September was childhood cancer awareness month, but childhood cancer devastates families year round. Emanuel and Angie Reese have focused on enhancing their son Jaisyn’s quality of life after he was diagnosed with Diffuse Intrinsic Pontine Glioma (DIPG) in January. The Reese family has also advocated passionately for increased pediatric (childhood) cancer research.
There is no cure for DIPG, radiation treatment may extend a child’s life for an average of 9 to 12 months. DIPG is a tumor located in the pons of the brain stem. The cancer is said to “spread like sand”. It has a 0% survival rate. Angie said it’s hard to talk about Jaisyn’s condition. It is nearly impossible to find the words to help people understand the gravity of his condition and the severity of his prognosis while still trying to embrace hope.
For children battling DIPG, the goal is to sustain quality of life and make every day count. DIPG is a terminal diagnosis. Doctors gave Jaisyn 9 to 12 months when he was first diagnosed in January. Angie said, “People don’t understand. This will take his life. We don’t know when. Nobody knows, but it will.”
DIPG accounts for 10% of all childhood central nervous system tumors with approximately 300 children in the United States alone being diagnosed with it every year. Brain cancer is the most deadly of childhood cancers and receives only a small portion of the 4% of funding allocated for all pediatric cancers by the National Cancer Institute.
Astronaut Neil Armstrong’s daughter, Karen, died from DIPG in 1962 when she was two years old. In nearly six decades, almost no progress has been made against this disease. Due to funding allocations going largely to other and adult cancers, limited research has been done on the disease and standard treatment options have not changed or improved.
Angie said, “To me, that’s not okay.”
Radiation to prolong life is the still the standard treatment with an average of 9 to 10 months. Clinical trials are a parent’s only current hope at this point. “These are parents that are grasping for anything to save their kids.”
DIPG Awareness Resolution (H. Res. 114) is a resolution, not a law, expressing support for the designation of DIPG Awareness Day. It also encourages that the years of life lost, and the mortality rates associated with certain types of cancers be taken into consideration when cancer types are prioritized for research grants that use government and private funds. (congress.gov)
Emanuel supports an advocacy group made up of families who have lost a child to DIPG, Moonshot4Kids, that has been actively advocating for H. Res. 114. More detailed information about Moonshot4kids can be found at www.moonshot4kids.org.
250 children die from cancer every day around the globe. Angie said, “250 families every single night put their kids to bed for the last time because they will die from cancer. Every night.”
Angie has sympathy for adults battling cancer, but expresses frustration that more is not being done to advocate for children. “I’ve watched my family members at an older age go through chemo. I am not knocking adult cancer. My grandma had breast cancer twice. But it’s just the way that everybody flocks to those. These kids are losing on average 70 years of their life. 70 years of their life. Whereas when adults are diagnosed they have gotten to live their life. Some of these cancers are caused by their lifestyle. These kids did nothing. They did nothing. This is why parents get so aggravated.”
Emanuel said, “Many people do not know how little funding goes to childhood cancer research.” It’s a challenge for advocacy groups to convince government leaders and investors that investing in childhood cancer research is more than numbers and money, it’s about saving the lives of children.