Days +90-92: a mellow weekend

Keri went out by herself on Saturday afternoon, and I was planning to take the kids for a walk, but Mina Brigitta took a three and a half hour nap so we ended up staying home all day. Isaac was in the happiest mood all day long. Maybe he enjoyed the quiet. Then today Stacey Evans came to visit with her husband and 3 year-old son Miles. Stacey was one of our favorite nurses at UCSF, but left around the beginning of May so she missed all the fun part. She was happy to see Mina looking so well after all she had heard, and Mina loved having Miles here. We hung out for a while and then walked down to Golden Gate parked and rode the carousel. Mina picked out a zebra, and we wiped it down with a Clorox wipe before putting her on it. But once it started to move she wanted to sit on the bench with Dadda. Isaac had his first ride as well. It's perfect timing because he's just starting to wave, and he waved at Momma and Sissy watching from the side.

We did get the results back from the MRI. There is a spot on her femur that they're concerned could be osteonecrosis. We will follow up soon with a specialist. They don't sound panicked or anything, but it will be good to some more information. The other news is that she does have a c. diff. infection, so it's back on the antibiotics. It's kind of a relief. No infection is good news, but c. diff. should in theory be easier to get rid of than GVHD. She's still been waking up to poop at night, sometimes twice or three times, which has been pretty rough on me. But hopefully the antibiotics will start to kick in very soon.

Day +90: no word on MRI yet

Mina Brigitta had some trouble with the idea of skipping breakfast this morning, but we got by and she did fine at the clinic. When she saw the MRI machine, she just said "No!" She woke up kind of rough from the sedation, but got over it quickly and had a relatively normal day at home afterwards. No word yet on what the MRI showed. We'd like to think that no news is good news, but they probably just didn't get to it. But I don't think we're really expecting it to show anything. She did have a runny poop this morning with a tinge of green in it, which was enough to make me get a pit in my stomach. But she hasn't pooped since, so maybe she's turned a corner. We should find out tomorrow if her stool culture is growing the c. diff. bacteria.

The other big news around here is that Isaac did the "so big" thing today! And he also claps his hands if you say patty-cake. He's become quite effective at maneuvering himself around without quite crawling, but it's literally a matter of hours until he puts two and two together and figures out he can do better. Keri said he was cracking up laughing at Mina the other day. They'd gone through the car wash, and Mina would imitate it by drawing a circle with her finger and making a kind of a "weeesh" sound. For whatever reason, Isaac would just crack up whenever she did that. She eventually figured out she was making him laugh, and then she was really having fun with it.

Days +88-89: another day at the clinic

Mina Brigitta received another dose of IVIG (http://www.itpkids.org/docs/ivig.html) today, which required another five-hour clinic visit. Isaac went to a babysitter, who has a young granddaughter and a dog, so he had a blast. Mina's doctor's appointment was a bit sobering. It's been so nice to see her having so much energy, we were probably secretly hoping they'd say how great she looked and send us on our way. But they're going to go ahead with the MRI tomorrow morning, because her right foot is still turned out a bit when she walks. Also, her heart rate has been high the last two visits, so they're going try to schedule an echocardiogram and a pulmonary function test as soon as possible. Apparently GVHD can cause fluid buildup in the chest cavity outside the lungs, which could reduce lung function and cause the heart to have to work harder. They can't say what's been causing her loose stools, but they said to keep her milk products to a minimum still and we need to collect some stool for a c. diff. test, in case the previous round of antibiotics didn't quite do the job. Kind of a lot of reminders of where she's at in the process, just when we were maybe beginning to let our guard down a bit.

Also, the nurse practitioner said it probably wasn't a good idea to go to Muir Woods because of aspergillis spores (http://www.aspergillus.man.ac.uk/indexhome.htm?languages/index.php~main) in the air. She wears a little paper mask whenever she's out, but obviously it's not 100% effective, and aspergillus is very serious. Dr. Horn was a bit less emphatic, saying there are no studies of that kind of situation, but there are studies showing that immunocompromised adults have contracted aspergillis from gardening. She basically left it up to us, so Keri and I will have to figure out what we're comfortable with.

