Days +119-120: slow improvement

Mina Brigitta has had a couple of very nice days. Her energy level continues to improve. They went to the lighthouse at Point Bonita (http://www.cyberlights.com/lh/calif/bonita.htm#) today, and she walked half a mile down the paved trail and a quarter mile back. She loved the little teeny lighthouse and didn't want to leave. They actually had some nice weather today, which is unusual for this time of year.

She's slowly looking better too. Her face has lost most of the steroid-induced puffiness, and her color is slowly improving. Her skin has had an unhealthy-looking grayish tint to it because of the hyperpigmentation caused by the rash back in May & June. That seems to be slowly fading, and she's getting some pink coloring back in her cheeks. It's still very apparent on her arms, trunk and upper legs. Her hair is growing in nice and thick, which is good to see because permanent hair loss can be a side effect of both the radiation and GVHD. It's to the point now where you can begin to see some waves in it, but Isaac will have his first haircut long before she does.

Grandma flies out tomorrow. The kids will miss her a lot, as will Keri and I. It's so nice that she could come and help out while I was gone. Thankfully, I don't have any more trips planned for a while.

Days +116-118: Fun with Grandma

Mina Brigitta continues to do well. She's eating better, has more and more energy, and her stools have settled into a healthy once a day average. The only nagging worry is this new rash on her legs. I think it might be getting a little worse, but it's hard to tell. Hopefully it'll go away before they decide they need to a skin biopsy.

She was very happy to see her Grandma. Isaac too, for that matter. Mina's been following her around like a shadow ever since she arrived. This morning Grandma took her out for a walk, and she didn't want to come back in. Eventually they came back to pick up a PBJ and some milk, and then went right back out again. But an era has passed: Mina no longer says "Momma's Momma" unless you prompt her. She's moved up to "Gamma".

The other thing that's been fascinating to watch is how elaborate her rituals of taking care of her baby are becoming. Baby goes down for a nap, brushes her teeth, takes a bath, and we're pretty much setting the table for 5 these days (6, with Gamma here). Even though she has about 8 baby dolls, the only one she takes care of this way is "waah baby", which is the doll she got from Anta Kristy and Uncle Bill last Christmas that either cries or laughs when you press its chest. She still has to comfort the baby whenever someone makes it cry. The most interesting thing she's doing is taking baby to "pole house" (hospital). She usually says our bedroom is pole house, and then she bundles the baby in the stroller and wheels her in there. I guess she's going to pole house a lot, so it's only natural. Come to think of it, it's such a part of her life that it's entered her regular vocabulary: when she says goodbye, she sometimes says something that sounds like "you week!" That comes from her trips to the pole house, where everyone says goodbye to her by saying "See you in a week!"

Days 114-115: Nothing much to report

Mina Brigitta had her Wednesday clinic appointment today, and it went just fine. Dr. Cowan was happy to hear the dermatologists' report about her rash. He didn't think it looked like GVH, but he admits to being subject to wishful thinking at times, so he was glad to hear the specialists agreed. At the same time, he's surprised that Mina Brigitta would catch a virus with all of the anit-viral drugs she's been on. The rash is a bit worse, but nothing to change anyone's mind. Dr. Cowan wants to continue tapering Mina Brigitta's prednisone dose, and dropped her cyclosporine dose down as well because her levels have consistently been coming back high since we got her gut issues worked out. Her CMV test was negative last week, which was unexpected but good news. If this week's is negative as well, we'll be able to drop the gancyclovir to once a day.

Mina Brigitta has been quite cute the last few days. This morning she spent quite a bit of time on her rocking horse that she got from Zeedie. She was rocking back and forth saying "Up and down! Up and down!" One of her things lately is to "run" around the house, even though she's barely moving faster than a walk. She also likes to read books by herself, and she's started reading them out loud. Tonight she was walking around the house holding the Dr. Suess book "Wocket in my Pocket", and saying "yoto in coto" ("jertain in the curtain"), "bodo in sodo" ("zower in the shower"), and "bock in cock" ("zlock behind the clock").

