Day +62: new target: Tuesday

Seems I'm not the only one who forgot this weekend is the 4th of July. They told us today we can't go home on Monday, because offsite nursing care won't be available due to the holiday. No big surprise. But they're still shooting for Tuesday, which would be just fine with us. They're planning another dose of Infliximab for Tuesday before we leave the hospital, so we don't have to come back to the clininc on Wednesday. Our first appointment would be the following Wednesday. This is all so far away yet that I don't want to jinx it. But Keri and Lyn are now planning to spend Monday deep-cleaning the flat.

Mina Brigitta's day was similar to the last few. Still not eating or drinking a lot, but active and very communicative. We'll have to give her fluids at night when we go home, and a couple of IV meds as well: gancyclovir (anti-viral) and caspofungin (anti-fungal). She calls me on the phone every day now. It's so fun to pick up the phone and hear her little voice, "Hi!". She had another afternoon with Mom-momma while Keri went to Macy's to pick up new pillows for the house.

Amber babysat Isaac last week and took these great pictures of him: http://eshare.hpphoto.com/start.asp?JobID=7ad2c5c8-04e6-4d86-bcad-ff06af41aacf
. I still have a whole bunch of pictures of Mina to post, and feel bad that I haven't done that. Too bad Amber isn't babysitting Mina these days...

Day +61: oral prednisone

Two months to the day since the transplant date. Seems like a lot longer. Today I was walking down the street when I noticed a sign in a shop window that said "Closed Monday, July 4". I thought that seemed kind of odd for this time of year, and then it hit me: "Oh my God, Monday is the 4th of July!" Caught me totally by surprise. Of course, it probably would help if I lived in a place where the weather provided any sort of clue that it was summer, but still...

Another day of progress for Mina Brigitta. She ate quite a bit more than yesterday, and they switched her prednisone (steroid) from IV to oral. She's now down to 20 mg per day from over 50, and her face is almost starting to look normal again. She still kind of has that Barry Bonds look, but she's down to two chins from about four, and even the second one is starting to go away. She also received what may be her last dose of infliximab; they may give her another dose next Wednesday, but they haven't decided for sure. She's doing so well that they'll probably be tempted to skip it if there are no further signs of GVHD, but things are still a bit iffy with her stomach so we'll see how it goes. The one bummer about today is that she threw up about half an hour after taking her neoral (cyclosporine) this morning. I remember this happening last time they were trying to send us home. I think the problem is a really rough medicine on an empty stomach, so we're going to try getting much food in her as possible before her 8 AM dose, and also giving her an anti-nausea med maybe at 7:00.

Otherwise Mina Brigitta had a pretty nice day. Keri slipped away againg while she was napping, and after a trip to Target didn't make it back to the room, so Mina got several hours with Grandma. She did fine, though she was happy to see me and she did say "Mom-momma go?" when she was snuggling in to go down. She says "Dadda go?" in the morning too when Keri comes. She went for another walk in the hallway and drew some very nice pictures, one of a bear and one of Bubba crying for Momma. She's also started putting bandaids and tape and diapers on her babies again, which she hadn't been doing for a while.

Day +60: oral kytril and magnesium

Switching more meds over to oral, including kytril, the standard anti-nausea medication, and a magnesium supplement. They actually took her off the kytril but said she could have oral doses twice a day if we think she is still nauseous. She's still hardly even cringing while taking her cyclosporine, which is interesting because it really made her gag when she took it before. She's probably just feeling that much better. Next step is the prednisone, which I think they'll try to switch on Thursday when they give her another dose of infliximab.

There are lots of little ways that we can tell she's feeling better. Tonight I was thinking how well she's sleeping these days. She sleeps soundly and doesn't wake up during the night. Transferring her to the bed has become easy, and we haven't slept in the chair in weeks now. She's even fighting going to sleep at night now like she used to do at home, preferring to read book after book instead. And she's waking up early, usually before 8:00 and sometimes before 7:00. The first thing she says every morning when she wakes up is "Coke?" (meaning, "Book?") . Then she says "Dadda up!".

Mina Brigitta loves the games where we list all the people she knows. Lately, the conversations go something like this.

Momma: (Reading "big coke") Do you see a jack-o-lantern, like you and daddy carved last halloween?
Mina: Yeah. (Points to the picture of a jack-o-lantern)
Momma: Should we have a halloween party this year?
Mina: Yeah.
Momma: Who's going to be there?
Mina: Anta?
Momma: Of course! And who else?
Mina: Mom-momma?
Momma: Sure. And who else?
Mina: Amba?
Momma: Yes. And who else?
Mina: Ju-ju (nurse Julie)?
Momma: Yes. And who else?
Mina: Pole?
Momma: Um, no, the pole has to stay here at the hospital.
Mina: No, pole!
Momma: No really, the pole has to stay here.
Mina, insistent: No, pole!

