Update
Thanks to everyone for your support -- it means a whole lot right now. My sister, Susan, is doing really well. We've had a scary piece of news in that her leukemia has something called the "philadelphia chromosome anomaly." This indicates an aggressive cancer and pushes bone marrow transplant as the best option. Despite this, Susan's general appearance and her lab work is fantastic.
In an odd turn of events, the best place to do bone marrow transplants in the United States turns out to be the Fred Hutchinson Cancer Center, which is right here in Seattle. In fact, marrow transplants were invented there. The person who did the first marrow transplant, Dr. Don Thomas, turns 90 years old on 15 March.
https://is-ext.fhcrc.org/open/guestbook/thomas/
My sister is coming to Seattle on Sunday to check in and start the process. My parents are with her. They'll all be living roughly 2 miles from where I live, which means I'll be able to see them most days. Susan's insurance has come through and it looks like this will be covered. Susan jokes that her protest in favor of expanded health coverage last year paid off.
We are still looking for a bone marrow donor. The hospital in New York has been slow to finish my test, so I still don't know my tissue type. I called the Fred Hutchinson Cancer Center to see if I could go ahead and test with them, now that we know she will continue treatment here. Every day we go without a donor is a day Susan needs to stay on maintenance chemotherapy. Turns out they can't test me until she is here, but they pointed me to http://www.bonemarrowtest.com .
Yes, you too can order a bone marrow tissue type test over the Internet! From an Oregon firm that specializes in direct to the customer, high quality, low price, practically zero overhead genetic testing! Have I mentioned yet that we are living in the future?
Susan's tissue type test results just came through, thankfully, so we will be ready to start pursuing other donors in case I am not a match. In "the best news all day" category, the U.S. marrow repository offers a self-service web page for performing a preliminary search by human leukocyte antigen (HLA) type:
http://www.marrow.org/PATIENT/Donor_Select_Tx_Process/The_Search_Process/View_Potential_Matches_for_Your_HLA_Type/index.html
My sister's type shows 25 people with matches on all 6 out of 6 HLA antigens tracked by the registry, and 1530 people with 5/6 matches. While this is nowhere near the same thing as having an actual donor committed to the case -- those 25 people might all be missing, dead, mismatched on closer inspection, or otherwise unable to donate -- it's a lot better than zero.
I am still hoping that I match, because then we'll have the best possible option to start quickly.
Thanks also to everyone who has considered joining the registry or sent the news to friends. Please don't worry if for whatever reason you cannot or do not want to join yourself - just considering is great, telling friends is even better. Twitter has been wonderful. You can see the statistics here for people who have clicked on the link to learn more about joining. While there is a sharp dropoff in the number of clicks, it's 340+ people who have considered donating.
http://idek.net/18d9/s
I am also running Facebook ads:
While the ads don't bring in as many clicks as Twitter, they reliably bring in 20-odd clicks per day. I don't have a way to measure conversion. Facebook ads has helpfully infomed me that they have a new product for tracking conversions, but it requires modifying the web page to load their Javascript. I have contacted the national registry to ask them for a promo code or other method for determining how many of the people who visit actually sign up.
The currently running ad ("save a life!") is targeted specifically to Ohio. My father's side of the family is Hungarian. Turns out there are many people of Hungarian descent in Ohio, so this is a crude attempt at targeting towards people most likely to match my sister's HLA type.
I have asked the national registry for help in better targeting these ads. Many thanks also to Henry Cohn for putting me in touch with other people who may be able to help. Even if (when!) my sister finds a match, there are many others who are not as lucky. With only 8 million people in the U.S. national registry there is a long, long way to go. Furthermore, most of those 8 million are of European descent, so if you aren't and you have leukemia, then right now you're in trouble. There has to be a way to fix this.
