Day +388: More good test results

Mina Brigitta had an echocardiogram and an appointment with the opthamologist last week. All is good. The opthamologist said it was the best pair of eyes he'd seen all day, and the echocardiogram turned up nothing out of the ordinary. That's kind of a relief, because Mina Brigitta has had a lot of chemo that can damage the heart. In fact, they limit the dose of anthracyclines because of the possibility of heart damage, and Mina Brigitta has had her limit of them. So she will need to have echocardiograms periodically throughout her life. The opthamologist was checking for cataracts, which are a possible side effect of the radiation therapy, and GVHD, which can affect the eyes.

She still needs to have a neuro-psych evaluation, but UCSF doesn't currently have a specialist so we're evaluating our options for how to get that done. She also has an appointment in a few weeks for a hearing test, and they'll have to do a thyroid function test at some point. Then I think that will be it for the one-year checkups. So far so good. Mina did see Dr. Loh last week, who said she's not really going to relax for another year. We know about that reality, of course, but are doing our best not to think about it. The good news is that Mina is climbing the growth charts again! She's up to 60th percentile for height and 90th for weight. Sort of the opposite of her brother, but it's not like she has any fat on her. She's just as solid as a tank, is all.

Otherwise we're pretty much trucking along here in San Francisco. Megan, one of Mina and Isaac's babysitters, is out of school for the summer and working full time, so things will be tough for Keri for a while. Amber has also been busy since she got back from a trip to Ireland, so we're trying to figure out how we're going to get Keri some time.

Mina told Keri last week, totally on her own, that she wanted to go and visit the kids on 7 Long and bring them toys. So at the risk of temping fate, we're going to plan a trip up there sometime soon. We will probably have her bring pens and paper, since she enjoyed drawing babies so much while she was in there, and maybe she'll get to visit with one or two of the patients.

Isaac has picked up a new set of words. We listened to one of Mina's old CDs that starts off with a song that goes "Quack quack quack!" Isaac walks around the house all day saying "Quack quack quack!", frequently to the tune of Twinkle Twinkle Little Star. The only problem is that her can't say the "kw" sound, so he substitutes an "f" sound, which makes the phrase sound like something completely different. Keri's not quite sure whether to be amused or appalled, but since neither of us is in the habit of using that word, and certainly not in front of the kids, it's all in good fun.

This weekend we're going to Camp Okizu (http://www.okizu.org/), which is a camp in the Sierra foothills for kids with cancer. We are set for life in the camp department. As soon as she's 6, Mina will be able to go to a weeklong camp with only kids with cancer. Isaac will also get to go to a weeklong camp for siblings of kids with cancer. There is also a family camp, which is what we're doing this weekend. And it's all totally free. The kids are going to have an absolute ball. I'll have stories and hopefully pictures next week.

Day +380: Happy Mother's Day!

Mina Brigitta had another good test result this week. This one was from a speech and hearing therapist, who said she was listening, comprehending and speaking as well as other kids her age. We weren't real worried about it, but it's always nice to get the expert opinion. She's definitely paying attention, and she picks up little phrases that come out later on when she's talking to herself or to her babies. I think she grammar and vocabulary are pretty good, it's just that it's sometimes hard to understand her. One thing the therapist said is that we have to get rid of the binkies. We're strategizing about how to take care of that. Right now Mina Brigitta is excited to have the Mimi Fairy come and take away her mimis and leave her a big girl bed. She says she wants to go to sleep in her own room. I'll believe it when I see it, but we're going to try to go with it.

