Mina Brigitta's Hospital Blog

Daily entries chronicling Mina Brigitta Mae Olson's battle with Acute Myelogenous Leukemia

Tuesday, November 28, 2006

Day +578: Thanksgiving stories

Hope everyone had a happy Thanksgiving. We spent ours with our good friends Rich, Olgica and Nikola in San Leandro. They do a gourmet Thanksgiving feast every year, and they usually have a houseful of guests. This year, with the kids being so young and such a handful, it was just our two families. But they still made the full gourmet meal, and wouldn't let us bring anything. We had a great time. And the kids get along really well. Niko is only three months older than Isaac, but at this stage he's actually more friendly with Mina, who I suppose is more entertaining.

We spent the night there, and then headed down the coast to Monterey in the morning. Keri's stepmother Tutu and her husband Richard were driving up to northern California from their home in Laverne, so we met them at a great seafood restaurant in Monterey and they went with us to the Monterey Bay Aquarium in the afternoon. We still have a membership to the Aquarium thanks to Kari and Steve, and the helpful folks in the membership services department who agreed to extend it for a year after Mina relapsed. The kids had a lot of fun, but the place was totally mobbed so it was a bit stressful for the adults. I was glad there were more adults than kids. Mina and Isaac got to feel starfish, sea cucumbers and other creatures in the touch pools. Mina is now beginning to be aware of monsters and other scary creatures, and she was a bit worried about the sharks. She said the part she liked best is when they fed the tunas, barracudas, and other large fish in the "Outer Bay" tank. It really is quite an awesome sight to see a 600-lb tuna zooming through the tank gobbling up everything in sight.

There was a Christmas tree lighting ceremony on Cannery Row Friday night that was starting right about the time we left the Aquarium. It was pretty low-key, so we went and planted ourselves right near the stage. The first performer was a very talented woman singing jazzy Christmas songs to a soundtrack. Mina was standing by herself right in front of the stage, watching intently, and the woman couldn't take her eyes off her. She kept smiling at Mina, and in between songs she'd make comments like "you're darling!" After she finished, Mina went right up to her at the side of the stage, they chatted for a while, and the woman gave her a big hug. The final person to come on stage was Santa Clause himself, who did the countdown for the tree lighting. Afterwards, Santa was making his way over to the booth where he was going to greet the kids, but he stopped to say hello to Mina. He asked how she was doing, she smiled shyly, and he touched her cheeks and said "You have a beautiful smile!"

Isaac continues his guitar jones. He still asks to go to Cheryl's house (sometimes still mistakenly calling her "Christy") and says he doesn't like our house. The teacher at their music class plays guitar, and Isaac always mentions that now when he talks about music class. We stopped at the beach on the way back from Monterey Saturday afternoon, and Isaac could not resist playing guitar by plucking the stabilizing rope for the pole of a volleyball net. We waited for a few minutes, then finally went and put our blanket down while he played "guitar", sang, and clapped his hands. His concert must have lasted 15 minutes, even though the rope wasn't actually making any sound.

We had an occasion to touch base with the BMT doctor on call on Thanksgiving Day -- I noticed that Mina felt warm when I went to bed late Wednesday, and it turned about she had a fever of 101.7, or 39 degrees Celsius. She was down 99 or so in the morning, but back up to 100.5 Thursday afternoon. In the old days, we were supposed to call in whenever she had a fever higher than 38.3, which generally resulted in a trip to the ER and a blood draw. This time we weren't sure what to do, because she's been off all of her drugs for so long. We finally decided it didn't hurt to call, and our old friend Dr. Goldsby was on call that day. He told us just to watch her, and to call back if her fever wasn't gone by Friday, then he called us back Friday when he hadn't heard from us just to make sure. We had our moments with Dr. Goldsby on the floor, but he's a very dedicated, caring doctor. Luckily, Mina's fever was totally gone by Friday, and she was never acting sick at all anyway, so we stopped worrying about it. It did give us the occasion to remark that this was her first fever since February or March, despite the fact that she's been in preschool and been exposed to all the germs that all of the kids bring in. Her new immune system must be a pretty active one, luckily for us! Thanks, Sean Rodriguez, whereever you are!