Day +59: oral cyclosporine

Dr. Horn came back on service today. She's the doctor who was attending for two weeks when Mina Brigitta was at her lowest point, and we like her very much. She has a lot of knowledge, and she doesn't hold anything back when she talks to us. But her explanations are always very clear and concise without too much medical shorthand. What we like best is how carefully she examines Mina Brigitta, and how she asks us detailed questions about what and how she's doing. Especially with young children, I think it's really important to observe them closely because they can't tell us much about how they feel. When they were talking about sending us home before, I knew that Mina Brigitta wasn't ready because she was very clingy, wasn't eating much, and generally didn't seem like herself, even though physically she looked great. She couldn't tell us, but she must have been in serious pain based on what was going on in her gut.

Now it's almost the opposite: her spirit is way ahead of her body. She really wants to eat, but struggles with the part where she has to actually put the food in her mouth and swallow it. She wants to walk around outside in the hallway, but she's so wobbly and swollen still that she doesn't get very far. But the body is healing, and it will eventually catch up. I'm more optimistic now than I've been in a long time that we might actually get to bring her home.

To that end, they switched her to oral cyclosporine today. She took her first dose at 4 PM, and has to take it every 8 hours on the dot. Cyclosporine is the hardest drug to switch over, because it tastes horrible and makes lots of kids throw up. Mina Brigitta told me on the phone today (talking on the phone is another milestone, by the way) that it was "hot", which I suppose is the best word she can come up with for "terribly bitter". She took it like a trouper, though. If all goes well, they said maybe we can start thinking about coming home next week, maybe even as soon as Monday.

Day +58: a light at the end of the tunnel?

Mina Brigitta had another beautiful day today, and I got to spend most of it with her. She asked about Zeedie today, but then offered "Zeedie byebye!" and "Zeedie home!", showing me for the first time how well she understands the routine here. Then she kept asking about Momma's Momma, or "Mom-momma" for short. When she finally arrived mid-afternoon and peeked through the glass door, Mina broke out into a sly grin. She was shy for, oh, about five minutes, but after that they were laughing and giggling away. Lyn was very happy to see Mina looking so well; the last time she was here was the day they took us down to the ICU and Mina was covered with an angry red rash.

The rash is almost completely healed up on her arms now, and looking much better on her upper legs. She's still getting new, very small marks on her lower legs, but they don't seem to be doing much so no one is very worried about them. Her bilirubin and other liver function tests were stable today. That's the sign they were looking for, and if they start to go back down over the next couple of days we'll be able to stop worrying about liver disease. And her gut seems to be slowly healing -- every day she's eating a little more and pooping a little less. Today she asked for food about every two hours, but we had a hard time finding food that she actually wanted to put in her mouth. She ended up eating about two and a half of the little boxes of Cheerios with lactose-free milk. She also had some white bread with jam, a few bites of noodles and about half a jar of baby pears. And some green Gatorade, which she's been drinking every day. She's been off the IV nutrition since mid-day Friday now, and she's lost about a kilogram (2 lbs.). At this point most of that is probably fluid, but she'll need to start eating more soon or else they'll want to put in a feeding tube.

Today was the first day that made me think we might actually get out of the hospital at some time in the not-so-distant future. She's not like her old self yet, but she's getting there. She's pretty solemn most of the day, but sometimes that grin breaks through, and when I hear her giggle it just about brings tears to my eyes. And the nurses' eyes too, actually. We went out into the hallway again for a walk, and she pushed her babies in the stroller a little bit. She's still kind of wobbly, though, and not particularly energetic, so she was kind of going through the motions. The doctors are talking about starting to switch her meds from IV to oral, which is a necessary precondition to going home. We'll see how things go over the next few days.

Day +57: Agonizingly slow progress

Mina Brigitta has been off of the IV nutrition for over a day now, and her bilirubin is still going up. No need to panic yet, they still think it'll reverse over the next few days as she starts eating more and moving the bile through her system. If it's still going up Monday, they'll probably do an ultrasound to check for veno-occlusive disease (http://www.emedicine.com/ped/topic2396.htm) or graft vs. host disease. She's not exhibiting any other signs of a major liver disorder (liver is a bit "generous" but not painful, she's no longer retaining fluid, no other signs of GVHD like diarrhea or skin rash), but we can't help but worry. GVHD in particular is just like cancer in that it can come back at any time, so things like this are always worrisome.

She did eat better today, but we're still taking it very slow. She had about ten bites each of ramen noodles and winter squash today, but she gagged a bit after the last bite, so we stopped right away. No throwing up today, so that's the good news. Otherwise, she had another nice day. I took her for a walk in the hallway, and we sat out there in some chairs and read books for awhile. She had a visit from another book buddy, and then got to hang with Zeedie while Keri spent a much-needed and much deserved couple of hours on the beach. Zeedie flies out tomorrow morning. She'll be sorely missed, but "Mommamomma" arrives in late morning for a two week stay. We'd been hoping that she could help us move home. That's still possible, but she needs to start eating more!

Day +56: A wonderful day with Zeedie

Mina Brigitta had a great day today. Zeedie is just the tonic she's been needing for the hospital room blues. In case anyone missed the comment Zeedie posted today, here it is:

hello to all who write and read the "Blog I am here and all is so lovely Mina is full of big belly giggles, dancing with me, and her babies and of course "drawing babies. Issac is as sweet as can be so happy kind and a huge cuddle bug. Keri and Arnie are as amazing as you all already know.... I am so happy to be a part of the laughter and good times these 3 days .loving my visit Zeedie

I won't try to add my secondhand understandings to Zeedie's description. Mina Brigitta ate quite a lot today, but then she threw up again at about 8:00 PM. Just trying to be patient. They're taking her off of the IV nutrition because her bilirubin level was up again today, and because they think she's closing to being able to handle it. Hopefully she'll be able to keep enough down to sustain herself; if not, they might have to put in another feeding tube.

