Day +373: And the donor is...
Sean Rodriguez, 37, of Staatsburg, New York. We got his name, address and e-mail address on Friday, and ours are being sent to him. That means he's given his permission for us to contact him, as we expected given the letter he sent with his stem cells, so our next step is to compose a letter and send some pictures. We can never thank him enough, of course, not least because donating bone marrow is supposed to be a very painful experience and one that is not without risks. But his generosity may just have saved our girl's life, and a part of him will live in her for the rest of her life. Keri thought maybe we should add another name to Mina's collection: Mina Brigitta Mae Rodriguez Olsen Olson.
Of course the first thing I did when I found out was google '"Sean Rodriguez" Staatsburg', and came across a couple of pages on the BBC website that he had somehow contributed some views to: http://www.google.com/search?hl=en&q=%22sean+rodriguez%22+staatsburg&btnG=Google+Search. I think we'll get along just fine. ;-) Staatsburg appears to be a tiny town on the Hudson River about halfway between New York and Albany. Keri had been speculating that maybe he was in the Bay Area, based on a comment someone at UCSF had made, but this probably explains why they had to wait until the next day to do the transplant -- they usually do it the same day the stem cells were harvested from the donor, but they weren't able to get the cells processed in time so Mina's transplant was the next morning. It will be very exciting to tell him the whole story. I suppose one of the first things we should do is send him to this blog.
Mina had the first of her one-year evaluation tests on Friday. This one was a pulmonary function test, where they sedated her, put her in a glass box, and pumped her lungs full of air to see how well her lungs are functioning. The test came back in the low-normal range, which the guy said was just fine. She was exactly average last time, so she scored a bit worse this time, but he wasn't worried as long as she's in the normal range. She has a bit of a cold, so perhaps that has something to do with it, or else it could just be testing error. There is some concern about long-term lung issues with GVHD and radiation (they do 50% lung shielding with total body irradiation because of experience with lung toxicity), but nothing to worry about for now.
Mina has a picture book about a little girl named Hannah who has leukemia that she got as a door prize when she was first admitted to UCSF. The book isn't exactly Caldecott Medal material, but Mina has always liked it for obvious reasons, and it has served its purpose. There's a scene in it where Hannah is waiting to take her "sleepy juice" for her MRI, and saying that she "did a good job skipping my breakfast that morning". I read that to Mina Thursday night to prepare her for Friday morning. It seemed to help, and today I caught her saying "I did a good job skipping my breakfast". Anyway, there's another scene in it where Hannah is bald as a cue ball, and Mina asked me right away: "Why no hair?" So I told her about strong medicines that make your hair fall out and asked if she remembered her hair being short while she was in the hospital. She said she did, and I promised to show her some pictures. She's such a big girl now, we're going to have to get ourselves prepared to really talk to her about her disease.
Today was another gorgeous day, and we spent another day at the beach. Mina is absolutely loving being able to dig in the sand again after so long. Saturday we went to the local playground, and the first thing she did was plop her butt down in the sand and start in with the shovel and bucket, and she wouldn't get up even to swing. Today she started off running around in the water and running away from the waves, squealing with delight when the wave ran back out over her feet. Then she spent two hours digging. Isaac wouldn't go near the water at first. He's funny, he seems to need some time in a new place before he totally lets go and enjoys himself. After an hour or so I finally got him near the water, and then he was running around giggling and squealing same as his sister. He kept pointing at the waves and saying "Big one! Big one!" Then he would say "Waves! Ocean!"
Keri was remarking that this is the first May where we've been able to play since being in the Bay Area. The last two years we were in the hospital of course, in 2003 we had a newborn baby, and in 2002 Keri was in Syracuse finishing the first draft of her dissertation. It's a beautiful time of year, a respite before the fog sets in. We have a very full schedule over the next few months, so we're definitely making up for the time we've lost over the last two and a half years, and so is Mina Brigitta.
Of course the first thing I did when I found out was google '"Sean Rodriguez" Staatsburg', and came across a couple of pages on the BBC website that he had somehow contributed some views to: http://www.google.com/search?hl=en&q=%22sean+rodriguez%22+staatsburg&btnG=Google+Search. I think we'll get along just fine. ;-) Staatsburg appears to be a tiny town on the Hudson River about halfway between New York and Albany. Keri had been speculating that maybe he was in the Bay Area, based on a comment someone at UCSF had made, but this probably explains why they had to wait until the next day to do the transplant -- they usually do it the same day the stem cells were harvested from the donor, but they weren't able to get the cells processed in time so Mina's transplant was the next morning. It will be very exciting to tell him the whole story. I suppose one of the first things we should do is send him to this blog.
Mina had the first of her one-year evaluation tests on Friday. This one was a pulmonary function test, where they sedated her, put her in a glass box, and pumped her lungs full of air to see how well her lungs are functioning. The test came back in the low-normal range, which the guy said was just fine. She was exactly average last time, so she scored a bit worse this time, but he wasn't worried as long as she's in the normal range. She has a bit of a cold, so perhaps that has something to do with it, or else it could just be testing error. There is some concern about long-term lung issues with GVHD and radiation (they do 50% lung shielding with total body irradiation because of experience with lung toxicity), but nothing to worry about for now.
Mina has a picture book about a little girl named Hannah who has leukemia that she got as a door prize when she was first admitted to UCSF. The book isn't exactly Caldecott Medal material, but Mina has always liked it for obvious reasons, and it has served its purpose. There's a scene in it where Hannah is waiting to take her "sleepy juice" for her MRI, and saying that she "did a good job skipping my breakfast that morning". I read that to Mina Thursday night to prepare her for Friday morning. It seemed to help, and today I caught her saying "I did a good job skipping my breakfast". Anyway, there's another scene in it where Hannah is bald as a cue ball, and Mina asked me right away: "Why no hair?" So I told her about strong medicines that make your hair fall out and asked if she remembered her hair being short while she was in the hospital. She said she did, and I promised to show her some pictures. She's such a big girl now, we're going to have to get ourselves prepared to really talk to her about her disease.
Today was another gorgeous day, and we spent another day at the beach. Mina is absolutely loving being able to dig in the sand again after so long. Saturday we went to the local playground, and the first thing she did was plop her butt down in the sand and start in with the shovel and bucket, and she wouldn't get up even to swing. Today she started off running around in the water and running away from the waves, squealing with delight when the wave ran back out over her feet. Then she spent two hours digging. Isaac wouldn't go near the water at first. He's funny, he seems to need some time in a new place before he totally lets go and enjoys himself. After an hour or so I finally got him near the water, and then he was running around giggling and squealing same as his sister. He kept pointing at the waves and saying "Big one! Big one!" Then he would say "Waves! Ocean!"
Keri was remarking that this is the first May where we've been able to play since being in the Bay Area. The last two years we were in the hospital of course, in 2003 we had a newborn baby, and in 2002 Keri was in Syracuse finishing the first draft of her dissertation. It's a beautiful time of year, a respite before the fog sets in. We have a very full schedule over the next few months, so we're definitely making up for the time we've lost over the last two and a half years, and so is Mina Brigitta.
posted by Arne Olson @ 11:37 PM
1 Comments:
At 7:56 AM PDT,
Anonymous said…
Sean's anonymous message at the very beginning was a window into his generous heart and sensitive spirit, and finding the words to thank him, and in doing so, thank all others whose actions are rooted in compassion, is a very difficult task. Mina's ebulience, verve and zest for life is the most eloquent gratitude that her extended family can offer Sean for his inspiring gesture.
Prayers and love,
Hari
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