Day +241: A Happy Glow

We had such a nice Christmas. We went to the 5:00 PM Christmas pageant at St. Mark's. We got there a bit late, and the only seats left were in the front row! So the kids got a great view of all the action. The pageant was quite elaborate. It was all members of the church, but they did a really nice job. Mina was intently watching the little kids in the angel costumes, and Isaac was thrilled that the shepherds brought their sheepdogs with them to the manger. Afterwards, we said hello the assistant pastor, who at the instigation of my parents had visited us in the hospital way back in February. He was thrilled to see Mina Brigitta there and looking so well. Afterwards, we went to dinner at the local Japanese restaurant. Mina enjoyed the California rolls, and Isaac really liked the miso soup, as long as I didn't try to slip him any tofu or seaweed.

Sunday morning we tried to open presents, but the first one Mina opened required assembly. It was a baby crib from Kristy, Bill and Grandma Lyn. By the time I got it put together, the kids had lost interest in opening more presents, so we just fed them lunch and put them down for early naps. The guests started to arrive around 3:30, and stayed until 9:30 or so. We had a very nice dinner of mussels, oyster mushroom soup, leg of lamb with saffron rice and a pumpkin dish, and then Keri's special kanafeh for dessert. More importantly, we got to hang out with good friends and socialize. Mina was so busy socializing with the other kids, and adults that I barely saw her all evening.

This week they have been in great moods, even though they're both still catching up on sleep. There's just been a really nice, happy glow in our household. They've opened one or two presents a day. Today Isaac got a set of drums from Keri and a Waah Baby from Kristi and Bill. They actually bought it for Mina, but we decided to give it to Isaac since Mina already has her Waah Baby and her Home Baby, and we didn't think she needed a new one. But we were obviously wrong, as Mina grabbed that baby right away and didn't let it go all day long. She's calling it "New Home Baby" and she's calling herself the Momma, even though she seems to understand it's Isaac's. Isaac isn't all that interested, truth be told, so we'll probably just let things run their natural course. She hasn't gotten to the trike from Grandma and Grandpa yet, so that will be an exciting moment.

Mina is still excited about Christmas, and she's been going around singing Christmas carols for the last couple of weeks. Thing is, she doesn't quite know the words yet, so she kind of puts together phrases and tunes from different sources. Here are some of her current favorites:

• Hark the Angels so Much
• Way in a Manger no Crib for Me
• Angels Hear Right Now

Not much medical news this time. Mina had another clinic appointment today, but it was pretty uneventful except that she threw up unexpectedly while in the waiting room. She didn't have any other symptoms today, and she did that once before a few months ago, so probably it's nothing. I asked Mina why she threw up, and she said "Because I wanted to!" I asked if she felt sick, and she said "Yeah." Then I asked if she still felt sick, and said "No. Feel happy!" She's still having diahrrea, but Isaac's is just now getting better and the nurse mentioned that this winter's viruses have been causing that. They took another sample to test for c. diff., so we'll hope that one comes back negative. The good news is that she grew 2 cm! She's now up to 94 cm, which I think means that she grew about 2 inches total for the year. Which is really pretty good, considering all she went through.

Day +238: Merry Christmas!

Mina doesn't really remember last Christmas, so this will really be like her first Christmas. Isaac will still be oblivious, of course. We'll attend a kids' pageant at St. Mark's Lutheran Church in San Francisco at 5 PM, and may go back for the 8 PM service, depending on how everyone is feeling. On Christmas Day we'll get up, open stockings, then have breakfast, then open presents. Then our friends Rich and Olgica are coming over with their son Nikola, who is a few months older than Isaac, and our friends Blair and Walt with their daughter Devon, who is 10 months old. We'll have to scramble tomorrow and on Sunday to get everything ready, but we're really looking forward to it.