I'm looking forward to a nice weekend with the family.

Day +55: two steps forward, one step back

Continuing on a slow, bumpy path to recovery. The big news is that Mina Brigitta went for a walk in the hallway today! First one in quite some time. I'm sure the new skin on the bottom of her feet is still quite tender, but she stood up on the scale by herself this morning, and then this afternoon Keri took her out into the hallway. She was very excited to see another baby with tubes, and was interested to note that they weren't connected to a pole. She had to make sure that Keri told me the whole story when she called me later that afternoon. The other great thing is that Mina Brigitta absolutely loves having Zeedie here. They spent a lot of time giggling together.

The not so great news is that Mina Brigitta threw up today, which she hasn't been doing lately, and there were some spots of blood in it. Also, her eyes now have a slight yellowish tinge because of the elevated bilirubin levels. We haven't talked to the doctors since this morning. Hopefully they'll say it just takes a long time for the gut to heal, and maybe the buttered noodles she ate were a little too much too soon. She's been eating a little bit every day, and later on tonight she ate some Cheerios with lactose-free milk. We need to get her eating and off the IV nutrition as quickly as possible, but her stomach also needs to be ready to handle it.

Day +54: no news is good news

Nothing much new to report. We're still trying to work on getting Mina to eat more, but she's been getting all the nutrition she needs through her IV so she doesn't have much of an appetite. Today they started ramping down her IV nutrition, so we'll see if that makes a difference tomorrow. They've ramped down her steroids as well, from 45 mg/day a couple of weeks ago to 15 mg twice a day now. Tomorrow she'll get another dose of Infliximab, and they'll move her steroids to 25 mg once a day. They want to slowly move it down to 15 mg once a day. The rash on her legs continues to evolve, though it's light and isn't doing much. We're still hoping it's a continued manifestation of the previous issues, and not a sign of chronic GVHD. The rest of her skin looks great. Her hair is starting to grow back slowly, and at least for now it looks dark. It's not too surprising because we always expected her hair to turn dark, and it's not like she's getting any sun. More surprising is that she's sprouting little peach fuzz on her forehead and appears to be growing a dark monobrow. This is probably a temporary effect from some of the drugs she's on.

Day +53: more of the same

Everything is continuing slowly on the same path. Mina Brigitta woke up at 5 AM today and wanted to draw babies and read books until about 7:15. Then she slept for two hours, and didn't sleep again the rest of the day. She's still low to medium energy, still has a temperature near but not over 38, and is still eating a little bit but not as much as we'd like her to. She was interactive and cute today. She was tired when I got back here at 5:00, but she was enjoying reading Dr. Seuss books with me. At about 7:00 I asked her if she wanted another funny book or a quiet book, and she thought for a minute and said "Shh!". So I started to read her Squirrel Nutkin ("Owl coke"), and she was asleep in about five minutes. Hopefully she won't wake up at 5 AM again today.

Day +52: ramping up the food intake

Mina Brigitta still had a low-grade fever this morning, but was in fine spirits. She wasn't particularly energetic, but was alert and interactive most of the day. I think she's still recovering a bit from the surgery, plus she's on less steroids so she's not as amped up. The biggest and best news from today is that she's starting to eat. Her liver function tests are starting to get a little out of whack again, and the doctors are once again suspecting the IV nutrition. They'd like to get her weaned off of it as soon as she's ready, and even asked for a feeding tube to be inserted while she was in surgery. She threw that up yesterday, but we're pretty motivated now to try to get her to eat. Today she had milk (lactose-free) three times, some baby sweet potatoes which she seemed to enjoy, and some rice. We're going to bring her along slowly, but it helps a lot that she's showing some interest.

Isaac spent the morning with Chris and Carol, who left for Paris at 10:00. Then Amber picked him up around 1:00, so I had a chance to do some work from home in the afternoon. He's been a little bit snuffly the last few days, but no fever or other symptoms. Except his drooling, which he seems to have turned up to another level. We think he's teething, but are keeping the kids apart just in case.

Day +51: a consolidation day

Mina Brigitta had a very quiet day today. She spiked a fever this morning, and was as high as 38.7 (101.7), but she wasn't really acting sick so everyone is assuming it's related to the surgery. Dr. Loh says fluid in the lungs related to surgery can cause fevers up to 36 hours after surgery. Her temperature is down tonight, so we're hoping that's all it is. She did wake up in the afternoon while Keri was here and was quietly interactive for several hours.

The other news is that another dermatologist came by today, and he said he thinks the rash on her legs is just a continued evolution of sites that were first affected earlier. Once a reaction starts, there's a certain course it has to run, and the antibody treatment won't stop that. The good news is that there aren't any new sites. The areas where her skin peeled look beautiful.