Days +86-87: lots of energy

Mina Brigitta is really settling in to her new house. She's spending more and more time doing things on her own -- changing her babies' diapers, flushing their tubes, and just running around the house. She's developed this high-pitched shriek that she emits for no apparent reason when she's feeling good. She's had lots of energy the last couple of days. Keri took the kids to meet Katy and Emma at Muir Woods again today. Mina Brigitta at first wanted to be in her stroller, but Emma was walking so pretty soon Mina Brigitta wanted to walk too. Then pretty soon they were off and running down the trail. Keri said Mina was huffing and puffing from the run, but it's great for her. Then just when she was getting overwhelmed and wanting to go home, they discovered that there were holes in the trunk and base of the big redwood trees, where bunnies might live. That kept them going for awhile. Then finally they came to the tree you can stand inside of, and Mina didn't want to do it until Emma went in and was having fun. It's so good for her to be challenged like that. Our kids have been so deprived, they both just drink it in eagerly when other kids are around, though Mina does get overwhelmed pretty quickly.

Her leg is obviously feeling much better, because last week at this time she was barely walking, much less running. They'll see her on Wednesday and probably decide to cancel the MRI, which is now scheduled for Thursday. Keri did call up to the hospital today because Mina is still having some diahrrea. The nurse practitioner said they probably wouldn't change anything based on how well she's doing otherwise. She's been waking up with a poop at about 1 AM every night, so it's been a bit rough on us, but we can't complain too much all things considered.

The other thing she's doing so much more of these days is talking. It's like getting out the hospital just opened up a floodgate. She's learned how to say "down", instead of "doo", which is what she said before. And yesterday morning she asked me to read a "booook", instead of "coke". She's also figured out everyone's names. At one time she was walking around saying "Ah-nee! Ah-nee!". She also says "Kay-ee" and "Eye-gack". Then yesterday and today she was walking around the house saying "Meena Beeta" over and over again.

Day +84-85: a hot day in San Francisco

Today was one of those days where an east wind kept fought the constant onshore breeze to a standstill, and the fog stayed out at sea. This happens a handful of times every summer, and when it does it gets hot in the city. Officially they're saying 81, but it sure felt hotter than that. Whenever it's hot in the city, it's much hotter farther east, so our friends Rich and Olgica, who live across the Bay in San Leandro, came into the city to escape the heat, and brought their son Nikola, who is 13 months old. We hadn't seen them since early April, but when I told Mina Brigitta that Nikola was coming, she said "Baby!". We hung out in the apartment for awhile, then went for a walk in Golden Gate Park. Mina Brigitta really wanted a peanut butter & jelly sandwich ("PB&J") to take along on the walk. She wanted the bag open, but by the time we got to a space where we felt it was safe to let her take her mask off, she was too sleepy to eat it. She still wanted to hold, though, so she ended up holding onto the open bag for the entire two-hour walk. Isaac was sleepy too, and when he's sleepy he gets grabby. Occasionally he would reach over and yank Mina Brigitta's mask off. A couple times I didn't notice it, but Mina would say "Dadda!" over and over until I looked down and fixed it.

This weekend is the annual Kaminsky family camping trip, so I hope they had some decent weather up there as well. Keri's Mom has eight brothers and sisters, and they and Keri's grandparents and lots of cousins, grandchildren, etc. descend on a state park in southwestern Washington every year. It's a neat event with a great group of people, and we look forward to it every year. A year ago Mina Brigitta walked all over that campground holding my hand. On Monday after we got back to Anta Teri's house was when Mina Brigitta took her first steps by herself. We miss being at the camping trip, but we're counting our blessings that we don't still have to be in the hospital.

As for Mina Brigitta, she is most definitely walking better today, which is a big relief. However, she's been having some diahrrea the last few days, which we don't like at all. Last night she woke up with a poop at 1:30 AM. After that, Mina Brigitta didn't want to get back into the bed, so we had another night in the chair. That brought back really bad memories of nights in the hospital when she would literally poop every 15 minutes. This is nothing like those days, but we'll probably call up to the hospital tomorrow just to see what they have to say.

Day +83: walking better?

Mina Brigitta's walk seemed to improve a bit today. She's still pretty gimpy, but both Keri and I independently thought she seemed a little better. Again, she really wants to be moving around and active. In addition to climbing the stairs, yesterday she took her first ride on her new hobby horse that Zeedie and Russell sent. She loved it! Also, Dr. Loh called just to check in. She hasn't really been involved in Mina's care much since the transplant team took over, but she obviously cares a lot. Amber bumped into her in the hallway the other day, and Dr. Loh just said "How is she?" Anyway, she had seen the radiologist's report and she said it didn't sound that bad. She also said kids continue to grow new bone tissue well into their teens, so there's plenty of time for her to recover from the osteoporosis. Tissue death would be another thing, so we'll just have to hope there's none of that. The MRI is actually planned for this coming Tuesday, not in a couple of weeks as I posted yesterday.

