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Josephine the Brain Cancer Warrior

$22,050 of $150,000 goal

Raised by 191 people in 9 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 are currently 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
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Update 31
Posted by Patricia Palman
1 day ago
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1/16/19 it has been a year since Josephine started showing signs of her brain tumor. New Year’s Eve to be precise...Pep was doing gymnastics when balancing problems started to surface. I would had never imagined the magnitude of the problem. A year later she is unable to maintain her balance at all and can’t walk without assistance. This doesn’t stop her from wanting to go places and enjoy life. We still go to movies, mall, spa for a relaxing facial or massage. Her grateful spirit is always optimistic and looking forward to tomorrow. The wheelchair has become an ally. The wind is not blowing her way so she adjusts her sails.

We are heading to Monterrey soon for treatment and a new assessment. She has been receiving Avastin infusions every two weeks and ONC201 weekly. We are trying to improve quality of life by taking her for physical therapy and occupational therapy every week. Her teachers come to the house two hours every day to keep up with school.
Josephine is not in pain, just uncomfortable with her facial paralysis as this impairs her communication and it’s a bit frustrating. Of course this doesn’t stop her from chatting. She manages to get her point across.
She still have some absence seizures but I have replaced Kepra with CBD and she has lost a few pounds. She is also off steroids. Avastin has taken its place.
Thanks so much for following and let’s hope for improvement. I had to update our fundraising goal to reflect actual medical expenses since February 2018. Kindly share our fight and donate if you can. Not amount is too small and it’s greatly appreciated.
Someone always waiting for her at home!
A cup gift from coworkers
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Update 30
Posted by Patricia Palman
28 days ago
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We want to thank everyone for the support received and wish you all Merry Christmas and Happy New year. We are tremendously grateful that Josephine is stable as we are approaching the year marker from her devastating diagnosis. I can only thank you for your prayers, kind words, and good thoughts. I hope not to bore you but I made a summary of all the things that our brave warrior has gone thru this year without ever complaining, happy and positive as always. Please pass along to those I might have omitted if interested in our news. Thank you.

DATE Procedure Location Notes
4/9/2018 thru 05/18 30 rounds of radiation Columbia Presbyterian Hospital
6/18-7/18 Nivolumab trial -Intravenous Infusions Columbia Presbyterian Hospital
7/18- 8/18 None-Applied for trials but we were denied because of progression in the ventricle area Memorial Sloan Kettering Progression in the ventricles spreading like a wild fire.
8/13/2018 First Intra-Arterial and Intrathecal Chemotherapy Hospital Los Angeles-Monterrey MX Doctors recommended Omaya catherer implant to treat the ventricles and radiation in the ventricles to slow down progression
8/29/2018 Omaya Catherer Implant Surgery Columbia Presbyterian Hospital
9/7/2018 Intra-arterial and Omaya chemotherapy Hospital Los Angeles-Monterrey MX
9-10/9-13 IV Emend Clinica 0-19 Monterrey MX
9/13/2018 Omaya chemotherapy Clinica 0-19 Monterrey MX
9/22/2018 ONC 201 Chemotherapy pills -started weekly Shipped from Germany
9/24-10/4/18 8 rounds of radiation -Ventricles Columbia Presbyterian Hospital
10/12/2018 Intra-arterial and Omaya chemotherapy Hospital Los Angeles-Monterrey MX
10/18/2018 Omaya chemotherapy Clinica 0-19 Monterrey MX remarkable improvement as per new images
11/5/2018 Intra-arterial and Omaya chemotherapy Hospital Los Angeles-Monterrey MX
11/9/2018 Omaya chemotherapy Clinica 0-19 Monterrey MX
11/19/2018 Avastin intravenous Infusion Hackensack Meridian Hospital
11/28/2018 Intra-arterial and Omaya chemotherapy Alfa Medical Center -Monterrey MX tumor stable.
12/1/2018 Omaya chemotherapy Clinica 0-19 Monterrey MX
12/10/2018 Avastin intravenous Infusion Hackensack Meridian Hospital
12/17/2018 ONC 201 Chemotherapy pills -six month supply Dr.Arnhold-Frankfurt Germany


Immunotherapy is in the horizon for next year.
Happy Holidays and God bless you All.
Patricia/
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Update 29
Posted by Patricia Palman
1 month ago
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11/27/18 a quick update from Monterrey, Josephine had an MRI done in Hackensack New Jersey on Monday 11/26. We brought the disk to the doctors in Monterrey to review the results and compare to the 11/06 MRI. We were pleased to see improvement.
I also called Hackensack Medical center to get their assessment and they concorded with the findings. A report issued by Hackensack New Jersey will follow to confirm these findings in writing. I was pleasantly surprised and full of hopes again. I was told the worsening of symptoms Josephine has been experiencing could be related to the tumor dying.
Not to say we have won this war, but winning small battles give us new energy to continue the fight and renew our most needed hopes.
Josephine had her treatment today at Alfa medical center in Monterrey, of course with the same doctors. I chose to try this hospital to save hospital costs. The place is humble but clean, the procedure and the doctors don’t change. Food was good, we are happy, life is good.
She will have a second chemo treatment thru the Omaya catheter on Saturday and we’ll head back home Sunday.
Thanks for the support and prayers. They seem to be working. God bless you all.
The hospital sign in Monterrey.
Recuperating after IA chemo 11/27/18
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Update 28
Posted by Patricia Palman
1 month ago
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11/23/18: Hope everyone had a good thanksgiving day in company of your love ones. Very grateful here for having all my kids next to me. Josephine was looking forward to this thanksgiving, we had a full table but unfortunately she was unable to enjoy the food....swallowing problems are getting worst and a strict soft diet needs to be followed. Persistence coughing and lots of phlegm are causing fever, throat irritation and hoarseness.... Amoxicillin seems to help for short periods of time then we fall under the same cycle again...we had been told that a nasogastric feeding tube might be needed at this point to avoid complications related to aspiration of food or drinks , however that wouldn’t help her choking on her own phlegm which is a major problem right now....
Josephine is having an MRI Monday and treatment in Monterrey Tuesday. If these symptoms do not improve, re radiation in the pons will be considered...very soon.
We are very grateful for your continued support and prayers. Please share Josephine’s journey. Any sized donation is appreciated as our medical expenses are very high....Thanks again for accompanying us in the darkest path of our lives. May the light shine upon you always.
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$22,050 of $150,000 goal

Raised by 191 people in 9 months
Created April 21, 2018
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