Mina has started skipping naps on occasion, which we're taking to be a good sign that her energy is still returning. It's been raining a lot the last two weeks, so Keri and the kids have been staying home a lot. And with Amber and Megan out of town, the whole family has been going a little stir crazy. Yesterday was one of those days where they stayed home and Mina wouldn't go down for her nap. Keri was tearing her hair out, so I left work a little early to come home and help out with the kids. The first thing that happened after I got home was that I provoked Mina into a screaming fit, because I tried to put her bowl of untouched yogurt into the fridge. She cried and screamed for about ten minutes. She didn't actually want to eat the yogurt, mind you, she just wanted me to leave it on the table. It was almost comical to hear her screaming "I want some yo-yo!" "Do you want to eat the yo-yo?" "No no no! Yeave it right der!" When she finally calmed down, she asked to lay on the bed with a pacifier for a few minutes. I changed Isaac's diaper and put his pajamas on, then came to do the same for Mina, and she was fast asleep! She slept right on through until 6:00 AM, even when I changed her diaper, flushed her tubes, and put her pajamas on. And this morning she was really in a great mood.

Isaac is actually sleeping pretty well these days, now that he's not sniffling any more (Mina's nose is dry too, and the dry cough she's had for weeks seems to be pretty much be gone). He is a funny kid. He just walks around the house with a silly grin on his face, getting into everything. He loves to read books now, and when you sit down he just kind of shows up with one of his favorites, like "The Very Hungry Caterpillar". He likes to put his hands in front of his face and say "Boo!" And he's really becoming a good imitator. The other day I was singing "Allelujah!" while I was changing his diaper, and he was saying back "Aaaah lay lee lee!" He and Mina really love each other and get along well for the most part, but she can be kind of a tyrant, grabbing toys and pushing him out of the way. Yesterday she and Keri taped a sign on Isaac that said something like "Please don't push me down! Please go around! I love you Sissy! Isaac" Keri said Mina was nicer after they did that, so maybe it actually helped.

Mina is still having watery poops 4-5 times a day, even after a week on the antibiotics. But she's energetic and still eating well, so we still don't think it's anything major. They may have to go to Plan B to get rid of the c. diff., though. Also the dry rash around her ears is not totally gone, and she has some small bumps on her face. Again, probably not enough to worry about. I don't know if it's coincidence or not, but we've been noticing how much better her skin tone looks over the last week or so since they discontinued the cyclosporin. It might just be that she's building her red blood cells up again after the virus.

Merry Christmas everyone! And if you've made it this far, thanks for indulging me in my boring ramblings about our home life. Don't get me wrong, boring is definitely good...

Day +232: Please pray for Lily Claire

She is fighting for her life: http://www.caringbridge.org/cb/inputSiteName.do?method=search&siteName=lilyclaire

As for our little patient, we had some more interesting news from her clinic appointment Wednesday. Dr. Horn called yesterday to tell us that she has another c. diff. infection. C. diff. is a bacterial infection in her gut that she's had several times before after an extended time on antibiotics. She did just finish a course of amoxycillin that was given because of her continuing cold symptoms, so that may have been the trigger. It's also possible that she never quite got rid of it last time. She came home from the hospital with it, and one round of antibiotics didn't get rid of it. Her symptoms subsided after a second round, but perhaps she was just asymptomatic for a period. This is now the leading candidate for her continued gut issues, though Dr. Horn said a virus could be contributing as well. Normally c. diff. doesn't major problems, but it's a bit worrisome because there has been an antibiotic-resistant strain making the rounds at UCSF and other hospitals.

The other news we got was that the X-ray revealed a small nodule in her sinuses. Dr. Horn doesn't think it's worth treating as long as we feel she's improving, and both Mina's and Isaac's noses seemed to be drying up today, so we're hoping that will just take care of itself. Mina has been off the cyclosporin for three full days now and isn't showing any new skin rashes or other symptoms. I'm now beginning to wonder how long it will take until the hairs that it caused to grow all over her back and neck fall out. She's been eating very well too; she had gained a full kilo at her Wednesday appointment!

