Day +32: ICU

Mina Brigitta's condition worsened this afternoon, and they're sending us to the pediatric intensive care unit tonight. Her vital signs are stable, but she has a very high fever and her face and torso are swelling. The staff in the BMT unit felt uncomfortable with how her condition was changing, so the decision was made to put her in a place where she can be observed more closely. Everyone is acting on the theory that she has Stevens-Johnson syndrome (http://www.emedicine.com/EMERG/topic555.htm) which is a drug reaction. But we won't know anything for sure until the studies start coming back and even then we might not know. Hopefully we'll be back in Room 739 before long, but there's just no way of knowing. Please keep us in your thoughts and prayers.

Day +31: the roller coaster ride continues

Dr. Horn took over as the attending physician this week. She gave Mina Brigitta a thorough exam this morning, and then pronounced that she had Grade 4, i.e., life-threatening GVHD. That news hit pretty hard, even though we knew it wasn't based on any change in her condition, just on the assessment of a new doctor. However, she went on to say that Mina Brigitta was a good Grade 4, almost 4-, because she's very stable and doesn't have any signs of organ failure. She also said her skin rash doesn't really look typical of GVH, although the one thing about GVH is that it can present in a number of different ways. Still, she arranged for visits from a dermatologist and infectious disease specialist.

We were quite low after hearing Dr. Horn's assessment, and also because Mina Brigitta seems worse in some ways today. She was only awake for a few minutes at a time, and she fevers in the morning and in the evening. Her face is so puffy she can barely open her eyes, and the rash has moved all the way down her arms and become quite red. On the other hand, she went seven hours today without a bowel movement, and her total stool output was much lower. And when she did have a stool, she didn't seem like she was in nearly as much pain as yesterday and the day before. But then at about 5 PM she threw up a huge volume of greenish liquid, so Dr. Horn began to get worried about an obstruction in her bowels. The X-ray looked fine, thankfully.

The most interesting visit was from the dermatologists. A fellow and a resident came by looked her over very carefully, and then left the room to confer. Their manner was jovial at first as they remembered seeing her before, but turned very serious when they began to examine her. After being gone for half an hour or so, they came back in and the dermatologist informed us of his opinion that the rash isn't GVH at all, but a drug reaction! His leading candidate is the Septra, also known as Sulfatrim, that she takes on weekends to prevent a specific type of pneumonia that can occur in the immuno-suppressed. But they recommended immediately stopping all antibiotics, despite her continued fevers. They took a core sample of skin from her back to send for a biopsy. They had to go about a centimeter deep to get a sample of all the layers of skin. The process was somewhat like digging a post-hole. They gave her a shot of a local anasthetic, and were very impressed with how well our brave little girl tolerated the procedure.

Now we were quite high with the possibility that this isn't Grade 4 GVH (a very bad thing), but is instead a severe drug reaction (a sort-of bad thing). However, the next visit was from the infectious disease (ID) fellow, who thought the rash looked like GVH. We got another visit from an ID attending, who came into the hospital at 9 PM on Memorial Day just to look at our girl. Her comment was that it was a very unusual rash, one that she can't immediately associate with any particular cause. So they're going to send a whole bunch of virus studies to see if anything turns up positive. Her rash isn't typical for any particular virus, but she isn't a typical host because of her immuno suppression, so things can present differently.

So the bad news is, we still don't really know what we're dealing with or how serious it is. The good news is, it's suddenly possible that it's something much less serious than GVH. The skin biopsy should be back on Wednesday, and this time they think it will tell us for sure whether or not it's GVH. Keri and I are exhausted after everything that happened today, but bouyed by the new possibilities. We'll be anxiously awaiting the results of the biopsy.

Day +30: conflicting signals

Another day of waiting and watching for signs of progress. One sign is that her liver function numbers continue to fall back down toward the normal range. Another is that her stool volumes were less yesterday than the day before, and less again today, at least during the day shift. She's not eating anything, so they really don't want to see a lot of volume. She still is having frequent bowel movements, but the pain seems to be less and she didn't need as much morphine today. Maybe, just maybe, her gut is starting to heal up a little.

But the rash continues to get worse on her skin. It's definitely moving down her arms in a bright angry red pattern, and she's started to blister in a couple of places. She still doesn't have much on her legs or sides, so they're still calling it Grade 3 (out of 4). Grade 3 still has a reasonably good prognosis, but we really don't want to go to Grade 4. Because the rash is still progressing, they started her on another monoclonal antibody called Diclizumab. This one targets a slightly different receptor, one that makes it useful for the skin. The downside is that it makes her more vulnerable to the CMV virus, so they switched her anti-viral drug from acyclovir to gancyclovir, which provides more protection against CMV. She got her first dose tonight, and we're hoping it will start to make a difference in the next few days.

