Day +941: Happy Thanksgiving!

Thanksgiving is always a fun time of year for Keri and me. Usually in the past it's a holiday that we have celebrated with close friends, but this year we broke with tradition and traveled to Southern California to visit Keri's stepmother Toni (aka "Tutu" to the kids) and her husband Richard. Teri was there with her whole family, so we got a nice dose of family. We had a great time. Mina and Isaac were very excited to see everyone. Whenever I would mention Uncle Brent to Mina, she would get a goofy grin on her face and say "Tickle one! He's going to tickle-tickle me!" It's nice that the kids are old enough to remember everyone really well now. We left at 5:30 AM Thursday and arrived at about 1:30 PM, and left LaVerne at 5:30 PM Sunday and arrived back in San Francisco shortly after 1:00 AM. We were hoping to avoid traffic leaving at those times, but it seems like there's always heavy traffic in California, and we ran into backups on I-5 in both directions.

Mina got into the spirit of Thanksgiving by making a thank-you card for God. She's been asking more and more questions about God lately, so I've been doing my best to answer them, but I told her she should ask Tutu, who has a Master's Degree from the Trinity School of Divinity. She wanted to thank God for making everything, especially her toys. She and Tutu kept working on it, and it eventually turned into a thank-you book for God. She made seven or eight pages, and Tutu helped her hole-punch them and tie them together with pink ribbon. Then she brought the book with her to God's house on Sunday to give to Her (this is Mina, remember). We didn't see God anywhere, so we gave the book to the pastor's wife as a substitute. This was fun for Keri and me too, as Pastor Craig is a great guy who did a lot for Tutu and the family while Keri's dad was losing his battle with lymphoma, and he flew up to visit us in the hospital after Mina's relapse.

Going to the church was a big highlight for Isaac too. Tutu and Richard attend a modern church with a rock band playing on the stage before the service. Isaac enjoyed watching the music, then went to the children's church while we listened to Pastor Craig's lesson. Afterward, he discovered a drum set in the youth area, and after some coaxing, I finally let him play for about 20 minutes until it was time for the family to go to breakfast. He was so happy. He knows which one is the snare drum and which is the bass drum, but he doesn't know the names of the other two drums (I don't either). He's fun to watch. His favorite is the cymbal, and he has a special way of tapping it lightly and then letting the sound die all the way out before starting in again on the drums. He doesn't really carry on a beat yet, but he's clearly experimenting with the sounds and not just banging away. When it was time to go, he threw a major fit and we had to drag him out of the church kicking and screaming. Nicholas had to hold him while I crammed him into his car seat. It took him 10 minutes to settle down, and the rest of the day he kept talking about going back to God's house and playing the drums.

Tutu and Richard have a pool, so Mina got to show me what she's learning in her swim lessons. She can now put her head underwater and swim for several feet, although she's still working on putting it back out and breathing. She just loves to jump off the side of the pool, and she did it over and over again. Isaac liked the pool too, but he wouldn't go off of the little shallow step they have. This is still an improvement over the last time we were there a year and a half ago, when he wouldn't even stand on the step until the last day. He liked the hot tub a lot better and spent a fair amount of time in it. He called it the little pool.

We had a couple of fun side trips. Friday we visited the Santa Ana zoo in Orange County just south of Anaheim. It's a small, relatively inexpensive zoo that was the perfect speed for us with the kids. There were two highlights of the day. The first was an elephant ride! We saw an elephant being walked through the zoo and followed it to a little round pen. For $20, all four of us got onto the elephant and walked around the round pen, stopping to pose for pictures along the way. The ride was very comfortable, especially compared to a camel which is very bumpy. Keri said "Ah, I can see why the maharajas liked this so much!" The other highlight was the Mina was chosen to go up onstage and be the volunteer at an animal show. It was part of a gag where they were talking about the national bird, while putting Mina in a raptor coat, hat and gloves. Of course, a bald eagle would be almost as big as she is, so the gag was that a turkey came wandering out while the lady told the story about Benjamin Franklin wanting the turkey to be our national symbol. Mina was thrilled about the whole thing and ran to give me a big hug when she was done.

