Josephine the Brain Cancer Warrior

$18,485 of $50,000 goal

Raised by 158 people in 5 months

Childhood cancer is considered rare and receives few research dollars, leaving children — and their families — desperate to find experimental treatments that insurance companies won’t pay for.

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 tumor that the doctors have determined is impacting her nervous system.

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 have daily trips from New Jersey to New York City to hospital for appointments, treatments, physical therapy, MRIs, surgery, biopsies, medicine, and radiotherapy. 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 chemotherapy costs not covered by insurance and alternative treatments 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 is offering 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.....Any contributions provided will go toward Josephine’s medical expenses and care.

Our words of thanks for your support seem so insignificant compared to our gratefulness for helping Josephine battle brain cancer. We are appreciative of any sized donation you can provide to help us with our incredibly brave, loving and beautiful daughter, Josephine. Thank you from the bottom of our hearts.
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9/17/18 - It has been a roller coaster since our last update...things can change drastically from one day to the other. Josephine’s ventricles received another chemotherapy thru the catheter on Thursday September 13th. It’s an aggressive growth so the treatment needs to be aggressive. Tumors don’t like that. We tried to distract Pepa’s discomfort by going out on Friday. We came across with a place where Pep wanted to try zip-lining for the first time. I don’t deny her of anything she wants to do as long she feels up to the task. She really enjoyed the place and the distraction.
The next day, Saturday 9/15, we were flying back and Josephine felt poorly having to request a wheel chair at the airport. This was very unusual as she had refused to use wheelchairs in the past when needed assistance.
I noticed she wasn’t as responsive when we stopped in Houston to change plane to Newark. Called the Doctor in Monterrey who advised to treat her with steroids and to take her to ER as soon as we got home. We went to Columbia Presbyterian in NYC directly from the airport with concern about a potential hydrocephalus. It turned out the tumors in the ventricles are causing what’s called “absence seizures” according to the EEG tests that were done at the hospital. This is currently being treated with medication.
At this point Pep needs assistance and supervision 24/7 to eat, walk, and do anything. The MRIs reveal the tumors are growing at high speed needing a combination of treatments. Today 9/17, met with the radiology team at the hospital, Josephine was measured to start radiation in the ventricles next week for a course of ten sessions. This will be done in addition to the chemotherapy she is currently getting in Monterrey every month, after a two weeks wash period from the last chemo.
The fight is intense and unfair but we will never give up on Pepa. Thank you all for your prayers and support. We are hanging in there...
9/14/18 zip lining a day after chemo
9/15/18 Monterrey airport
9/16/18 seizure treatment Columbia p
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9/8/18 Hi all,
Hope everyone is well enjoying your weekend. We are good here with Josephine in Monterrey. She received her second intra arterial chemotherapy and her first chemotherapy in the ventricles thru the Omaya catheter installed in 8/29. There was no need for a spinal tap because of the Omaya catheter being in place to infuse the medication in the ventricles which in turn circulates in the spine as well. We are hoping we ll be able to slow down or stop the monster progression taking place in the ventricles. We noticed some improvement in her eyes problems (strabismus). We are hoping to see improvement in other areas too...
There is a concern about hydrocephalus due to the aggressive treatment with so much progression going on. We are thinking the possibility of radiation in the ventricles in addition to all of the above. This would help too.
We are very happy to keep fighting for our girl because she loves life. I always said Pepa knows how to live...she really does love everything and everybody. She is putting all of herself in this fight and she is hopeful too.
Thank you all and please continue to helps us with this campaign by sharing and asking for donations if you can. These treatments come with a big tag but we are thankful they are available....I felt devastated with the lack of options at home. What would you do?

Sent from my iPhone
8/6/18 on the way to Monterrey for hope
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Hi Everyone
Today 8/29, Josephine had a procedure to implant an Omaya catheter in her brain. Pepa did well during the procedure. She was apprehensive about needles...so she was told they were going to use a laughing gas for her to relax. When she woke up from the procedure she complained the laughing gas didn’t make her laugh.

The Omaya catheter will facilitate delivery of chemotherapy into the ventricles. The MRI done this morning shows continued cancer progression in this area which has been inaccessible. The next chemotherapy will have access to this area and we are hoping that the doctors will be able to stop this progression. The intra arterial chemotherapy done in Monterrey treats the main tumor by the pons which seems to be stable. The doctors had suggested this implant so they could treat the ventricles as well.
In the meantime, Josephine is enjoying the summer activities she loves surrounded by the love and support of family and friends. The next treatment in Monterrey is coming soon. Let’s hope we can stop this progression all together. Josephine loves her life and we all love her.
Thank you all for your kindness and don’t forget to share our campaign to help support Josephine’s DIPG treatment. Thanks.
8/26 fun at the Leigh River PA
8/29 Omaya catheter surgery in NYC
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8/14/18 first intra arterial chemo and Josephine did fine. She will need the Omaya catheter to treat the ventricles as the disease had began to spread...I had managed to coordinate with a neurosurgeon in NYC who will install the Omaya catheter needed to deliver the medicine in the ventricles. Hope the doctor doesn’t change his mind .....it has been very hard to get help at home.
I am so proud of Pepa (Josephine), unable to smile due to facial palsy and 30 pounds overweight due to steroids, she remains in good spirit, cracking jokes, and looking forward to go back to school. We will continue to look into immunotherapy in addition to the current chemo she is receiving.
Thanks for your continued support and prayers. Please don’t forget to share and ask for the most needed help we need as treatments are not sustainable. It’s amazing that in this day and age, a parent have to be in this predicament to take care of a child...thank you
Pepa with sister Jen after chemo
Pepa’s stress ball for blood work
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$18,485 of $50,000 goal

Raised by 158 people in 5 months
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