Help me beat MDS!

In June of 2013, as with each year before, I had my well-visit with our family doctor. For the most part, it was routine:however, he was concerned that routine blood tests showed that some of my "levels" were low. We decided to check again in a month. Unfortunately, a review of the follow-up tests showed that levels had not only not improved, but gotten worse. While he was not overly concerned, I was referred to a hematologist to be on the safe side. I was monitored for several weeks, having had numerous blood tests and bone marrow biopsies with no clear answers. With my numbers continuing to go down to dangerous levels, and after ruling out everything else, in October my devil was finally given a name: Myelodysplastic Syndrome (or MDS). MDS is a type of blood cancer similar to Leukemia. In fact, until very recently, it was also referred to as Pre-Leukemia as it can easily progress if left untreated.

This was a crushing blow and so many thoughts danced in my head. I was 33 years old. I have two young daughters and a loving husband. I do my best to stay healthy. How could this possibly happen?

The good news was that my proposed course of treatment - an allogeneic stem cell transplant - was aimed at curing me of the disease, not just remission. The bad news was it would not be easy:nor would it be safe (the procedure has a 20% mortality rate). I was told it would entail several months of very mild chemo to get me healthy enough going into the procedure. The week prior to the transplant, they would need to wipe out my existing bone marrow with a combination of high-dose chemo and radiation therapy. I would also need to live at or near the hospital for three to six months due to, essentially, not having an immune system, the associated cocktail of prescriptions and the high instance of complications following this type of transplant (mainly in the form of Graft versus host disease or GVHD). Based on several recommendations (and the fact that it is the closest to where we live), the procedure will be done at Duke.

As one would expect, medical bills have added up; by the time most of you read this, we will have completely used up our savings. As I will be unable to work, income will be reduced significantly. Adding insult to injury, insurance has now decided that they will not be covering our lodging expense which could exceed $22,000 alone. Further, we have been told to expect that insurance will continue to do their best to deny claims and to prepare for significant expense along the way as total cost can range between $150,000 and $250,000. We have done our best to handle the financial burden ourselves and never even thought of holding our hands out to anyone, but find that we are now in a situation where we need to put our pride aside.

We certainly don't expect anything from anyone "“ we appreciate people just taking the time to read about my plight. However, should anyone find themselves in a situation where they are able to contribute, it would mean the world to us. If you could also please pass this along to anyone you may know, it would be greatly appreciated. Thank you all from the bottom of my heart.
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Organizer

Jeannine Lockwood Pampalone 
Organizer
Greer, SC
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