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John’s Journey with MDS
Feb 23, 2018 Latest post:
Jul 22, 2018
"Mr. Buckley, it is cancer.". The words no one ever wants to hear.
I was referred to an oncologist in July 2017 after a routine blood test revealed my hemoglobin level was dangerously low. After months of tests, I was diagnosed with Refractory Anemia, a type of Myelodysplastic Syndrome (MDS) in November 2017. In short, this is a rare form of blood cancer that is affecting my red blood cells which deliver oxygen throughout the body. These cells are damaged or immature and do not work properly. The only "cure" is a bone marrow transplant.
Since July, I have had weekly appointments with the oncologist to monitor my blood cell and hemoglobin levels. Due to my hemoglobin levels being so low, I have been receiving blood transfusions every 7-14 days. To date, I have had about 38 units of red blood, which in turn has drastically increased the iron level in my body. I am now on a chelation medication to remove the excess iron.
I have had 3 bone marrow biopsies and will be treated at MUSC in Charleston in the near future. My team of doctors are actively searching for a bone marrow donor. My treatment will include chemo and the transplant and will require me to relocate to Charleston for a minimum of 4-6 months. I will be out of work and will be required to have a caregiver stay with me at all times. Angela will be my main caregiver. She, too, will be unable to work during this time.
As with any major medical diagnosis, the financial burden is substantial. Co-pays for weekly doctor visits, medications, required dental work, medical bills, etc combined with the overall cost of living quickly adds up. My friends have organized a benefit in my honor to help raise funds for the medical expenses.
The generous donations we have received and outpouring of love, support, and prayers from everyone is appreciated beyond measure!