Otherwise she seems to be settling in really well. It's hard to believe we've been home more than two weeks already. This is now the longest stretch we've had at home since her relapse in January. One of the interesting things is how she's adapting to what is basically a new life. The other day I was eating raspberries on my cereal. She used to love raspberries (she'd put them on all five fingers and then eat them off) and she noticed right away and asked for some. When I told her she can't have them right now, she said "Other house!" She remembers having them before at the other house, but understands and accepts that she can't have them right now at this house. Sometimes I tell her she can have something "soon". Not that I think she understands that, but I feel like it's better than just saying "No." Well, the other day I asked her to do something, but she was occupied and didn't want to do it. Without even looking up at me, she said "Soon!"

Days +81 and 82: some sad news about Mina's hip

They took an X-ray at her clinic appointment today, and said she's showing signs of osteoporosis (http://www.emedicine.com/radio/topic503.htm) in her right hip. Osteoporosis is defined as "a skeletal disorder characterized by compromised bone strength predisposing to an increased risk of fracture." This is most likely caused by the high-dose steroids she's been on for two months now. I didn't hear whether the X-ray showed any signs of fracture. Osteroporosis is progressive and irreversible in adults, but I don't know whether that's the case with kids as well. Dr. Horn told Keri they hoped she would improve with lower doses of steroids, so hopefully that means her body will be able to recover. The plan for now is to watch her for the next couple of weeks, and if she doesn't start to improve they'll schedule an MRI to look for signs of osteonecrosis of the femoral head (http://www.emedicine.com/orthoped/topic430.htm), which is what causes old people to need hip replacement surgeries.

Tough news to hear, especially when she's been doing so well otherwise. The worries over the weekend have dissipated with three days of good moods, healthy appetites, and lots of energy. Her blood counts are looking good as well, so they're going to drop the blood draws to once a week. She sure wants to be moving around, and today she crawled all the way up the stairs by herself, so hopefully that means whatever is going on is not too serious. They told us not to prevent her from walking if she wants to, but not really to encourage her either at least until they have a better idea what's going on.

I came home from work early today so Keri could go out for drinks with Melissa, and Mina was excited to see me home so early. She loves it when I say "I'm gonna get you!" and chase her around and grab her and tickle her. Tonight she was hobbling around the house looking back and me and giggling and saying "Gitchoo! Gitchoo!" Later she was asking where Momma went, and I told her Momma went out. She thought for a minute, and said "Agua!" I said I didn't think Momma was drinking agua, but that was a good connection. She and Isaac are interacting more as well and are becoming very cute together. He likes to grab her pacifier, stick it in his mouth, and then take it out and put it back in hers. We try to discourage this for sanitary reasons, but sometimes can't stop him in time. The other big Isaac news is that he was waving bye-bye to Momma tonight when she went out.

Day +80: a special visit and a sudden trip to the doctor

Mina Brigitta's special friend Emma and her mother came to visit today. Emma is the daughter of Katy and Awais, our close friends who live across the Bay, and she's two months younger than Mina Brigitta. It was Mina's first time in close quarters with another child since April. She was just waking up from a morning nap when they got here, and she was very shy at first. But Keri helped break the ice by having Mina present a gift to Emma: a sticker book just like the one Mina spent so many hours with in the hospital. I was there for to see that, but then had to go to work. Keri said it was both heartwarming and heart-wrenching to watch them play together. Mina kept bringing things to Emma: her babies, some playdough, her pens to ask Emma to draw babies. She said they were very cute together. But the visit was a bit emotional for Keri, because it brought into sharp focus just how much Mina has been missing out on these past six months.

Keri thought it got to be a bit overwhelming for Mina after a while, and she didn't hesitate to say "bye-bye" before Katy and Emma were ready to go. While they were here, Keri became very concerned about Mina's limp, which I thought had become more pronounced over the weekend as well. We know that both steroids and GVHD can cause problems in the joints, so Keri called the doctors and they wanted to see her right away. They were more concerned about a possible issue with her balance, which could be caused by an electrolyte imbalance, so they wanted to see her and do a blood test. Of course she walked around at the clinic more than she had all day here, but her limp is very obvious and they are definitely concerned. The doctor gave her a very thorough examination and was pleased with the range of motion in her joints. She did say that Mina has little knots in the muscles on her right leg, so she thinks she may just have some strains. It will hopefully start to get better within a few days.

