Day +883: Street fair!

Exactly two years and five months since transplant day. Still looking forward to that three-year anniversary, but thankful that Mina is doing so well. She's getting to be such a big girl, very mature. There are only three four-year old girls and Mina's school this year, and she's never really been friends with one of them. Anika is her best friend now, but they only go to school together on Fridays. Mina has mostly been playing with herself on the other days, and was complaining about it a bit to Keri. Keri suggested that she ask if some of the younger girls would play with her. Mina thought that was a great idea, so now she's saying that she has some new friends at school. She said she never thought of that before.

Anika was able to come to school on Thursday this week because one of the other kids was sick, and Mina ended up going to her house for a playdate after school. She said they played dressup and princess and baby all afternoon. Isaac was sad that he didn't get to go, but he came home and built the train track almost all by himself (Keri helped him a little), and sat happily in the middle of it for an hour making his trains go around and around. Keri said Mina and Isaac were very excited to see each other when Mina got home. Mina ran right over to Isaac and asked him what he'd been doing all afternoon. He said "Nothing" and then proceeded to tell her about the trains.

Mina and Isaac were talking at breakfast the other day about their houses. Isaac said his house is far away from ours. But we can came to visit him and he will come to visit us. And we can stay for a week when we come to visit. Mina said her house is close to ours. It's so close we can walk. Knowing both of their personalities, I was thinking that this was probably a pretty accurate preview of how things will end up. I'll be curious to look back at this in 30 years and see if things really turn out that way. Isaac is also at that age where he is asking the funniest questions. The other day he asked me "Why do I have a head?" He's also been asking what would happen if he didn't have a head.

Isaac's birthday is coming up on Monday. Hard to believe he'll be three. Mina's third birthday was such a huge event, kind of a "coming out" party with the big extended family at Teri and Brent's. For Isaac, we're going to Train Town in Sonoma with Rich and Olgica. We're also taking along Bliss and Austin, Melissa's kids. Isaac doesn't care about having a big party, but I think the trains will be a big hit. I feel I've been more connected to him lately, and more able to focus on the both of them. Mina still does demand a lot of my attention, but the gender thing will be an increasingly important factor over the years. Isaac loves to watch baseball and football on TV, and he's always asking questions about it. "Why does the pitcher pitch the ball?" "Why does that man try to catch the ball?" "What does the umpire do?" He's still very into the garbage man. When Uncle Brent was here, he scooped up Isaac and ran outside while the garbage man was there so Isaac could talk to him. One day Isaac said he wanted to get in the garbage truck and drive away with the garbage man, and then we wouldn't have two kids anymore. But when I looked sad, he said that's OK, he would come back at the end of the day and be our son again. He's still filling up paper bags or plastic bags `with blocks and other "garbage" and heaving them onto our bed, which is his garbage truck.

Isaac has been getting lots of guitar time lately. His blue guitar pretty much broke down over the summer, so Keri bought him a new one a few weeks ago. He was very happy to have it, because he'd been missing his old guitar. Keri asked if we should get him a new one for his birthday, but I thought since he got the old for Christmas, we should just replace it and get him something else for his birthday. His new one is quite nice, much sturdier and with strings that can actually hold their tuning for more than a few minutes. It's a guitar you could actually play, though it would be pretty small for a grownup. He's way into other instruments too, and he loves doing the cello motion. He holds his left hand up in the hair and wiggles his fingers, then moves his right hand back and forth across his chest and says "What's this?" "It's a cello." Sometimes he says he wants a cello for his birthday. He tells Keri, "It's an IN-strument." He has also been saying he wants a fire truck for his birthday. Preferably one that he can ride on. That's actually been his most common request. But lately he's been asking for a banjo. (He's actually getting the fire truck, a wooden one with two firemen and a movable hook and ladder, but not one he can ride).

The banjo has been on his mind a lot because we went to the "Heart of Cole" street fair last Sunday! It's a one-day event held on two blocks of Cole Street, just a couple of blocks from our house. There were a couple of food booths, and lots of arts and crafts. Lots and lots of handmade jewelry, high-end but somewhat funky. Very San Francisco. The best part about it was the music. They had several excellent performers, and we listened to a lot of music. Rich and Olgica came into the city with Niko and Baby Lenka. I took Mina and Isaac down while Keri got some stuff done at the house. Then Keri picked up Mina to go to Bliss's 5th birthday party in the mid-afternoon, so I just had Isaac to watch. We had a ball. The first thing we did was sit down on the street right in front of a guitarist playing really excellent Delta blues. Isaac noticed right away that he was wearing finger picks and was picking his guitar rather than strumming it. Isaac asked several times "Why is he not going like this?" while doing a strumming motion, and "What is he wearing on his fingers?". He also was playing slide guitar -- pressing the strings with a little round plastic device on his left hand and sliding it up and down the frets rather than making chords -- so of course Isaac was asking about that. Later on we saw a big bluegrass band complete with fiddle, banjo and upright bass, and a three-man band with guitar, fiddle and banjo. The best part of all of it was that the performers were standing right there on the street, so we could literally watch them from a few feet away. At one point later in the afternoon the adults had decided that we would head for the playground, but on our way out, we saw the three-man band and stopped to watch them for a while. I decided I didn't want to rush Isaac to the playground if he was happier watching the music, so I just asked him what he preferred to do. He said he wanted to stay there and watch the music, so I was happy to oblige. I don't want to force the music on him if he wants to do something else, but I figured he can go to the playground any old day, but he can only watch live bluegrass on Cole Street once a year. Niko was happy watching the band too, and in fact he fell asleep on Rich's lap, so it all worked out.

