February 20, 2009

If you are in the Ottawa region on Saturday or know someone who is, Black History Ottawa is hosting an event which will also allow you to do the the first portion of registration as a stem cell donor and/or get your questions answered. If you register, you will get cheek swabs sent to your home in an envelope. Swab the inside of your cheeks according to the instructions and send them back.

You will also be able to meet Angela Christopher, former Montrealer, Grenadian, who has acute myeloid leukemia (AML). You may have seen her appeal on the African Caribbean Leukemia Trust (www.aclt.org) website or read about her experiences in The Spectrum, Frontonfrom, Caribbean Calendar, CHUO-FM: "Black on Black", and "Rockers". Angela is a beautiful woman Emru and I connected with when his appeal first went public and she done a lot to influence how people see patients and give them a voice.

Here's the where and when:

Saturday, February 21
Tropical Showcase (Music, Culture, Health)
Ottawa Public Library Main Branch (Auditorium), 120 Metcalfe Street
1 to 4 p.m.
Free Admission
~ Find this event on Facebook ~

An afternoon of music, culture and fashion from Africa and the Caribbean. Health promotion displays on physical activity, nutrition and healthy lifestyles. Information on risks of disease and injury, sickle cell disorder, cancer, diabetes etc. Take the opportunity to check your blood type. Special performances by SIFA choir, Heru drummers and more. A partnership between Ottawa Public Health, Canadian Blood Services, Sickle Cell Disease Parents’ Support Group, and Black History Ottawa. Information: 613-580-6744 Ext. 23923.

Remember, if you are not white in Canada, you have somewhere between a 10-30% chance of finding an unrelated match. Or YOU could be someone's match. If you don't fall within this statistic, you know someone who does.

If you cannot make it, you can register online with OneMatch.

Stem Cell Awareness and the Black Community
How To Register as a Donor in Canada

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November 3, 2008

The Month of November is National Marrow Awareness Month in the US. Online registration with the NMDP is free.

November 3-9, 2008 is Canadian Stem Cell Awareness Week. Go to the OneMatch site to find out how to Spread The Word.

November 17-23, 2008 is Anthony Nolan Week in the UK. Check the Anthony Nolan Trust media centre for their latest YouTube video.

So let's try and build some awareness: here are 5 important points that you should know about registration and donation.

1. 70% of people requiring a stem cell transplant need an unrelated donor.

The first choice is a family member, but more people will have to rely on a stranger.

2. Register by providing a blood sample in Quebec or the UK, or a cheek swab sample in the rest of Canada or the US.

In the US, UK and most of Canada, you can even fill in your registration online and get a kit sent to your home.

This is a free service in Canada and the UK as well as many other countries. In the US, there are ways to register for free.

3. Donation is safe, fast, and not risky.

You never donate stem cells or bone marrow at risk to your own life. Whatever is donated replenishes itself naturally in the body.

4. There are 2 ways to do it.

70% of people will donate in a process that takes a few hours and is similar to donating blood. For a few days leading up to the extraction process, the donor receives injections to produce additional stem cells in the body.

30% of people will donate by having liquid marrow extracted from within the back of the pelvic bone.

5. Many people cannot find matches.

There are 8 blood types, but for a stem cell match there are several million combinations of possible human leukocyte antigen (HLA) profiles - 150 billion different possibilities in theory.

Even though blood is important, and people who need transplants (in addition to many other people) need donated blood to survive, people with a rare blood type can probably find a match in a room with 100 people of different ethnicity. For someone looking for a stem cell match, they may need a stadium of 20000 or 50 stadiums (or more) to find a match.

Then they have to hope that person is on the registry.

The most likely match within the general population is someone of the same or similar ethnicity.


How To Register in Quebec
How To Register in Canada
How To Register Online in the United States

Stem Cell Awareness and the Black Community

By the Numbers: Still a State of Emergency

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September 3, 2008

What a day.

After getting Max off to school, Vicky and I dolled ourselves up and headed straight out to Place des Arts for the Cancer Connections Montreal launch I mentioned yesterday. Although we left late (fresh pain in my leg slowed me down considerably) and had to get through heavy traffic, we somehow made it on time. I could tell the whole story here, but pictures, appropriately enough, do it better. I've put a handful of photos from the morning up on Flickr.

You can see the entire photo collection online, but I recommend going to see them in person. It's a free outdoor venue, and seeing them all arranged on the esplanade can pack quite an emotional wallop—but it's also an amazing testament to the diversity of cancer experiences, and something about seeing these under the open sky makes the overall experience more positive than anything else. The exhibit will be in Montreal until September 28.

After that we had to head to the hospital for a blood test, a dressing change for my catheter, my checkup and a CT scan to hopefully find the cause of the continuing congestion that has been affecting my hearing for over a week. Only the CT scan had a fixed time and everything else was kind of a crapshoot, but the stars aligned and everything mostly fell into place. (Except for the extended time I had to wait for the radiology folks to clear through their CT scan backlog. When you're leukemic it's already hard to stay warm; when your blood pressure is low it's even harder. Even under several blankets, I was freezing for quite some time.)

But the truly exciting news came when we were on the road, between exhibition and hospital. Checking the answering machine at home, we discovered we'd received the call we'd been waiting for from the Ottawa Hospital. My Day Zero—the day of the transplant, my new birthday—is September 15. However, I will actually be admitted to start my transplant prep this Saturday.

So much to do, and so little time to do it. But the timing couldn't be better, given my circumstances. My leg is getting worse—I'll actually need a painkiller tonight—but otherwise I've been slowly regaining my strength. Starting this while I'm on the upswing is, as they say, just what the doctor ordered.

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September 2, 2008

Last week I hinted at a "whirlwind" Vicky and I were expecting one afternoon. It's kind of last-minute, but here's the full explanation.

A few weeks ago Vicky was poking around the Canadian Cancer Society website when she discovered a touring photo exhibit featuring cancer patients. It was called Cancer Connections, and they were looking for submissions for the Montreal leg of the tour. We got the negatives from Vicky's various photos of me, and brought them over to our good friend Marc Elias. He scanned our two favourite photos at the requested resolution and worked his Photoshop magic to get just the right contrast and detail. In the end, one of the photos—one many of you will recognize—was accepted.

The whirlwind I referred to came about because of an unexpected follow-up. When Cancer Connections first launched in Toronto, CBC News: Sunday ran a segment featuring a photographer/subject pair. We were asked if we'd like to be taped for a similar piece for the Montreal launch. We said yes, and the "whirlwind" was the prep and shooting of the segment. (We don't know exactly when the segment will air as yet; just that it will be on a Sunday—of course—sometime during the run of the exhibition in Montreal.)

So tomorrow is another whirlwind. In the morning we're off to the launch at the Place des Arts Esplanade; it's an invitation-only thing, complete with mayoral speeches and wine I can't drink, but at some point in the day the exhibit opens to the public. It's scheduled to run until September 28, and will continue touring Canada for two years.

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