In other medical news, Mina is continuing with her vaccinations. This month she got a polio shot, and Keri said she was such a big girl that she didn't sit on Momma's lap and she didn't even cry! And when Momma put her arm around her, she asked "Why did you do that?" When it was all over, she wandered around the doctor's office like she owned the place (even though it was the pediatrician's office, not the BMT/Oncology clinic), checking things out, poking her head into the other examining rooms, but always in a way that they weren't worried she was going to get into something she shouldn't. Isaac, on the other hand, sensitive boy that he is, started to wail as soon as he came in the door of the doctor's office and didn't stop until after they left.

Thursday, November 16, 2006

Day +567: Musical adventures

I continue to be amazed at how much my son loves music. He has ever since he was a baby, but I keep waiting for his interest to sort of peak as he gets older. When his favorite "Music Together" CD comes on he just stands in front of the stereo and sways back and forth. He knows some of the words to the songs -- he can't sing them all yet, but he sort of mouths the words and then he sings the closing word of each line. And sometimes he'll glide around the house hopping gracefully up and down, singing and clapping his hands in a kind of rhythm.

Tonight there was a song on the stereo in 3/4 time, and I was clapping in a ONE-two-three ONE-two-three rhythm, and it really seemed like he was close to getting the rhythm down. Yesterday Keri visited a friend's house whose child has a guitar. Keri said Isaac would not leave the guitar alone the whole time they were there, and he was kind of upset about leaving the house because of the guitar. Then this morning at breakfast Isaac told me spontaneously that he wants to go back to Christy's house. Then he proceeded to say "I don't like this house". When I asked him why, he said because there's no guitar here. He talked about the guitar intermittently all day long, even telling Meghan the babysitter about it. Needless to say, we've put a guitar on his Christmas list this year. Keri and I will probably try to find a used guitar one somewhere.

I kind of knew he would like a guitar, because he and Mina had really been enjoying strumming a rubber band that was stretched around the handles of her baby stroller. We took the kids out for a walk in Golden Gate Park while Grandma and Grandpa were here, and ended up in a sculpture garden at the DeYoung Museum. Grandma and Grandpa and I sat on a bench for probably 20-25 minutes while Mina was up in a little tree, and Isaac was strumming that rubber band and singing. Climbing is pretty much Mina's favorite activity, and singing is definitely Isaac's.

The thing I wanted to note about Mina is how much she loves her school. I thought maybe she would get tired of going as the novelty kind of wore off, but that doesn't seem to be happening at all. She goes on Tuesdays, Wednesdays and Fridays, skipping Thursdays so that Keri doesn't have to get them up and out early the day after she teaches until 10 PM, and so that Keri can see them after spending so much time early in the week prepping for her class. Anyway, yesterday Mina was disappointed that she wasn't going to going to school that day. That got us thinking maybe she's ready for four days a week. One day a few weeks ago when I dropped Mina off for school, one of the other parents came up to me as I was just about to head out. She pointed out to me that Mina was in the middle of a circle of girls and they were all arguing about who got to be Mina's "cousin". Little socialite. She and Isaac spent Wednesday evening at Kaaren's house while Keri taught and I was at a meeting in Idaho. She saw her friend, Kaaren's granddaughter Michaela, for the first time in quite a while. Kaaren said Michaela was so excited she gave Mina a great big, long hug. Michaela was Mina's first real friend that she made all on her own while they were both going to Kaaren's, and Mina really missed her when Michaela started going to preschool instead of to Kaaren's house, so it's nice that they got to see each other again, and that they still played so well together.

This blog seems to have devolved into a bragfest about the Olsen-Olson kids, sorry about that. I suppose it's better than the alternatives.

Sunday, November 05, 2006

Day +555: Halloween pictures!

