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March 2004 Updates Friday, March 05, 2004
Although the testing on Bruce's parents isn't finished yet, we got the HLA testing results for our daughters today. Two out of three of them are 5/6 matches. So, we definitely have a donor!
After all the test results are in, if Bruce decides he's definitely going to go ahead with the bone marrow transplant, more testing will be done on the girls and they'll need to have thorough check-ups, etc., before a final decision is made. However, unless one of Bruce's parents is a 6/6 match, the preliminary assumption is that Chrissy, our youngest daughter (the one in the wedding pictures), will be his donor...The fewer pregnancies the donor's had, the better. Chrissy is pregnant for the 2nd time, our other daughter has had 3 children...The younger the donor, the better. Chrissy is 9+ years younger than our other daughter...And, Chrissy being CMV negative would be a plus (if she's still CMV negative, that is). In 1994 both Bruce & Chrissy were CMV negative, our other daughter is CMV positive...Chrissy's thrilled that she'll probably be Bruce's donor. Since she was small, she's always counted on being the one who would be his donor when the time came for him to have a BMT.
We'll have to wait at least 6 weeks after Chrissy's had her baby, before she can donate her bone marrow. And, if possible, we'd like to give her a little longer. We're probably looking at late September at the earliest for the BMT, and possibly October or November. Of course, that's assuming Bruce can wait that long. If not, our other daughter would be his donor.
Bruce hasn't started the Rituxan yet. We're waiting for his onc to look into "just one more thing" for us. :)
Thursday, March 18, 2004
I'm sorry I haven't given an update for so long, but there hasn't been much to report. Bruce & his onc have been keeping in touch via email, but Bruce hasn't seen him again until today.
Bruce's onc has been trying to get Bruce a vaccine under "Single Patient Compassionate Use", but so far he hasn't had any luck. After the first pharmaceutical company he contacted said no, he tried another company that makes a different vaccine...they haven't returned his calls.
Some good news is, the tumor on Bruce's back is still small. Yeah! The bad news is, Bruce has paraneoplastic syndrome again.
Bruce's onc is anxious for a treatment plan to be started before Bruce's condition worsens, but first he wants Bruce to see another lymphoma specialist to get a SECOND 2nd opinion. What a great onc he is! He wants to be certain that he's not overlooking any possible treatment options. He'll make the appointment tomorrow and his office will call us to let us know the date and time of the appointment.
Bruce's parents are only 3/6 matches for Bruce, which isn't a surprise. A parent will always be at least a 3/6 match with their child. However, the chance that a parent will be a full match is less than 2%. That's OK though! Two of our daughters can be his donor and he only needs ONE donor!
Several friends and family members have asked us about HLA testing. For those who are interested, you can read some basics about tissue typing for bone marrow transplants here. Scroll down to the bottom of the page, to where the diagram is. As in this diagram, most parents don't share any of the same antigens, so the most a child will match a parent is 3/6. Looking at the picture though, imagine that the mother's red A19 and DR27, are actually A4 and DR18 instead (which is a 2/6 match to the father). This was the situation with Bruce & me (although ours aren't these specific antigens), and is how two of our girls ended up being 5/6 matches with Bruce. They took the haplotype from Bruce that doesn't have any matches to me, and they took the haplotype from me that has 2 matches to Bruce, which makes them a 5/6 match to Bruce & a 3/6 match to me.
Friday, March 19, 2004
Bruce's onc's office called this morning. They've scheduled an appointment for Bruce with the other lymphoma specialist for Wednesday, March 31st.
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