Finally, for those of you in the NYC area, my sister's friends are holding a benefit in her honor on her birthday, 1 May 2010. More details to follow, but it looks like it will be at the Hell Gate Social Club in Queens from roughly 8PM - 2AM . Expect artists, musicians, and a good time.
http://www.hellgatesocial.com/
In an odd turn of events, the best place to do bone marrow transplants in the United States turns out to be the Fred Hutchinson Cancer Center, which is right here in Seattle. In fact, marrow transplants were invented there. The person who did the first marrow transplant, Dr. Don Thomas, turns 90 years old on 15 March.
https://is-ext.fhcrc.org/open/guestbook/thomas/
My sister is coming to Seattle on Sunday to check in and start the process. My parents are with her. They'll all be living roughly 2 miles from where I live, which means I'll be able to see them most days. Susan's insurance has come through and it looks like this will be covered. Susan jokes that her protest in favor of expanded health coverage last year paid off.
We are still looking for a bone marrow donor. The hospital in New York has been slow to finish my test, so I still don't know my tissue type. I called the Fred Hutchinson Cancer Center to see if I could go ahead and test with them, now that we know she will continue treatment here. Every day we go without a donor is a day Susan needs to stay on maintenance chemotherapy. Turns out they can't test me until she is here, but they pointed me to http://www.bonemarrowtest.com .
Yes, you too can order a bone marrow tissue type test over the Internet! From an Oregon firm that specializes in direct to the customer, high quality, low price, practically zero overhead genetic testing! Have I mentioned yet that we are living in the future?
Susan's tissue type test results just came through, thankfully, so we will be ready to start pursuing other donors in case I am not a match. In "the best news all day" category, the U.S. marrow repository offers a self-service web page for performing a preliminary search by human leukocyte antigen (HLA) type:
http://www.marrow.org/PATIENT/Donor_Select_Tx_Process/The_Search_Process/View_Potential_Matches_for_Your_HLA_Type/index.html
My sister's type shows 25 people with matches on all 6 out of 6 HLA antigens tracked by the registry, and 1530 people with 5/6 matches. While this is nowhere near the same thing as having an actual donor committed to the case -- those 25 people might all be missing, dead, mismatched on closer inspection, or otherwise unable to donate -- it's a lot better than zero.
I am still hoping that I match, because then we'll have the best possible option to start quickly.
Thanks also to everyone who has considered joining the registry or sent the news to friends. Please don't worry if for whatever reason you cannot or do not want to join yourself - just considering is great, telling friends is even better. Twitter has been wonderful. You can see the statistics here for people who have clicked on the link to learn more about joining. While there is a sharp dropoff in the number of clicks, it's 340+ people who have considered donating.
http://idek.net/18d9/s
I am also running Facebook ads:
While the ads don't bring in as many clicks as Twitter, they reliably bring in 20-odd clicks per day. I don't have a way to measure conversion. Facebook ads has helpfully infomed me that they have a new product for tracking conversions, but it requires modifying the web page to load their Javascript. I have contacted the national registry to ask them for a promo code or other method for determining how many of the people who visit actually sign up.
The currently running ad ("save a life!") is targeted specifically to Ohio. My father's side of the family is Hungarian. Turns out there are many people of Hungarian descent in Ohio, so this is a crude attempt at targeting towards people most likely to match my sister's HLA type.
I have asked the national registry for help in better targeting these ads. Many thanks also to Henry Cohn for putting me in touch with other people who may be able to help. Even if (when!) my sister finds a match, there are many others who are not as lucky. With only 8 million people in the U.S. national registry there is a long, long way to go. Furthermore, most of those 8 million are of European descent, so if you aren't and you have leukemia, then right now you're in trouble. There has to be a way to fix this.
Finally, for those of you in the NYC area, my sister's friends are holding a benefit in her honor on her birthday, 1 May 2010. More details to follow, but it looks like it will be at the Hell Gate Social Club in Queens from roughly 8PM - 2AM . Expect artists, musicians, and a good time.
http://www.hellgatesocial.com/