Days 112-113: Back on the upswing

Sunday I took Mina Brigitta down to Golden Gate Park to ride the carousel. She was excited to go, she kept saying "Up and down!" and making circles with her finger. But I think it's a bit overwhelming for her, kind of big and noisy. She didn't want to sit on any of the animals, so she sat on my lap on a bench. Then when I asked her if she wanted to ride again, she said no. Which is fine, it was a bit more crowded than I would have preferred anyway. We watched it for a while, then went out and I bought her a hot dog. She sat on a park bench near the playground watching all the kids and ate about half of the hot dog, two-thirds of a PBJ, and drank most of a box of rice milk. A woman that was sitting nearby commented on what a good eater she was. I just had to chuckle to myself. She meant the comment well, but she couldn't have any idea about all that is wrapped up in that issue for us.

We headed home around 2:00, and she was so tired that she asked me to put the stroller back so she could sleep. She didn't wake up when I brought her upstairs. Then we had to go get Keri at 3:30, and she fell back asleep in the car and didn't wake up when Keri and Isaac got into the car, not even when Isaac was crying and whining on the way home. They had a great time up north. Isaac got lots of cousin time and Grandma time, and Keri and Teri and Melissa and Zeedie and Kristen all had fun at the reunion.

Keri took the kids to Berkeley today to meet Patty for a walk and get out of the fog. She said it was actually hot over there. What a concept. We didn't see the sun here all weekend. They had a nice time. Mina Brigitta was playing with Isaac's Friedrich Nietsche doll in the car on the way back and making it talk to Bubba. I haven't heard it, but Keri says Mina can say "Nietsche" pretty well. The other thing she was doing was feeding Bubba little bunny-shaped cheddar crackers, and she was making them hop on the way to his mouth, and saying "Hop! Hop! Hop!"

Medically, she seems to be doing pretty well. She didn't poop today, which I'm sure is the first time that's happened since at least May. We're going to try expanding her diet a bit now. Keri gave her some soy milk today, which doesn't seem to have caused any ill effect. Also, the rash on her legs hasn't gotten any worse. She's regaining some energy, but she's also starting to have more frequent tantrums and she's been waking up at least once at night screaming. Not sure what's going on there, but I'll be happy to take that over what we've *been* dealing with.

Days +109-111: Quiet around here

Momma and Bubba are up in Washington for the weekend, so things are pretty quiet around here. Keri's 20th high school reunion is tonight. They went to dinner and a local bar last night, and tonight is the formal party. She called me today after seeing Zeedie on Guemos Island, raving about the festival they went to and how beautiful it was on the ferry with Mt. Baker in the background. Sometimes it's hard being away from the Northwest. Isaac is having a ball with his Anta and cousins and Momma's Momma, though Keri says he's not used to having quite so much attention.

Mina Brigitta and I have been taking it easy here. Normally it would be fun to have a few days alone with one of the kids, but Mina can't really do a lot these days. No zoo, no woods, no indoor public spaces. So we're mostly hanging out around here. My friend Awais, Emma's Dadda, came by this evening and we walked down to the local burger joint. Mina Brigitta walked all the way there, pushing "Waah Baby" her baby stroller. We were intending to get takeout, but Mina Brigitta wanted to sit at the outdoor tables, despite a temperature of about 60 degrees and a cold wind blowing. She ate about half a burger and some fries. She's been eating OK the last few days, and her poops are down to once a day and looking pretty normal, so that's all a big relief.

Yesterday we had an appointment with the dermatologist. Several of the doctors came by to say hi to Mina Brigitta. Someone from that practice visited her once a day while she had that terrible rash, so they all knew her and had been wondering about her. They were very pleased to see how well she looked. Sometimes when I get worried about things, I have to force myself to remember where she was at then and be grateful for where she's at now. Seeing those doctors again kind of brought that home again, and it was actually a little bit emotional for me.

Anyway, they looked her over pretty carefully, and even brought in the director of the practice, and they all said that they'd never seen GVHD look like the rash that's on her legs. They're not ruling it out, of course, and they were considering whether to do another skin biopsy to confirm, because of how serious GVHD can be. But her rash looks just like the kind of rash that is caused by any one of a number of common and harmless childhood viruses. If that's the case, they said it's likely the virus is already out of her system by now. If it hasn't gone away in 4-6 weeks, or if it gets any worse, they'll probably do a biopsy. This is of course the best news we could have hoped for. Let's just hope they're right.

