Day +742: Two-year festivities

Wow, we're already nearly two weeks past the two-year anniversary of Mina's transplant. We had been looking to that day for so long, but then it came and went and life goes on. We did go to the Russian River again that weekend like we did last year, just the family. I think that's a tradition that is going to last as long as we're in the Bay Area. We stayed in a house near Kazadero, which is near the mouth of the Russian River, just like last year and had a great time again. There's a very nice, sheltered little cove in the Salt Point State Park about an hour north of Jenner. Last year it seemed so magical, I suppose because it was our first real outing since Mina first got sick so long ago. This year it seemed just fun and normal. We've had lots of outings now, and have grown so accustomed to Mina being not only healthy but strong as an ox. Anyway, we went to the Beach on Saturday, spent part of Sunday morning throwing rocks in the creek, and then headed home so we could get back at a reasonable hour. A very enjoyable, but short weekend, which was probably for the best given everything else that has been going on.

The one very special thing that happened was that we finally had our telephone conversation with Sean Rodriguez, Mina's donor. We had arranged for him to call us at the rental house at about 8 AM Sunday morning. We'd been prepping Mina, so she came running over and I just put her on right away. Sean said that, as expected, he began to choke up as she was talking, but then he had to catch himself because he wanted to hear what she was saying. She ended up talking to him for about 5 minutes, which is a pretty lengthy phone conversation for a 4-year-old. Then I talked for an hour or so and Keri talked for another hour. He's an interesting guy, and he gave us permission to post his letter to us, which I will do in my next blog entry.

He told us quite a bit about himself, why he left the service (politics of war), what his plans are after he graduates this spring, etc. He also talked about the day he donated, which was interesting. He had to go down to New York City (a couple hours away by train) for the procedure, and they put him up in a hotel room. I guess they put him out for the procedure, and after they released him he was supposed to stay in the hotel room and rest up. But he felt like going out in public, so he walked out to Central Park, where who should he meet but his coordinator! She gave him a good bawling out, but I can totally understand why he wouldn't want to stay by himfelf in the room.

They did tell him it was a little girl who had been sick since before she was one, so he was already doing a lot of hoping that the little girl would make it. They apparently kept telling him it was always possible for him to back out, but that there was a point of no return for Mina. That would have been after they started the cyclophosphamide and total body irradiation to wipe out her own bone marrow, when she needed to get some white blood cell counts as quickly as possible. He said he never gave a thought to backing out, and was quite appalled that they would even keep asking.

The one thing he said about the procedure is that it was quite painful. They told him to have someone drive him down to the city, but he took the train instead and had to ride all the way back sitting on one butt cheek. He said he pretty much felt it for a month. I had heard that it was painful, but it was good to hear the story firsthand from him. I'm sure he feels like the physical pain is nothing compared to Mina's journey and the amazing outcome of the whole thing so far. But it makes me admire him all the more that he would do that, and feel that way about it. I don't think a lot of people would put themselves out like that for a total stranger.

Mina had her two-year appointment with the BMT team on Tuesday the 2nd after we got back. It was pretty much all smiles. Dr. Horn gave Mina her examination, and it's always good to see her. She was on service while Mina was going through the worst of it, and I'll never forget that phone call with the news of a positive blood culture for gram positive bacteria, while Mina was in intensive care, and Dr. Horn saying "The next twelve to twenty four hours will be critical." I brought Isaac along to the appointment so Keri could have some time at home, and they were both such good kids through the whole thing. Dr. Horn looked at the kids' relative heights, and immediately thought Mina should probably see an endocrinologist -- it would be suprising after all if she didn't have some hypothyroidism or other difficulties with having had TBI at such a young age. Of course, I knew Isaac was very tall for his age, and when she charted Mina's growth, Mina was holding steady at 75th percentile for height and 90th for weight. She's now 3'5" and 42 lbs.

We also bumped into Dr. Cowan in the hallway outside the clinic, and boht Mina and Isaac gave him hugs. They also hugged the "shot doctor", which is what Mina calls the phlebotomist. Mina sat by herself for her blood draw, and didn't even flinch when the needle went it. They took a lot of blood because they are running the whole battery of tests. Her counts looked great, but no results back yet on thyroid function, antibody titers (which will tell us whether she can start receiving live vaccines like MMR) and of course, donor engraftment.

We've been in a bit of a down cycle since the festivities ended -- Mina has been short on sleep, and we've all been a bit tired and grumpy. Mina has been having some conflicts with one of her best friends at school, which has been difficult to see. She's been quite sad about it at times, to the point where one day she said she didn't want to back to school, she wanted to go to kindergarten and make new friends. Yesterday she was so tired that she refused to go to the Bay Area Discovery Museum with Meghan, even though it was Meghan's last day! She cried and cried, until Keri finally let her stay home with her. I'm sure that these things will pass, and school will be out for the summer in a few short weeks. Meghan will really be missed though. She's been with us since Mina still had short hair and a puffy face from the steroids, and she's more like part of the family than like a babysitter. Mina keeps saying "That's OK, because she will still come and visit us!" But I'm sure she doesn't understand that Meghan is moving 3000 miles away, so we really won't be seeing much of her...

If you've made it this far, congratulations and thanks for checking in!