Days +146-148: good times

Keri picked up a little wooden table with two chairs. The chairs are a little high -- both kids fell off and bonked their heads on the linoleum floor -- but Mina Brigitta loves it. Mina always calls out "Dadda!" as soon as I walk in the door. Today I heard "Dadda!" and then "Yook at this!" Then I heard this scraping sound that lasted all the way up the stairs. Mina Brigitta was pushing the table out of the kitchen to the top of the stairs so I could see it. She was so excited she was practically shrieking as she told me about the table.

Saturday I took the kids to the carousel in Golden Gate Park again, then for a long walk trying to get them to sleep. Mina Brigitta rode on the horse all by herself, but only for half the ride, then she wanted "up with Dadda". But she wanted to ride it again, so we did it twice more sitting on the bench. Mina had on a big sunhat, sunglasses and mask, so she definitely stuck out. Kids always stare. Adults too, for that matter. Some little girls were trying to say hi, but Mina was being shy. Then it turned a bit harsh, as they were taking turns running up and saying hi, then running away. At that point I took her sunglasses off so they could see her eyes, and the game kind of fizzled out. Later they ended up sitting near us on the carousel, and they seemed very sweet and curious. We also saw lots of squirrels on the walk, the kind that come right up to you because they expect you to have food. Mina Brigitta was excited to see "Nutkin" and "Twinkleberry" (from her favorite Beatrix Potter book, "Squirrel Nutkin"). We didn't have any food to give them, so Mina spent the rest of the walk chanting "No num-nums for you! Sorry!"

Yesterday we took a walk at Chrissy Field, which is a beach area on the bay just east of the Golden Gate Bridge where she used to play in the sand. She walked a good distance along the gravel path, and then rode on my shoulders for a while. It was a beautiful day in the city; it's so nice that summer is over so the cold fog is lifting. Then we went to one of our favorite little seafood restaurants in the Marina district, and sat outside shivering on the sidewalk. Mina Brigitta stuffed herself full of sweet potato fries and sticky rice with teriyaki sauce. As we were leaving, she said "Sissy full! Sissy big full!"

Today Keri took them to the playground, and she insisted on going to the hamburger place afterwards, even though she'd had a good lunch and wasn't that hungry. Then they passed the playground on the way back to the car, and Mina wanted to go back in. Keri told her she could go down the slide five times. So she did -- she counted them out, and then after five was ready to go!

Her latest rash spread a little bit onto her shoulders and neck, but seems to be resolving with twice-daily treatments of hydrocortisone. Still no indication of what's been causing it, and hopefully we'll never find out. They had been planning to drop her cyclosporine level again, but decided to hold off as long as the rash was active. The other thing is that she's still losing weight -- down from 13.7 kg to 13.4 in two weeks, about two thirds of a pound. She's definitely looking thin, but it's hard to worry too much when she's in such good spirits.

Days +143-145: no dermatologist yet

The rash on Mina Brigitta's back and neck has gotten slightly worse, so Keri went up to the clinic again today. They prescribed a hydrocortisone cream, which they said can sometimes resolve light cases of GVHD. Both Dr. Horn and Dr. Cowan were away at a conference this week, so Mina was examined by Dr. Loh, Mina's oncologist, and a resident, neither of whom are experts in GVHD. If the rash is still there by next week, we'll have one of them look at it and then maybe go to the dermatologist. Mina got her first application of hydrocortisone this morning, and it already seemed a bit better by tonight, so hopefully this stuff will clear it up and we'll never have to figure out what caused it. By the way, Mina Brigitta told Keri this morning that she needed to go to the doctor because of the bumps on her back. Not sure if she heard us talking about it, or exactly how she got that in her mind. She doesn't seem like she's worried or anything.

Mina Brigitta is still doing well. She's walking better and better, probably as well as she was before spraining her ankle. She still wears the boot outside. Hopefully we'll be able to get her to the othopedic surgeon next week so they can tell us when she can stop wearing it. She's been very cute lately. She's talking more and more to herself and to her babies, and one of her latest things is to read books to her babies. It's funny to walk by the living and hear her saying "One day ... ". She's very interested in everything relating to the pole house, so she was excited to find out that ambulances go to the pole house. Now whenever she hears a siren she says "Go to pole house?" Then she says "Somebody sick!"