Day +108: Clinic appointment

One thing about Dr. Cowan, he doesn't try to make up answers when he doesn't have any. He said the bumps on her leg "don't look like classic GVHD", and he's mystified why they would still be there and maybe even spreading a little bit. He's sending her to a dermatologist to see if they have any better idea. He said she looks good otherwise, and he's of course pleased that her gut issues seem to be resolving. Her blood counts aren't back yet, so no news yet on the CMV cell count or her white cells. We'll be watching both very closely these next few weeks.

We did receive some very good news, which is that the results of the second DNA analysis on her blood are back, and they show that it's still 100% donor. The first one was done around the end of May. They'll do them every three months or so from here on out. Dr. Cowan said now that she's had two tests that show 100% donor, they'd start to worry about relapse if a test came back at less than 100%. Since that's still a frighteningly real possibility, we're very happy with the news.

Days +106-107: a houseful of kids

Well, Mina Brigitta's funk only lasted a day. She woke up in a seemingly good mood on Monday morning, and she had a lot of fun with Amber while Keri worked on a paper. Today we had a house full of people, as Teri's sister-in-law Lisa was here with her kids Bailey and Jack and mother Linda. They were visiting Lisa's grandfather in Sacramento, and drove the three hours into San Francisco just to see Mina Brigitta. Bailey is ten and Jack is probably six by now, and they've been praying for Mina Brigitta and sending really nice drawings and care packages for months now, so they were looking forward to seeing her in person. They remember her from her visits to Washington, too. Melissa also came over with her daughter Bliss, who is four. So there was a houseful of kids.

Keri said Mina Brigitta was in one of her solemn moods, but she had a good time playing with the kids. She was so tired tonight she went to bed at 7:30. She seems to take a day to recover from days like this, so she'll probably be tired tomorrow, which is unfortunate because she has a clinic appointment first thing in the morning. But she needs and likes the interaction with other kids, and it was so nice of Lisa and Linda to drive all this way to see our girl.

Mina Brigitta definitely has some new bumps on her legs. We thought they may be going away, but instead they seem to have become a little more prominent over the last few days. They're not red, and you have to look at the right angle to see them, but you can feel them when you rub your hand over them. We'll see what they say tomorrow, but it may be the first sign of chronic GVHD. The bumps themselves are of no consequence; the worry is what they might portend. Her gut seems to be holding steady, though. Her poops have mostly been fine, and she's continued to have an appetite. We're really hoping the c. diff. is gone, because the gancyclovir she's getting now for the CMV causes her blood counts to drop, which makes her more vulnerable to infection.

Days +104-105: not sure what to think

Mina Brigitta had a terrible day today. She woke up on the wrong side of the bed, was cranky in the morning, took an early nap, was cranky at lunch time, and took a long afternoon nap. In between, she wanted to go for a walk, but when we got out she refused to get in the stroller, so I had to carry her while pushing Isaac in the double stroller. Needless to say, that didn't last long. We ended up sitting on a bench by the side of the street while I fed her a jar of baby sweet potato and chicken dinner. She was cranky when she got up from her nap, and pushed Isaac down onto the floor a couple of times. Just a very hard day for our girl.

BUT, she didn't poop. She only pooped once on Friday, then twice yesterday, and today her only poop was in the morning. And, her stools are looking much better. And to top it off, she ate today. She started the day off asking for breakfast. She didn't eat a huge amount, but there were days last week where she didn't eat a bite until lunch. She had some food at lunch, again not a whole lot, but she was very interested. Then tonight I made moussaka for dinner (eggplant casserole with ground lamb), and she kept asking for more and more. She picked out the eggplant pieces and spat out the onions, but who's complaining? Also, yesterday we thought she might be getting some small bumps on her legs, but they weren't doing anything today.

