Stacey's Post

Many of you have asked for additional information about James’condition and how you can help. Below is a short explanation of his disease and treatment as well as resources you can use to find out more.

The Disease
James has been diagnosed with Myelodysplastic Syndrome (MDS) or Myelodysplasia, a blood disorder in which one or more of his bone marrow stem cells have mutated and no longer produce healthy, normal blood cells (red, white and platelets). James is in the higher risk level, phase of the disease. If untreated, it will develop into acute leukemia.

The Treatment
James is currently being treated with chemotherapy, specifically Vidaza, while looking for a bone marrow donor match. Vidaza is designed to stave off the disease’s progression into leukemia, a potential short term solution that has been effective for many patients. We are keeping our fingers crossed.

James has been feeling rather poorly, extremely tired and fatigued. His white blood counts have increased, but his red and platelet counts have begun to diminish, normal for this stage of the chemo. They are low enough that his doctor asked that he get a blood transfusion. This last Saturday James received 2 pints of blood. His counts are up and he is feeling better. He will begin his next round of chemo on Wednesday, Feb. 13th. It is normal for his counts to go down before they begin to go back up.

Meanwhile, we have begun the transplant process, which means looking for a donor. A transplant is the only cure for the disease, although it is not a guaranteed one. Because James is young and otherwise healthy, he is seen as having a high likelihood of success with the transplant.

Finding a Donor: Where We Are in the Process
We have currently found 6 potential matches for James, through both national and international bone marrow donor databases. A perfect match is 12/12 markers. There are two donors who, through preliminary testing, match 8/12 markers. Our doctors are currently doing further testing of these two donors to see if they are matches along the remaining 4 markers.

The other four potential donor matches were initially tested along 6 markers, and match all six. We will need to do further testing to find out if they match James on the remaining 6 markers.

Testing is quite expensive, and our insurance will not cover testing all six potential donors, so we are starting with the first two, hoping that one of them will be a match. If not, we will begin further testing of the other four potential donors next week. We will find out the results of at least one of the initial potential donors by Feb. 19th or 20th. We will keep you posted on the results.

Becoming a Donor
Many of you have expressed an interest in registering in the bone marrow program to be a donor. There are a couple of ways to go about this:
1. Go to the National Marrow Donor Program website and order a “home kit” with which you can take a swab of your cheek and send the sample in: http://www.marrow.org/HELP/Join_the_Donor_Registry/index.html
2. Contact your local Red Cross chapter to find out the nearest donation site.

There are a few things that we have found in our research and discussions with doctors about being a bone marrow donor that we want to share with you:
• The first is that the donation process is usually fairly simple and relatively painless. (For all of you Grey’s Anatomy watchers ☺: one of our doctors cursed the tv hospital dramas for making it appear that donation is a long and painful process.) For more information on the process go to: http://www.mayoclinic.com/health/bone-marrow/CA00047
• Although all donors are desired, non-Caucasian donors are especially needed. People from a racially mixed background even more so. James’ condition is practically a death sentence to most people of color. If you feel comfortable, please encourage any non-Caucasian people you know to become a donor.

Thanks for everyone’s support so far. We are feeling strong and positive. We know James’ can beat this.