I know it's been forever since I posted any pictures of the kids, but our friend Christine helped make it finally happen. She was here last weekend and had a digital camera, so she uploaded her pics to my computer before she left, and I just went through quickly and made a photo album. Here's the URL: http://picasaweb.google.com/arneolson/102006Small.

The first pics are from our trip to the Sonoma Coast, around Jenner, California. The rest are from Halloween. There's a street in our neighborhood that has a big bash every year. Almost every house does something spectacular, and kids come from all around, so many kids that it's almost shoulder to shoulder. You can't lose sight of your kid for an instant, or you might not get them back. It was all a bit overwhelming for Isaac; he was pretty solemn-faced for most of the night. He said he had fun, though. We didn't really have a costume for him, so Keri just put on an apron and a stocking cap and his Halloween themed sweater from Suzanne. It didn't matter much to him anyway. Mina dressed as a fairy princess. She had said a few weeks ago that she wanted to be a leaf or a tree, which Keri was pleased about. But later she changed her mind and wanted to be a princess. Keri was wondering how she even knows what a princess is, but I'm afraid we can't escape the 21st Century that easily. Mina loved going up and getting candy, not for the candy itself but just for the experience. She wanted to linger at every house, and she didn't want to skip any, either. She could tell at a glance which houses had candy and which ones didn't.

Grandma Judy and Grandpa flew in Thursday and are staying until Tuesday morning. The kids have been having a great time. The kids are old enough now and have spent enough time with them that the kids gave them big hugs when they first arrived and haven't wanted to leave their sides. Grandpa has even been reading the goodnight books! Mina still wants Daddy to lie down with her until she's asleep, but Grandpa filled in on Saturday when Keri and I went out for a date. The kids had been cranky and hard to deal with on Saturday so we were a bit worried about them. But Grandpa said they were on their best behavior and didn't shed a single tear. Keri and I don't get many dates, so it was very nice to get out on our own, even if we did end up going to the bookstore.

The kids have learned to say "I love you!", and they got a lot of positive feedback for saying it, so they say it a lot. Isaac especially. Sometimes he comes up to you and says "I love you too!" It's very endearing, even if you know they're doing mostly because of the feedback. The other day Mina told Keri that she loved her, and Keri said "Why?" (turning Mina's favorite question back on herself). Mina thought about it for a minute, and said "Because you are kind."

Mina has been very sweet and thoughtful lately too. The other day Meghan, their babysitter, had made blueberry smoothies and there was some left in the fridge. Keri was at her class, so I had the kids alone. I poured the rest of the smoothie into our glasses. Isaac and I drank ours up, and Mina had about half of hers left. She said something about wanting to save some for Mommy. I told her the smoothie was all gone, and there was none left for Mommy. She got really upset, and began to cry because she really wanted to save some for Mommy. I asked if she wanted to save what was left in her own glass, and her face brightened. So we took her glass to the fridge and put it there for Mommy to drink when she got home. Mommy was very touched.

Another time, Keri's friend Liza had us over for brunch, and as we left a little book and a slinkie that belonged to Liza ended up in Mina's backpack. She was very upset a couple of days later when she discovered Liza's things in her backpack. Again she started to cry, and was wailing "I want to go back to Yiza's!" She finally got calmed down when we told her that Liza has other toys to play with. But she still didn't feel right until we got Liza's stuff back to her.

Mina had a doctor's appointment on the 31st, which went well. Dr. Loh noted the 18-month anniversary, though she's not relaxing yet. Mina has had a red rash in her groin area for months, and we've been trying to treat it with antifunghals. It seems to help sometimes, but it had never gone away completely. Dr. Loh said it could be a little GVHD, and prescribed 0.5% hydrocortisone cream. It cleared up in about a day and half! I don't know if that means it's GVHD for sure or not. We're still using the hydrocortisone, so we don't know if it will stay away when we stop it. It's pretty common to have minor skin rashes related to GVHD that are controllable with steroid creams. I don't know if there are any therapeutic benefits to GVHD at this time or not, but I'd rather her not have to deal with it at all if possible. Otherwise things are going fine, which we continue to be extremely thankful for.