Prayers for Pam

On Sept 11, 2021 my family's lives forever changed.

What began as my mother noticing that her fingers were mistyping words on the keyboard rapidly progressed to losing fine motor skills and mobility on her left side within weeks. Overwhelmed with anxiety and fear, I convinced her to go to the local ED as her presenting symptoms would indicate a need for an MRI and her MRI wasn't scheduled until October.

Scared and alone in the ED due to COVID restrictions, she was informed that she had a brain tumor the size of a baseball. Never once did she experience a headache, but now all those random falls that she had been experiencing made more sense. My mother, Pamela (Frisbee) Sharpe, underwent a craniotomy on 9/16/2021, and on my father's 57th birthday, 9/19/2021, our worst fear was confirmed that the mass was a malignant and aggressive form of brain cancer. Weeks later, pathology confirmed that it was Glioblastoma. Glioblastoma is a primary brain cancer that is treatable, not curable. My mother's type is called: MGMT unmethylated, wild-type IDH1. What does this mean? It means that it traditionally does not respond to standard of care, otherwise known as chemotherapy and radiation - which hers did not. On 12/31/2021, she had her first MRI, which showed what we know to be regrowth. Since then, her bimonthly MRIs continue to demonstrate progression of tumor regrowths, as in reoccurring and new tumors.

My mom, a dedicated healthcare worker since her teens, was recently terminated from her job due to being out on disability for over one year; therefore, her insurance has also been terminated effective 8/25/2022. Even more unfortunate, my parents had recently reached their annual deductible. We have sought out every avenue for insurance assistance and have been met with barriers. As a social worker, I know I have to operate within a broken healthcare system to help my patients to obtain the care they need. In my mother's case, having insurance is essential to her being able to afford to continue to fight for her life and have access to alternative treatments and clinical trials since chemotherapy and radiation have not worked. Her oncologist informed her on 8/31/2022 that the infusions she has been receiving do not appear to be working and she has maxed out the treatment options in NYS. Our next step is to seek trials out of NYS, which will require travel fees and out-of-pocket expenses. Furthermore, on 8/30/2022 my mom suffered her first seizure since this diagnosis. We went to the ED and she suffered another focal seizure. On 8/31/2022 , I was eating breakfast with my mom and she had another seizure at which time I had to administer emergency nasal spray. We have been informed that this is another symptom of progression.

On behalf of my family, I am asking for help as we navigate this insidious and aggressive disease. Despite the hardships my mom has endured throughout her life, she has never allowed them to make her cold or bitter. This is a fight that she cannot do alone and her insurance ending has been another heartwrenching and angry experience we have had to face since her initial diagnosis. It is not fair that a veteran healthcare worker should be subject to choosing between life and death due to insurance. We know that the system is not fair, so I ask that if you are willing and able, to please consider helping my family. Every bit helps and is appreciated. I would never wish this on anyone and bless those that are able to donate. Even if you cannot donate, we ask that you pray for Pam. If you have any resources or suggestions, please reach out to me directly. Thank you.

Best,

The Sharpe (Frisbee) family

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