Last October, at my brother-in-law's request, I
diaried about his diagnosis of Burkitt's lymphoma, and the state of critical health care in the United States. Many of you have been following his progress through short updates I've given in pastordan's Sunday night diaries. The thoughts and prayers of this community have been very helpful in sustaining us, particularly me.
When I last reported, it was good news. He had completed chemo, and while it was very rough and left him quite weak, every sign pointed to it having worked. Unfortunately, we found out last week that it didn't. The cancer has returned and we're left with really only one option. And this is where this community might just come in to the picture again.
The remaining hope for cure of this disease is
stem cell transplant. His brother will be a donor, if he's a match. But suprisingly, a sibling has only a one in four chance of being a match. So it's likely that we'll have to go into the
National Marrow Donor Program registry.
The NMDP is the hub of a global network of facilities providing bone marrow and stem cell transplantation. They facilitate around 200 transplantations a month, and have coordinated more than 20,000 transplants. Here's some interesting information about the need for transplant donors.
Each year more than 35,000 children and adults in the United States are diagnosed with diseases for which a marrow or blood cell transplant could be a cure.
A transplant requires matching tissue types between patient and donor. These tissue types are inherited, but 70% of patients do not have a matched donor in their family.
The majority of donors in the registry are caucasians of European descent, which is good in our particular case, but there are many patients in great need of marrow or blood cell transplant who aren't white. The registry is really lacking in donors who identify themselves as American Indian or Alaska Native, Asian, Black or African American, Hispanic or Latino, Native Hawaiian or other Pacific Islander, or multiple-race.
The NMDP is having a special drive in honor of Mother's Day this weekend. Registering is pretty simple--you give some tissue cells--generally a cheek swab--to be typed. Because this is America and we don't have universal health coverage, there is a fee associated with registering. It's $52, and covers the kit for tissue typing, and the process itself. This fee is tax deductible.
If you qualify--you must be between the ages of 18-60 and be healthy--you are added to the registry. About one in ten people on the registry end up actually becoming a donor. So you would have roughly a ten percent chance of saving someone's life.
Stem cell or bone marrow transplant is generally a last-resort effort. It is in our case, and we have no guarantee that it will work, I'm sorry to say. But for all of the families out there who are going through what my family has experienced, I hope you will consider participating in this Mother's Day drive.
Update [2006-5-10 16:59:15 by mcjoan]: Thanks, Little for making the extra effort! From the comments:
UPDATE: Good info from phone call
I just called the Donor Marrow program and got some great information.
• You don't need to be near a center! Go to the Web site, sign up, they'll send you a kit. You can swab yourself.
• They have almost 5,000,000 people in their database...and only 20,000 have matched up so far. These are not simple matches that are being looked for, but near exact DNA matches. That's why more and more donors are so necessary.
I'm doing it tonight! Way to go, McJoan, and best to you and yours.
Also, if you do end up matching, the patient's insurance will usually pay expenses.
Update II: Here's the list of Donor Recruitment drives (pdf) around the country. Here in Portland, the Red Cross is covering the costs of getting on the registry. That's probably the case with many locations, so if the fee is the only thing holding you back from registering, please call your closest location to find out if they can offset the cost.