The Sound of Music was on ABC tonight, so Mina and I watched a bit of it after dinner. She loved the songs, but she didn't care much for ABC's pattern of putting commercials right after every song. When that happened after the first song, she started to cry because she wanted to hear another one. I had to talk quickly to convince her that another song would come on soon. It happened again a couple more times, but she eventually started to figure out the pattern. Still, after every song was over she would say "Sing another one?" Even when she was falling asleep in my arms, she opened her eyes after a song was over and whispered faintly "Sing another one?" She also kept up a hilarious running commentary on the show. It went something like this.

What's dis song?
Sing another one?
Raining dere!
Raining at dis house!
Raining at Sissy's house too.
Kids scared?
What's dis bed?
Dis a big one?
Horsie!
Sissy yike horsie.
Where eyes?
What are they riding in?
What's dis house?
Kids in boat!
Fall out of boat!
Wet!

Day +229: No more midnight meds!

Mina and Momma spent basically the entire day at the clinic today. Mina saw Dr. Horn, then got her IVIG, which has to infuse over a few hours, and her pentamidine. Then she had to go for X-rays of her chest and sinuses, just to make sure everything looks OK, because she still has some mild symptoms. No report yet on the X-rays, but her symptoms are really quite mild, so we're not expecting much. She has had some gastro-intestinal symptoms again this week, so they're advising us to lay off the dairy and see if that helps. We'd been encouraging her to drink more milk lately, so maybe that will take care of it.

But the really great news is that they've decided to discontinue her cyclosporin, which is the anti-rejection drug she's been on since the transplant. Anti-rejection drugs work by inhibiting immune system function, so we'll be very glad when she's off them all. The last immune modulator that she's on is Cellcept, and there's been no talk yet of taking her off that yet. One step at a time. But I was a bit surprised they even took this step, given the rash she's had on her face. I guess they're satisfied that it responded to the hydrocortisone cream. Cyclosporine is the drug that has to be given three times a day, as close to 8 hours apart as possible. We've been giving it to her at 8 AM, 4 PM, and midnight, which has been hard on my sleep patterns. So from now on I'll be able to go to bed whenever I want like a normal person. Woohoo! What a nice birthday present for Dadda.

We had planned to take Lyn and the kids to our local Japanese restaurant to celebrate my 40th birthday, but they got home too late from the hospital and the kids weren't in the right frame of mind. Isaac's little nose is like a faucet right now, though it's running clear and he doesn't seem too sick otherwise. We did go to a Christmas sing-along at the neighborhood grade school, which is a block from our house. It was very fun -- there must have been 100 people crowded into the lunch room. Mina kept saying "Sing another one?" whenever they would stop, and I don't think Isaac ever took his eyes off the woman who was playing guitar.

I missed decorating the Christmas tree on Monday, but Lyn said each new ornament elicited a squeal from Mina Brigitta when it came out of the box. Tuesday morning they were up at 6:00 AM, and they had forgotten about the tree. We kept the door to the living/dining room area closed so as not to disturb Lyn, who was sleeping on our couch. The kids had been up for over an hour before Lyn came into the kitchen and asked Mina if she wanted to show Dadda the tree. She shrieked and went running into the dining room yelling "Yook Dadda, yook at dis!" Isaac came in too with a big grin on his face. He kept looking at me, then looking at the tree and saying "Dis! Dis!" It really is a lovely tree, and with all the boxes that have been arriving, it'll soon be littered with presents.

Day +226: Beginning to feel a lot like...

Not because of the weather, which has been beautiful. But Keri has decided she loves Christmas music, and my parents have been kind enough to keep us supplied with CDs of choral music. Keri's been playing them nonstop since Thanksgiving, and the other day she told me that the only bad thing about Christmas music was that you only get to listen to it during the Christmas season.