Saturday we visited the Huntington Garden, which is a beautiful garden and art museum built up on the estate of an early 20th century tycoon. The garden was beautiful, and we actually got the kids to look at some of the art for a while. But the highlight of the day was watching the kids play "Rosaphina" for almost an hour while we sat and ate lunch. Rosaphina is the latest incarnation of the Mommy game where Mina is the Mommy and Isaac is the baby. Isaac is a girl named Rosaphina who is five months old. He talks baby talk, and Mina kisses his head and calls him "Sweetie". It fits the kids perfectly, because Mina is such a Momma, and Isaac is kind of a Momma's boy. As we were walking back to the car, Isaac said he wants to be Rosaphina all the time.

All in all, it was a great trip, and it was fun to see the kids connecting with the relatives. Of course, the relatives all dote on the kids, so they make it easy for the kids to relate to them. But as we were driving back to the house one night, Isaac said "Do you know what, Momma? Nicholas is my best friend! And then Mina chimed in and said "And Kennedy is my best friend."

Some good news on the medical front as well. Mina had her 6-month checkup appointment with Dr. Horn of the BMT team. Dr. Horn said that was she approaches three years out from transplant, the odds of relapse become "minimal", which is a great thing to contemplate. However, she did say that the concern now becomes secondary cancers, which she's at very high risk for given all of the chemo and radiation. Dr. Horn was thrilled that we were doing the neuro-psych testing, and said she's looking forward to seeing the final report, which she'll get a copy of. They also measured Mina at the 75th percentile on height. This is kind of a relief, because the endocrinologist had her at 50th, after she'd been at 75th for over a year. Also, Isaac is noticeably catching up with her, which obviously has something to with how tall Isaac is, but is a still worrisome. We still haven't received the result of the endocrine function tests, but it does seem like she's growing again based on her clothing, so that's a good sign.

Mina also had another pulmonary (lung) function test. She's had several in the past, and they've always had to sedate her and put her in a glass box to blow air into her lungs to test their capacity. This time they wanted to try and see if Mina could cooperate with the test well enough to avoid the sedation. They had a little computer image that would respond to Mina's blowing. Keri said Mina didn't respond too well to being the Big Bad Wolf trying to blow the pigs' house down, but she did great at blowing out the birthday candles and scored 100% on the test!

I finally had a chance to finish the spring/summer photo album, just in time to start feeling guilty about the fall pictures. You can view it here: http://picasaweb.google.com/arneolson/SpringSummer2007

Thanks for checking in!

Day +922: Great news and not so great news

Long time since the last post, mostly because of my crazy work schedule. My firm has a big project to help the state of California figure out how much it's going to cost to reduce its electricity sector greenhouse gas emissions to 1990 levels by 2020. Fun stuff, but we've been sprinting for about two months now and I'm seriously short on sleep and sanity.

But enough about me, on to the fun stuff: the kids! I'll start with the not-so-great news, so no one worries too much: Mina has "very slight" cataracts. This is a fairly common side effect of the radiation, and we certainly knew this was a possibility. The opthamologist said that there are a lot of things they can do now short of cornea transplants, but it's important to catch the problem early. He doesn't know if they are going to progress or just kind of hold steady, so he's just going watch things for now. He wants to see her again in four months. Not the news we wanted to hear, but we can live with this given some of the alternatives. He also said that Mina is slightly far-sighted, so he prescribed glasses for her. He was kind of on the fence about it, and he said she didn't need to wear them all the time, so we haven't been in any hurry to go out and buy them and make Mina start wearing them. We may just see what he says when she goes back.

Now, on to the great news: Mina did really well on her neuro-psych testing! Doctor Ambler started off by saying how much fun Mina was, and how she had charmed everybody on the floor. Then she told us her favorite Mina stories. One time Keri had given her a sugar cookie to eat during the testing, and it was sort of crumbling all over the table. Mina noticed it, and said to the doctor: "That's OK, you can just clean it up after I leave!" Her other story was that one time she was asking Mina if her teacher had taught her some specific thing (forget what exactly). Mina said "No. Actually, my teacher doesn't teach me very much." Doctor Ambler asked if Mina would like it if her teacher taught her more stuff. Mina thought about it a minute, and then said "Naah." Dr. Ambler was quite genuine in her enthusiasm for how much she had enjoyed Mina, so that part was very touching.

