During 2017, I was frequently going to doctors for what started out as sinus infections and reoccurring red eye irritation. I was told it was allergies- get a humidifier, HEPA filters for my apartment and get rid of my mattress. When those changes didn't improve my conditions i was referred to an ENT, allergist, ophthalmologist, even the dentist for my pain- in addition to my PCP. I was being prescribed eye drops, steroids, nasal sprays, anti-inflammatory drugs and antibiotics but nothing was working and my symptoms kept exaggerating. I spent over $2000 alone on various prescriptions last year.
During December I went to the ER & Urgent care multiple times due to difficulty breathing, uveitis, & congestion. My doctors suspected I had an undetected autoimmune disease related to HTLV-1, a blood condition I was diagnosed with in high school. It doesn't require medication or care, but was advised i was unable to donate blood and that people with this blood condition have a chance of developing Lymphoma later on in life. The probability was low so no one thought to look into HTLV as a factor of my health problems until my ENT discovered rapid deterioration of my septum that was not nasal spray related. He recommended a CT Scan, blood work and for me to see an oncologist, but with my symptoms increasing escalating he told me to go to the hospital and be admitted.
Unfortunately the CT scan showed a mass in my etimoid sinus during my ER stay and the biopsy came back that the mass was cancerous. This was Christmas 2017. My parents flew from Michigan to Florida to be by my side, only to be told I was in grave condition because the mass was an aggressive cancer and there was risk of it spreading to my brain. I had Adult TCell Lymphoma. By this time, I could not see without sunglasses and developed nerve damage in my face, Bells Palsy. The hospital suggested I relocate to Michigan and do my chemotherapy through University of Michigan Ann Arbor hospital, which had a well-known cancer center that specialized in lymphoma.
Upon research, it was discovered that Adult TCell Lymphoma is rare in the United states, the survivial rate is low and there is no defined treatment plan for it. It is common in people of Japanese and/or Caribbean descent. In the last 20 years, I was the 5th person to come to U of M hospital with this disease and out of the 5, only one has survived 5 years past diganosis, and it is believed to be due to bone marrow transplant. I am hoping to be the second patient to survive and achieve remission.
I am almost done with my chemotherapy but in order to ensure the cancer won't return I need a bone marrow transplant. This page is to secure funds for my post-transplant care, after the insurance and grants I am still responsible for some costs, which require me to relocate close to the hospital for three months to ensure monitoring and prevention of post-surgery fatalities. From the time I was diagnosed in December, I had to leave Florida, where I lived for 9 years, go on medical leave without pay from my job at Walt Disney World and rely on my parents for assistance while waiting for my disability to approve, which can take up to 6 months.
My health insurance costs $600/month, the cheapest housing (if available) for the transplant care starts at $1800/month. The rest of the funds are for food, medications, and assistance in getting to my doctors visits at the hospital. During the 3 months I am having family take turns as my caregivers, due to my highly weakened immune system limiting contact to the outside world while my body regenerates. 24 hour care is required during the 3 month hibernation to make sure if any reactions develop, my caregiver can immediately transport me to the hospital. Given my family members that volunteered to help as caregivers live in either Grand Rapids or Midland (both almost 2 hours away) it will require sacrifice from everyone's work, family and personal schedules to undergoing the training required by the bone marrow team to be certified, because home health care organizations are not allowed as caregivers.
If you want information on bone marrow transplants, bethematch.org has information on how the procedure and aftercare works.
Thank you for taking the time to read this; the support has been touching and I pray to be able to make enough money to cover the expenses not covered by insurance and grants. I will update my progress and fundraising efforts through this page as well!
- Charles Pickering
- Dave Martin
- Ryan Lynch
- Allison Wilden
- Babby Daddy
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