DIPG is a childhood cancer considered rare. It receives less funding 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.
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 had not changed since that time.
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 brain cancerous tumor called DIPG that the doctors have determined is impacting her nervous system and it’s lethal.
Since that fateful day in February, we have been visiting different doctors and hospitals desperately trying to find care that will help Josephine while we struggle to find a balance between treatment options and quality of life. We are praying that while she is fighting, a medical breakthrough will happen and Josephine will be able to quickly go back to being a normal 12 year old girl. But the cold reality of a brain tumor is weighing heavily on our hearts as our child has the fight of her life ahead of her.
We had daily trips from New Jersey to New York City to hospital for appointments, treatments, physical therapy, MRIs, surgery, biopsies, medicine, and radiotherapy. We now have monthly trips to Monterrey, Mexico for intra arterial chemotherapy not available in the U.S. Taking pride in always being able to care for our children ourselves makes it very difficult to ask for help, but we are in a situation where every bit helps so we must ask. The monthly intra arterial chemotherapy costs not covered by insurance are beyond our means.
As of June 1, 2018, promising treatments such as CART T cell therapy and TOCA 5 among other form of treatments are still work in progress…The new law “right to try” that just passed only addresses FDA approval of drugs not procedures….
As of July 1, 2018, a genetically modified poliovirus therapy developed at Duke Cancer Institute shows no sign of clinical trials for DIPG pediatric tumors...In fact, study participants of prior trials were selected according to strict guidelines based on the size of their recurring tumor, and its location in the brain. A tumor by the pons is not a location they would even consider at this point....
Monterrey, Mexico offers intra-arterial chemotherapy which consists in delivering chemotherapy in a highly selective way, infusing the drugs directly on the arteries that feed the tumor. This procedures are supplemented later on with immunotherapy. The cost of these procedures ranges from $15,000 to $33,000 per infusion depending on the combination of the procedures. The number of treatments depends on every patient's response, but the frequency ranges between 8 to 12 treatments the first year. Josephine ‘s first intra arterial chemotherapy took place 8/13/18 and we are coming back every four weeks afterward.....we have been spending $22,000 monthly in these treatments since August 2018. These expenses are adding up......
Any contributions provided will go toward Josephine’s medical expenses and care. No amount is too small and it is greatly appreciated.
￼￼￼￼￼￼￼￼￼￼￼￼￼￼Thanks for your support in helping Josephine battle brain cancer. She has been incredibly brave....she is a beautiful person in 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. Thank you.https://www.change.org/p/united-states-congress-help-save-our-children-from-cancer