Her increased appetite today is like a ray of sunshine in a time that has been clouded by increasing worries. With the lack of appetite, the diarrhea, and generally feeling low, then the avascular necrosis in her femur, and finally the positive CMV test, it feels like Mina Brigitta's challenges have been mounting. Seems like she hit a high point about 2-3 weeks ago, when she was getting into the groove of being home and feeling better and better. Things have definitely been harder since. Let's hope her gut issues are finally resolving. Dr. Cowan did say there was a small chance the gancyclovir would fix them. Perhaps she's had a CMV infection in her gut in addition to the c. diff. The biggest worry right now is chronic GVHD, which can be triggered by CMV. We know she's at high risk because of her severe acute GVHD, so we're kind of expecting it. Still, we'd much rather not have to deal with it. At the request of Katy, here's a link for GHVD: http://www.emedicine.com/ped/topic893.htm. I also came across this interesting page that describes some of the long-term issues that Mina Brigitta has to worry about: http://www.emedicine.com/ped/topic2551.htm.

Day +103: back home again

A quick stay at the hospital this time. Mina Brigitta was actually quite excited to be back at the hospital, though she did ask to go back to the "new home" around bedtime last night. They gave her gancyclovir last night and again this morning. We'll be giving it via IV twice daily for at least a week. The other thing they wanted to do was have her see an opthamologist, which happened late morning. CMV can show up lots of places, but the most common are the eyes, lungs, liver and gut. He said her eyes looked fine. It's just a waiting game now, to see if she develops any symptoms. It is apparently very common for kids to become CMV-positive after BMT, and since the development of gancyclovir it doesn't cause problems most of the time. Especially if they catch it early, which they obviously did with Mina Brigitta since they only found one, single, solitary CMV cell.

The possibility of gut involvement is a bit of a worry at the moment. Mina Brigitta's stools have come back negative for c. diff. this week, yet her diarrhea and nausea has continued. The longer this goes on, the more likely it is that it's due to something like CMV. The other worry is that CMV is frequently accompanied by manifestations of chronic GVHD. We've been a little bit worried about her skin lately, although the symptoms are so mild we aren't convinced we're actually seeing them. The fact that these are all real possibilities now is kind of discouraging. But we probably need to expect chronic GVHD at some point, given the severity of her acute GVHD. Also, Keri finally got to meet with the bone specialist on Wednesday. Mina Brigitta does have a couple of small spots of avascular necrosis in her right femoral head (http://www.emedicine.com/radio/topic70.htm). The prognosis for this problem is pretty bad in older kids and adults, but I'm not able to find much information about how it affects kids Mina's age. The specialist said it could progress, stay where it's at, or resolve, and it's just too early to tell which. They'll watch it, and probably repeat the MRI every six months or so.

Kari and Carmen fly out tomorrow night. It was nice that Mina Brigitta got to come home and be able to spend some more time with them here. I'm looking forward to a full day of family time tomorrow.

Days 101-102: back in the pole house

Mina Brigitta's weekly test came back positive for the cytomegalovirus, or CMV (http://www.emedicine.com/ped/topic544.htm), which is a virus in the herpes family. CMV can be very serious in immunocompromised patients, so they brought us into the hospital so that Mina can get an antiviral agent called gancyclovir. Luckily the test only found a single CMV cell, so it seems they caught the infection very early. They're planning to keep us in here until Friday afternoon or perhaps Saturday. Then we'll have to give the GCV at home, twice daily through the IV. With any luck, she'll never develop any symptoms, but they'll of course be watching her extra carefully over the next few weeks.

At the same time, her gut issues are not resolving. There is a strain of antibiotic-resistant c. diff. that's been going around the hospital, so that's still the most likely culprit. Her stool culture from Sunday hasn't grown anything yet, but that's not too surprising. They took another one today, so we may know by tomorrow whether she still has the c. diff. If that comes back negative, they'll have to start looking elsewhere. The CMV is another possible cause, as is GVHD, or ulcers or other irritation related to her medications. The other thing is that CMV can sometimes trigger GVHD outbreaks, so she could end up with "all of the above". As much as I hate the fact that she's now positive for CMV, in a way I welcome the extra attention she'll be getting now, because the gut issue has been quite worrisome.

