Day +214: Little Reminders

Exactly 7 months since her transplant. Mina Brigitta has had a bit of a rough go lately. We've been kind of worried. Not sure about what, exactly, but mostly because she's continued to have some diahrrea and until yesterday really hadn't been eating all that much. Sunday night she didn't eat a single bite for dinner, had a runny poop, and was crying that she wanted to go to the pole house (she says "hospital" now too, but still seems to prefer "pole house"). That's kind of hard to hear, and you immediately want to give some credibility to it because of the seriousness of her situation. But when I stepped back and looked at her, I started feeling like it was too much to ask of her to tell us whether what's ailing her is something serious or not, and that we shouldn't read too much into the words she chose. She might have just been tired and had some nausea from her meds or left over from the flu, and she definitely knows the pole house is where you go when you're sick. And maybe it's comforting to her on some level, which is great. Luckily, Keri called me Monday to tell me she'd eaten a huge lunch, and her stools have been better the last couple of days.

It's been rainy the last couple days, so today Amber took the kids to the Bay Area Discovery Museum, which is apparently a really fun place for kids to explore. It's nice that Mina can do those things now that the rainy season is upon us, though it's better for her to go on school days; Amber said it wasn't very crowded today. They had such a great time and were so pumped up afterwards that they didn't nap all day long! And they still went to bed at close to the normal time, though they were getting pretty ragged toward the end. Sounds like they're both feeling a lot better these last couple of days. Keri said they've been very cute together. Isaac just follows Mina around and wants to do whatever she's doing. She's usually pretty patient, and we've been working on her trying to get her to stop pushing Isaac down when he gets to be too much. Today instead of pushing him, she told him "No, don't do dat! Make Sissy sad!"

Mina Brigitta has another clinic appointment tomorrow, and she told Mina this afternoon she was going to the pole house tomorrow. Mina's response was "Why?" I like that response!

I wanted to also ask people to keep Lily Clair Foster in their thoughts and prayers these next several weeks. She's another little girl with AML who checks in to the hospital for her transplant tomorrow. Her mother Jen has a blog at Caring Bridge: http://www.caringbridge.org/cb/inputSiteName.do?method=search&siteName=lilyclaire
They're having to move temporarily from Kansas City to Minneapolis for the transplant. I guess we didn't know how good we had it.

Day +210: Happy Thanksgiving!

Hope everyone had a great Thanksgiving. We spent ours with our good friends Rich and Olgica, their son Nikola (who is a few months older than Isaac), Rich's parents, and some other friends of theirs. Rich and Olgica always do a fantastic gourmet meal, so we were well-taken care of. Mina Brigitta and Isaac had a great time playing with Nikola's toys. They have some plastic play equipment on their balcony (a toy kitchen, a little car to sit in with a door and steering wheel, mini-slide), and Mina Brigitta was so enthralled she spent almost the entire time on the balcony. These days when she gets focused, she can be pretty single-minded. She kept driving the car back and forth between the toy kitchen and "Dadda's house", which was what she called one of the little plastic structures. She would get out and fix some num-nums in the kitchen, then get in the car and drive over the Dadda's house. I told her to hold that thought for about 30 years from now.

One thing both Keri and have noticed, and others have remarked on, is just how sober and serious she seems. Isaac was grinning just about the whole day, while Mina barely cracked a smile. Maybe that's just the difference in their ages and being shy in a new environment and around strangers. There are plenty of shrieks and giggles with antas and grandparents and, of course, Amber. Or maybe it's because she's still not fully recovered from the flu. She's been through so much and probably still isn't fully recovered from all of it. So hard to know exactly what's going on with her. But she played pretty hard until about 10:00, when she came and told us she was ready to go home.

After yesterday, she and Isaac both had long, long naps today. Mina slept from 2:30 till about 7:00, got up for a couple of hours, and then went back to bed. We've been a bit worried, because her stools have been pretty irregular the last several days. Tuesday night she woke up pooping three or four times, which really brought back some bad memories for me. Then Wednesday she screamed out in pain with a bowel movement and cried that she wanted to go to the pole house. It was clinic day, so Keri called up there and the on-call doctor wanted to see her in person. He thought she looked fine, but said we should watch her carefully. The big worry would be a recurrence of her graft-vs-host disease, but her stools have reminded me more of when she had the c. diff. infection and the positive CMV test, and not so much like when she had the GVHD. Most likely she still suffering some lingering effects from the Parainfluenza 2 virus. And her bottom has been really inflamed on Wednesday, which probably accounts for the pain she's been experiencing. She only went once today, so hopefully she's recovering again. But it's been kind of nerve-wracking to have to think about some of these issues again.

We didn't go around the Thanksgiving table and say what we were thankful for. It's probably just as well, because I'm not sure I would have been able to keep it together. I have so much to be thankful for this year, it's hard even to know where to start. But I wanted to try to sum it up as succinctly as I could:

I'm thankful that I have a healthy son and a resilient daughter. I'm thankful that we have such a supportive network of family and friends. I'm thankful for the very competent and caring treatment that Mina Brigitta received at UCSF. And most of all, I'm thankful that my children have such an incredibly strong and loving mother.

