Diffuse Intrinsic Pontine Glioma(DIPG)
This is Our Josephine. She was Diagnosed with DIPG at Age 12.
The treatment for DIPG has not changed in more than 50 years. Astronaut Neil Armstrong lost his young daughter, Karen, to DIPG in 1962, protocols for treatment and life expectancy have not changed since that time. DIPG is rarely talked about because less than 400 children a year are diagnosed in the USA.
In February 2018, our 12 year old daughter Josephine was complaining of double-vision and began losing her balance. We brought her to the eye doctor who immediately sent us to the emergency room. That emergency trip to the hospital forever changed our lives as Josephine was quickly diagnosed with a cancerous tumor in her brain called DIPG. The doctors determined it was impacting her nervous system. DIPG is lethal.
DIPG is a childhood cancer considered rare. It receives less funding than adult cancers leaving children — and their families — desperate to find experimental treatments that insurance companies won’t pay for. DIPG is viewed as an orphan disease because it has not been adopted by the pharmaceutical industry due to little financial incentives for the private sector to make or market medications to treat it.
Since that fateful day in February 2018, we started visiting different doctors and hospitals desperately trying to find care that would help Josephine while we struggled to find a balance between treatment options and quality of life.
We prayed that while she was fighting, a medical breakthrough would happen and Josephine would be able to quickly go back to being a normal 12 year old girl. But the cold reality of a brain tumor weighed heavily on our hearts as our child had the fight of her life ahead of her.
We had daily trips from New Jersey to New York City to hospitals for appointments, treatments, physical therapy, MRIs, surgery, biopsies, medicine, and radiotherapy. We also took monthly trips to Monterrey, Mexico for intra arterial chemotherapy not available in the U.S.
Our Josephine Passed Away on June 5, 2019. She was 13 years old.
There are More Children and Families Going Through the DIPG Nightmare
People donate to Saint Jude for pediatric cancer and the truth is that I hear families with DIPG children they are being turned down....they just can’t help the most devastating pediatric cancer, they are just a free hotel for palliative care. I am hoping that our government will revise the funding allocation for pediatric cancer. Most people who donate privately to organizations like “The Cancer Treatment of America” and others like it, are unaware that they
do not help children. I've called them a few times and am always reminded me that “they do not work with children...!”
The biggest help needs to come from our government, they have the power to prioritize and help the smallest but most precious segment of our population...our children.
Please see our DIPG Support Page to find out where you can get more information.
Thanks for sharing Josephine's Journey with DIPG brain cancer. She was incredibly brave....she was a beautiful person inside and out, beloved by all. Please take a moment to sign the below petition and change the outcome for all kids and families who are in this same predicament.