Mina Brigitta's Hospital Blog

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

Wednesday, September 27, 2006

Day +516: Another uneventful appointment

I took Mina to clinic this morning to see the bone marrow team. It was the first time they'd seen her in three months, so Dr. Cowan gave her a good going over. She checked out just great. She's been getting noticably taller and many of her clothes no longer fit her. Today she clocked in at 3'3" and 40 lbs. Dr. Cowan plotted her on the growth curve, and she's between 75% and 90% on both height and weight! This is a great sign that maybe she'll continue to grow normally without needing supplements of Human Growth Hormone. We also got back the results of her most recent round of blood tests, and all looks good! She's still 100% donor, and her immune functions are normal. This means it's time for her to start getting immunized, so Dr. Cowan gave us a schedule of more than a dozen shots that she'll need to get over the next few months. With Mina in school and the flu season coming up, I know I'll feel a lot better when she's well into her immunization schedule.

Mina is progressing in other ways as well. I'm pretty sure I was a lawyer as a kid, and I've started noticing some of those tendencies in Mina as well. On Saturday we took the train to the Duboce playground, and I was planning to push them back home in the stroller so they would chill out in preparation for their afternoon naps and so I could get some exercise. Mina would have preferred to take the train back, and made her feelings known. I had to push the stroller up a steep hill where there were steps cut into the sidewalk, so I had to push the stroller on the street. Mina wondered why I didn't push the stroller up the steps. When I explained to her that the stroller wouldn't go up the steps, she said immediately that this was why it would have been better for us to take the train instead.

She's been enjoying school, but the school has still been meeting at the park while the final inspections are done on the construction that took place over the summer. They're finally in the regular school this week, so Thursday will be Mina's first day there. There was a work party on Saturday that Keri attended, and she said the school room is looking great.

A few stories: Mina has been going to sleep on her own sometimes lately. I'll lay with her for a while, but then I'll make an excuse to get up and if she's tired enough, she'll lay there by herself. Occasionally she'll get up and come bring me back into the bed, but she's been really great about it. But of course, sometimes she really wants her Daddy to lay with her. The other day I asked her as I was putting her to bed if she wanted me to lay with her for a little bit. She thought about it for a minute and said "No, a lot of bit!"

She bumped her foot the other day and wanted a bandaid. I got one out of the closet, and while I was fumbling trying to get it open, she got impatient, took it from me and said, "Here, I will show you!" She is the true bandaid expert, no doubt about that. This morning at the clinic she immediately wanted to get into the drawers under the examining table. I said I didn't think she was supposed to be in there, but she opened the drawer anyway and got out some bandaids. She knew exactly where the good stuff was.

She's been drawing a lot, and also "writing", where she very carefully makes zigzags all across the page. The other day Keri asked her what she was writing, and she said it was a birthday card for Keri (she'd just been at her friend Bliss's 4th birthday party). She told Keri that the card said "I hope you will live until your next birthday."

Isaac is also growing up so fast. He's at a very fun age these days, because he's old enough to do lots of things on his own, he communicates real information verbally, and he's not anywhere near as needy as he was when he was littler. And, he's not yet at the age where he's being defiant. Just very sweet and fun to be around these days. He still loves music, and the other day there was some music playing during the early evening when he was pretty tired and actually in kind of a zone. He was dancing around to the music, holding onto a tambourine with his left hand and beating it with a short drumstick which he held in his right hand. He would move the tambourine back and forth across his body, beating it once on the left side, then on the right, then on the left, etc., all the while moving his feet to the music as he slowly made the circuit from the living room to the foyer, to the kitchen, and back to the living room. It was really quite a sight. He wasn't exactly moving in rhythm with the song, but his dance was quite rhythmic in its own way and he looked very graceful and light on his feet for a not-quite-two-year-old.

Mina's teacher said there will be a spot for Isaac in the school within the next couple of months, which basically means as soon as we can get him potty trained. He's showing some interest, but that doesn't necessarily mean it's going to happen any time soon. It will be nice for them to be in school together. Mina says she misses him when she's in school. Today we got home from her appointment around 10:00, so we gave her the choice whether to go to her school for the last couple of hours or go join Isaac at Kaaren's house, and she chose Kaaren's house because she wanted to be where her brother was. It's nice that they're attached like that.

Saturday, September 16, 2006

Day +505: Preschool and a New Baby

Day +500. Didn't really think about that one until I typed it into the subject line, but it's a nice number. Day +100 was of course the big marker for being past the immediate, treatment-related issues, but we haven't really noted the subsequent century marks. We'll be celebrating the anniversaries from here on out of course, though Day +1000 might be a big one.