Day +204: Recovering from the flu

Mina Brigitta has just about recovered from her little bout with the flu. She hasn't had any more fevers, has been fairly energetic, and has even been eating some. The biggest thing we've noticed is that she wants to go to bed at 7:00 PM. We're trying to figure out how to get that to carry over to when she's fully recovered. She does have a bit of a cough and some diahrrea, but all in all it looks like she's going to get off very lightly. We can probably thank the antiviral medications she's on.

Isaac, who doesn't have that advantage, is quite a bit worse off. He's definitely better than he was a few days ago, but he's still kind of wandering around in a daze half the day, and he's producing incredible volumes of mucous. His poor little head looks like it's about to explode. He does have some up moments, but most of the time he pretty much wants to sleep. Unfortunately, he has a hard time doing that because he's so stuffed up. It's not suprising, but still kind of amazing to think that this is his first illness, at nearly 14 months.

I know people like to hear the funny things that kids say, so I've been trying to remember them when I post. But the problem is that I'm usually too tired by this time of night to remember anything but the basics. Anyway, I've been saving some up:

• A week ago we visited Robert and Patty, who have three dogs in their house. That must have made an impression, because Mina told her mom she wanted to have a dog "in sissy's house".
• Sometimes I'll ask Mina Brigitta how she's doing, hoping that she might be able to tell me if something was really wrong. A couple of weeks ago I was away for a few days on business travel. A few days later I was asking her how she was doing, and she said she was "Happy! Happy dadda's there!".
• One of her new words is "friend". She's been talking lately about who is a friend of whom. We were looking at some family pictures, and when she saw Grandpa, she said "Grandpa friend!"
• Keri has some nice glass candlesticks on the dining room table, and the shortest one broke when the candle burned too low. So Keri threw it away and took the garbage downstairs to the garbage. Later that day, Mina Brigitta noticed that the "baby candle" was missing and became distraught when she couldn't see where it had gone.

Day +201: A quick stay in the Pole House

Mina Brigitta had been feeling a little bit under the weather, and Monday night had a low-grade fever of 99.7. But Tuesday she was feeling fine, and Keri took the kids to Austin and Bliss's house for the day. They both fell asleep at 5:00 when they got in the car, and both of them went right back to sleep after Keri transferred them into the house. Keri went and checked on them at about 8:00, and Mina was burning up with a fever of 101.9. So we paged the on-call doctor, who wanted us to check into the hospital for the night. Isaac woke up when we were just about done packing, and Keri thought he felt hot. So we took his temperature, and he had a fever of 101.7.

So Mina and I stayed in the hospital last night, and then Isaac went to a babysitter today while Keri sat with Mina in the hospital. They were just being cautious bringing her in, wanting to make sure she didn't have a bacterial infection, which could still be dangerous at this point, even though all signs pointed to a virus. They took a blood culture to check for bacteria, and a nasal swab to check for viruses, and sure enough, the swab came back positive for parainfluenza 2 virus (http://www.medterms.com/script/main/art.asp?articlekey=31631). Mina Brigitta has the flu. This is obviously of some concern because she's still immunocompromised, but she does have T-cell function now which gave the doctors enough comfort to lift the restrictions on her activities. Dr. Horn was uncharacteristically reassuring today, telling us that Mina Brigitta is much less vulnerable than she was a few months ago, and telling us how pleased she is with Mina Brigitta's overall progress. Plus she's already on effectively two anti-viral medications (acyclovir and IV immunoglobulin). Mina Brigitta never really seemed all that sick, and her fever broke this afternoon. Once the diagnosis came back, they felt comfortable sending us home, so we checked out at about 9:30 tonight.

Isaac is not doing quite as well. Kaaren, his babysitter, said he spent most of the day either sleeping or insisting on being held, and he's been waking up every half hour so far tonight. His biggest problem is a bad case of diahrrea, which has really inflamed his bottom. He did show some life tonight after Mina and I got home. Mina really missed him today. We were walking home from the hospital carrying the three balloons that Aunta Teri sent -- two pink heart-shaped balloons and one Pooh balloon. Out of the blue, she said Isaac could have one of the pink ones. Then she said he could have both pink ones. Then she even said she would let Isaac hold her Pooh balloon! When we got home, she wanted Isaac to sit on her lap. He was content to sit there for a few minutes playing with the balloon while she attempted to read him a book. It was a hysterical and very touching scene.

Day +196: Busy dadda

Sorry for the long gap between blog entries. I was organizing the Halloween photo album (http://www.mendozabaseball.com/minabrigitta/october%202005/) toward the end of last week, then had a business trip Sunday through Tuesday, and was too tired to blog last night. My parents left Saturday afternoon, and then Anta Teri arrived late Saturday night to help Keri while I was gone. Mina Brigitta had a great time with Grandma and Grandpa. This was the first time that she's flat-out refused to go to bed. She was having such fun playing all week, I had to drag her kicking and screaming to start the process of going to bed. It's kind of a long process: brush her teeth, flush her tubes, change her diaper, put on jammies, read some books. And she's become an expert at stalling and dragging out every step as long as possible. The best word I can think of to describe her is "deliberate". She really takes her own time and is very careful and deliberate on each and every task she does. I think maybe she takes after her Uncle Eric in that regard.