Chris and Carol leave in the morning, and then we'll be on our own until Zeedie arrives late Wednesday. I'll have to stay home from work tomorrow, but we're trying to arrange some care for Tuesday and Wednesday. I'm looking forward to spending some quality time with Mina Brigitta tomorrow.

Day +50: unexpected drama

Halfway to the magic 100-day mark. Mina Brigitta decided she didn't want this landmark to pass quietly. At about 3 AM, I noticed that the stress loop had come out of the dressing on Mina Brigitta's Broviac catheter. I hesitated, not wanting to wake it up, but finally decided to buzz the nurse to fix it. She arrived and couldn't find the tubes! They were all the way across on the other side of the bed. Her Broviac had come all the way out! The nurse pushed the "emergency" button, and within 30 seconds we had about 8 people in the room. At first they thought the line had broken off and left a piece inside, but an X-ray showed that it had come out in one piece. I would have probably been more panicked about it if I hadn't watched them remove one last year. Usually, it just comes right out, and the vein closes up with hardly any bleeding, and that's what happened last night.

We'd been having trouble with the old line being tugged out for quite a while. The hardest time came in the ICU, when her skin was all covered with Aquafor and we had trouble getting the tape to stick to her skin. After both the stitch and the cuff came out, the tape was the only thing holding it in. The strange thing is that Amber came into the room at about 4:30 and asked if I'd called Keri. I hadn't, but Keri was awake with Isaac and had called the floor to ask that the nurse check on the stress loop. It's also ironic that this all happened not three hours after I'd written about what an uneventful day we had.

She still had to get her meds, so they had to put a peripheral IV line into her foot. The fellow from the ICU came up to do it, the same one we had battled about placing sticky heart leads on Mina Brigitta's broken skin. He was happy to see her looking so well, and placed the line on the first try. Everyone was so amazed at how brave Mina Brigitta was. The single line worked for a while, but she still needed a central line, so she went into surgery at about 3:30 PM today for placement of a new line. Everything went just fine, and Mina Brigitta came out of the surgery in better shape than I've ever seen her. She's getting stronger and stronger.

Day +49: Another quiet day

Just like we like them. No real news to report. She ate some Teddy Puffs and even had about 3 oz. of lactose-free milk today. They lowered her dose of steroids yesterday, and she's noticeably less puffy today. The skin rash on her legs is still worrisome. Today she was itching behind her right knee, where it has turned a dark red color. But it's still nothing like it was before, and it's only on her legs.

Mom and Dad leave early tomorrow morning. It's always sad to see them go. Next month they're going to England to see Eric, Astrid and Philippe, so it will be awhile before they come back here. Our old friends Chris and Carol are in town from Boston and will be here tomorrow and Sunday. It will be really nice to catch up.

Day +47: A very nice day

Mina Brigitta had an excellent day today. She woke up at 8 AM and we sat and drew babies for almost two hours. She had about 15 bites of oatmeal this morning, and was interactive and having fun all day long. Her skin rash doesn't seem to be spreading or perhaps is spreading very very slowly. They aren't planning to change her treatment in any event, and the rest of her skin continues to heal. I took some great pictures of Mina and Isaac sitting in the chair together tonight, which I will try to figure out how to share quickly.

As for Bubba, he's doing great. I haven't written about him in a while, but he's become a very social and snuggly little guy. He's constantly chattering to himself or anyone who will listen, and he's saying "Momma", "Dadda" and "Num-num". He *loves* to eat solid food, practically lunging at the spoon before you can get it to his mouth. It doesn't agree with him that well, unfortunately, as Keri says he's had some nights where he was up with what appeared to be stomach pain. He comes up to the hospital every day around noon with his Anta, Grandma, or whoever is here. Then he spends the rest of the day here in the room. He has definitely charmed the nursing staff here on 7 Long. He sometimes gets taken out for excursions in the hallway. He's had a great time bonding with his Antas and Grandparents, but I think he misses his Dadda. Unfortunately, on workdays I only get to see him for a few minutes a day.

Day +46: some great news and some not so great news

First the great news: Mina Brigitta's CT scan was totally clean! We knew it was good when they cancelled the broncoscopy (they were planning to put a tube into her lungs to get a sample if they found something there), and then later on both Keri and I got to look at the pictures from the scan. Last week there was a spot on her lower left lung, and some fluid buildup outside of her right lung between the lung and the rib cage that was constricting the lung a little bit. Those were both gone, and the only thing that showed up at all was a little bit of what they think is scar tissue from the RSV infection. Plus, she's feeling great and she hasn't had a fever since Monday! We'll just hope she stays just like this.

The not-so-good news is that she may have another rash developing. She has some very small bumps on her legs and arms that appear to be "evolving". The interesting thing is that the bumps are only in the areas that didn't appear to be affected before. The areas where her skin has peeled from the previous bout are still perfectly clear. Also, they're very small and not evolving very quickly at all. Certainly nothing like last time. The dermatologist was just in at the end of the day, so we haven't heard from the whole team yet what they're planning to do about this, if anything. We've obviously been hoping that the GVHD would stay away, so that they can taper the immuno-suppressive therapy as rapidly as possible. This appears to introduce a new wrinkle, though the low level she's showing now might not be enough to make them change anything.