So today I took Isaac down to the music shop on Haight street and got him some finger picks. I'm not sure how well they will work on his little fingers, but he's very excited about them and he spent half an hour or so after we got home picking his guitar. It will be a long time before he really figures it out, but he had already learned how to make a good strumming sound using the thumb pick.

Day +873: Back to school and a big day for Keri

Lots going on these days. Keri wouldn't want me to make a big deal of it, but she and Teri turned 40 on September 9th. I felt kind of bad, because both Teri and our friend Melissa, who turns 40 today, had surprise parties. Keri told me in no uncertain terms that there was not to be a surprise party for her. We were up at Camp Mather, and her desire was to leave that day by herself and spend the evening with Melissa. So she took off that morning (Sunday) and the kids and I came back late the next day. She said it was a nice birthday, but it probably wasn't all that exciting for such a big one. Melissa's husband Casey threw her a big surprise birthday bash on Saturday at a winery in Napa, which we attended. Teri and Brent flew down for it, so we got to spend some time with them as well, which was really nice. They flew down Saturday morning and back up Monday night, so we had a couple of nice days together. We really don't see them, or their kids, often enough.

We had a great time at Camp Mather. It's kind of a luxury summer camp for the whole family. It's run by the City of San Francisco, and I'm sure its origins had to do with the construction of the Hetch Hetchy dam and reservoir just down the road, which is where San Francisco gets its drinking water. The camp is located just outside the entrance to Yosemite, about a four-hour drive from San Francisco. We slept on uncomfortable beds in a very old cabin, but the food was great for camp food: teriyaki salmon one night, tri-tip the next night, pancakes or eggs for breakfast. Even the coffee wasn't terrible. We mostly followed the same pattern: get up and do something near the main part of the camp during the morning, and then go down to the lake in the afternoon when the weather warmed up to over 80. The kids made tie-dyed shirts, rode on a burro, swam, dug in the sand and caught pollywogs all weekend. One of the parents wielded the net, so each kid caught plenty of pollywogs in his plastic bucket. But only Mina put some dried leaves on the top of the water for a roof for the pollywogs' "house".


Isaac preferred hanging out in the other section of the lake next to the lifeguards, where there was more activity. There was a little dock that people would come to jump off. He called it his boat. He enjoyed chatting up everyone who came by. It was actually kind of a nice way for me to make the acquaintance of lots of other campers. The other thing Isaac enjoyed doing was playing baseball with the grownups. I bought him a little foam rubber bat and ball for the weekend, and he was thrilled. He carried the bat with him all weekend. One day some of the other NPG dads and I were having some batting practice in the main camp area. Isaac was watching very intently, asking everyone lots of questions, and was being a "fielder". He knows that the pitcher pitches the ball, the batter hits the ball, and the fielder catches the ball when it comes down. That weekend he learned that the catcher is the one who crouches behind the batter and throws the ball to the pitcher when the batter misses it. He's still not real clear on what exactly the umpire does. He said he liked it best when he and I were both the fielders. Another exciting thing that happened was that a crew came to fix one of the outdoor lights. This was on Monday, after all of the other campers had gone home. They brought a cherry picker and a crew of four to fix the light, so of course we had to stop and watch that for 45 minutes. The men were all kind of busy to talk to Isaac as much as he is used to, but it was still quite a thrill for him to watch.

One thing that was pervasive in the camp was dust. The area doesn't really get any rain during the summer, so the dust gets pretty thick by the end of the summer, about 2-3 inches in most places. Mina refused to wear shoes all weekend, so her feet were totally black from the mid-calf down. It's crazy to think just a couple of years ago we were rubbing all of her toys with alcohol if they even touched the floor of the hospital room.

Speaking of UCSF, the pediatric oncology service had its first-ever "Celebrating Our Heroes" picnic this last Saturday. I didn't think we'd be able to attend, because we had a mandatory parents' meeting at NPG in the morning, and we were heading up to Napa for Melissa's party in the afternoon. But it worked out at the last minute for me to take Mina brought her friend Anika, whose parents were at NPG. The picnic was in a big tent at the zoo, but we unfortunately didn't have time to see the animals or ride the train or the carousel. I had to promise the girls I would take them back there. Amber and Dr. Loh were the first two people we saw, and they both gave us big hugs. We saw several other doctors and nurses, and they were all just thrilled to see how good Mina looks. Dr. Matthay, who is the director of the oncology program and was the attending physician on Mina's transplant day, got teary when she saw Mina. Mina and Anika got their faces painted with matching pink butterflies, and everyone told us they were the belles of the ball. UCSF had hired a couple of professional photographers, and they were like the paparazzi when the girls were done with the face painting. Flash bulbs going off everywhere. Dr. Loh emailed us one of the pictures, which I put as the profile picture for the blog, and we've been promised access to the others. I'm working on another album, so I hope to have some great pictures posted soon.