She and Isaac have been playing babies together a lot lately. Mina kind of let Isaac adopt the new "waah baby" that Kristy sent, so when Sissy has her waah baby, Isaac will say "Where my waah baby?" One of his games is to hold it in the rocking position and bring it over for you to look at. He always has a very solemn look on his face and he doesn't say a word, he just brings the baby over to show you. Then when you complement the baby, he brings it to the next person in the room. His waah baby must be a newborn. Both waah babies are still called Jesus. Sometimes Isaac will walk around saying "Where Jesus?" There's a lot of looking for Jesus going on at our house. Mina has also decided that Home Baby is Dadda's waah baby. So when she and Isaac both have their babies, sometimes she'll bring Home Baby to me and say "Here's your waah baby!" Keri still has the "Chad doll" she used to play with as a girl, so all four of us have babies.

We're realizing lately how much of a sensitive soul Isaac is. We went to a very windy and wide open beach when we were in Sonoma, and he didn't like it. He clung to Mama and was much happier when we got back to the car. It was calmer and less intense at Stinson Beach last weekend, but he still was clingy when we first got there and wouldn't go near the water. After about an hour there he started to loosen up, and then he had a ball running away from the waves. Mina had gone to the water right away. The interesting thing was that Mina was happy and secure as long as she was holding my hand. Isaac was only happy and secure when he wasn't holding my hand and was free to run in and out of the water at his own pace. Mina is very trusting of Keri and me, not that Isaac isn't, but just not in the same way. Hard to know how much is nature and how much is nurture, but Mina has had many occasions where she had to put her trust in one of us to help her get through hard times.

Then today we stumbled across a concert in the Stryling Arboretum in Golden Gate Park by a 40-piece band with brass, woodwind and percussion. Isaac loves music, but he didn't want to stay and listen. He cried and said "No music!" and wanted up with Dadda. Mina loved it, however, so we found a shady spot behind the band where it wasn't so loud and hung out while Mina wandered around staring at each band member. Isaac slowly loosened his grip and after half an hour or so, he started saying "More music!" whenever a song ended. Finally he was marching around stomping his feet during the music and clapping and saying "Yay!" at the end of each song. It was a scorching day in San Francisco, but we had a great time at the concert.

This weekend she's wanted to do nothing but dressing changes on her baby. All the dressing change stuff had been put away when she had her catheter removed a few months ago, and Keri just got it back out. Mina was very excited to change Waah Baby's dressing again. She puts on the mask and the sterile gloves and gets out the little wand of chlorhexidine to sterilize the site. She has some tubes that she tapes to Waah Baby's chest, and then she puts the dressing over them. Then she spends some time flushing the tubes, and then she takes the dressing back off again. Yesterday she had me hold Waah Baby in my lap just like I used to do for her. Isaac was hovering around as he usually does, but he had no idea what was going on. A couple of times I caught him looking at Sissy like she was some kind of an alien. Made me think about how none of Mina's friends is really going to be able to share this game with her. That's OK, she'll forgot about all of it eventually, and Keri and I can be her playmates in the meantime.

Unfortunately, she seems to have taken a step backward on her poddy training. Yesterday Keri and I let the kids get up by themselves for a few minutes. Big mistake. Mina came running in to have us come look at the poopoo on a plate. I didn't quite believe it, but came to investigate anyway, and sure enough, she'd grabbed one of her plastic Pooh plates, brought it into the living room, and did her business right there. Brings new meaning to the Poopoo platter. When I asked her why she did that, she said it was because she wanted to see Bubba while she was going poopoo, and he was in the living room so she couldn't see him from the toilet. She had two more accidents in the afternoon, and then today she didn't go on the poddy once, though she went into the bathroom before having her "accidents". I asked if she was scared of the toilet, and she said yes because there might be a mouse there who would come and bite her. This probably would all be funny if there weren't an undercurrent of tension any time there is a change in her behavior. Someday we'll get over that I'm sure, but right now we start to get nervous. She's been doing great otherwise, so I'm sure it's just normal little kid stuff. But I'm still glad that her monthly checkup is this Tuesday.

Still haven't gotten in contact with the donor. I just need to sit down and compose a letter, but it's hard to find the time when the kids need full-time attention until they're asleep, which frequently isn't until 10 PM! I hope to write him some time over the next few days.