Days +78 and 79: just can't stop worrying

Between DSL problems, fatigue, and a movie, just didn't get to the blog last night. A bit of a blah weekend for Mina Brigitta. It's subtle, but I don't think she wasn't in as good a mood as she was last week. She was pretty needy and clingy all weekend, more than I would have expected. Also, her limp seems to have gotten worse, rather than better. The steroids can cause joint problems, so we'll be watching her carefully between now and Wednesday. And eating is still a challenge. She didn't eat much breakfast at all over the weekend, which is out of character a bit. Then today she wasn't interested in her tortellini at lunch, which prompted me to take her temperature. It was a bit high, 37.6 (99.7 F), but not officially a fever. But then later in the afternoon she totally rallied, and we went out for a long walk, and she ate most of a peanut butter and jelly sandwich while sitting in the stroller. She felt nice and cool tonight, and she's been sleeping peacefully. Probably it's all nothing. They've been bumping up her cyclosporine dose because her level has come back too low, so maybe she just has some nausea that's breaking through the Kytril. Time will tell. It's nice to be a place where we don't have to worry so much about a bad day or two.

As promised, Amber sent pictures of her day with Mina Brigitta on Thursday. You can definitely see her chubby 'roids cheeks, and she's got what Keri calls the Sinead O'Connor look going. you may notice some hyperpigmentation from the skin damage. The dermatologist said most of it should go away over time, but it might take awhile. I'm just glad Amber sent the pics, because there's no telling when I'll get around to uploading mine.

http://eshare.hpphoto.com/en/home/welcome.asp?JobID=6a93e6e2-ec88-48e9-af2a-3e6ebb465538

Day +77: counts looking great!

Mina Brigitta's blood counts continue to improve. We got word today that her white count was 8.9, her hemoglobin was 11.8 and her platelets were 173. These are numbers that are nearly what you would expect to see from a healthy child, not from a cancer patient. The BMT nurse said it's a little early to see such healthy counts, but not outside the realm of what they've seen before. So this is great news. Now if we can just get those immunosuppressive meds tapered down, I'd be even happier.

Not much other news to report. Today was a mellow day, just Keri and the kids. Mina Brigitta woke up tired from her nap after a couple of late nights, and went to sleep early tonight. Adult BMT patients complain about fatigue for months and months after transplants, so we try not to let it worry us when she seems tired or out of sorts.

Day +76: a wonderful afternoon with Amber

Amber came at about 2:00, and stayed until 8:30 or so. I missed most of her visit, but I'm told they were lots of giggles and belly laughs. Mina Brigitta has been asking about Amber a lot lately, and when I go to dress her always wants to wear the clothes Amber bought her. She was very excited this morning that Amber was going to visit today, and they had all kinds of fun. They painted each others' toenails, and she even let Amber cut hers. She told Amber the toenail paint was for " Sissy. No Momma. No Bubba. No Dadda." Then Mina Brigitta helped Amber make chocolate chip cookies. Amber took a very cute video of Mina Brigitta stirring the batter. Amber has lots of pictures to send, probably too many to edit tonight, but she promised she'd send them soon and I'll post the link as soon as I get it.

Day +75: a four-hour clinic visit

Mina Brigitta had kind of a rough night last night. She was awake all night and we ended up spending most of it in the chair. Not sure what was up exactly, but hoping it doesn't become a pattern. Then her day started out a bit rough because she didn't want to get into the stroller to go to her clinic visit. We finally had to stuff her in there, and she cried for 15 minutes or so.

Then the clinic visit lasted four hours, but amazingly Keri said it went just fine. The clinic was backed up so Mina Brigitta had to sit in the waiting room for an hour, which she's not really supposed to do. Then various things kept taking forever, and she had an IV drip of immunoglobulin and another drug. I'm sure it was tough keeping the two kids occupied all that time, but Mikaela and her parents were there, so that was a treat. She's the four year-old who was in at about the same time as Mina Brigitta during the spring and took a liking to her, and then had her transplant two weeks before Mina. She's doing really well, and she and Mina enjoyed seeing each other.

The doctors were very pleased to see how well Mina is doing. They think the rash on her legs is pretty much healing, and they think her fingernails getting ready to come off is due to medications and not GVHD, which is kind of a relief. They're going to keep her steroids at the same level for now because we're having a hard time getting her cyclosporine level to come up to the range they want it in, but they want to start tapering as soon as possible, hopefully on Friday.

Day +74: bye-bye, Mom-momma!

Mina Brigitta continues to do well. I've felt like she's made progress every day she's been home, or at least since we got the anti-nausea med going. She, Isaac and Momma walked me to the train again today, but she seemed a bit startled when the train arrived and I had to put her down and quickly get on. Tonight she rode in the car-car, her first trip, on the way to the airport to drop off Mom-momma. Keri said she was so excited she talked the whole way. She has another trip to the clinic tomorrow. I'm hoping the doctors reduce her steroids some more.