Days +141-142: feeling good

Mina Brigitta is doing well lately. Keri and I were agreeing today that she finally has gotten to roughly the same point she was at last spring in between rounds of chemo. Which is to say, not quite normal yet but pretty energetic all things considered. She's been so much fun lately. Her "babies" have always had a special place in her life. Now her games are becoming more and more elaborate. The babies frequently eat with us at the table, and we give them "petend num-nums". Yesterday she wanted to give the baby "weal" num-nums. She also talks to them a lot, and has lately been explaining things to them. This morning she was telling Waah Baby that they were going out because Ana was coming to clean the house. Her latest new thing is making food for the babies before they go out. She takes little wash clothes and puts them in plastic sandwich bags, just like we do with her PBJs. This morning she disappeared for at least 20 minutes, and I didn't hear a thing out of her. When she reappeared, she had filled her little baby stroller with plastic bags full of wash cloths.

We took the kids to the playground last night after work, and Mina Brigitta had a ball. There's a small set of stairs where she fell and twisted her ankle that lead up to a small slide. She did that over and over again, probably 20 times in a row. Keri took them back there this morning, and then took them to an organic hamburger restaurant nearby. Mina Brigitta ate a big lunch, and then as they were getting into the car she told Keri, out of the blue, "I feel good!" I was trying to get her to repeat the phrase later on but she wouldn't say it again. But when I asked her if she had said that to Momma, she said "Car!", so she obviously remembered saying it.

Of course, there can't not be worries. The rash on her back has definitely gotten worse, so I imagine they'll want the dermatologist to look at her. She has a clinic appointment tomorrow, so we'll see what they say.

Days 136-140: another weekend with Dadda

Wow, didn't realize it had been so long since I updated the blog. Sorry about that! Everything has been going just fine. Mina Brigitta started tentatively putting weight on her foot about Tuesday or Wednesday, and by today she was practically running around the house. We're still having her wear the walking boot outside, but she doesn't wear it inside. She's still limping, but she also has the hip issue, so the limping will probably continue. We did make a brief visit to Pole House today; Mina Brigitta developed a little rash on her neck and back, so Dr. Horn said to bring her in today and she would examine her. She said it doesn't look like GVHD, but it doesn't look like a virus either. We've been using a new sunscreen lately, so that's the most likely culprit. If it's worse by Wednesday, they'll send us back to the dermatologist. The rash on her legs is almost totally cleared up, so otherwise there would no need to see the dermatologist.

Otherwise, Mina Brigitta seems to be doing pretty well. She's more and more energetic these days, which is nice to see. Still not much of an appetite, but people are telling me that's pretty normal for toddlers. So hard to tell what is a "normal" worry and what is something more serious. Keri and Isaac are gone for the weekend again, this time to Kristy and Bill's house in Idaho for Karissa's wedding. Congratulations to Karissa and Mitch, sounds like it was a really lovely weekend! Wish we could have been there.

Mina Brigitta and I have had a good time hanging out by ourselves. I took her to see the sea lions on Pier 39 on Friday and to the carousel in Golden Gate Park yesterday. There was a small carousel at Pier 39 too, and Mina Brigitta rode the horsie by herself. But I think the big carousel in Golden Gate Park is still kind of intimidating for her, because she still will only sit on the bench. There's a playground next to the carousel in Golden Gate Park, but it's covered with sand so Mina Brigitta can't really play there. I did put her in the swing for a while, but she was more interested in watching the other kids play. She wanted to see different play areas - the little kid sand box, the swings, the teeter-totter, the jungle gym. She kept asking if she could go and play on various things, but I had to tell her no. The boundaries are kind of softening as we're beginning to engage in the world again, but she's still very immuno-compromised so we have to try to be as firm as we can. It's not always very easy.

Then as we were walking back towards home, she told me she wanted to see "strum strum strum", which if you know your children's literature is a line from where the monkeys are playing banjos in "Hand Hand Fingers Thumb". So we walked down Haight Street until we found someone playing guitar, and sat for a while listening.

Today we went to the "yighthouse" at Point Bonita. For some reason she really loves it there. Mina Brigitta is talking so much more these days. As I was pushing the stroller back up the hill, she was talking to herself the whole way. Finally I realized that she was singing "Baa Baa Black Sheep", and she pretty much knew all the words! Then we talked to Keri on the phone after we got back to the car, and Mina Brigitta told her mother for the first time "I yuv you momma!"

Days +134-135: finally posting pictures from the transplant

Not as much to write about these days, so I'm finally taking the time to sort through the several hundred pictures we have from the last few months. Mina Brigitta is still doing just fine. She has started to put some weight on her right foot, but only while holding on to the couch or the table. She spent the morning at Emma's house today. I haven't heard the stories yet, but it sounds like they had fun. She brought "Home Baby" with her for Emma to play with. They dropped me off at work this morning, and she and Isaac were chattering and giggling to each other in the back seat. I'm sure that helps make long car rides more bearable for both of them. The only immediate worry is that she's really not eating a lot these days. Her weight was down to 13.7 kg, or 30 lbs., last Wednesday. She was 14.9 kg, or 32.8 lbs., when she first came into the hospital in January. Hopefully that will change as they continue to taper her meds.