Mina Brigitta is really doing well now. She's very much enjoying her newfound freedom, particularly going to the playground. She also loves eating blueberries and raspberries and apples and raisins and all things she couldn't eat all this time. When we gave her her first raspberries, she kept wanting more and more. When I tried to cut her off, she said "More waspbewwies pwease. For dadda's baby." She really knows how to tug at her old Dad's heartstrings.

She's becoming very precise in her play these days. The other day after breakfast she took some pots and pans into the bedroom and was making "num-nums" for Waah Baby. She told me she was making oats. Then she pointed to herself and said "dis baby's dadda!" I had just made outs for her breakfast, so she was acting out that scene. She's also been making cookies with Waah Baby, which she's done with Amber and both Grandmas. Today Keri said she was pushing Waah Baby around in the stroller, and she would stop and point out the water to Waah Baby. Amber had taken the kids to Chrissy Field for a walk along the Bay this morning, and must have been pointing out the water to Mina Brigitta.

Isaac has been teething again and really miserable. His mouth was bleeding and he was running a pretty high fever (102) while I was gone. No other symptoms like runny nose or cough or anything, and no one else has been sick, so we think it's just his teeth. It's nice to know that Mina Brigitta has some defenses now if she does get exposed to something, but she won't be totally normal for months yet, so I was a bit nervous until Isaac started feeling better yesterday.

Day +188: Great news!

Finally got the test results we've been waiting for. Mina's engraftment study showed 100% donor cells! This is obviously a huge relief. Not that we had any reason to suspect anything, but you just can't know. Of course, I've already started to worry about the next test two months from now. I don't know if that's inevitable with this kind of disease, but I do know I'm not really going to be able to relax for a long time.

The other big and somewhat unexpected news is that Mina Brigitta's T-cell function test came back normal! T-cells (http://www.medterms.com/script/main/art.asp?articlekey=11300) are the most important disease-fighting lymphocytes, and we were told that T-cell function might not return for a year or longer after the transplant. We had some indication this might be a possibility because her lymphocyte counts had been increasing the last several weeks, but they were still telling us not to expect anything. Her B-cell (http://www.medterms.com/script/main/art.asp?articlekey=2413) functions still are pretty minimal, so she's still immunocompromised, but she's not nearly as vulnerable as she was during the summer.

The biggest thing that comes from this is that we don't have to worry about molds nearly so much. Because of the result, they've now lifted many of Mina Brigitta's restrictions. She's been wearing a little paper mask whenever we go out in public all of these months, and now she doesn't have to wear one anymore. She's been so good about it that she gets upset when the mask isn't on right, so there will probably an adjustment period about that. She can go inside stores and restaurants now, and Keri can take her back to the Muir Woods.

And she can eat whatever she wants! She hadn't been able to eat any thin-skinned raw fruits or vegetables (only thick-skinned fruits like melons). She'd been really good about that too -- she asked about raspberries when we first came home from the hospital, and I had to tell her that she couldn't have them just yet. She rationalized it by saying she could have them in the other house, but not in this house. So last night we celebrated by giving her a whole bunch of raspberries in this house. This morning she had more raspberries and some strawberries as well. She understands exactly what's going on, too; she says things like "doctoe say OK eat dis now".

And finally, she gets to go back to the playground now! They'd advised us to keep her away the last month or two after the start of the cold and flu season. She's very excited to go back. Keri had planned to take her today, but they had a clinic appointment this morning ("Say 'hi' to pole house!"), and Mina Brigitta woke up too late from her nap. And she can go to classes with other kids as long as everyone is careful about keeping her away from sick kids. So we're going to try to find a music class that she and Isaac can go to. This will be a big change in Mina Brigitta's, and Isaac's, quality of life.

Halloween was very fun. Keri, Isaac and Mina Brigitta went to Berkeley to see Hedy, the daughter of our friends Robert and Patty, march in a kids' parade. Then they picked up Grandma and Grandpa from the airport, came home and napped briefly, and finished carving our pumpkin. Mina Brigitta wanted a sad pumpkin, so we made her a "waah punkin" with tears coming out of its eyes like the waah babies and waah apples we drew in the pole house.

We went out at about 6:00 to a street in our neighborhood where they have a huge Halloween block party. About three blocks were barricaded off, and there were literally hundreds of people there, mostly families with young kids and everyone very well behaved. There were some quite elaborate displays. Mina Brigitta woke her flower costume, and Isaac was a bumblebee. Mina Brigitta had a blast. She was not shy at all about marching up to every house, holding out her little bag, and then saying "Tank you!". Isaac was tired and fussy, and feel asleep on my shoulder about halfway through. We took lots of pictures, which I hope to have posted by the weekend.