Support Ed's Battle Against Acute Myeloid Leukemia
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Let me begin by admitting it's difficult, humbling, and even embarrassing asking for help. But the truth is, it's our last hope.
In September, Ed had routine labs done, and his doctor called him, alarmed at what his results were. She had him get the labs done again and then she had his blood sent to a different lab. The results kept getting worse. An appointment was made with an oncologist, but Ed would have to wait two weeks because we both got COVID. The two-week wait was agonizing.
Prior to the bad labs, Ed had no symptoms of any health problems, except maybe being a little more tired, but who isn't these days?
When he got in to see the oncologist, a bone marrow biopsy was scheduled for the following week. More waiting.
The biopsy was painful and scary. And again, he had to wait two weeks for the results.
When the biopsy report came in Ed was diagnosed with aggressive MDS. Myelodysplastic syndromes are conditions caused when the cells that make blood in the bone marrow stop working normally, causing your body to produce more abnormal or faulty blood cells and not enough healthy ones. It can cause symptoms like tiredness, paleness, bruising easily, uncontrolled bleeding and shortness of breath. It is classified as a cancer, and it can become acute myeloid leukemia. It is a rare disease with only 20,000 or less cases being diagnosed in the US yearly.
In Ed's case, his WBC, RBC, and platelets are affected and are very low, which leave him very fatigued, weak, and short of breath upon exertion. His red blood cells are not carrying enough oxygen into his brain, muscles, organs. His immune system is severely compromised.
He's getting weekly injections of a drug to stimulate the bone marrow to make more red blood cells. He’s already received one blood transfusion. His oncologist referred him to the Moffitt Cancer Center in Tampa, which 4 hours away from us, for a second opinion on the course of treatment as Moffitt is world renowned for their cutting-edge research and treatment. The doctor at Moffitt is an MDS expert. He has confirmed that Ed’s case is complicated because of gene mutations, which make it the worst case scenario. He prescribed a course of treatment, which the doctor hopes will put the MDS in remission. However he warned remission does not last very long when the gene mutations Ed has are present, typically 6 months. If/when that happens there is plan B with another similar but different medication. When treatment fails there are clinical trials to consider. But managing this disease is extremely difficult. The worst case prognosis for this disease is 14 months.
Ed will need to continue to have weekly appointments with the oncologist and labs drawn to monitor his levels. He will most likely be getting more frequent blood transfusions and he will have to return to Moffitt to be monitored. The cost for his treatment is $2000 this month for 5 pills.
How did we get here?
As some of you know, I was a full-time caregiver for my mom from 2005-2016. During that period, I was unable to work because my mom needed constant care, as she had several serious health issues. Living far from family, with no support, we did it all by ourselves. During the last three years of her life, my mom was in a wheelchair, paralyzed by a debilitating stroke, and needed constant hands-on care. My mom's sister also lived with us from 2010-2016, and though very self-sufficient, the last year of her life she required 24/7 hands-on care as well. Ed and I provided all of that care along with the help of very necessary professional caregivers, for which we sacrificed (financially) greatly. I could not leave the house for 3 years without having one or two caregivers there. It was truly a labor of love. During that period I made no contributions to social security, or to any retirement savings. We always thought there was time to catch up. During this period we were paying for our own health insurance coverage, which conservatively over that 10 year period cost us in the area of $100,000 because I was not eligible for private insurance due to preexisting conditions, so we had to buy group health insurance which was more expensive. It was impossible for us to put away retirement funds. We always thought there was time to make it all up, a recurring hope in our scenario.
My mom and aunt passed 6 weeks apart in 2016.
Six months later, Ed developed a severe case of Bell's Palsy, which effects lasted well over a year. His eye and ear were significantly damaged, and one complication after another kept appearing. He now has permanent neuropathy in his foot and leg, making walking challenging at times. It was hellacious experience we survived, and I became his caregiver until he recovered.
At that time I just turned 60, had not held a job for many years and was undesirable in the job market. When Ed was recovering from the palsy I had started a little dog walking & pet sitting business and private caregiving and was doing well and hoped to be able make up for some of our financial losses of the previous years. I enjoyed a great reputation in our community and had a decent business going.
Then Covid hit, and my business came to a standstill, as did Ed's. He has been in the transportation and personal security business since the '90s.
Both of us with no work and the ensuing pandemic-related inflation basically wiped out the gains we had been able to make.
So Ed continued to work into his mid 70’s doing what he’d done since the 90’s transportation and personal security. I continue working as a private caregiver/companion and also still do pet sitting.
As long as we both worked, we were able to make it work. Until two months and a half ago when our world was literally turned upside down. A serious medical illness is the number one cause of financial distress in the US. And now we find ourselves in that very position today.
Ed has been unable to work for the last 2.5 months, and as his health worsens, he may not be able to return to work. I can no longer work as regularly as I had been and I've missed so much time staying home to care for him, take him to appointments, and treatments. The mental, emotional and physical effects of worrying about his health and our financial health is now taking a toll on my own physical and mental health, as well as severely impacting his.
The cost of fighting cancer is expensive. I want Ed to have the best chance at surviving this without the stress of worrying about finances so that he can focus on keeping himself strong enough to fight this disease every day. Every treatment he is now getting causes side effects, with some being potentially serious. Our life has always been challenging and a struggle. Nothing ever came easy for us. But we always put our shoulders to the wind and pushed through all the adversities life brought our way. Now we are in a dire situation. Without help we cannot keep a roof over our head, pay our utility bills or pay for our health insurance.
MDS is incurable, but we pray that Ed’s goes into remission.
If you can find it in your heart to help us at this devastating time in our lives, we would be eternally grateful for that kindness.
God bless you and thank you for taking the time to read our story.
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