Find a Match for Joyce!
Give us a hand by giving us your arm.
November 20, 2001
To our friends and family members:
We have had a trying couple of weeks. At the end of October, Joyce was diagnosed with leukemia. Not just any leukemia, but a type that is rare in adults and complicated by a chromosomal peculiarity that is even more rare. Her diagnosis is a mouthful: Philadelphia-chromosome positive B-cell adult lymphoblastic leukemia (A.L.L.). There are many different types of leukemias with different prognoses and treatments. Most of them are more treatable than what Joyce has been diagnosed with. The bottom line with Joyce’s diagnosis is that, without a “stem-cell” transplant (which is the modern, new-fangled version of a bone marrow transplant), she will not go into long-term remission or be cured.
Her medical team is great. Joyce entered chemotherapy almost immediately. The news that we have to be grateful for this Thanksgiving is that Joyce is responding very well. However, there are still the typical, unpleasant side-effects of chemotherapy that make her uncomfortable to varying degrees, and in rotating places, on nearly a daily basis.
The goal of her chemotherapy is to get her into remission so that progress toward a transplant can proceed. On November 26, Joyce’s bone marrow will be tested, and the results will determine whether she is in remission or not. We are all hopeful that she will, indeed, be in remission so that we can move forward toward a transplant.
The next hurdle will be to find a stem-cell donor. There is a national registry with 4.5 million “unrelated donors,” but even a pool that size doesn’t guarantee that a donor will be found. So we are trying to expand the pool, and are providing information and opportunities to be tested. For the initial test to be a potential donor, you need only have one vial of blood drawn (read on to find out how to do that). If your “stats” look promising, then you will be contacted for further testing (more blood tests). If the tests determine you to be a match, the transplant of stem cells still only involves a gift of blood product and is a non-invasive procedure for the donor. The testing is genetic. Blood type is irrelevant.
We have opted for private testing to speed things up a bit, rather than go with other options. There will be two donor drives at the beginning of December in Seattle. We save a few months’ time by doing it this way. Because Joyce seems to be responding well to chemotherapy, we want to make sure that we’ve got all our ducks in a row once she’s ready for the transplant. To those of you who have been waiting for this information, thank you for your patience. It’s taken awhile to sort out the options and various timing factors.
There are some general criteria and limiting factors for potential donors. You can check out the criteria listed by the National Marrow Donor Program at http://www.marrow.org/HELP/eligibility_guidelines.html If you have any questions about your potential ability to donate due to some pre-existing condition, ask your own physician if your condition would disqualify you as a donor (ask him or her if you could qualify as a bone marrow or stem cell donor). Also, age guidelines through private testing are not quite as restrictive. The likelihood of being able to donate if you are in the 60-70 year-old age category is quite low, but you are not necessarily disqualified. Also, potential donors under the age of 18 require parental consent. Again, if you have questions about your ability to be a donor due to age considerations, check with your doctor. Perhaps if you find out that you don’t qualify, for whatever reason, you could encourage someone else to be tested in your place.
If you plan on participating in the drive, WE NEED YOU TO RSVP ASAP! Test kits must be ordered from a laboratory in Ohio, and we want to make certain that we have enough kits to go around. We know that is hard with Thanksgiving in the mix, but please just e-mail Joyce’s sister Jaci at jacirae@u.washington.edu , saying “count me in.” Provide your name and preferred date (see below). Once you indicate your date, please stay with your stated preference. Thanks.
Cost for the test in the drive setting will be no more than $75. Actual cost of each test will depend on the total number of participants (the reason for the price differential is the difference in shipping costs). Cost if you order a single kit (see below for instructions) is $90.
When: Saturday, December 1, 2001
11 a.m. – 2:30 p.m.
Where: University Presbyterian Church
4540 Fifteenth Ave., NE
(Entrance on Fifteenth at the corner of 47th.)
(Parking: on-street; uncovered lot across 15th from church entrance. If in lot, please limit parking exclusively to time at the drive.)
Questions on day of Drive? Call Jaci at 206-854-7076
When: Monday, December 3, 2001
9 a.m. – 2 p.m.
Where: Coldwell Banker Bain
1200 Westlake Ave., N., #406
Seattle, WA 98102
AGC Building 4th floor above Harborside Restaurant
Questions on Day of Drive? Call Kelly at 206-860-8700
If you are unable to participate in the drives:
If you are out of the area, and cannot participate in the drives, you may still participate, and need not be limited by the drive dates we have set. But, of course, the sooner the better. You can order your own kit directly, either on-line (http://www.bonemarrowtest.com/how_to/private_testing.asp , click on “Quick Kit Purchase”) or by phone (1-800-443-2383).
What to order: test kit for AB serology
If you order on-line, you will be prompted for information asking if you are being tested as a possible match for a specific person. Enter “Joyce Miner.” They’ll know where to direct the results.
If you call to order a kit, please mention that you are being tested for compatibility with Joyce Miner.
How to get your blood drawn: call a blood center or a donor center near you; if there is none, call your doctor and ask if a lab technician could draw the blood for you. THEY DO NOT NEED TO DO ANYTHING OTHER THAN DRAW YOUR BLOOD. You are provided with a pre-addressed, pre-paid FedEx mailer, and return the kit to the lab for testing. You can locate donor centers at http://www.marrow.org/cgi-bin/NETWORK/map.pl?ctr_typ=DC
Your test results will be mailed to you and faxed to Joyce’s oncologist. Dr J will review the results and if she sees that you are a potential match, she notifies the lab. She does not know who you are – no identifying information is on the results page. The lab would then contact you directly for further testing.
THANK YOU.
We want you to know how much we appreciate each and every one of you who has been so supportive, interested, and encouraging through this process. Thank you for being willing to give Joyce your “right arm.”