The other medical news is that Mina had an appointment with the endocrinologist today. This was a scheduled follow-up from her two-year transplant anniversary. Mina is at risk for all kinds of hormone and endocine problems, but the doctors said her dose of radiation wasn't really that high (compared to what, I wonder?), and that something like 75% of the problems show up in the first six months after receiving irradiation, and 15% in the next year or so. There is no reason to suspect that Mina has any problems at this point, but they ordered a bunch of blood work just to see what turns up and to get a baseline. They also ordered an X-ray of Mina's hand to test "bone age". The only thing that is a little concerning is that Mina's height and weight are now closer to the 50th percentile than the 75th, because she hasn't grown much in the last several months. Hopefully she's just waiting to have a growth spurt, but that's something we'll be watching carefully over the next couple of years. One of Mina's babysitters -- just by chance -- has an older sister who had ALL as a child, and had total body irradiation and a bone marrow transplant. Her sister is 5'2", when everyone else in the family is at least 5'8". Keri is planning to take Mina up the hill in the morning, so hopefully we'll have some results within the next week or two.

Day +860: Readjusting

Family's been home for a little more than a week now, and the readjustment period continues. Mina has been having kind of a hard time -- crying easly, needing lots of attention, not listening very well, not treating her brother very well. I think it's mostly just the transition. School doesn't start until next week, so right now there's no schedule and no sense of routine at all. Plus she's been tired, of course. She doesn't usually nap anymore, and we can never get her to bed early enough. And she really falls apart when she's tired. She becomes like a different person. To top it all off, work has been really crazy so I haven't been able to take any extra time off to help ease the transition. I think it's hard on Mina when I'm not around, so it hasn't been easy leaving the house in the morning.

She seems to be quite healthy though, so that's the good news. She had to get a physical for school this year. It's a bit of a joke -- no kid has been as closely monitored by physicians as Mina has, and I mean every aspect of her anatomy and her development, by all kinds of specialists. Yet she has to have a form filled out by her general pediatrician. But Keri said it was a nice chance to see Dr. Aicardi, who is of course thrilled with how Mina is doing. The physical form said that Mina had no medical issues "that were relevant to the school." It then went on to casually mention AML and a bone marrow transplant. If Dr. Loh or Horn had filled it out, they would surely have mentioned the Grade IV GVHD as well. Keri was getting a kick out of Dr. Aicardi's matter-of-fact language on the form, though. She did mention a possible issue with one of her eyes. Seems she misidentified one of the forms she was supposed to see with one eye. Sounds like eye tests are kind of hit-and-miss with 4 year- olds anyway, but that will be something to watch for.

Isaac took a few days to get back into the groove as well, but he's back in full swing now, playing garbageman and street sweeper and any other adult he sees doing something interesting. He talks a lot about getting a ladder and getting up onto the roof, because he saw Uncle Bill doing that. And he saw the garbageman pull some garbage bags out of the neighbors recycling bin and throw them onto the truck, so now he's putting bags into other bags so he can take them out and throw them onto the bed, which is his garbage truck. He was happy to see his musical instruments, and he's spent a fair amount of time playing songs with them and singing. He sings whole sings, walking around the house as he does it. Sometimes I recognize tunes from songs, but usually the words are unintelligible. Lately he's been marching around the house using a stick as a baton and moving it up and down, singing his own rendition of the "Zuckerman's Famous Pig" song from the old Charlotte's Web DVD that Lyn bought us. He misses his guitar, though. It broke while we were on the way up to Washington. I tried to fix it at Auntie Teri's house, but then it got left behind in their garage. We're going to get him another one anyway.

The other day we were talking about the Washington trip, and I asked both the kids what their favorite part of the trip was. I thought for sure both of them would say Uncle Bill and Auntie Kristi's house, Mina because of the kitten and the other animals, and Isaac because of the digger and all of the work that was happening there. But to my surprise, Isaac said "Auntie Teri's house!" When I asked him why, he said "Because I LOVE Auntie Teri ... and Bella." Mina said her favorite part was the two hours when we stopped in Portland and saw her friend Anika. That girl just loves her friends so much. And Anika was totally thrilled to see Mina too.

We're heading up to Camp Mather for the weekend. It's a camp run by the City and County of San Francisco, up in the High Sierras near Yosemite. It's supposed to be pretty fabulous, in an organized camp kind of way. Keri and the kids left today, and I'm heading up Thursday or Friday, depending on work. Should be a lot of fun. We're just hoping it will be worth yet another change in the routine. Thank goodness school starts next week!