We also got our tree today. Mina and I towed the Radio Flyer wagon the three blocks down to Cole Hardware, where we were lucky enough to pay $55 for a seven-foot noble fir. After almost not getting a tree last year, I asked Keri this year if she just wanted a small tree, and she said "No way!" We definitely have the Christmas bug in this house. Mina was a bit concerned when we laid it the tree in the wagon. She asked several times if it was going to stand up, and then again at home when we laid it in the foyer while we ate dinner. She shrieked in joy when we arrived home with the tree, and it was all we could do to get her to sit down for dinner. Which was important because Grandma Lyn is in town, and she and Keri spent all day in the kitchen making a big turkey dinner, complete with stuffing, mashed potatoes, sweet potatoes, homemade rolls, and wassail. The house still smells wonderful. We finally got the tree upright at about 8:00, and Mina didn't settle down for bed until well after 9:00.

Still some ups and downs healthwise. Mina finally got rid of her intestinal symptoms early last week. On Tuesday she had about three bowls of oatmeal for breakfast and a hamburger for lunch, and she hasn't looked back since. Her stools have returned to normal as well, which is really a big relief. Isaac, on the other hand, has been having some trouble again, and now all of a sudden they both have snotty noses, so they might be getting another cold.

More troubling, she's had a dry, itchy rash forming around both of her ears, and some small bumps on her face. It started about mid-week, and by Saturday morning it had progressed enough that I wanted to have her looked at. So I bundled Isaac and her into the double stroller and hiked up the hill to the hospital. We went back to Seven Long, since the clinic was closed on Saturday. When Mina saw that we were turning left toward the hospital instead of right toward the clinic, she clapped her hands. When I asked her why she was clapping her hands, she said "because we're going to the hospital!" It's kind of fun to go in there, because each time we do we see a nurse who hasn't seen her since June. They all make a big fuss about her, especially her hair. She even remarked to Mama later on how much the nurses liked her hair. Isaac gets a lot of attention too -- many of them actually saw more of him when we were in, because the nurses would take him out into the corridor.

Dr. Matthay said the rash could be some chronic GVHD. She said if it was a normal kid she would assume it was just some eczema (http://www.emedicinehealth.com/Articles/8545-1.asp), but with her history, she wanted to start treating it right away with some hydrocortisone. They'll take a close look at her in clinic on Wednesday. We wouldn't really mind some mild chronic GVHD as a tonic against recurrent leukemia, and I think we've relaxed a little bit since Dr. Horn told us she was probably past the point where we need to worry about life-threatening GVHD. Still, it's comforting that her intestinal symptoms have resolved for now, and a few applications of the steriod today really seem to have helped.

Another story I wanted to pass along is that it's now official that Waah Baby has lost her voice. She's Mina's favorite baby doll, and she would alternate between crying and laughing when you squeezed her chest. Whenever Waah Baby cried, Mina would pick her up and put her on her shoulder and pat her back and say "Shhhhh", just as serious as can be. It had been obvious for awhile that something was going on with Waah Baby, because her laughing and crying noises were becoming less and less intelligible. I kept waiting for Mina to say something, but she never let on that she noticed it. In fact, she was able to tell the difference between a laugh and a cry long after the point where it all just sounded like moans to me. Finally, one day Waah Baby kept moaning and moaning. After about five minutes of it, Mina finally looked at me and said "Turn Waah Baby off!" There's no on/off switch, but luckily she stopped soon. And shortly after that, she stopped making any noise at all. It's too bad that the makers of this particular doll didn't see fit to provide a way to change the batteries, but Mina Brigitta still plays with her just as much as she ever did, changing her diaper and her dressing, giving her a bath, putting her to sleep. Just tonight she was bathing her in the tub that waters the Christmas tree (before we put up the tree and filled it with water).

