a numbers game. More adults get cancer, so it’s more profitable for pharmaceutical companies to focus on those treatments, and they have less incentive to spend money researching pediatric cancers. In recent years, there has been more focus on raising awareness around this issue. In 2012, the Creating Hope Act was created to provide incentives for pharmaceutical companies to invest in drugs to treat rare pediatric cancers. The voucher program was temporarily reauthorized in September 2020.
To honor her son and raise awareness for pediatric cancer, Marsh launched the Blake Vince Payne Star fund to provide funding for pineoblastoma research. “It's raising money in conjunction with the Pediatric Brain Tumor Foundation, which is a nonprofit and all of the money that we raise is going to fund researching this disease that stole Blake from me,” says Marsh.
Now an advocate for pediatric cancer awareness, Marsh wrote a children's book entitled The Miracle Workers: Boy vs. Beast, which will be available in the fall. All proceeds from the book will go toward the Blake Vince Payne Star Fund.
Marsh also created a petition to urge the Biden administration and Congress to have a comprehensive plan to end pediatric cancer as part of a national plan to eradicate the disease. Marsh brought the petition before Congress on Sept. 24, and shared her story during the Childhood Cancer Summit. “I created it on my first mother's day without Blake,” says Marsh. “The whole mission behind the petition was to try to have some sort of document that people can support, so that you can quantify to the lawmakers that there is support amongst the American public for them to do something about this issue.”
Marsh says that Blake made her a mother but also taught her endurance, how to love and the depths of her own strength. He is gone, but his memory inspires Marsh to keep looking for a cure.
“He's the one reason why I feel like I have to keep on pushing on, because I feel like I have to keep fighting for my son, even though he's not here.
– Video produced by Stacy Jackman