In the vain hopes of trying to get a good night's sleep last night, I tried Kari's trick of putting her in the chair and myself in the bed. No way. Mina said "Daddy sit dere!", patting the chair with her hand. So she slept curled up on top of me in the cushy chair. Comfy for her, not so much for me. But it was very nice to get to snuggle my girl again after being away for so long.

Day +45: Holding steady

Blogging from the hospital room tonight. My stomach is mostly better and I'm not sneezing, coughing or sniffling, so I figured it was time to see my girl again. I do still have a bit of a sore throat, but I've had that for three weeks. I'm wearing a mask on the off chance I could still be shedding an airborne virus. She seemed happy to see me. Tonight marked the first time in a long time that she didn't protest when being transferred from Momma to me.

Mina Brigitta did just fine with Grandma and Grandpa last night. When Anta Kari was here, Mina Brigitta made her peace with the situation by insisting on sleeping in the big comfy chair by herself. So Kari made her a little nest and put the feet of the chair up so there was no way she could fall out. Then she wanted Anta to sleep in the hospital bed next to her. Well, last night Grandma and Grandpa made her spot in the chair, but when they asked if Grandma should sleep in the bed, Mina Brigitta said "No, Anta!". But she eventually fell asleep and didn't wake up at all until 8 AM.

She was a little low on energy this morning, but after a quick nap she was just fine. Maybe not quite as energetic as the last few days, but that might have to do with the lower dose of steroids she's on. We also discovered tonight that her morphine drip had been left off, most likely since last night, so she was going cold turkey without anyone even knowing it. She seemed to do just fine, and she was on a fairly low dose anyway, so we're just going to keep it turned off for now.

The CT scan was postponed until 11 AM tomorrow. We have to try to get her to drink a bunch of contrast before 9:00 to illuminate her gut. We'll see how that goes. The doctors are not expecting it to show anything serious given how she looks and sounds, but it's good that they're checking. On the staph infection, it turns out the culture that grew was from Saturday night, and subsequent cultures haven't grown anything yet, so hopefully it's been cleared out.

Day +44: Some worries creeping in

Mina Brigitta had another very nice day today. She was awake and alert and interacting with everyone for most of the day. Grandma and Grandpa are spending the night at the hospital tonight, as I'm not feeling totally up to snuff yet and don't want to risk exposing her. They are already beginning to get a little worried about a viral infection. She continues to have low-grade fevers, and today they noticed she some fluid in one of her lungs and thought she was breathing a bit shallower. Some of this could still be residual from being so sedentary, but she's been spending a lot more time awake the last few days so that should be clearing up. They're going to do another CT scan tomorrow to look for any signs of infection. She still has a ways to go before her defenses start building back up, so we need to keep her nice and clean.

The other news from today is that she has another bacterial infection, so they're putting her back on the vancomycin after two days off. This one is a staph infection, which is another slow-growing infection that so far hasn't set her back much. Again, even though she is very vulnerable to viral and fungal infections, her high level of neutrophils give her a lot of ability to hold off bacteria until the antibiotics kick in, so hopefully this will clear as quickly as the last one did.

Day +43: More milestones!

Despite my best attempts to get her sick yesterday, Mina Brigitta had a great day today. She had seven bites of oatmeal this morning, and showed interest in food at other times. One big milestone was that she asked to draw babies for the first time since getting sick. She didn't actually draw any babies herself, but she had Keri draw babies for a while and she used the little moon- and star-shaped stamps that came with her magna-doodle. Another milestone is that she came over and sat on the daybed with her brother for the first time. She was showing him pictures from her little picture albums and telling him who everyone was. She even laughed at him, when Anta Kari was feeding him some pita bread. She seems to want to talk a lot these days. Maybe she's just reconnecting with the world, or maybe somehow her brain has continued to mature through all of this, but she seems like she's ready for more communication than her limited vocabulary can handle. Time to work on some new words.

I, of course, missed all of it because I didn't dare go near the hospital after yesterday. I was flat on my back all day yesterday with nausea, diarrhea, and a low-grade fever of about 100.5. I woke up feeling much better but am still not totally right, and the doctors said to stay away as long as I'm having symptoms. Hopefully I didn't infect Mina Brigitta with some kind of virus, because her defenses are really quite low right now and any kind of infection would be quite serious. I'm hoping to be back up at the hospital tomorrow night. We're so thankful that Kari and Steve were here and were able to extend their flights. They both stayed at the hospital last night, and Kari is up there again tonight. I'm not sure what we'd have done without them.

Mina Brigitta still is having low-grade fevers as well, but she's been having them for a couple of weeks and she certainly isn't acting like I felt, so she doesn't seem infected at the moment. They're continuing to slowly taper down her steroids and her morphine. She receives doses of daclizumab tomorrow and infiximab on Thursday. Dr. Horn wants to have her on a sustainable dose of steroids by Thursday. The worry is that reducing the steroids could cause a resurgence of the GVHD, which is why they're moving slowly and observing her carefully. We'll just have to watch and see.

Day +43: it sure feels early...

For Anta Kari here, writing in the morning after spending the night with Mina Brigitta at the hospital. Yesterday Arne began feeling sick (feverish and nauseous) so the rest of the team had to spring into action. Steve and I postponed our flights (were scheduled to head out last night) so we can stay until the next shift of helpers, Grandma and Grandpa, arrives tomorrow.

