Friday, February 17, 2006

Honored and an Update

I have told you in the past that there have been many people who inspired me this past year since diagnosis. However, today I want to tell you about another connection that began before my diagnosis. A lady I work with, Jean, told us in 2004, about her cousin, Ed Schexnayder, who was battling Acute Lymphocytic Leukemia (ALL) and Non-Hodgkins Lymphoma. He was diagnosed in January 2004 and was only 29. I had just lost my Dad the previous November to Leukemia, so I was keenly interested. She forwarded emails that Ed wrote to family and friends as he fought his battle and the many ups and downs in his journey. He underwent some difficult chemo treatments in the Spring of 2004, and things were looking pretty good. His attitude was inspiring! It was discovered that his sister, Julie, was a match for a bone marrow transplant and that possibility was being explored. During all of this, he continued working on his MBA, receiving all A's and B's! (He was eventually awarded his MBA!) He was surrounded by loving family and I know that motivated and inspired him. As they moved into the fall, he was preparing for the transplant with lots more chemo and full body irradiation scheduled. His sister was a brave lady too, because the bone marrow donation is not pleasant as they have to drill many holes into the bone to get enough of the good stuff. In October, it looked like he was struck with Bell's Palsy- paralysis in his face. When they got to MD Anderson, in Houston, to begin the procedures leading up to the transplant, it was discovered the Leukemia had returned. It changed all the plans and delayed them to December. They had to knock the Leukemia back down and now could only do a stem cell transplant from Julie (an easier procedure for her, I believe). It turned out that the Bell's Palsy was because the disease had now gotten into his Central Nervous System. He was also plagued with soars in his mouth, throat, and all the way into his stomach. However, from the emails I read, he never lost hope. He was not a whiner! I was amazed at his bravery and his positive attitude. His family continued to rally around him.

Around Christmas, I think, he did have the transplant. It was successful and he was 100% donor cells. However, near the end of April, 2005, Ed lost his battle. His lungs were severely damaged from the total body irradiation and they could no longer support his body any longer. Basically he died of acute respiratory distress syndrome. He left behind a loving wife, Maydel, and twin children, Alan and Madelin, who were only two years and two months old! The one thing I want to point out is that he never, ever gave up. I pray for his wife and the kids. Ed died only a few weeks after my diagnosis, but I think God led me to his story before that to show me how someone can bravely and confidently face difficulties. I don't know why God allows these things to happen and it can be frustrating for us. We just to have confidence that He has a greater plan and we have to trust in His purpose. Ed's short life touched mine in a profound way.

Now, his oldest sister, Leah, is honoring Ed's memory and is participating in an upcoming half marathon for the Leukemia and Lymphoma Society's Team in Training. She is raising money for research for all blood cancers. As she said, she felt so helpless at the time Ed fought his 14 month battle, but now she wants to be able to do something to help others. In her own words from her fundraising site:

Although Ed lost his battle with ALL, there are so many others that are still fighting cancer and by participating in the TNT program I can actually DO something to help. More than 670,000 Americans have leukemia, Hodgkin or non-Hodgkin lymphoma or myeloma. Every five minutes, someone new is diagnosed with blood cancer. Every nine minutes, someone dies....

When Jean told us Leah was doing this, I went to her site and made a small donation and wrote to her and told her briefly how Ed had touched my life. I was amazed, honored and touched that she added me to the list of those she was running for. Her site is listed at:

Now a brief update on me. Today is the last day of the Prednisone part of this week's treatment, so perhaps I will be able to crash about noon tomorrow and get some sleep. I have not been nearly as hyper and wired as the last round and in fact, have felt a little draggy (such a word?) the last two days. I have come to work each day, but am only sleeping from between and hour and a half to three hours each night. But that is OK, because NO NAUSEA! Yea! The anti-nausea pills are working. Also, my hair stopped falling out again - ha! I know you were worried about that. If the doctor allows it on Monday, I will be heading out of town to conduct a training with a co-trainer. If not, my supervisor's have a back-up available.

I will post again if I have something significant to say :)


David Arenson said...


A poignant, touching story. There are so many brave people with leukemia and cancer whose valor in the fight is testament to the triumph of the human spirit even when disease devastates the body. Ed was one, and his story can inspire us all when the going gets tough.


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