It's a drag that this hospital stay has to coincide with Kari and Carmen's visit. They spent a couple of hours here today, but Carmen was kind of bouncing off the walls after a while. They can still help out with Isaac, of course, but what we really wanted was for Mina Brigitta and Carmen to spend some quality time running around together. Hopefully they'll let us out of here on the early side tomorrow.

Days 99-100: looking up, and then back down again

Yesterday I thought maybe Mina's gut issue had resolved on its own. She only pooped a couple of times on Sunday, and then not until 1 AM yesterday, and her poops looked much better. But today she hardly ate anything all day long, and then had several poops this afternoon and evening with blood in them. We haven't heard anything about the stool sample we dropped off at the hospital on Sunday, so maybe that means the c. diff. is gone. She has a clinic appointment in the morning, so we'll see what they have to say. Her spirits seem very good otherwise, so we're really hoping that means it's nothing too serious going on, but it's a pretty big source of worry for us right now.

I think I somehow missed a day in the official count, because Day 100 is in the title of today's entry, but when I add it up, Day 100 should have been Sunday. Oops, guess we forgot to celebrate. Actually, we've been worried enough that it would be kind of hard to celebrate right now. Day 100 is seen as a milestone; if you've made it to Day 100, they pretty much consider that you survived the transplant. Of course, each case is different, and Mina Brigitta is obviously still facing lots transplant-related issues. The bigger milestones will be when these hip and gut issues start to recede, when she's off the steroids altogether, and when they start tapering her cellcept and cyclosporine. Still, looking back on where she's been, it's pretty amazing that she's doing as well as she's doing.

I'm off to Fort Collins, Colorado on a business trip tomorrow, and Anta Kari and Cousin Carmen are coming down to help out while I'm gone. They arrive at 8 PM, and will stay until Saturday. I'll miss them Thursday, but it will be lots of fun to have them here.

Days +97-98: a quick visit to "Pole House"

That's what Mina calls the hospital. We became concerned because her diahrrea got worse on Friday and Saturday, so we called up to the hospital Saturday. They told us to watch for signs of dehydration, but based on our description didn't see a need to bring her in. But Dr. Goldsby said he'd like to take a look at her today just to make sure. So I packed Mina Brigitta and Isaac into the double stroller and went up the hill while Keri went to Costco. Mina Brigitta was very cute in the hospital. She wanted to walk down the corridors, and kept looking around and saying "Pole house!" She saw the room we were in back in March, and said "Sissy room!" Then when we ventured into the back area where the BMT rooms are, she wanted to go into her old room. She didn't really understand why someone else was there so that we couldn't go in.

I could tell that the nurses were a bit nervous seeing us. Dr. Goldsby had told them to hold a room just in case they needed to admit her. They definitely enjoyed seeing Mina and Isaac, but all in all they'd prefer not to. Dr. Goldsby said she looked just fine, no signs of dehydration and no need to keep her there. He even said her skin looked great, which several of the nurses said as well. I guess that's the difference between seeing her every day and not seeing her for a few weeks. I still see the brown spots of hyperpigmentation, and the way she gets splotchy for apparently no reason. He did say that she may need to be admitted if her poops don't get any better, however. He seemed to be thinking this was probably from the c. diff. as well, but again it could be related to the meds or, in the worst case, GVHD.

Keri was able to get an afternoon off and go to a cafe and then a movie after Costco, while the kids and I napped. Then our friend Liza came to visit in the late afternoon. She has nieces and nephews that are a little older than Mina, and she's very good with little kids. We hadn't seen her in a few months, but we do have a great picture from her last visit that cycles up on our screen saver of her sitting next to Kari in the hospital room. Mina must still have a pretty good memory, because when I told her that Liza was coming to visit, she said "Anta too?"

Days +95-96: a full month home

Mina Brigitta has had a lot of fun the last two days. Emma came to visit on both Thursday and Friday morning, and Amber babysat Isaac and her on Thursday afternoon. She and Emma are becoming quite comfortable together. They interact and play together, but also play separately. One cute thing they do is exchange baby dolls. On Thursday Mina asked if Emma was going to bring a particular baby, because she had played with it last time they were here. Then when Emma came to the door, the first thing she said was "Home baby?", referring to one of Mina Brigitta's favorite babies. It's interesting to see what they play with. Emma likes to play with Mina's shopping cart, and she puts her baby in the seat the right way. But she has no interest in Mina's syringes and medical supplies.

