Day +416: Happy Father's Day!

We had a pretty mellow day today. Keri got up with the kids today, and I slept in until 9:30! Can't remember the last time I did that. Isaac took an early nap, and then we all went for a walk together down at the Styling Botanical Garden in Golden Gate Park. The kids had fun playing near the fountain, watching the turtles and carp in a large pond, and climbing on rocks. Mina is becoming quite the climber and is a good walker. Her running and jumping are improving, though I think she's still pretty far behind in those areas. They had a lot of fun today, though.

Yesterday we went to the first-ever UCSF Bone Marrow Transplant Survivor's Picnic. It was in interesting experience. We didn't get as much opporunity to speak to the other parents as we would have liked, but the stories we did hear were quite interesting. There was a little girl there who was having her transplant when Mina was in the hospital. She's just about the same age and same size as Mina. They used to interact through the window when Annabella would roam the hallway, but Mina Brigitta was always neutropenic and couldn't go out. Their first opportunity to interact in person was in the walk-in clinic. It didn't take them long yesterday before they were walking around hand-in-hand. There were a couple of people there who had been transplanted 20 years ago, so that was very nice and reassuring to see them there.

Dr. Horn gave a talk on late effects for BMT patients, and it was a bit sobering. We're already pretty familiar with the literature, but somehow I hadn't realized that more than 50% of patients who received total body irradiation end up "short-statured", i.e., at the 10th percentile or below due to a lack of human growth hormone (HGH). Synthetic HGH can be prescribed (and not just for Major League baseball players), but studies appear to show a slightly elevated cancer risk from use of HGH. Secondary cancers are another serious problem -- the rate at 10 years is 4%, but it rises to 11% at 15 years out, which is where the data currently ends. Treatments have been adjusted somewhat since that first generation of BMT patients, but this is still pretty scary. We also learned that the pregnancy rate for female BMT survivors is something like 1%, so it's not out of the question for Mina Brigitta, but highly unlikely. The data on neuropsychological effects was more reassuring, however. It showed some very small effects on average IQ scores, with somewhat greater effects on spatial reasoning. Unfortunately, just about all of the effects were more severe for patients that were less than three when receiving radiation treatment. No telling what's in store for our Mina Brigitta, of course, but it helps to know what to watch out for.

It was good to see Dr. Horn and Dr. Cowan. I hadn't seen them in months. Mina really likes Dr. Cowan; when she saw him she squealed and ran over and gave him a big hug. He's a very kind man, and I'm sure that must be very gratifying for him. Dr. Horn made some mention of how tense things were with Mina at this time last year. Guess it made an impression on her too!

The kids are growing up and their interaction is becoming more challenging. Isaac now has his own preferences about how things ought to go, and Mina is, shall we say, not always very accommodating. Mina is becoming a bit of a challenge, actually. She's still very sweet, but she's becoming more headstrong and now will challenge us directly when we ask her not to do something. Everyone thinks she needs more exercise and stimulation than Keri can provide for her in our little flat. This summer should be good for her, and she'll be starting preschool three days a week in the fall. She's definitely ready for that.