The album I've been working on this week is from Apri 23, when she was admitted to the hospital, to about mid-May, right before she became seriously ill with graft-vs.-host disease. There are some fun pictures in here, I hope you enjoy them. The transplant day, in particular, was a very warm and happy day, and it was fun to look back through these pictures. The next set will be totally different. I'm hoping to get another album posted by this time next week. Here's the URL:

http://www.mendozabaseball.com/minabrigitta/bone%20marrow%20transplant/index.html

Days +131-133: catching up on her sleep

Everyone was catching up on their sleep this weekend. Keri slept until 8:30 or 9:00 both days, and Mina took 3+ hour naps both days. Today I finally woke her up at 6:30. I was worried she was going to sleep all the way through the night. In normal circumstances I wouldn't mind that, but she's not eating a lot these days so I wanted her to have some dinner.

We went and rode the carousel in Golden Gate Park today. We tried to do it yesterday, but didn't get out of the house until after lunch, and then Mina said she wanted to "seep in sodo" (go to sleep in the stroller). She was excited to go "wide horsey", and talked all the way down there how she wanted to ride the horsey by herself and how she was going to go up and down and "wound and wound". I was happy to see that she was excited, because the last couple times she's been overwhelmed or intimidate. Then when we got there, she said "No, bench!" I guess she decided wound and wound was good enough and she didn't need to go up and down too. But she sat on the bench by herself while I helped Isaac ride a horse, and then she wanted to do it again. Then afterwards I let her go on the swing at the nearby playground. She kept wanting to go higher and higher and higher (which to me is a lot scarier than the carousel, but whatever...).

Still not putting any weight on her foot, though the swelling is nearly gone and she's at least talking about wanting to walk now. No need to push her. She sees the orthopedic surgeon again this week, so hopefully we'll get an idea of what to expect. Still doing well despite the lower doses of meds, so looks like everything is on track.

Days +129-130: another positive clinic appointment

The doctors were very happy to see her progress at her appointment yesterday. Her rash mostly subsided, her blood counts are still pretty good despite all the mds, and she's not having any other symptoms of GVHD, so they're continuing to taper her meds. She's now that the lowest dose of prednisone, and she'll be at that level for a month, after which they'll have to test to make sure she's producing the appropriate hormones on her own before they drop it completely. And they dropped her cyclosporine from 30 ml to 25 ml three times a day. Assuming no change, they're planning to go to 20 in two weeks. It's a long slow process, but it's nice to mark these points of progress along the way.

Her right ankle is still swollen and she's still not walking on it, even with the walking boot, but she's in good spirits otherwise. Amber was supposed to come watch her this week, but hasn't been able to because she's been feeling under the weather. When I told Mina that Amber was sick, she said "Amba blah?" (meaning throw up). I said I didn't think so, but I didn't know for sure. Then she said "Amba pole house." I said Amba was only a little bit sick, so she didn't have to go the hospital. They went back to the background today, and she had a great time on the swing again. Keri said she waited very patiently until the babies that were there ahead of her were done. At least there's one there she can do.

Happy Birthday to Keri and Teri today! Too bad we can't all celebrate together.

Days +127-128: getting used to it

Mina Brigitta's psyche is slowly returning to normal, if not her ankle. It's still a bit swollen and sore, and she still won't put any weight on it despite finally getting the walking brace today. But, she's in much better spirits. She's crawling freely around the house now, and getting on and off the couch by herself, keeping her right foot off the ground. She's finally sleeping better at night, too. She's still waking up, but just once or twice like before she sprained her ankle, rather than every couple of hours.

It's been fun to see her cute side come back out again. This morning as they were driving me to work, she was talking softly to Isaac and to Waah Baby, who was in her lap (of course). She was saying things like "Ahmost dere, Bubba!" "Don't fall asleep!" I think it was because she knew they were headed to the playground. And last night when she woke up at about 3 AM, instead of crying and screaming she just started crawling toward the double bed (where Keri and Isaac sleep). I asked her if she wanted to get up and sleep with Momma, and she said in a loud, theatrical, whisper "Yeah!". So she crawled up onto the bed and went to sleep.