Then she went on to discuss the results. She basically put Mina through about 4 hours of standardized tests, similar to the kind that could be used to calculate an IQ. She didn't give us a total IQ number, but some of the scores were based on 100 as an average, like the scale for the IQ tests. Mina performed average to above average in nearly every area, and was well above average on the verbal portions of the test, between 119 and 137 on the IQ scale. I'm forgetting the details now, and we don't yet have the written report, but I believe the areas where she scored slightly below average were in things like pattern recognition and tests involving speed. Dr. Ambler thought that some of it might just be immaturity, i.e., Mina not really knowing that she was supposed to be focusing on scoring well. She was also very interested in the fact that Mina is far-sighted. One of the things she was struck by is how self-confident Mina is. She said Mina just charged right into the tests, and sometimes didn't take all the time she might have needed to do a careful job. But overall, Dr. Ambler was really thrilled with the results, given all that Mina has been through.

She also spent some time talking to us about what we might see in the future. There's no way to knowing how things will play out with Mina, of course, but she said the kids sometimes have problems in a few areas: math and spatial reasoning, doing things quickly, and doing things that require the integration of many different skills. The radiation basically kills off cells in the white matter, so that as the brain is trying to make a neural pathway to make a connection it might sometimes encounter dead zones and have to find another route. That's why it takes longer. If I'm remembering right, there is also more white matter in the right side of the brain, which might explain why these patients have trouble with math and spatial reasoning and integrating the specific skills into a useful whole. It's far too early to tell if Mina will have any trouble at all in these areas, of course, but it's useful to have a sense of what to watch out for and what to tell Mina's teachers. We also had a brief discussion about schools, and Dr. Ambler expressed her willingness to talk to Teacher Julie and perhaps even write a letter to the teachers and officials at Mina's grade school next year. It will be nice to Dr. Ambler in our corner. She was very pleased to be able to give Mina such a glowing report, and she wants to see her again in three years to check progress.

One thing Dr. Ambler noticed is that Mina was always dressed in some outfit that was very cute but also obviously of Mina's own choosing. Mina picks out her own clothes every day now, and has become very good at mixing and matching her dresses, shirts and leggings. She also is really observant about what other people are wearing. She made several comments to Dr. Ambler and her colleagues about how they were dressed. One day recently I wore a belt that I hadn't worn in a long time, and Mina noticed and commented right away.

Grandma and Grandpa came down for a week in October. We always have a nice time when they are here. The kids are excited to go in and wake them up every morning, and to have some playmates around the house. They fit in very easily and the kids are very comfortable with them, so it doesn't feel like a huge transition when they come and when they leave, which makes it really nice for us. We went on a couple of hikes, one to Mt. Tamalpais and one down to the beach in Point Reyes. Both hikes were over four miles, and the kids did great. I carried Isaac a bit on both days, but was able to talk him out of it by playing the "Zuckerman's Famous Pig" game (from Charlotte's Web), where we march around with Isaac in the front raising his arm up and down like the drum major, and me in back playing the air trombone. We must have marched like that for half a mile on Saturday. The other game they played on the hikes, and have been playing a lot again lately, is Mommie and Baby. Mina is the mommie, and Isaac is the baby. She's kind of a momma, and he's kind of a momma's boy, so they get along great. She calls him "Baby" and "Sweetie".

We also had Halloween. Ours was fairly mellow. Instead of going up to the neighborhood bash, which can be kind of crazy for the little kids, we went to a "fairy walk" at the San Francisco Waldorf School. They had people staged all throughout the school, dressed in elaborate costumes and acting out the Brothers Grimm fairy tales. It was very nice and relaxing, and it was great to see that people can get together and do something really creative and amazing. The whole thing was done by volunteers. Then we went trick-or-treating in the neighborhood around the school, rather than our neighborhood. We went to ten houses or so. Isaac wore his bat costume and Mina, of course, was a princess. I'm hopeful things will mellow out at work when our deadlines are over in a week or so, and I'll finally have time to finish the photo album I've been working on.