Lots of Good News

First- Susannah has gone through another round of biopsies, and the doctors have found the best possible results, which is to say that the leukemia does not seem to be very far advanced. This means, in effect, that starting the transplant process is not as immediately urgent as it could have been, so Susannah should be able to continue teaching for the full semester. This is nice for our sense of sanity, and also fairly essential for our insurance.

Second- We have a donor match! Two, actually. Which is great news. We still hope that people will consider register to become a bone marrow donor, and we are going to continue doing outreach work in that regard. It has been very gratifying to hear back from the number of who have registered in the last couple of weeks.

Obviously there is a very long road ahead, but as of today, things look reasonably serene.

Stem Cells 101

Cheryl has just sent me a link to an animated introduction to stem cell research. It's fun for kids and helps non-medically-versed adults to make sense of this subject, too.

We are at Mt. Holyoke

Dear friends-

We are deeply blessed to have more friends than we can easily stay in communication with at the moment. Hence this blog. We have moved to South Hadley, Massachusetts, where Susannah is teaching. This also puts us considerably nearer to Dana Farber Cancer Institute. Susannah is in the midst of a battery of tests intended to determine how far the her illness has already progressed. The outcome of those tests will effect when she needs to begin treatment....ideally not in the middle of the semester, but we don't know. While it is difficult to think clearly with so much uncertainty, we are happy here, the Mt. Holyoke community already seems incredibly supportive, and we feel like we are on the right path.

-Ethan

Registering to Donate Bone Marrow

The short version:

* If you're between 18 and 60, you can register to donate bone marrow.
* You do it at http://www.marrow.org/, and it's very easy.
* It's just a registry, they don't take your bone marrow right away (and might never take it).
* It's especially important to get people who aren't white in the registry.
* If you're pregnant, you can donate umbilical cord blood during the birth, at some hospitals.

The long version:

Bone marrow donation requires a much more precise genetic match than blood donation. To help facilitate this, the National Marrow Donor Registry compiles a database of genetic markers from potential donors, and then contacts those people if a patient who matches their genetic makeup needs marrow. Currently the registry has about 13 million people, but most of these are people of Northern European ancestry. This means that while a white person has about a 70-80% chance of finding a good bone marrow match (still far from a sure thing!), people of color have much, much worse odds.

Joining the registry does not mean that you will be donating bone marrow at once. In fact, most people on the registry are never asked to donate bone marrow, while a few people may be asked to donate bone marrow more than once. (Being on the registry does not oblige you to donate marrow if asked, and if you are, for instance, pregnant, you might not even be able to donate if asked.)

The registry is open to people ages 18 to 60. If you go to www.marrow.org, there is an on-line sign-up procedure which feels a little like signing up for any other web service. This process takes about ten minutes. There are certain restrictions on whom can donate, which they list. They will then mail you a cheek swab kit (basically Q-tips) which you mail back in, and they will add you to the registry.

The web site implies that there is a fee to sign up, but that you are simultaneously credited with a promotional coupon. This seems to be a (rather confusing) gambit to encourage you to make a financial contribution along with signing up. But if you can't or don't want to do that, becoming registered is free and is much more important.

Should you, at some point, be contacted by the registry to donate bone marrow for someone, the new procedure is generally much easier and more comfortable than the old method of bone biopsies. It is a course of injections followed by a prolonged (4-6 hour) blood draw where they take out some of your blood, find the cells they want, and put the rest of your blood back.

Another form of donation, potentially even more useful, is umbilical cord blood, which can be donated just after a baby is born. The stem cells in umbilical cord blood are especially valuable because they have not yet “learned” a body, and can save someone's life even when they are not a perfect genetic match. Many hospitals are equipped to allow such donations, which do not interfere with the birth process in any way. Some hospitals are not.

News from S & E

Dear friends-

We have difficult news. Two weeks ago, Susannah was diagnosed with a rare form of leukemia (CMML), and is now working with Dana Farber Cancer Institute in Boston. While she is currently stable and plans to teach for at least one semester at her new job at Mt. Holyoke College, the only possible cure for her condition is to find a donor match and receive a bone marrow transplant.

We are blessed to be working with a very competent and accessible team of specialists, and to have a wonderful support network. We know that your thoughts and prayers are with us, and as you get in touch we would also love to hear about what's happening in your lives. This blog is a place for that.

In the last two weeks, we have learned a great deal about bone marrow donation, and we have become committed to using our experience to improve the situation for other cancer patients. Bone marrow and umbilical cord blood donation are simple procedures that routinely save lives. Signing up to join the international registry is also simple in many countries. Even in this context, though, we see patterns of white privilege. While no one can be sure of finding a matching bone marrow donor, the chances of finding a match for a person with Western European ancestry are substantially better than those for a person of color. With your help, we hope that we can begin to close this gap, so that anyone who needs a donor can find one.
This following post provides more details, explaining how you can register to donate bone marrow and what that entails. We encourage you, if you are so moved, to forward this to your own networks, perhaps adding your own message if you feel that is appropriate.
Again, we are strengthened by the knowledge of your love and support,

Susannah and Ethan