The biggest milestone of the past week was Mina Brigitta starting preschool! She's going three days a week, on Wednesday, Thursday and Friday. She was pretty excited about it. Not hyped up, but just ready in a deep way. She'd been playing school for several weeks, which she probably learned from her friend Mikaela, and she'd been talking a lot about going to school. She was hilarious when we drove her to her first day. We asked her if she would be sad or lonely, and she said "No, there will be other kids there. And the teacher." We asked if she wanted us to come inside with her or just drop her off, and she said we should just drop her off, she didn't need us to come inside. In fact she volunteered that a couple of times on the way: "You can just drop me off. You don't need to come inside. There will be other kids there."

As it happened, they met at a playground on the first day, so I pushed her in the swing for a few minutes while Keri chatted with other parents. Mina was swinging next to another three-year-old named Maddy, and they were giggling at each other. When we left, Mina ran over, gave me a kiss on my leg, and then ran back and she was climbing up one of the structures side by side with Maddy as we walked away. Julie, the teacher, says she's doing great, it's as if she'd been doing it for three years. We knew she was ready, but it's so fun to see how much she's enjoying herself there. She's becoming such a big girl.

We're still waiting for a spot to open up for Isaac. There are already too many two-year-old boys at the school, and I can understand not wanting to have too many. Still, Isaac is such a gentle soul, I don't think he'd add too much to the craziness. We're hoping to get him into the school by January. He went to Kaaren's on Wednesday and Friday, and that will probably continue as that will give Keri some time to prepare her lectures.

Waah Baby has not turned up, despite several phone calls and a trip down to the restaurant in the Marina District. Mina has dealing with it pretty well. She's been saying things like "I don't know where my baby is. But she's somewhere in this house." Or "Waah Baby's not lost. We will find her!" But there have been a few moments where she's cried because she wanted her baby. The other day she was holding Isaac's Waah Baby, and Isaac wanted him back (according to Mina, Isaac's baby is a boy). Mina cried, and when I tried to give her home baby, she said "I want one like that!" pointing to Isaac's. It must have just felt right in her arms. At that point Isaac said "Here you go!" and gave his to his sister. It was a very precious moment, but the baby still belongs to Isaac.

Today Mina went to a birthday party for her friend Bliss. It was a princess-themed party for about 12 girls, and Mina looked adorable in the little pink princess outfit. She was thrilled about it herself, although she's not really sure what a princess is, not having been exposed to much Disney. Evidently Bliss was the only girl who refused to dress like a princess, which is really more princess-like than if she *had* dressed up. Keri dropped her off and went to run errands, but she heard that Mina was adorable and she had a ball. While Keri was running one of her errands, she happened to come across a brand new baby doll by the side of the road. The baby was crying for its momma, so Keri rescued it and brought it to Mina to take care of! I talked to them on the phone as they were driving home, and I could tell Mina was pretty thrilled about the whole thing. She named the baby "Tada" (pronouned, TAH-duh), which is one of the nonsense names she uses for a variety of people whose names she doesn't know, and she didn't let it out of her arms all evening. We still miss Waah Baby -- *I* still miss Waah Baby -- but it will be nice for Mina to have another baby to play with.

Thursday, September 07, 2006

Day +496: Goodbye Waah Baby, Wherever You Are!

Hard to believe this could happen, but Waah Baby has gone missing and it doesn't look like she's coming back. Keri and the kids met Amber at a restaurant in the Marina District on Tuesday, and Mina brought Waah Baby with her to say hi to Amber. Amber was taking the kids from the restaurant so Keri could work on her lecture, and in the confusion Waah Baby got left behind. By the time they figured out what had happened, it was already evening and they hadn't seen Waah Baby at the restaurant. I ended up driving down there late Tuesday night in the hopes of spurring a more thorough search of the restaurant, but to no avail. I called back and talked to the manager on Wednesday, and he remembered the group and had helped clean up the tables, but hadn't seen a baby doll. He's aware of the importance of the situation and said they would call if she turned up.

I was worried this would be a really difficult situation, but Mina is actually handling it very well. I think Keri and I are more upset about it than Mina; we're actually sick to death about it. Waah Baby was like a member of the family, with all she had been through with us. All that time in the hospital, all the tape and tubies and wires that had been sticking out of her at various times. Even though her voice was gone and she was black on her front from all the tape and bandages that had been put on and off, she was still Mina's baby, and Mina loved her like a real baby. The new Waah Baby that she got for Christmas last year has become Isaac's Waah Baby, and she gave me the American Girl doll that she got a couple of years ago that she named Home Baby. Keri still has her "Chad Doll" from when she was a little girl, so we each had a baby to play with. Since Tuesday Mina's been "borrowing" either Home Baby or Chad Doll to play with and seems to be OK with it.