Thank goodness Lyn was here for the last week. I don't know how we would have gotten through. Mina Brigitta really bonded with her again this time, so she will be sorely missed. It's going to be very hard on Keri to be at home with two kids home and effectively be on isolation. But the difference in Mina Brigitta from last Tuesday to today is like night and day, so hopefully Lyn helped us over the roughest part.

Day +73: getting closer

Mina Brigitta had a very nice day today. They walked me to my train stop, and then went for a walk. Mina Brigitta was very excited about dropping me off. She was walking around the apartment as we were getting ready saying "Bye-bye Dadda choo-choo!" over and over again. They were out for a couple of hours, and Mina Brigitta napped in the stroller. Then she was in a good mood all afternoon. They made little figures out of play-dough, and drew some babies for a birthday card, and a whole bunch of other stuff. Then Keri brought the kids out again to meet me at the train, which was fun for them. We still had a bit of a hard time getting her back into the house, but not as bad as yesterday. And even yesterday, once she got inside she was happy. Tonight she ate a huge dinner of tortellini, and some more watermelon. She can't yet have the cheese or spinach & tofu tortellini she used to like, but Keri found some chicken ones. She's becoming so vocal, and such a little mimic, I told her what we were having and she went cruising around the house saying "Toe-toe-nee-nee! Toe-toe-nee-nee!". She was also very proud of herself because she learned how to say "yellow". She was saying that all day long. Today was definitely progress. It's just been really fun to see her gain more and more energy and spunk.

Day +72: a Sunday at home

Today almost felt like a Sunday at home, even if things are still a bit uneven and surreal. We made pancakes and eggs for brunch, and then went for a long walk in the afternoon. Mina at first wanted "up with Dadda out!" meaning she wanted me to carry her in my arms. Well, there's a limit to how long I'm able to do that, so we wouldn't have had much of a walk. Luckily Keri thought of giving Mina a book, and she was pretty happy sitting in the stroller as long as she had the book to hold. She didn't want to go back into the house, though, even after being out for an hour and a half. She kept crying "up with Dadda out!", over and over again. Finally I carried her down to Cole Street and we sat on a bench on the sidewalk and watched the people go by for half an hour or so. She told me she was feeling "blah" (nauseous), and that she wanted to go up and see her pole and "tubes" and babies. I explained that all of her babies were here in the house, and that helped a little. But what finally got her inside was hunger -- home was where the "num-nums" were.

Day +71: feeling better

Mina Brigitta had a much better day today. No vomiting, thanks to two doses of Kytril, and generally in much better spirits. She wasn't as clingy as during the past couple of days, and tonight she actually got a little bit wired. She was walking around and around the house babbling. And she ate two pretty good meals in the afternoon/evening. She still demands near-constant attention; Keri and Lyn were taking care of house chores much of the day, so I was on Mina duty pretty much full time, and I'm exhausted.

The house is mostly in place now, still some hospital items to be put away, and I have to install the baby gate above our super steep stairs tomorrow. I'm not so worried about Mina Brigitta; she was afraid of the stairs right away, and wouldn't walk past them without holding someone's hand at first. Then I taught her to put her butt against the wall and inch along sideways, so that works pretty well for her. But Isaac is getting up on all fours a lot these days, and he loves to pull himself up on chairs or whatever he can find. Now that he's no longer sitting on a hospital bed for hours on end, he'll probably be crawling within the next couple of weeks.

Day +70: a rough couple of days

Wasn't able to blog last night because Mina Brigitta wouldn't let go of me. She had kind of a tough day: she threw up twice in the morning, and then again at about 10:30. I ended up spending most of the night in the chair with her, except our rickety little chair here isn't nearly as comfortable as the big luxurious black leather chair in Room 739 (it was donated by a family of a former patient). She threw up again this morning, the third day in a row that she's thrown up after her morning dose of cyclosporine. Otherwise she's been pretty listless the last couple of days. She definitely has up moments; yesterday they went for a long walk down Haight Street and into Golden Gate park, and after an hour and a half she still wasn't ready to come in. But she's also had times where she doesn't want to do much of anything.

