Josephine the Brain Cancer Warrior

$33,085 of $150,000 goal

Raised by 373 people in 12 months
Created April 21, 2018

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.

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Every morning lean your arms awhile
upon the windowsill of heaven
and gaze upon the Lord.
Then with the vision in your heart,
turn strong to meet your day.

(Thomas Blake)

These are some views from our hospital window at Cornell. We are working steadily toward getting Josephine out of the PICU overcoming one obstacle at the time.
Have a wonderful Easter and thank you for your support and prayers.
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4/12/19: Big thank you to the staff and the 8th grade of Memorial school, Josephine ‘s classmates, who organized a fundraising dance in Josephine ‘s honor. She was supposed to be the special guest for the occasion but couldn’t make it as she is still at Cornell ‘s PICU. These acts of kindness have made a difference in our journey. Thank you so much to all of you.

After another meeting here at the hospital, it has been decided to decrease the seizure medication that is inducing coma (Midazolam) to be replaced with other medications. She has been stable for a while and the team feels comfortable enough to attempt transition into a regular room at the hospital and eventually home as I had hoped. This is good. ❤️
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4/7/19: Josephine status has not changed. We are still at Cornell where she has been induced in a coma due to uncontrollable seizures. This is a good hospital and a good team of doctors. We had a meeting last Thursday where we were informed that she will most likely not be able to overcome the seizures. They tried different combinations of meds all last week. They took the EEG off on Thursday to give her head a little break. It was nice to wash her hair and untangle it. I am still holding on to hope even when they tell me Josephine is not coming back home. It would be very difficult to go on without this hope I have.
I asked they allow me to continue her ONC201 medication we purchased in Germany as her tumor needs treatment. They will also continue to try balancing the meds in a hope to control the seizures.
At this time of the year, we start making plans for spring and summer, spring break, camping, beach, and biking. Pep likes sunny days as much as I do. How can I ever enjoy a sunny day without her when she has been our sunshine ? She lighted up every room she entered with her smile and beautiful spirit.
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4/4/19: we are stuck between a rock and a hard place. Josephine’s seizures can’t be controlled regardless of medication. If we stop medication the amount of seizures will most likely caused death according to the doctors. We had a meeting with the team of doctors and had to decide what to do.
The amount of sedation from seizures ‘s medication causes Josephine to sleep. She has not waken up since last Friday, a week from today when the procedure took place. She still breathing with the ventilator.
We are keeping her comfortable and I hope she is having beautiful dreams of all beautiful places we visited, birthdays and holidays we spent together as a family. I hope she knows and feel how much we love her. This is my favorite picture of our Pepa as a child.
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$33,085 of $150,000 goal

Raised by 373 people in 12 months
Created April 21, 2018
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