Perhaps it's just all the stimulation, but Mina has been very tired and without much appetite when home alone. Also, her poops are getting runnier and more frequent again after seeming to improve for a few days. It's hard not to worry, because there are so many ways that things could start going wrong. She's at high risk for any number of serious and potentially life-threatening complications. We did finally get her blood counts back from Wednesday, and everything looks absolutely beautiful, so that helps a bit. Probably what's going on is either that the c. diff. is taking a long time to respond to the Flagyl, or else she's got some other G-I issues related to her medications. It doesn't seem like GVHD, at least in our limited experience, which is a good thing.

Mina has been home a month as of today. It's the longest stretch she's been out of the hospital since January. Doesn't seem like quite that long, probably because she's still not feeling nearly as well as she did when she was home before. Mina calls the hospital "pole house", which at least has most of the right consonant sounds. I thought she was over missing that place, but the other day she was reading a book in which a spider was crying. When I asked her why the spider was crying, she said "miss pole!" I said "Does Sissy miss her pole?", and she answered with an emphatic "Yeah!"

Day +94: another clinic appointment

Mina Brigitta had to spend another three hours at the clinic today for a regular appointment, an EKG and an echocardiogram, and a visit to the opthamologist. They scheduled those because her heart rate had been high (~140) at her last two appointments. The initial word is that there's probably nothing to worry about, although they wanted to wait for the official report from the cardiologist. Everything is fine with her eyes as well; no indication of GVHD. We had been concerned because she is rubbing her eyes a lot, and they wanted to make sure she is still producing tears. Keri said she was a very good girl through most of the visit, but she did have a very convenient crying spell when the opthamologist tried to look in her eyes so he could verify that she is indeed producing tears.

But Dr. Cowan was very pleased with how she looked today, so that helped to alleviate some of our concern. We had been kind of worried with everything that's been going on, plus she had been kind of low-energy all day and had been picking at her food but not eating much. And I thought she looked kind of ashen-faced when I got home from work. We had run out of the anti-nausea medication a couple days ago, and she had been asking for it ("No-blah?"). We're never sure if she asks for it because she's feeling nauseous or because she just likes the taste of it. But half an hour after getting it tonight, she was at the table eating yogurt and granola and drinking milk. Then she got kind of wound up and didn't go to sleep until nearly 10:00.

Isaac is officially mobile now. He still isn't crawling on both knees, but he's figured out how to get around with his left knee on the floor and pushing off with his right foot. One of the first things he did was go over and turn the stereo on. Looks like we're going to spend this weekend doing some more child-proofing.

Days +92-93: a special day for Keri and me

It's our anniversary today. Eight years ago today we were camping on the beach at Deception. Hard to believe it's been eight years. Then again, Keri said it felt like eons ago. Not much energy for celebrating this year, but we did make a nice salmon dinner and open a bottle of good wine before Keri went to bed.

Mina Brigitta is pretty much the same as she's been over the last week or so. Still having loose stools with some blood and mucous, though last night was the first night in a while that she didn't wake up to poop in the middle of the night. She's still limping, and Keri thinks it might actually be a little worse than last week. And she's still kind of low on energy and appetite. But her spirits are good otherwise, and her vocabulary continues to grow by leaps and bounds.

I've been trying to keep track of some of the cute things she's been saying because people seem to like to hear them, but I'm always too tired to remember them when I finally get to the blog. Here's one I've been saving: She likes to eat cheese, and the other day we had some goat cheese. So we told her which cheese was "moo cheese" and which one was "bah cheese". The third one she insisted had to be "neigh cheese". Another one is from when Keri was trying to teach her how to pick up her toys. She kept saying "pick it up!", so Mina now thinks "pick up" is pronounced "pickee up". She's also now saying "wakee up", as in "Bubba wakee up!"