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the prognosis was not good.
After the initial shock, we asked what our options were. The Dr. explained the short list of things we could do, and we decided to take the risk of Ara-C and Daunarubicin Chemotherapy. It would require an approximate 28 day stay in the hospital in isolation.
We welcomed our first Grandchild on Saturday, May 6, and left on Monday to begin treatment. What an emotional roller-coaster the week had been. When Mike was diagnosed with MDS, I did extensive research to locate one of the best Doctors in the country that treated it. He was located 260 miles from our home which required an overnight stay every time he had an appointment. His Chemotherapy was done at an adjoining University, which meant we would be away for approximately a month.

Mike did well with his Chemotherapy and was able to return home within 28 days. He was still very Neutropenic, which meant that his White Blood Cell counts were very low and that any infection or sickness could be easily gotten. Therefore, we began our long journey of "isolation." That meant that he could not go to stores, movies, restaurants or even church. We could not even see our family or friends due to such a high risk of infection. It was just he and I and the confines of our home and car.
It took a good 6weeks for Mike to regain strength. By the 8th week, he went back to the hospital for a Consolidation Chemotherapy that lasted approximately a week. Again, we were dealing with Neutropenia. More isolation.
Within 3 days of our return home, Mike was rushed to a local hospital with a fever of 104.7. He had become "Septic" from the bowels in his own body. It was touch and go, but Mike was able to survive. Thank you God again.
Today, 19 months later, Mike has gone full circle in MDS. He had beaten it all for about 6 months, and now the MDS is back. He is undergoing a new type of Chemotherapy that requires us to go the Dr., everyday for two weeks out of the month.
People all over the country and around the world are experiencing devastating effects from this disease of "isolation." When their White Blood Counts are low, a simple cold can kill them. When their Red Blood Cells are low, it produces low Hemoglobin, which takes away all their strength. When their Platelets are low, they can hemorrhage at any time. Many patients can only survive on blood or platelet transfusions on a regular basis. This lends them to yet another serious risk, iron over-load.
I have not told our story to you for sympathy, but to let you know about this dreadful disease. It is quickly on the rise, and there needs to be an all out effort put forth to fund research and development into medications and treatments to address it.
You can join the fight by going to www.fightmds.com to learn more about this disease and to send a support letter to Congress. Please consider the difference you can make in thousands of lives now and perhaps the life of someone you care about in the future.
Mike and I continue our life of isolation, and as a team are fighting for his life. We will be celebrating 40 years of marriage on May 12, 2007. You may think you know all there is to know about someone after that many years of marriage, but you don't. I never realized what strength and courage Mike had, until this battle. He will forever be my, our children's, and our grandchild's real life hero.

Learn more about this author, Sandra Barbor.
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