We think the problem is meds; she hadn't been getting her Kytril because UCSF didn't write for it and the insurance wasn't going to cover that. Looks like that's going to get resolved, and she finally got a dose about 8:30 tonight. Well, wouldn't you know it, about an hour later she was as perky as she's been since the day we came home. She was up drawing babies, then wanted to eat, and was giggling a little bit with Grandma. Hopefully that will continue throughout the night so we can all get some sleep. We'll try giving her some before breakfast tomorrow, to see if that helps keep her cyclorsporine down.

They tested her blood today, and no surprise, her cyclosporine levels were too low, so they're upping the dose until Monday. Her other numbers look very good though. Her platelets were over 100 million/liter, which is higher than they've been since the transplant. Dr. Horn was also very pleased that the rash on her legs seems to be subsiding. Probably the Cellcept kicking in. As always, however, there are some worrying signs. She has some new fingernails growing in, so she's probably going to lose the ones she has. That could just be a reaction to her previous bout of acute GVH, but it could also be a sign of chronic GVH. Also, there was a watery green spot in her poop today. Again, could be a number of things, but could also be related to GVH.

Day +68: slightly off-kilter

Our day started off a little rough -- Isaac woke up at about 4:30 and cried for 5-10 minutes, just long enough to wake Mina. Who, shortly after Isaac went back down, sat up and said "Coke?" I tried to get her to lay back down, but to no avail. She eventually went back to sleep, but not for awhile. Despite that, she was in a good mood when she got up. After a pretty good breakfast and some time chilling in the house, she wanted to go "out". When I asked what she wanted to do, she said "Pole!". I asked if she wanted to go up and see her pole, and she said "Up!" Keri thought I should go ahead and take her in to see the pole, but then we remembered that she really wouldn't be welcome because of the c. diff. infection. So I reminded her that the pole had a new baby to take care of, and we took a walk around the neighborhood instead. She really enjoyed the walk, again pointing and remarking on everything she saw. We came across a schoolyard full of kids, playing ball, jump rope, running around. She had a great time watching them, and finally asked, in a small voice that said she knew the answer "Sissy dis?"

After her nap her mood was a bit more solemn. There was lots of "up with dadda!" and "up with momma!". I think she probably wasn't quite sure what to do with herself. She asked about Amber several times, which is nice because she's obviously very attached to Amber. But I think it may also have seemed a bit lonely in the house, with just the five of us and no one else coming in and out to say hi. In fact, she talked a lot about the other people in her life. We have a view of several other houses from the kids bedroom, and she kept pointing to one and saying "Dadda's Dadda's house." She also talked a lot about Anta and Kiki, and she loved wathing the "slideshow" screensaver on my laptop, with pictures from all eras of her life and Bubba's.

One of the interesting things about being home is finding out just how much she remembers. She picked up a poddy training book, and called it "peepee coke". It's a rhyming book, and as we went through it, I would pause at the end of a couplet to see if she would fill in the last word, and I was surprised when she came out with words that I had never heard her use before in conversation, even though it's been two and a half months since she saw that book. She also saw Kristin on the screensaver, and said "Hey! Where mimi?", mimicking a game Kristin played with her when she was here for Mina's birthday. Also interesting is that she hasn't wanted to read "big coke" since we got home. But at about 8:00 PM when she was sitting with Keri, she said "Momma go?" Keri said, "No, Momma's not going away tonight."

As for the rest of us, it was kind of a long day. Keeping on top of the medication schedule is a major chore, and we had to do everything ourselves today. No nurses, no aides, no food tray and no cafeteria. It was all we could do between the three of us to take care of both kids and the house chores. Even Bubba missed his routine of going to the hospital and greeting his adoring public on the way through the corridor. It's going to be very hard on Keri when Lyn leaves, though hopefully we'll have a bit of a routine going and maybe Mina will be a little more independent by then.

Day 67: home again home again

Well, the homecoming went over just about as well as we could possibly have hoped. Mina Brigitta threw up her medicine this morning, then was kind of pensive and clingy before taking an early nap. I'm not sure if it was the nausea, the upcoming changes or both. Will be interesting to see how she does tomorrow morning. Preparations were in full swing when she woke up, and it was obvious that today was the day. She kept saying "Home!" or "House!". When the time finally came, we bundled her into the new double stroller with her brother and wheeled down the corridor. The staff met us with a banner and a big cheer, led by Dr. Horn. Mina Brigitta is normally a bit shy, but she was a bit pumped up at that point and was pointing to the banner and saying "Dis!"