Of course, she doesn't fully realize that Waah Baby isn't coming back. She's been saying "Waah Baby's not lost. We will find her." She's been lost before and we've always found her, but she'd always been lost in either the car or the house. This morning she said "Maybe an alligator got her." I said no, an alligator didn't get her. "Or maybe a fox." I said no, a fox didn't get her. Keri and I haven't yet figured out a strategy for how to deal with the situation. I did tell Mina that Home Baby wasn't really my baby, that I had just been borrowing her and that she was really Mina's baby (which is 100% true, of course). She repeated that several times and it seemed to make sense to her, but she's been referring to her as Daddy's Baby for so long that I suspect it's firmly cemented in her mind. She's become less attached to Waah Baby in recent months, which is part of the reason why she's ben lost so often, so maybe she'll be OK. Still, I'm guessing there's a meltdown or three in our future when the chips are down and she really wants her baby.

Things are good otherwise. Keri is flying up to Seattle tomorrow to spend her 39th birthday with her twin, then flying back early Sunday morning for a meeting at Mina's preschool. Mina starts preschool next Wednesday, and is very excited. Keri's class is going well; she's teaching "Muslim Cultures" to eight students at the University of San Francisco, which is a pretty good private university that's about a five minute drive from our house. No word on any of the blood tests that they've been running on Mina, but no news is good news as far as we're concerned. I'll update again if there is any news about Waah Baby.

Saturday, September 02, 2006

Day +490: Happy Labor Day!

Hope everyone is getting out and enjoying the out of doors while the weather is still nice. It looks like it's hot in the Northwest, so I hope everyone is enjoying that. It's the usual low 60s here in San Francisco and it was overcast and gloomy today. After all of our trips this summer, we're sticking pretty close to home this weekend. We're meeting Katy, Awais, Emma and Dylan at Big Basin Redwood State Park tomorrow, which is between San Jose and Santa Cruz.

We've been pretty busy otherwise. Keri's teaching a class at the University of San Francisco this fall which started last Wednesday, so she's had to farm the kids out to babysitters on several occasions to prepare for that. They love their babysitters and vice versa, so it hasn't been too traumatic for them. But they're always happy when the weekend comes and Daddy gets to stay home. We were getting ready to go out for a walk this morning, when Isaac saw me putting on my socks. He said "You going to work?" I said no, I was going with him. He immediately turned around and ran out to Mommy screeching "Daddy going with us! Daddy going with us!" It's nice to see him getting attached again -- after all the time away, he was back to being a Momma's boy. But Keri has been out late a couple of times the last week, and he went to bed with Sissy and me just fine.

He still loves playing with his Momma's hair, especially when he's tired. While we were in the Northwest, he liked to sit between Keri and Teri with one hand in the hair of each. He would grin and say "I have two hairs!" The other day Keri had put some gel in her hair, and when Isaac went to grab it he pulled his hand back again saying "It's dirty! It's dirty Momma!" We keep joking about getting him a wig to play with, but Mina got a doll with real hair as a gift recently and yesterday I showed it to Isaac. He put his hand in the doll's hair and started to giggle, and just sat there with a goofy grin on his face.

He understands so much these days, it's crazy. He's now able to communicate real information, and even talks about past events. We were talking about swimming today, and I asked him if he swam in the pool with Grandma, and he said "No. With Grandma Judy!" The other day he was telling me about the things they did at Kaaren's house, unprompted. Grandpa taught him how to say "No way Jose!" while we were in Wenatchee, and he's still saying it. The other day Mina said "No way Jose!" and Isaac said "Yes way Jose!" They went back and forth about five times before I intervened because they started getting upset. He said another funny thing today: as I was telling him it was time to change his diaper, he said "I don't THINK so!" It was such a perfect use of the phrase and his emphasis was so exactly right that I did a double take, like "Did he really say that?"

Mina's doing great these days. Her color is really good and she has so much energy. It's so fun to see her run and jump and climb and do everything she should be doing. She still loves to draw, and has spent several hours the last couple of weeks making drawings. She's still working on the theme of circles inside of circles that she started a year and a half ago in the hospital, but they've gotten much more elaborate with multiple colors and lots of circles of different shapes and sizes. It's interesting, she doesn't call them "babies" anymore either. She also likes to "write", where she makes horizontal zigzag lines across the page. The other thing she's been into since the summer is folding paper. She takes a full page, with or without a drawing, and folds it widthwise four or five times until it's about two inches wide.

One of her things lately is to talk about "forever and ever." The other day she was happy to have Daddy around, and she asked with a big grin, "Can I keep you forever and ever?" I explained to her that she could keep me for a long time, but that I would eventually get old and die. She asked "What will happen to me?" I told her she would be all grown up by then and wouldn't need me anymore, and would probably have her own family. The conversation must have made a big impression, because she's referred to it several times since then. She asked Momma if she could keep her forever and ever, and Momma said yes. Mina thought about it for a while, and then said "But you gonna get old!" She's also talked several times at how she's going to be all grown up and have her own family.