Hope everyone had a great Mother's Day.

Day +373: And the donor is...

Sean Rodriguez, 37, of Staatsburg, New York. We got his name, address and e-mail address on Friday, and ours are being sent to him. That means he's given his permission for us to contact him, as we expected given the letter he sent with his stem cells, so our next step is to compose a letter and send some pictures. We can never thank him enough, of course, not least because donating bone marrow is supposed to be a very painful experience and one that is not without risks. But his generosity may just have saved our girl's life, and a part of him will live in her for the rest of her life. Keri thought maybe we should add another name to Mina's collection: Mina Brigitta Mae Rodriguez Olsen Olson.

Of course the first thing I did when I found out was google '"Sean Rodriguez" Staatsburg', and came across a couple of pages on the BBC website that he had somehow contributed some views to: http://www.google.com/search?hl=en&q=%22sean+rodriguez%22+staatsburg&btnG=Google+Search. I think we'll get along just fine. ;-) Staatsburg appears to be a tiny town on the Hudson River about halfway between New York and Albany. Keri had been speculating that maybe he was in the Bay Area, based on a comment someone at UCSF had made, but this probably explains why they had to wait until the next day to do the transplant -- they usually do it the same day the stem cells were harvested from the donor, but they weren't able to get the cells processed in time so Mina's transplant was the next morning. It will be very exciting to tell him the whole story. I suppose one of the first things we should do is send him to this blog.

Mina had the first of her one-year evaluation tests on Friday. This one was a pulmonary function test, where they sedated her, put her in a glass box, and pumped her lungs full of air to see how well her lungs are functioning. The test came back in the low-normal range, which the guy said was just fine. She was exactly average last time, so she scored a bit worse this time, but he wasn't worried as long as she's in the normal range. She has a bit of a cold, so perhaps that has something to do with it, or else it could just be testing error. There is some concern about long-term lung issues with GVHD and radiation (they do 50% lung shielding with total body irradiation because of experience with lung toxicity), but nothing to worry about for now.

Mina has a picture book about a little girl named Hannah who has leukemia that she got as a door prize when she was first admitted to UCSF. The book isn't exactly Caldecott Medal material, but Mina has always liked it for obvious reasons, and it has served its purpose. There's a scene in it where Hannah is waiting to take her "sleepy juice" for her MRI, and saying that she "did a good job skipping my breakfast that morning". I read that to Mina Thursday night to prepare her for Friday morning. It seemed to help, and today I caught her saying "I did a good job skipping my breakfast". Anyway, there's another scene in it where Hannah is bald as a cue ball, and Mina asked me right away: "Why no hair?" So I told her about strong medicines that make your hair fall out and asked if she remembered her hair being short while she was in the hospital. She said she did, and I promised to show her some pictures. She's such a big girl now, we're going to have to get ourselves prepared to really talk to her about her disease.

Today was another gorgeous day, and we spent another day at the beach. Mina is absolutely loving being able to dig in the sand again after so long. Saturday we went to the local playground, and the first thing she did was plop her butt down in the sand and start in with the shovel and bucket, and she wouldn't get up even to swing. Today she started off running around in the water and running away from the waves, squealing with delight when the wave ran back out over her feet. Then she spent two hours digging. Isaac wouldn't go near the water at first. He's funny, he seems to need some time in a new place before he totally lets go and enjoys himself. After an hour or so I finally got him near the water, and then he was running around giggling and squealing same as his sister. He kept pointing at the waves and saying "Big one! Big one!" Then he would say "Waves! Ocean!"

Keri was remarking that this is the first May where we've been able to play since being in the Bay Area. The last two years we were in the hospital of course, in 2003 we had a newborn baby, and in 2002 Keri was in Syracuse finishing the first draft of her dissertation. It's a beautiful time of year, a respite before the fog sets in. We have a very full schedule over the next few months, so we're definitely making up for the time we've lost over the last two and a half years, and so is Mina Brigitta.