We did end up going to Katy and Awais' Labor Day party. Katy's sister-in-law Antonella posted some great photos: http://pavesina.smugmug.com/gallery/786730/. Mina Brigitta was frankly overwhelmed. She spent most of the party inside sitting on Keri's lap, which was probably better from a health point of view anyway. She ventured out from time to time, and eventually got more comfortable and ended up riding Emma's tricycle around the pool deck. Lars Isaac really enjoyed splashing in the pool. His eyes were as big as saucers the whole time we were in there, and after we came out he kept pointing to the pool and crawling over to the fence to look at it. Even though it's hard for her, I do think the stimulation is good for Mina Brigitta. She she she had fun, and she seems happier and more content after an event like that.

We'll see what they say in clinic tomorrow, but to my eye the rash on her legs is slowly resolving. At the very least it doesn't appear to be getting any worse. The dermatologist said 4-6 weeks and it's been nearly 4. Would be nice to be able to rule out GVHD at this stage.

Days +124-126: A rough few days

Mina Brigitta has been very tired and fussy these last few days, and has wanted to be held a lot. Tired because she's been waking up screaming in the middle of the night. She was doing this before, but the last few nights she's been up every few hours. She does occasionally complain of pain, so we've been giving her Tylenol, which seems to help. With the combination of being in pain and constantly tired, Mina Brigitta has been a real handful the last few days. She can't walk, so she pretty much wants to be held all the time. Which is tough to do now that Isaac is totally mobile and our house isn't sufficiently baby-proofed that you can really turn your back on him. When she gets frustrated she starts to scream, which has been happening a lot lately. I know that a sprained ankle really is way down the list of worries, but it's actually pretty tough from a quality of life perspective.

We finally took the plastic splint off that they had given her on Thursday, and discovered that it had given her three large blisters. She was supposed to get a walking brace, but the place they sent Keri to didn't have the right size. They're hoping to have one for her on Tuesday, but for now she has nothing on it. She hasn't shown any indication of wanting to walk yet, and her ankle is still a bit swollen. Although this morning she seemed to be feeling somewhat better. She actually crawled today for the first time, all the way from the living room to the back bedroom. She did see the orthopedic surgeon Friday, who glanced at the X-rays and said it didn't look like there was a fracture but said they couldn't rule it out. They're supposed to go back in two weeks.

This afternoon we drove down to Fremont to go on a walk in a nature preserve with our friends Rich and Oligica and their one-year old Nikola. Lately Mina Brigitta hasn't reacted well to going new places, and today she screamed for half an hour as we walked back to the cars. Afterwards we went to "Little Kabul" in Fremont and got kabobs. I think she did enjoy that.

Isaac is becoming quite a handful as well. He's healthy, mobile, energetic and fearless. We've started taking him to the playground, because the flat is getting a bit small for him. Keri took the kids this morning while I got some work done, and Mina sat in the swing for 45 minutes while Isaac crawled around.

Tomorrow our friends Katy and Awais are having a BBQ/pool party. We're trying to decide if we can go or not. It's a small gathering, and the only kids will be Emma and Nikola, who are both healthy. Plus we would mostly be outside on the patio. Isaac would love to swim, and Mina would at least be entertained even if she couldn't participate. But she's really not supposed to be at someone else's house.

Days +121-123: Just when things were going so well...

Keri decided to take Mina Brigitta to the playground this morning for the first time in a long time. It's one that I go by on the train on the way to work, and I saw that it wasn't crowded, as it's usually not during cold weather. It has a surface of crushed tire, and only a little bit of sand way over in the corner, so we've talked about that as a potential option when she was feeling up to it. She was very excited -- she kept saying "Sissy dis?" Then she said "Sissy sand?" and Keri had to say no. So what happens? Right away, first thing, she fell off the first step of a piece of equipment and badly twisted her ankle. She cried out in pain and wouldn't put any weight on it. This was the first week that she didn't have a clinic appointment, but Keri had to take her up clinic for X-rays. Luckily they didn't see any broken bones. They gave her a little plastic splint wrapped with an ace bandage. They have an appointment with an orthopedic surgeon tomorrow to get an expert opinion. This doesn't appear to be anything serious, but we really worry about falls because of the osteoperosis. We'll find out tomorrow how soon we can expect her back up on her feet.

Otherwise she had been doing well. She's eating well and has had increased energy. Today she was kind of subdued. She's probably still in some pain, plus she probably doesn't quite know what to think about the whole thing. She didn't have a lot to say about it when I got home from work, but she seemed in pretty good spirits otherwise. She still wakes up crying every night, and tonight she's already woken up twice, so she must still be in pain.