Otherwise, she mostly slept again today. She did interact a little this morning afte receiving some Ativan, and she asked Keri to read her "I Love You Stinky Face" about five times in a row, so that's a good sign. Saturday night she had about 8 bowel movements between 11:30 and 2:30, each one excruciating and followed by an uncomfortable diaper change. Tonight she's had fewer, and they've seemed to be less painful. Maybe tomorrow we'll start to see some unmistakably signs of improvement.

Day +29: officially worried

Mina Brigitta had another hard day today. She slept most of it, waking up about once an hour to have a painful bowel movement. Even though her stools are mostly water, she still cries out in pain when she passes them. Twice this morning she also passed some tissue from somewhere in her gut, indicating the severity of the breakdown. Her rash also continues to spread, getting angrier-looking and covering more of her body. Her skin is starting to break down in places, including two spots in her diaper area. Between the bowel pain and the itching, she's just extremely uncomfortable, so we've boosted the morphine level way up and she's been getting Benedryl and Tylenol pretty regularly as well.

We saw Dr. Cowan this morning, and he didn't really paint a bad picture. He said her rash is evolving but not necessarily getting worse. He was comforted that the ultrasound showed nothing, and by the fact that her liver numbers all went way down today. Maybe it's just that she looks worse, but inside things are getting better. But yesterday she was up and interacting, while today she just slept all day. She even let Grandma Lyn hold her in the chair. It's so hard to see her in so much pain, and to see her face all red and swollen, doubly so not knowing what the outcome is going to be. We'll just have to hope that tomorrow brings some improvement. And if not tomorrow, then the next day.

Day +28: a long road

Four weeks out from the transplant. We've been in the hospital a total of five weeks now, and it looks like it'll be a few more. The doctors told us today that it could take anywhere from several days to several weeks before she shows any improvement. She received the Infliximab Thursday night, and will receive another dose next Thursday. They've prescribed a total of four, but could give more if necessary.

Meanwhile, she's still pretty miserable. Her rash is still spreading; it's starting to show up on her arms and legs, and is getting redder and angrier particularly on her chest. Her face is all puffy and her lips and eyes are swollen. She looks terrible, and is definitely uncomfortable. On the other hand, the fevers are becoming fewer and farther in between, as are the vomiting and the diaharrea. And she was awake all day today after pretty much sleeping since Monday. They tried to do chest and gut CT scan but Mina Brigitta wouldn't tolerate it, and they didn't have an anastheseologist available. They were able to do an ultrasound instead, and didn't see anything worrisome. Dr. Cowan said today he's not convinced she has GVHD in her liver; he thinks the high bilirubin could be a side effect of her gut problems. Hopefully this all means the drugs are arresting the progress of the disease, and her body will start healing itself soon.

Day +27: no progress

Well, the higher dose of the prednisone doesn't seem to have done much good. Mina Brigitta's rash has gotten redder and has spread to cover almost her entire back and about half of her chest. It's also on her head, neck and face, and the palms of her hands are bright red. Dr. Cowan would say it was progressing or getting worse, only that it was "evolving". One thing we know for sure is it's not getting better. She continued to throw up today, and spiked another fever in the early evening.

Given all the symptoms, the doctors decided not to wait any longer to step up the treatment. They're switching her from cyclosporine to tacrolimus, a similar anti-rejection drug but one that is known to concentrate in the liver and gut, where Mina Brigitta is having symptoms. They're also treating her with Infliximab, a mononclonal antibody that targets T-cell lymphocytes. She'll get that once a week. Since all of the blood and urine cultures have come back negative, they're thinking the fevers are GVH-related, which makes sense to me. The hope is that the new treatments will begin to take effect over the next several days.

We needed a bit of good news today, and got it: the engraftment study came back, and it showed 100% donor cells! The test is only sensitive to about 1%, so there's still a chance that some of her own cells could grow back to measurable quantities at some point, but it's a good sign to be at 100% at this stage. So if we can just get through the couple of weeks, we have good reason to hope that the cancer will stay away.

Day +26: a miserable little girl

Mina Brigitta had a pretty tough day today. She spent most of it either sleeping or just lying around lifelessly. Her rash has gotten quite a bit worse -- she now has raised bumps on her back, bright red palms, and small red dots on her face and head. Almost nothing on her legs, strangely enough. Her bilirubin was also much higher today than yesterday, indicating that her liver is quite likely also affected. With the rash, the high bilirubin, and the mucous in her stool, she's pretty much experiencing what's called the "trifecta" of GVHD effects: skin, liver, and gut. She spiked another fever at about 5 PM after almost 24 hours without one, and with the fever started throwing up again. They decided not to wait to up her dose of the prednisone, and the Tylenol and Benedryl have helped her get more comfortable. She did perk up a little after she got a dose of morphine today, so we're putting her back on a continuous morphine drip.

