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Josephine the Brain Cancer Warrior

$20,995 of $50,000 goal

Raised by 180 people in 6 months
Created April 21, 2018

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 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 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.....we are currently spending $22,000 monthly in these treatments since August 2018. 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, beautiful and beloved Josephine. Thank you from the bottom of our hearts.
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11/10/18
Hi All,
I hope everyone is well getting ready for the holidays. We are too and all I hope for is to have all my children with me. Since our last update, Josephine baseline has not changed. I was concerned with a constant coughing accompanied by lots of phlegm that wasn’t going away. Breathing patterns were weird....I took her for chest X-ray and came back clean. They were unable to accommodate for an MRI to see what’s going at the source, so we moved up our trip to Monterrey.
The MRI shows the ventricles problem continues to be under control, which is good. However, there has been some progression derived from the pons...we are at the eleventh month marker since the symptoms started back in January of this year, and the ninth month marker since diagnosis.
The doctors in Monterrey recommended to do the treatments closer together every 20 days for a couple of months and see if we can stop this progression.
I have been able to treat the cold with over the counter medication and the phlegm situation is better. She is also breathing better.
Josephine received intra arterial and Omaya catheter treatment on Monday 11/5. She also received a second treatment thru the Omaya catheter yesterday 11/09, as the chemotherapy going thru the Omaya also irrigates the other areas of concern derived from the pons...
I try to provide as much details as I can because I know the information is especially useful to other sleepless parents going thru the same nightmare. But do not hesitate to contact me directly if I can be of any help or I can answer questions (pgesualdi@aol.com).

We are hoping these treatments approach will give positive results and we could celebrate thanksgiving and Christmas with Josephine.
Thank you so much for your continued support and please share if you can as we need your help more than ever. God bless you all.
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10/29/18
Today we visited Boston children’s hospital for a neurosurgeon ‘s opinion on possible surgeries to improve Josephine’s current tremors in the right arm. These tremors are triggered when she tries to use her right arm. She is unable to write or draw, activities she misses dearly. Her communication is also an issue as she has not been able to regain control of the muscles in the right half of her face. Her smile was taken away back in July but she still giggles at our silly jokes. She is always in good spirit.
Chocking with food or liquid is a daily struggle. We follow a soft diet with thickened liquids like smoothies and yogurts. This has been her baseline since August.
We are happy that she is still with us as the secondary tumors in the ventricles seem to be under control. The neurosurgeon at Boston Children Hospital compared the MRIs from September and October and confirmed the improvement. She said “whatever they are doing in Mexico seems to be working.” This is important for all of us to know. Cancer spreading into the ventricles usually take lives in a matter of four to six weeks....very quickly...we were able to stop this collateral spreading.
Unfortunately the main tumor in the stem is still there, reachable only by the intra arterial chemotherapy that Josephine receives in Monterrey Mexico, the only treatment available at this time.....
I am hoping that our government revise their funding allocation for pediatric cancer. Most people who donates privately to organizations like “The cancer treatment of America” and others like it, are unaware that they do not help children. I called them a few times and always reminded me that “they do not work with children...!” Others donate to Saint Jude for pediatric cancer and the truth is that I hear families with DIPG children being turned down....they just can’t help the most devastating pediatric cancer, they are just a free hotel for palliative care.
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.
learning to use her left hand
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10/13/18
A quick update, MRI shows improvement! I couldn’t be happier....I think we have an angel helping us now....or a few...! This is the fuel I needed....long day we are both tired was it the chemo thru the Omaya catheter? Radiation? ONC201? Maybe all ! A multi approach I d like to think....thank you for praying! God bless you
Pep showing me my bed at the hospital
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10/13/18 Hi All
It has been a very emotional week, Josephine turning 13 and loosing grandma the very next day. She had a wonderful birthday thanks to the kindness and warmth of friends, family, and coworkers who helped to make Josephine’s October 10th birthday a very special day. She was very happy. Every day is a gift.

Seeing her hair falling yesterday was upsetting to her. This is something we were expecting with radiation but all these things are beginning to take a toll on her. She has hopes and dreams like any other 13 year old and they seem to be crashing by the impairments she is dealing with everyday....her right arm is shaking constantly now and her debilitating fatigue is confining her to a chair or bed for the most part....

We are in Monterrey for the monthly treatments she receives here. Josephine will have an MRI and we will see how things are going....wish us luck and thank you again for following.
Regards to All
Cookies and decorations by coworkers
Josephine’s 13th birthday on 10/10/18
Hair loss due to radiation 10/12/18
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$20,995 of $50,000 goal

Raised by 180 people in 6 months
Created April 21, 2018
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