Mina B had a good day yesterday. She has developed a moderate fever which is a bit worrisome as always but it hasn't gotten worse and she's still in good spirits. She asked for "num nums" again yesterday and ate one "O." She was none too pleased last night when she realized that without Dadda being able to stay with her overnight, she was stuck with Anta. She's been much more friendly to me (allowing me to sit next to her chair to read & chat, but not IN it with her) but that was a big step! She did great, though. Cried for mama for a while but eventually we settled in with "Ooh Oohs" and by 2 a.m. all was quiet and she slept through until 8 or so. This morning she was fine and wanted to look at the "big book" with me.

I'm sure A or K will write later with a little more clarity. I'm a little brain-dead at this point and have even more respect and awe for Dadda spending the night here every night. Glad he finally got a rest last night, even if he had to be sick to do it!

Day +41: three big milestones!

After a bit of a rocky start, Mina Brigitta had a really nice day today. She really hates transitions between Momma and Dadda, and vice versa. Keri said she cried for 45 minutes after I left this morning. But after she got over it, Mina Brigitta was awake and interacting until about 2 PM today. After napping until about 7 PM, she woke up and has been interacting ever since. She's really been quite talkative, remarking on everthing she sees.

Anta Kari and Uncle Steve brought some dinner back from a local restaurant, and Keri ate hers with Mina on her lap. Mina Brigitta was very excited about the whole event, and kept looking over and saying "Anta eat!" with a big smile on her face. Keri had a sprig of fresh dill on her plate that she didn't want, so Uncle Steve came over and took it. From then on, whenever she saw some dill, Mina would say "Uncle dis!" and insist on Steve coming over and getting it. She also asked Anta Kari to come over and show off her painted toenails. Inviting others into her space was the first big milestone, because for three weeks she's been telling everyone to "Go!"

The second big milestone was laughing! I was blowing soap bubbles and catching them on the wand, and one time she practically shrieked. And the third big milestone was, believe it or not, eating! She got so excited by our dinners that she insisted on having some "num-nums" herself. She couldn't eat the restaurant food, but the doctors had said she could eat some baby rice or oat cereal. So we mixed her a bowl of Isaac's cereal, and she had about four bites.

Now she's watching a new movie ("Babe"), which is a bit of a milestone itself after weeks of nothing but "Ooh-oohs". Keri has been trying to escape for an hour, but Mina Brigitta keeps crying everytime she goes to leave. A little earlier she was saying "Dadda out!"

Day +40: a really encouraging day!

40 days since the transplant. Mina Brigitta did have her MRI today, and the good news is that they didn't see anything at all to worry about. That leaves several suspects for Mina Brigitta's continued sleepiness: an adverse (meaning opposite of expected) reaction to the steroids, continued effects from the Atarax, body still healing, or even "somnolence syndrome", which is basically a sleepiness in children that can last for several weeks and is caused by radiation to the head. They did see some changes to her brain that are a typical side effect of the radiation therapy, but they aren't any indication that she will or won't have long-term effects. It's just too early to tell. They also got a look at her sinuses and didn't see any indication of infection.

Mina Brigitta celebrated by staying awake and interacting for several hours after she got back to the room. She was reading books with Momma, then watched "Ooh-oohs" (Jungle Book), and then read books with Dadda. After she was done with the books, she still wanted to interact, so we actually had a nice little chat. She pointed to the sketches that are still on the walls and said "Ti-ti dis!", referring to our friend Christine who had helped draw one of the pictures. She pointed to my cell phone and said "Anta der!", because Anta Teri had called earlier. She also asked about the whereabouts of Momma and Anta Kari. Then she noticed her reflection in the window for the first time in a while, and said "Sissy dere." I pointed out that she didn't have any hair (probably shouldn't have :-( ). She looked closely and said "All gone!" Then she said "New dis!" pointing to her hair. I told her it would grow in small at first, but she said "No, big!". She was nestling in very close to me when she said all this, and is still feeling a bit ornery, but

Day +39: slow progress

Another sleepy day today, but Mina Brigitta definitely had moments of being awake and alert. The first one occurred at 5 AM, when she woke up and asked for "big coke", referring to the Richard Scarry book she was into before the GVH set in. I'd never been so happy to be up at 5 AM. During the day, she even asked to come over to the daybed and sit with Bubba, but her energy waned before Keri and Kari managed to transport her across the room.

Everything else continues to improve. Her skin is slowly peeling and the new skin underneath looks good for the most part, except on her lower arms where the blistering was the worst. The giant blister that covered her entire right heel is just about gone, thankfully without having popped. Yesterday she had some blood in her tears, and the opthamologist said the tissue around her eyes was suffering the same damage as the rest of her skin. He said it won't be a problem as long as there's no major scarring, and today her tears were clear again. The blood in her stool last night didn't come up, so it must not be a major concern. They did schedule a brain MRI for tomorrow to be sure there's no swelling around the brain, but no one's too worried about it based on her alertness today.

