Aug 17, 2018 Latest post:
Nov 15, 2018
Welcome to our CaringBridge website. We are using it to keep family and friends updated in one place. We appreciate your support and words of hope and encouragement. Thank you for visiting.
As you know, Ed battled and survived esophageal cancer 3 years ago. He was diagnosed in Dec 2014 and declared cancer-free by mid 2015. Given his overall good health, the doctors were very aggressive with his treatment and it worked to cure that cancer. However, early May this year we found out that the chemo he received in 2015 not only got rid of the cancer, but also damaged his body's ability to produce good bone marrow and blood cells. He was diagnosed with myelodysplastic syndrome (MDS), which if left untreated, would lead to leukemia. It is a cancer, but it is pre-leukemic. His doctors jumped on this right away and began chemotherapy. Chemotherapy cannot cure MDS, but it gets the body ready for the next treatment, which is a bone marrow transplant, aka blood stem cell transplant. He finished 3 rounds of chemo as of mid-July.
We found out this week that the chemo did its job and he is ready for the transplant, assuming all of his preparatory tests come back OK.
The transplant is a very lengthy process, requiring up to a year for recovery. He'll be admitted into the hospital (in Grand Rapids), receive another round of intensive chemo and approximately on day 8 he will receive the stem cells from his donor. His donor is an anonymous, 21 year old male who has agreed to donate his stem cells. We won't know his identify for at least a couple years and that is only if he wants to be known. More about that later.
After the transplant, he'll have to be in the hospital for 3-6 weeks in isolated care, depending on his risks and recovery status. In order to do the transplant and allow his body to receive these foreign cells, they bring his immune system down to a minimum, so he'll be at risk for developing infections. That is the primary reason for the length of treatment and recovery. The actual transplant is very similar to receiving a blood transfusion - it is just sent in via an IV. Post discharge, he has to be close to the hospital for another 2 weeks, which means he and a 24-hour caregiver has to live in Grand Rapids for that period of time. Once he completes those weeks, he comes home to another 6-week 24-hour caregiver requirement. He will be living with Tim and Marie for that time period. He will still be at risk for infection and has to be monitored constantly. Marie will be disinfecting her home and anyone that walks through the door! He can't be around animals or anyone with an illness until cleared by his doctors. Tim, Marie, Kate, Jim, Scott and I have all gone through education on this process and the risks involved.
If all goes as planned (as documented above), he will be cured of this disease. Without this transplant, he would be dependent on chemo and blood transfusions for the remainder of his life.
We will post entries to this site going forward to keep everyone up to date on his progress. There is lots of info on the internet about these types of transplants, so I won't attempt to educate you here. But, if you have specific questions, please ask. We are learning as we go as well.