Note from Mike Tonneson: 6/1/05
Bonnie's Status:
All:
We have found out a lot of new info in the last 3-4 days. I will try to be brief.
Bonnie's sister is not a match.
Further, the results of the search process among the 8 million registered donors in the National Marrow Donor Registry did not yield even one match of 6 out of the first 6 markers, but rather a handful of almost-matches that UCSF will continue to pursue.
In all likelihood, we will be seeking the one remaining potential course of treatment: an umbilical chord-blood transplant. A search of that database is currently being conducted. The database is only 30,000 donors. However, the chances of finding a match are very good, as only four markers are required for this procedure (v. 10 markers for the live-donor approach). Fewer are acceptable because of the following: with live-donor the biggest threat is graft v. host disease wherein the donor's immune system does not recognize Bonnie's organs, cells, etc. so can potentially attack them. With newborn blood, the immune system would be very immature so would not have had a chance to develop the "ability" to know what to attack.
Assuming a match is found in the cord-blood registry in the coming days, we are likely headed to Minneapolis (University of Minn., Fairview Hospital), which is the worldwide leading/pioneering center of excellence for chord-blood transplants. It will mean roughly 120 days there. ....More on this in the coming days as we get more results and the decision on treatment and venue gets made.
Separately, and in parallel, we are encouraging friends and family of Eastern European Jewish ethnic ancestry to part pâté in a donor drive. As you might have inferred, this is the on-in-a-million backup approach now, but one that is clearly worth pursuing in light of the rapidly evolving situation we face. Time is of the essence, so while we will not be organizing a separate drive for Bonnie per se, we will be piggy-backing three previously scheduled drives that were organized in the name of others specifically in need of an Eastern European Jewish donor.
Please recognize that the likelihood of an individual participating, getting testing, and then matching both Bonnie ***and*** the person for whom the targeted drive was originally organized is so infinitesimally small as to not even be an issue at all. So, there is no need to be concerned with trying to designate yourself as a donor for Bonnie only.
Instead, we are encouraging friends and family of Eastern European Jewish ancestry to simply get tested if they can, and thereby get registered in the National Registry. The process is simply a cheek swab-- which will provide the data on the first six markers. Were they to match Bonnie, you would then later be asked to provide a blood sample to check for the incremental four markers for the total ten-marker match. If all ten match, the process of actually donating one's bone marrow (or more accurately, one's bone marrow stem cells that circulate in one's bloodstream) involves a non-invasive procedure very much analogous to donating platelets at a blood donor center.
These three drives are as follows:
City, Date and Time for bone marrow registration
- No donor matches found
- Will likely go to Minneapolis for chord-blood transplant
- Local donor drives in SF, NYC, Boston areas next two weekends.
All:
We have found out a lot of new info in the last 3-4 days. I will try to be brief.
Bonnie's sister is not a match.
Further, the results of the search process among the 8 million registered donors in the National Marrow Donor Registry did not yield even one match of 6 out of the first 6 markers, but rather a handful of almost-matches that UCSF will continue to pursue.
In all likelihood, we will be seeking the one remaining potential course of treatment: an umbilical chord-blood transplant. A search of that database is currently being conducted. The database is only 30,000 donors. However, the chances of finding a match are very good, as only four markers are required for this procedure (v. 10 markers for the live-donor approach). Fewer are acceptable because of the following: with live-donor the biggest threat is graft v. host disease wherein the donor's immune system does not recognize Bonnie's organs, cells, etc. so can potentially attack them. With newborn blood, the immune system would be very immature so would not have had a chance to develop the "ability" to know what to attack.
Assuming a match is found in the cord-blood registry in the coming days, we are likely headed to Minneapolis (University of Minn., Fairview Hospital), which is the worldwide leading/pioneering center of excellence for chord-blood transplants. It will mean roughly 120 days there. ....More on this in the coming days as we get more results and the decision on treatment and venue gets made.
Separately, and in parallel, we are encouraging friends and family of Eastern European Jewish ethnic ancestry to part pâté in a donor drive. As you might have inferred, this is the on-in-a-million backup approach now, but one that is clearly worth pursuing in light of the rapidly evolving situation we face. Time is of the essence, so while we will not be organizing a separate drive for Bonnie per se, we will be piggy-backing three previously scheduled drives that were organized in the name of others specifically in need of an Eastern European Jewish donor.
Please recognize that the likelihood of an individual participating, getting testing, and then matching both Bonnie ***and*** the person for whom the targeted drive was originally organized is so infinitesimally small as to not even be an issue at all. So, there is no need to be concerned with trying to designate yourself as a donor for Bonnie only.
Instead, we are encouraging friends and family of Eastern European Jewish ancestry to simply get tested if they can, and thereby get registered in the National Registry. The process is simply a cheek swab-- which will provide the data on the first six markers. Were they to match Bonnie, you would then later be asked to provide a blood sample to check for the incremental four markers for the total ten-marker match. If all ten match, the process of actually donating one's bone marrow (or more accurately, one's bone marrow stem cells that circulate in one's bloodstream) involves a non-invasive procedure very much analogous to donating platelets at a blood donor center.
These three drives are as follows:
City, Date and Time for bone marrow registration
- San Francisco; Sunday June 5: 10a.m-6p.m.
- Boston (Wayland); Sunday June 12: 10a.m.-1p.m.
- New York (Old Westbury); Sunday June 12: 9a.m.-2p.m
Click here for more information about all three of the drives, above.
Thanks, in advance, for any help you can provide on this front -- including donating as applicable, but also in terms of passing this note -- or the link to this blog address (www.bonnietonneson.blogspot.com) -- on to others who know Bonnie, as well.
....More to come in the next few days. Thank you so much for your continued support on so many fronts.
Sincerely,
Mike
NOTE: You can send this post to a friend by clicking on the email envelope, below. Please send it to friends of Bonnie or friends of yours of Eastern European Jewish ethnic ancestry. They may be the miracle match!
posted by gbiddle616 at Wednesday, June 01, 2005
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