Day +38: trading Antas

Anta Teri flew out today, and Anta Kari flew in. It's always sad to see Teri go, but it will be nice to spend some time with Kari, who we don't get to see quite as often. Uncle Steve is even rumored to be making a cameo appearance later on this week! Today is also our brother Eric's 42nd birthday. I know it will be tomorrow when you read this, but Happy Birthday Eric, from Kari and me!

Mina Brigitta had a quiet day today back in our old room. And when I say quiet, I mean very very quiet. She's pretty much been in a deep sleep since Saturday, deep enough to cause us to worry a bit. She does wake up from time to time particularly for diaper changes, and today she screamed bloody murder when they put her in the machine for a CT scan. She's just lucid enough when she wakes up that the doctors are sure she's not having any kind of neurological problems. They say it's common for kids to sleep a lot when they're recovering from a serious injury or illness. The sleepiness did seem to coincide with switching from Benedryl to a more potent drug named Atarax to control nausea and itching. We should probably just count our blessings that she can spend these days sleeping and healing when she still is quite uncomfortable with her rash. But we're too fresh from the ICU to relax just yet.

There are still some mixed signals, but for the most part things are looking pretty good. She went 30 hours between stools yesterday, and about 18 hours today, and the volume is lower. However, she did have a few spots of fresh blood in her stool tonight, which she hasn't had recently. She's continued to have low-grade fevers, but nothing very severe. It's common for burn victims to have a high temperature, so it's possible she's having a similar kind of reaction. They're drawing blood and urine cultures daily and monitoring her very closely for any sign of infection. The best news from today was that the CT scan came back clean. I didn't get the whole story, but the spot on her lungs didn't look like an infection. She received another dose of Daclizumab yesterday, and will receive Infliximab on Thursday. If she still looks good then, they'll begin tapering off her steroids very slowly. Let's hope we stay on this path.

Day +37: good news and another worry

It's been a busy couple of days since the last blog. Mina Brigitta spiked another fever Sunday. Continued fever despite the broad spectrum antibiotics she's on would not be a good thing. The possibility of either a viral or a fungal infection is very frightening right at the moment when her immune system's ability to respond is being supressed to control the GVHD. Coming on the heels of several sleepless nights with a sick girl in a bright, noisy environment, and the relief of beating back the bacterial infection, the news was enough to send me over the edge. Luckily, I have a very thoughtful wife and sister-in-law who were kind of enough to allow me to spend a day and a night at home recharging my batteries.

Mina Brigitta's fever slowly went down during the night, and she had no fevers or stools all day today. The last thing that was keeping us in the ICU was a little spot in her right lung. It's the kind of spot that they often see with kids who are on morphine and who spend most of their time lying down, so there's a good and harmless explanation for it. When today's chest X-ray showed that it hadn't worsened, they decided to bring us back up to the BMT floor. It's such a relief to be back in the quiet and spaciousness of Room 739. The ICU is a miserable place that we hope we never see again. There's only a thin sliding glass door that separates the room from the hoards of people massing outside, rather than two sets of doors with an anteroom and positive pressure, double HEPA filtration. We're so relieved, not only for comfort but for safety too; only a select few people ever make it all the way back into this room.

Then as soon as we got back in here she spiked another fever and had three stools in about three hours. They'll probably do a chest CT tomorrow, hopefully to rule out the possibility of infection. We're really hoping they didn't jump the gun on sending us back here.

Day +35: signs of life

Keri's taking a late shift at the hospital tonight, so it's Arne writing again. Mina Brigitta seemed much better today. She is still terribly uncomfortable, and she still tried to shoe Dr. Horn away when she came to examine her, but she interacted with both Amber and Teri today. Amber came to visit and was thrilled that Mina didn't say "Go!", and Teri actually got a giggle out of her. She was playing with bubbles and acting just goofy enough, and Mina Brigitta smiled and actually giggled a couple of times! It's so nice to see our girl looking and feeling better. Her skin is peeling like a reptile, but the skin underneath looks pretty healthy, so hopefully there won't be too much damage. The rash is still getting worse in the newest spots, but it doesn't appear to be spreading any more. Dr. Horn told us today that if everything stays the same for the next couple of days, they will plan on bringing us back up to the BMT floor on Monday. Thanks again to everyone for your thoughts and prayers in this most difficult of times. Mina Brigitta has a long, long road ahead of her, but she's out of immediate danger and ready to resume the journey.

Day 34

Anta here... Too many details to go into, but Mina Brigitta is stable and showing signs of improvement. They're giving her Dicluzimab tonight, so hopefully it will stop the spread of the rash, and she'll be returning to 7 Long before too long. (While her level of care will remain high, it brings comfort to have Mina where they know her so well and are familiar with all the ins and outs of her illness.) It has been exhausting for Keri and Arne as they filter all the critical information and remain one step ahead of her care; I am forever astounded by their ability to speak articulately and retain information. You've heard the saying, "it's all Greek to me?" I can assure you that my sister is regretting her decision to put me in charge of the entry for this evening, as I am feeling giddy from the level of intensity surrounding our girl.
Just know that your prayers, love and support are felt here and greatly appreciated by Mina's extended family as well. No act of compassion is insignificant or goes unnoticed, they may appear small, a ripple in the water, yet accumulate in a large wave...

