Yep, when working on "the project" I learn new things every day.

Because Emru and the rest of our family have been working hard to find out as much as we can, so we can inform others, I have been in touch with many caring people at Onematch in Canada, the National Marrow Donor Program in the US, and Hema-Quebec, right here in la belle province.

Some weeks ago, I was discussing some other aspect of getting involved, and mentioned that I was relieved that at least I was on the registry now that I knew about it. Diane Roy, director of Quebec's Stem Cell Donor Registry, said I might not be.

Imagine that.

The explanation given was that many clinicians will not bring up the issue of the unrelated donor registry, because people might be emotional about the issue at the time.

Anyway, when I did not match Emru, I hoped that I would eventually match someone else, now that I was aware of the need. I could have walked around for years, instead of weeks, thinking that I was registered.

If you have matched for a relative, and you were not asked at the time for consent to join the unrelated bone marrow donor registry at the time, please contact your local registry.

In my case, I did not have to go and get re-tested, because I stated why I was registering. I did find this out while I was booking my appointment to register, so I got through two steps before anyone alerted to me that I had to fill out a very simple form, stating the patient's name, my name and birthdate, the hospital, my name and birthdate (again), my signature and the date. That's it.

The text on the form says, "I, hereby, authorize that a copy of my HLA typing results entered be transmitted to the Montreal Hema-Quebec centre so that my name can be added to the Stem Cell Donor Registry."

I thought about this process, and I think it is deeply flawed. 70-75% of the people looking for a match will not find it from their close relative. Most of the people that enter a clinician's office hoping to save their loved one's life may not be informed that their results, should they not match will not become part of the database. If people are worried about patients being emotional or not capable of donating during a trying time, then the information can be given in a package when the family member is informed if they are a match or not. How hard is that?