Day +219: Getting into the Christmas Spirit

Keri was trying to get some work done this weekend, so I had lots of quality time with the kids. A weekend with Daddy usually means playgrounds and carousels, and this weekend was no exception. Isaac was feeling under the weather and took an early nap Saturday, so I put Mina on "Daddy's Choo-choo" (it's so cute when she says "N-Judah") and we went two stops and through a tunnel to the Duboce Playground. She wasn't real energetic, but then a wonderful thing happened: a group of high school-aged carolers came out of the nearby hospital and were waiting at the train stop, which is right next to the playground, to take the N-Judah out to UCSF and sing carols there. They had to wait a long time for their train, probably 20 minutes, and one train was full so they couldn't get on. Well, what were a bunch of singing kids going to do standing there for so long besides start singing songs? So we got a little impromptu concert of eight or nine Christmas carols. Mina Brigitta just stared at them with her jaw agape, and every time they stopped she would look at me and say "sing another song?" They were thrilled to have such an appreciative audience. They really sounded great, too. Right before they left I told them she'd spent all this time in the hospital and what a wonderful thing they were doing to bring cheer to people stuck there over the holidays. A couple of them actually got a little teary, but they needed to know how much it means to people.

Today we went to the carousel in Golden Gate Park and Mina rode the doggy by herself. Not without some prompting, but she stuck it out. Isaac got about halfway through the ride before he wanted up. Maybe they're a bit young to fully appreciate the carousel, but Mina always enjoys talking about it. Then we went to the playground that's right near the carousel. It's a huge playground with all kinds of neat structures to play on, but the ground is covered with sand so Mina couldn't go there until recently. Today she wanted to try every piece of equipment, even the big fast scary slide (I talked her out of that one). She wasn't running or giggling, particularly, just intently checking everything out. Isaac got to sit and play in the sand, which he hasn't had much chance to do. He was again so tired he didn't have energy for much else.

Keri bought a couple of Christmas books, and one of them has Christmas carols interspersed with poems and stories. I was reading it to Mina tonight, and she asked me to sing the song "Hark the Herald Angels Sing". So I sang it, and when I finished she was silent for a minute. Then she said "Again?" She made me sing it four times. Finally I told her there were other songs in the book, so we spent the rest of our reading time searching out the songs and singing every single one of them. I think it's a good thing that Keri has Isaac and Mina signed up for a music class this winter, and I predict we'll be singing lots of Christmas carols over the next few weeks.

Day +217: Ups and downs

Mina Brigitta has been feeling much better this week. She's been in really cute moods most days, enjoying playing, eating a little bit better, and being very cute with her brother. The other day she was very excited when Bubba woke up from his nap. Out of the blue she said "Yike (like) Bubba!" just like she does when she encounters something she really likes. She's been eating better, though still not like she was before she got the flu. Her weight was pretty steady at her Wednesday clinic appointment, which I took as a good sign given all the problems she's been having with her digestive system. Which seemed to be getting better as well, until she started having a little bit of diahrrea again on Thursday. They did prescribe amoxycillin at her Wednesday appointment out of a minor concern about a possible ear infection, so perhaps that's causing some more irritation in her bowels. Or maybe it's another bug; Isaac has also had some diahrrea, and Keri is feeling a bit under the weather as well. I'm looking forward to the day when a bug is just a bug for us.

The good news from her clinic appointment is that they dropped her cyclosporine down another notch, from 0.1 cc to 0.05 cc. That's the nasty, anti-rejection drug that she calls the "hot one". And they even started talking about when to take her off of it altogether. The other interesting thing Dr. Horn told us recently is that we're getting close to the point where we can stop worrying about "life-threatening" GVHD. Chronic GVHD can still pop up anytime, but it seems the longer it takes, the less likely it is to be severe.

Isaac is becoming such a little man these days. He's beginning to talk a lot, which has been funny because he's had a really hoarse voice the last couple of weeks. But he'll now repeat certain words back to you: Dada, Mama, Bubba. Can't get him to say "Sissy" yet. He also says "nana" for banana, "baa" for sheep, and "mah" for milk. And he does a panting sound for dog. It's funny, now when he cries, I have to listen more carefully to figure out whether it's him or Mina.

We had our first major rainstorm of the season this week, and after a day or so, we had a mouse in the kitchen and ants in the dining room, despite the fact that we live on the second floor. We're really glad this didn't happen a few months ago, and we're really hoping neither problem becomes chronic. I set out mousetraps, but haven't seen any sign of them in a couple of days.