Day 33 PM: joy

Keri writing. The rooms in Pediatric ICU aren't equipped with a computer and even if they were, I am sure that Mina wouldn't let Arne out of her arms tonight. It is actually a great source of comfort to us that even though parts of her body are blistering and peeling, and it is painful for her to move, she still wants to be held. She wants to be near.

In a flurry of a day, we received confirmation that she has acute GVHD, stage IV, but are placing hope in the new monoclonal antibodies, Infliximab and Dicluzimab, as well as the love, care and prayers of our family, friends and community of doctors and nurses at UCSF. We have been blessed.

Her temperature is down and the first blood culture taken after administration of the antibiotic, Vanco, came back negative for infection. If this is the case at 24 hours (after administration), they will administer another dose of Dicluzimab, which we hope will arrest the development of GVHD on her skin. The Infliximab (which targets the G-I tract) was admistered for the second time last night and seems to have helped because she went 10 hours without a bloody stool today, and the volume was significantly lower than it has been. It apparently takes 3-4 weeks (given on a weekly basis) to see results. Last but not least, they increased her morphine levels and after a very painful -- but also alert -- day for her, she spent the latter part of it resting comfortably. She seemed to appreciate her visitors (from the community at UCSF) even if she didn't want anyone to come too near -- even dear Amber -- and enjoyed the Pooh balloon that Anta brought into the room. She is fighting hard.

In the midst of the most terrifying times, there is joy. Thank you for being there. K

Day 33 AM: new challenges

We received two pieces of distressing news late last night. First, the preliminary read from the skin biopsy is that the rash is caused by severe graft vs. host disease. This is just preliminary, and we haven't had a report from dermatology yet, so we don't know how sure they are of the result. Second and more urgently, Mina Brigitta has a bacterial infection. The blood culture drawn yesterday morning grew enterocuccus bacteria (http://www.medterms.com/script/main/art.asp?articlekey=20162. It's a classic case where the infection likely came from her bowels and entered her bloodstream through an open sore. She had been on antibiotics to cover against this kind of infection, but they were pulled on Sunday on recommendation from the dermatologist, in case they were contributing to Stevens-Johnson syndrome. The doctors knew there was a strong possibility that this kind of infection could occur, but felt they could take a calculated risk because the "gram positive" bacteria that enter through the skin tend to be slow-growing.

Dr. Horn told us last night that the next 12-24 hours will be critical to see how she responds. She was already showing some signs of sepsis (http://www.medterms.com/script/main/art.asp?articlekey=5449) yesterday, particularly the intestinal bleeding and decreased urine output. She remained very stable throughout the night, even sitting up for an hour or so and interacting. Her fever also diminished during the night and was gone by this morning. However, the bacteria probably hasn't grown to its full potential yet. It helps a lot that Mina Brigitta has a healthy neutrophil count, so she has some ability to fight the infection on her own. Thanks again to everyone for writing in; it really means a lot to know that we have so much support. Please keep us in your thoughts and prayers over the next day or two to help Mina Brigitta clear this infection.

Day +32: not much change

Thanks to everyone for wrote in today. It really means a lot to us to see 10 messages by 9 AM and 19 by 7 PM. I didn't even know that many people read the blog! This has been a pretty overwhelming couple of weeks. Dr. Loh doesn't really have much of a role with Mina Brigitta's care these days, but she stopped by to visit. She took one look at Mina and said "Oh my God! What happened to your skin?!?" I kind of feel that way too, and it really helps to know that there are so many people who care so much about our little girl

As every day seems to, today brought some positives and some negatives. The positive was the dermatologist's visit. She was very encouraged that the rash didn't seem to be spreading. The newly affected areas have continued to evolve, getting larger, darker and angrier, but the areas that were affected last week are getting better. The color is gradually turning from a deep red to a light brown that indicates healing. If the agent was indeed the Septra which she got over the weekend, the dermatologist thought that the peak of the reaction probably occurred Sunday or Monday, and that we should see slow improvement from here. She also said the cell damage seemed to be pretty shallow, meaning that she shouldn't have much in the way of long-term scarring or elasticity problems. As of now the biopsy isn't back yet, but this doctor told us that the drug reactions and GVH look similar, so the biopsy might not be able to tell us definitively which she has. They will probably keep treating both; she'll start receiving IV immunoglobulin daily instead of every two weeks to as a treatment for Stevens-Johnson Syndrome, and will probably receive another dose of the diclizumab antibody as a treatment for GVH.

The negative came later. She had a quiet afternoon, but around 5 PM had a very painful stool with a large volume of blood, and then another at about 7 PM. There could be any number of reasons to have bloody stools, including low platelets, stress from the drug reaction, a c diff. infection, or continued problems with GVHD. This is pretty discouraging, because it seemed like her gut had been improving. They're just going to support her for now with transfusions of blood and platelets, and watch to see if it evolves. If it gets any worse, the G-I specialists may want to do an endoscopy to see if they can see anything. She's due for another dose of the Infliximab tomorrow, so hopefully that will help.

All in all, she's been quite stable, and for that we are very thankful. They might have actually thought about moving us back up to BMT tomorrow if this gut issue hadn't cropped up. Now I suspect it'll be a few more days. Thanks again for all of your thoughts and prayers.