Marc's brain cancer fight

At 17, Marcella/Marc/Ella was diagnosed with a rare childhood brain cancer called Diffuse Leptomeningeal Glioneuronal Tumor (DLGNT). Ella’s cancer is different or “novel” as it does not resemble the same genetics/DNA as typical DLGNT (already very rare) patients. The extra brain cells are cancerous and surround the brain and spinal cord. Statistically, this diagnosis is found 15 times a year in the United States.

While their prognosis is uncertain, frequent advances in science and medicine provide new opportunities to learn and treat their condition.

First undergoing 14 months of carboplatin chemo in 2020, Ella took on a month of daily proton-beam radiation in 2021, and then intrathecal radio-immunotherapy (RIT), all with mixed results. Ella became the first patient in the world to receive an experimental antibody targeting cancer cells in the brain (RIT).

Thus far, therapies have induced nausea, seizures, extreme weight loss, and fatigue. Going forward, treatment will progress with Ella’s consent and their active involvement in conversations with their doctors regarding therapy planning and symptom management.

Thankfully, insurance pays for massive medical bills but does not cover their parents' growing expenses, taking time away from work to care for them. The largest expenses are co-pays, deductibles and out-of-network treatment, home care aides, non-covered treatments including acupuncture, vision care and psychiatry, transportation/tolls/parking and accommodations depending on the needed treatments. Expenses started in January 2020 and continue to accrue.

Fun-loving, intelligent, and witty, Marcella/Marc/Ella/Moose/Mars Borgenicht goes by many names. Just turning 20 this April, they’re an Earth-loving vegetarian, avid martial artist before diagnosis and a certified EMT. They won’t just save the world; they’ll kick ass doing so.

When not in the hospital, they make jewelry from recycled materials, spin fire poi, forage for wild mushrooms, study Chinese and Hebrew and loves Shelly the dog more than anything. Marcella chants flawlessly from the Torah and desperately wants to do what any average 20-year-old does by going away to college at the University of British Columbia to study forestry.

Ella wants everyone to know that they didn’t feel comfortable asking for support at first but now sees the value in connecting to family, friends and others on a broader scale. The opportunity to share milestones more publicly is an incentive. For more details, you can log onto the Caring Bridges blog https://www.caringbridge.org/public/blogblog Patience is appreciated as the blog is under construction.

Note: in compliance with the full disclosure guidelines set forth by GoFundMe, I am Marc's father Jonathan (Marc's middle name is my last name). The narrative and words in the story above were dictated by Marc alone (minus a few grammatical changes). We live in West Orange/Glen Ridge New Jersey. These funds will help pay for the deductibles, out-of-pocket expenses such as copays; travel (gas/tolls/parking) to multiple hospitals (e.g. The Proton Radiation Center in Harlem; NYU Epilepsy monitoring unit; Mem Sloan Kettering Cancer Center; Morristown Memorial's Valerie Cancer Center); out of network or uncovered doctor's appointments (e.g. natural medicine pain management, acupuncture, chiropractic); meals when traveling far to appointments or staying overnite in hospitals and Emergency Rooms and ICU's. Second opinions and consultations out of network (Philadelphia, Boston); Copays for medications; non-covered and over-the-counter medications; Neuro-optometry and special glasses ($500 glasses). Medical Cannabis; massage; Home Health Aides so Marc's parents can sleep thru the nite without potentially missing a seizure or other medical events. Neuro(bio)feedback, physical therapy co-pays; orthotics/supports/bracing; copays for IV nutrition. Other transportation such as Lyft/Uber. Upcoming extra travel costs to escort/accompany Marc to school in September. And finally, to make a dent in lost wages over the last 3 years (many multiple hospital stays, ER visits, doctors' appt in the year leading up to diagnosis) to Marc's parents' earning potential. Funds will support Marc's parents OWN mental health needs (mostly not covered by insurance); funds will also support Marc's brother who has been robbed of years of attention diverted, understandably, to Marc. Modest celebrations of life and living along the way--amounting to recreational therapy outings to entertainment. You are free to contact Marc or Marc's mother to confirm that funds are being shared in accordance with the proportional amount of expenses and lost income incurred. Finally, we are pursuing experimental cancer treatments in Seattle and will need to travel there soon for screening, evaluation and hopefully treatment. We will try to offset travel, lodging expenses by applying to cancer support organizations.

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