That kind of continued all the way down the hill to the flat. She kept pointing at the cars and saying "car-car!", and at the trees, and everything else she saw. When there was nothing in her immediate vision, she would exclaim "Out!" or "House!". Then when we got into the house she just wandered around looking at and remarking on everything she saw. She kept saying "Oooh!" Then when she saw the living room with the couch and the Algerian rug from our friends Karim and Hakima, she said "Sissy's home!". I guess we didn't have to worry about her missing the old house! She was thrilled to be here, and was in a really good mood all afternoon. Calm and low-key, yet obviously enjoying everything. She was excited when Amber stopped by for a while, but was wary of the visiting nurse. One of the biggest things about being home is just being able to walk around and explore. She was on her feet all afternoon, after weeks of hardly being on them at all. Small wonder that she tuckered out early and fell asleep about 7:00.

We have a daunting list of medicines to give her, and the rash on her legs was worse today, so there are still some worries. It's pretty likely that we'll end up back in the hospital at some point for one reason or another, so it wasn't really possible to say final goodbyes. But it sure feels great to be here right now. Every day that we can spend here will be a blessing.

Day +66: can it really be true?

Getting ready to go home tomorrow. Keri and Lyn spent all day in the apartment hanging pictures and cleaning. Keri said there is still quite a bit of work to be done tomorrow, but they won't exactly be releasing us first thing in the morning anyway. We'll probably wheel down the hall in the double stroller in the late afternoon after her nap. She'll be going home on Benjamin Seiple's birthday, and the day after Cousin Kennedy's birthday. Benjamin is the son of our friends Chris and Carol, who visited us here a few weeks ago, and he's been praying for Mina Brigitta and asking about her every day for a long time now, so it seems like the perfect day to go home.

Seems hard to believe the day is finally here. I hadn't let myself think about it at all until this weekend, when she finally seemed to me to be well enough. So much has happened since that Saturday when we drove her away from the house in Berkeley that she loved so much, just ahead of the movers. The walk that we took that morning at the "Aqua Park" will forever be etched into my memory. I knew then that we had some rough road ahead of us, but I had no idea just how rough it was going to be. I didn't even have time to fully appreciate just how rough it was at the time. Now, with some distance and perspective, I find myself looking back and I get a big pit in my stomach when I realize what she went through. The survival stats for Grade IV graft-vs.-host disease are dismal, maybe 10-20%. It didn't quite feel like that at the time, because it was so obvious that she was responding to the monoclonal antibody treatment. And those numbers are generally from before this treatment was available. Still, she had a very, very serious condition, and even the nurses here were bracing themselves for the worst. Thinking about it in those terms, and looking at where she is now, well, it's just pretty overwhelming.

As for Miss Mina, she's been better, but she's also been a whole lot worse. She's been kind of clingy and whiny these last few days, but that's been interspersed with bursts of energy and giggles. She ate a little better today, and she's been drinking really well, which is nice, even if the only thing she'll drink is green Gatorade. I worry a bit because I can tell there are still some issues, but that seems to be par for the course back here in the BMT unit. We did discover that she has a bacterial infection in her gut called "Clostridium Difficile", or "c. diff." (http://www.emedicine.com/med/topic3412.htm) This is very common among patients who have had lengthy antibiotic treatments, and Mina Brigitta has had it before. This is probably the explanation for the subtle gut symptoms she's been having the last few days. Any infection is serious, of course, but this one is relatively easy to get rid of and in any event is preferable to GVHD. She'll be on antibiotics for ten days at home.

We've been talking to her about going home for a few days now, and she understands she'll be leaving here and moving to a new environment. I think that's a bit scary for her. This room is something like a cocoon for her. I know she feels secure here, even though it's not always easy being here. Today she was so excited to go out and run around in the hallway, but the nurse came in at the last minute and said she wasn't allowed because her infection is contagious. She looked up at me, and big tears welled up in her eyes, and she cried and cried. It was so touching because it wasn't a whiny cry of "I didn't get what I want", but a sincere cry of deep disappointment and hurt. Well, my big girl, tomorrow you'll get to run around to your heart's delight. But I'm sorry to tell you your pole will have to stay here.

Day +65: Still on course

Still on track to go home Tuesday, despite signs that some new GVHD might be brewing. Dr. Horn thinks the new rash on her legs looks like chronic GVHD, though it's a bit early to tell for sure. She's going to make sure we have follow-ups with dermatology after we go home, and they may want to do a biopsy at some point. Again, even though it was worse today than yesterday, the rash is still slow-moving, nothing at all like the one she had before, and so far it's only on her legs in the areas that weren't affected before. Dr. Horn thinks that pattern is very interesting, but doesn't have any explanation for it.

