Saving Dad
First, thank you for taking the time to read our story.
It is very humbling and difficult to write something like this, but when your life depends on it you will find the strength, courage, and determination to do it.
One day I was fine. Life was good and all was it should be. Then in Early March or late February I started getting tired really easily almost to the point of exhaustion doing things I normally did without issue. I was cold all the time and didnt feel like myself. I used to smoke then, and thought it was the results of smoking. My body decided that my mind had to get over cigarettes. A week later the tiredness increased and I started to get some swelling in my feet and ankles.
My wife, as most wives do, “TOLD” me to go to the doctor. My daughter had her last dance competition the next weekend in Tennesee so she wanted to get me in before we left. I saw my family doctor the day before we had to leave and she did blood tests, an XRAY, and a breathing test. As it was extremely late by the time she had finished, we had scheduled a follow-up appointment for Monday at 8 AM.
I went to work as usual the next morning to get in a few hours before we left and about 10 until 7 my phone rings. I look to see who is calling and it was the Dr. office. I thought it was to confirm my Monday morning appointment.
To my shock when I answered the phone it was my doctor. She stated emphatically that I need to go to a hospital right away as my Hemoglobin was down to 5.0 (normal levels for a male are between 15.0 and 18.0). I called my wife to explain and we decided that I would come home, get her and drive to the hospital together. In a panic we had to make arrangements for our daughter to go to Tennessee without us.
During the next week, after being admitted into the hospital, I was immediately given 4 pints of blood. I was later transferred to an ICU Step down unit. Over the next 6 days I had every test performed on me that was humanly possible to see where I was losing blood. All the tests were negative for any type of internal bleeding.
Enter our Oncologist, Dr. Stillwell. She told us of the results from the internal tests and explained that they wanted to do a bone marrow test. This was to see if my blood system was doing what it is supposed to do.
The initial results came back negative for any type of cancer (there were still 2 test results to come back). What a relief. Being in that situation, trying to digest all the explanations that the doctors and nurses are telling you, wondering what is wrong. But to be told that it wasn’t cancer was huge but we were still concerned as to why I was not making enough blood.
I was released from the hospital on Thursday March 30th. I had a follow up appointment with Dr. Stillwell on April 7th.
We arrived at Lexington Oncology for our appointment and the first thing they did was take blood. A lot of that going on these days. At that time we found my hemoglobin levels had dropped again and I had to have an additional 4 pints of blood. At that time they did another bone marrow biopsy. The results of the second test determined that I have a rare blood/ bone marrow cancer called Myelodysplastic syndrome.
In short, Myelodysplastic syndrome(MDS), is a type of cancer in which the bone marrow does not make enough healthy blood cells and there are abnormal (blast) cells in the blood and/or bone marrow. In a healthy person, the bone marrow makes blood stem cells (immature cells) that become mature blood cells over time. It also indicated that because I was not proucing enough red blood cells, white blood cells and platelets that I was in a high risk category for it developing into luekemia within a short period of time.
When we got in the car after our appointment we sat in the car not knowing what to say. How in the world are we going to tell our 15-year-old daughter that “Daddy has cancer”? Even though the doctor went through what we needed to do next and the other things that would have to take place, we couldn’t seem to understand or comprehend.
I started on my initial treatment of Vidaza on May 8th. Vidaza is a light “Chemotherapy” in which I get 4 shots every day for 5 consecutive days and then repeat the process every 28 days. Next treatment is on June 5th. The shots aren’t that bad but the side effects are uncomfortable.
We went to the MUSC (Medical University of South Carolina) on Thursday May 19th. We spent the whole day getting a PFT (Pulmonary Function Test), an Echocardiogram and many tubes and vials of blood. I believe the number was 28. If I didn’t have enough blood to begin with why did they have to take so much? After the testing, we met with Amanda, who is a bone marrow transplant coordinator and with Dr. Valeriy Sedov. We also met with a Social Service worker.
We were told that I must have a bone marrow transplant sooner rather than later. We were told that I was in the “High” risk category of MDS turning into Leukemia. The good news that they were able to share with us is that if the transplant is successful, then I have a 35% to 50% chance to be completely cured. Without it I have a 0%. Needless to say, we have chosen option 1.
We were informed all about the procedure, the risks, what to expect, chances of recovery and a ton of other information that we are still trying to digest .…
After all the health issues and procedures were discussed, they then informed us on what had to happen to our life.
We would have to live near MUSC (the closer the better) for a period of about 4 months. I would have to have a caretaker 24/7. We also had to have multiple caretakers as Robin, my wife, would not be able to do that 24/7, no one could. We will potentially have to hire an RN, who has experience with bone marrow transplants at the risks etc… Unfortunately, none of the living or care expenses would be covered by insurance. There are portions and time that some of it may be covered but we were told not to count on it. All of this doen't include the costs associated with the donor, which we would be responsible for. More than likely I will be out of work for a year or more.
So that brings us here to why you are reading this and why we are asking for a little help from a lot of people. We were told to expect expenses to be in the 200k to 250k price range or more. We just don’t know how much we will actually need nor do we know how we are going to be able to cover those expenses.
Our family needs your help. If everyone would donate $1, one dollar, then have the kindness to pass this along to 2 others and they would find it within their heart to help then you all would have assisted in a large part of saving my family and my life.
Next, please call, text, and hug those in your life and tell them how you honestly feel about them and let them know what they mean to you. I know it sounds so cliché, however put the situation in which you are about to read, into your life and attempt to understand how our family is feeling.
If we can get enough $1 donations to get us through this, then any money left over will be given to another person/family that need it.
We can’t thank you enough, from the bottom of our hearts, for helping us in our time of dire need.
Just $1. Please, donate just $1 to help save my life.
