My 73-yr old brother, Larry, is a father of 3, grandfather of 7, and has been married to his childhood sweetheart, Karen, for over 55 years. We grew up in Jenkin Jones, West Virginia where he worked for US Steel in the machine shop for the coal mines. He was later a shop manager for Yellow Truck Lines in Miami. He retired to Ocala, Florida a few years ago.
Larry was diagnosed 2 years ago with Myelodysplastic Syndrome (MDS), a rare disease that is also called Pre-Leukemia. MDS is basically a failure of the bone marrow to successfully create blood cells. I'm not a doctor, so it's difficult to describe, but this link to Wikipedia may help https://en.wikipedia.org/wiki/Myelodysplastic_syndrome . Our younger brother, Gary, was diagnosed with something similar shortly before he passed away in 2013.
As you can imagine, Larry has been poked and prodded by all sorts of medical professionals. He's been through 2 bone marrow tests that involve actually drilling into his hip. The second time, doctors used a hand-held drill; he said it was extremely painful and took quite some time to heal. They will drill his hip for a third time on January 10. Needless to say, he's not looking forward to it.
He has gone through a number of blood transfusions, which temporarily give him relief from fatigue, tiredness, shortness of breath, and being very susceptible to infections and colds. After chemotherapy stopped working, he was referred to a study at Moffitt Cancer Center in Tampa, Florida. He starts there on January 10, 2019.
The official study is a Phase 1 Study to Evaluate the Safety and Tolerability of the Treatment as Monotherapy or in Combination with Tremelimumab with or without Azacitidine in Subjects with Myelodysplastic Syndrome after Treatment with Hypomethylating Agents. I realize that this is a mouthful, but I'm not sure how else to describe the treatment.
At this point, this study seems to be the last ditch effort to help him. It is an amazing opportunity that Larry and our family appreciates more than you can imagine. We are so thankful for all of the calls, visits, and messages of encouragement he has received. This study gives him much-needed hope.
Unfortunately, Larry doesn't have very good insurance. While we know that his doctors in Ocala have been doing what they can, there's always the thought that if he had better coverage, he might have had more options over the last 2 years.
The ups and downs have been tough for him. He's had all sorts of expenses from the medical appointments, tests, transfusions, plus the back and forth to various doctors and countless hours hooked up to wires and tubes. Nevermind the fact that this has essentially become the center of his life, and the lives of his family.
While the study covers the cost of treatment, Larry will have expenses along the way. He won't be able to drive himself to/from treatments so a family member or friend will have to accompany him each time; transportation between Ocala and Moffitt, staying away from home in Tampa, plus meals, incidentals, etc... His daughter, Darlene, is coming down from Canada to take him to his first treatment, which starts January 10, the day after the creation of this campaign.
Of course, the last 2 years have taken a tremendous toll on their finances. If there was not a real need, we wouldn't be asking. Anyone who knows Larry knows that he is not the type to ask for help. That is why I have decided to create this GoFundMe account on his behalf.
All funds will go directly to him to help him cover expenses related to his disease and relieve some of the financial pressure he's been under for so long. Perhaps this will ease the burden so he can focus on getting better.
Thank you from the bottom of our hearts for reading about my brother and for considering contributing toward his health and wellness.
With great appreciation,
- Stephen Li
- Barbara Walker
- Elizabeth Blakeman
- Rebecca Aloise