As for her gut, she ate better than yesterday, and while she did have three poops today, they were small and we didn't see any of the greenish stuff in them. Dr. Horn says it's not uncommon at all for kids to have nausea with the meds she's on. In fact, many kids have trouble with throwing up the meds. So she might even be ahead of the game there.

She did have another fun-filled energetic day, so there's that to be thankful for. We had her out running around in the hallway again, though she wasn't running quite as well as yesterday. I think she might have had sore muscles. I'll be on duty here at the hospital most of the day tomorrow, while Keri and Lyn are deep-cleaning the apartment. Lyn was hanging curtains in the living room today, and later Keri and I moved stuff around in the second bedroom. Keri went and bought a double stroller so she can take the kids out; it'll be a while before Mina does much walking, I think. Pretty much just spending this weekend getting ready.

Day +64: a step backwards, or just consolidation?

After many days of progress, though slow at times, it's hard to know what to make of today. Mina Brigitta woke up at 4:30 this morning and wanted to read a book. I talked her into a video instead (only because it was 4:30, mind you), and she fell asleep again about half an hour into Charlotte's Web. But then she didn't wake up again until 7:30, when it was time to start getting her ready to take her neoral. She got her anti-nausea medicine, but I couldn't convince her to eat anything. So we gave her three 10cc syringes of milk in addition to the neoral. She kept it down, but wasn't much interested in food all day and told me a couple of times after prompting that her stomach felt "blah" (which is the word we use for throwing up). Also, she had a poop at 4:30, again at 7:30, and again at 10:30. The first two seemed normal, but the third one had a spot of watery green, which was something I had hoped never to see again. She didn't poop again during the day, which was kind of a relief. But the other thing is that the rash on her legs still hasn't gone away, and today it seemed a bit redder and more raised. Still small and appearing to heal quickly, but a bit worse than it's been in quite a while.

Dr. Horn said the green poop just means things were moving quickly through her system, which could be from a number of causes, of which GVHD is of course one. She also agreed that her legs looked worse. Her summary is that there are some subtle signs that we need to keep an eye on, but nothing that makes us want to change course just yet. They did put her on Cellcept today, but that's mostly to give her some coverage while they continue to taper her steroid dose. I expect they would reconsider the Infliximab dose if she continues to have gut symptoms, but hopefully she won't.

Otherwise she seemed just fine today. She had a lot of energy in between bouts of wanting to be "up with Dadda". They disconnected her from her IV for the first time in a long, long time. It felt great to have her "free from the pole". It meant she could put on her shoes and walk around the room, and we could go out into the hallway and run around. I would hide behind a desk in the nurses' station, she would come running down the hallway, and I would jump out and grab her. I use the word "running" loosely, of course, because she still is pretty wobbly and walking with a noticeable limp, but she had a great time and got some good exercise.

Kind of a confusing set of signals. There's some evidence that some GVHD may be creeping back. We are obviously hoping that's not the case, but it wouldn't be too surprising given how severe her earlier bout was. The treatment is more immunosuppression, so that's obviously worrisome. On the other hand, she has a lot of energy so maybe it's just the meds that are making her nauseous. Only time will tell, I guess.

Day +63: evolving plans for meds

They no longer think she needs another dose of Infliximab. This is good, because the monoclonal antibodies are highly immunosuppressive. This will enable them to switch her antiviral and antifungal meds to ones that can be taken by mouth, so maybe we won't have to go home with IV meds after all. Most kids go home still getting fluids at night, but maybe she'll start drinking more so we won't have to. Also, they are considering weaning her off the steroids altogether, and perhaps substituting Cellcept.

Mina Brigitta's head is all fuzzy now. Her hair is about a quarter inch long, and starting to stick up in spots. It's pretty dark, too, and her eyelashes and eyebrows are much darker too. I'm sure her her was going to turn dark eventually anyway. Will be interesting to see if the color sticks. She was actually a little hyper/wired when I got back to the room tonight. She woke up early again, at 6:15, but then had an early nap from 9:30 to 10:30 after they gave her Benedryl with her IV immunoglobulin (IVIG). Then she didn't nap again all day long. So she was tired when I got here, but in a happy, giddy kind of way. It was very fun to see. She seems almost ready to me.

Hope everyone has a great 4th of July weekend. We'll be here at the hospital, of course, but will be excitedly planning the move home. We do have windows in the room that face east and kind of north, and someone told me we should be able to see the San Francisco fireworks from here. We're used to spending the 4th at our friends Rich and Olgica's house in the hills south of Oakland, where you can see half a dozen different fireworks displays. Not this year, but it would be fun to see some fireworks nonetheless.