We Found a Donor!!

Wonderful news to report: we found a donor for James. The donor is a 12/12 match, what they call in the health care industry a “perfect match”. The donor is somewhere in Europe, 41 years old and has donated before. All good news in our book. Maybe James can apply to be part of the European Union post-transplant! Hah!. Ex-pat status, here we come. ☺
As is expected we are in high spirits. It is amazing that there is some stranger out there that will be helping James in such a huge way. If you haven’t already, please do what you can to become a potential donor and get into the database. We cannot express how much joy and relief the donor has brought into our life.
The hospital is now finishing the last bit paperwork with our insurance company and getting all of James’ medical records from his hematologist. We should meet with the transplant specialist next week to develop a schedule for the transplant process. We will update the blog then so that everyone knows when James will be in the hospital.
Thank you everyone!

Join James in his Fight against MDS

James with Stacey and Robert, Christmas Day, 2007

James Shibley is a 38 year-old, caring husband to wife Stacey, and a stay-at-home-father to 10 month old, Robert. In addition to caring for Robert, James worked part-time to help make ends meet. In December, 2007, James was diagnosed with MDS (myelodysplastic syndrome) – a precursor to acute leukemia. The only way to survive the disease is a successful bone marrow transplant. James has begun chemotherapy sessions and had a blood transfusion to try and keep his blood counts as high as possible while a donor is being located. Once a donor is found, the transplant itself requires a 4 – 6 week hospital stay. In addition, the first 3 – 6 months that James is at home after the transplant he will require intensive care.
The expenses for treating James, not to mention the emotional toll on the family, are significant. James can no longer work or care for their little boy. The family has needed to hire a nanny, pay out-of-pocket medical costs, and make their monthly insurance payments through COBRA as James’ job was the provider of the family’s health insurance.
James and his family have moved in with extended family to help defray these costs and minimize the financial burdens. They are quickly realizing, however, that their monthly responsibilities are more than they can afford. The hospital recently informed James and Stacey that their insurance will not cover the full cost for James’ transplant and post-transplant care. The family needs to raise at least $50,000 to cover the first year’s costs that are not covered by his insurance company.
Through these last few months James and his family have begun to realize how large their community of support is and have been humbled and touched by the outpouring of love and generosity they have received. They want to thank everyone for their support and encouraging thoughts.
If you would like to help James in his fight against MDS, you can send donations to the following address:

James Shibley
Stacey Rutland
625 SW Alder St. #103
Portland, OR 97205

For your contributions to be tax-deductible, please fill out the attached PDF and send checks to:

National Transplant Assistance Fund (NTAF)
150 N. Radnor Chester Road, Suite F-120
Radnor, PA 19087

We will send monthly updates to let everyone know James’ health status and where we are in our fundraising campaign.

Thank you,
The Shibley Family

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.

Here's the First Post

Hi, I'm Bill McDonald, the co-host of Born to Slack, a cable access show in Portland, Oregon. The show is based on a suggestion by James Shibley and is just closing in on its 200th episode.
Unfortunately, James has come down with a serious health problem, but there is hope and we're going to fight for his survival.
More details will follow but this blog is to help do that so it is now up and running.

Oh yeah, the posts will just be signed by the show. Usually that's just the blogger's name but we're going to have more than one person posting.

If you'd like to leave a comment, feel free. I might read some on the show.

The calls I have with James are still full of laughs despite the gravity of his situation. We're also going to try and continue to have fun here. Why not?

That's it for now.