The hope is that the higher levels of steroids and cyclosporine will help these issues within a few days. If not, they'll have to look at riskier options like monoclonal antibodies, but they'll want to get a biopsy to confirm the diagnosis before they take that step. The risk from the GVHD therapy stems from immune suppression, specifically of the lymphocyte lineage of white blood cells. It's these cells that cause the problems with GVHD, but they also are the most effective cells at fighting off viruses and yeasts (candida). She'll be vulnerable as long as she's on these therapies, but that theoretical risk is definitely preferable to what she's going through now.

Day +25: change of plans

Looks like we'll be in here a while longer. After throwing up all night, Mina Brigitta spiked a fever today. Looks like Keri and Lyn will get a few extra days to get the apartment ready!

It actually came as a bit of a relief, because no one could figure out why she was throwing up. Now we have to hope it doesn't turn into anything serious. She's back on vancomycin and ceftazidime antibiotics, and is back to receiving all of her meds through the IV. Now we'll just to watch and wait and see how things go. She pretty much slept all day in between vomiting. She apparently got kind of dehydrated from all the vomiting, despite the IV fluids, because they she didn't pee all afternoon and when she finally did it was very dark colored. She's resting comfortably now and hasn't had a fever in a few hours, so maybe she's already turned the corner.

She's also developed a new rash on the palms of her hands, on her chin, the back of her head, and on her back. It looks like it could be graft vs. host disease, but they're going to wait for a couple of days before raising her dose of prednisone to make sure it's not a virus. They keep saying a little GVH is a good thing, but it also presents a danger so I can't help worrying about it.

Day +24: and up and down and up and down

Mina Brigitta had a great morning and a horrible evening. I stayed home from work today so Keri and Lyn could work on the apartment. She was feeling great this morning, and spent an hour out in the hallway. By the end of it we were playing the game where she runs to me giggling and I lift her way up in the air. Then she went down quietly for her nap at about 3:15.

But when she woke up around 5:30, she seemed lifeless and only wanted to lay on me. She started throwing up at about 7:00, and has thrown up four times so far, despite having received three different anti-nausea medicines. No idea why the sudden change. The only thing we can think of is that they did raise the dose of her cyclosporine, which is really a kind of chemo even though it's given as an anti-rejection drug. She gets her next dose at midnight, so I'm thinking it's probably going to be a long night.

Dr. Cowan came on service this week, much to our relief and apparently to the relief of the entire staff. He's the director of the bone marrow service, and the doctor we met with several times before the procedure. He's been here a long time and has a lot of experience with transplants. He immediately started to taper down her dose of prednisone, and hopes to actually get her off of it soon. There's a good chance she'll have to go back on it because of GVH, but he wants to make sure GVH is actually going to happen before she has a long course of prednisone. He also mentioned that the elevated liver function tests could be the result of the anti-fungal drug she's on, so they're going to look at changing that.

Day +23: still some ups and downs

The downs: Mina Brigitta threw up about 15 minutes after taking all of her oral meds this morning, so she had to repeat some of them. She's pretty good about taking them, but the cyclosporine is an exception. They did warn us that it tastes really nasty and sometimes makes kids throw up. She was playing with her babies, but wanted up right away after taking it and didn't want to be put down. I soon figured out why. We decided that we need to get her on a schedule where she's had something to eat before taking her morning meds. Also, her liver function tests were higher over the weekend, including the bilirubin, which is the most important and dangerous one but the one which had remained at normal levels until this weekend. And she's become totally addicted to TV; she threw a major fit today when I wouldn't put on Jungle Book for the third time. Our DVD player isn't working at home, so it'll be interesting to see how she reacts.

The ups: her bilirubin came back down to normal on Sunday, which was a big relief. It never got anywhere near the panic level, but it was outside the normal range and rising. Veno-occlusive disease usually happens earlier, but not always. Hopefully it will stay down tomorrow. Also, her red cells and platelets rose for the second day in a row. It looks like she's going to make it through this without having received a single red blood transfusion, which is amazing (thanks for all the blood, Mr. Donor!). She's received several platelet transfusions, but maybe she won't need any more of those either. Also, she drank about 24 ounces of milk throughout the day, which is far more liquid than she had on any other day. Everything is looking good for a Monday release, except...

The apartment isn't quite ready yet. Keri and her girlfriends painted on Saturday night and Sunday, and she and Grandma Lyn spent hours cleaning, but there's still a lot to do and Keri doesn't think it'll all get done tomorrow. So we may end up asking them to hold us until Tuesday, which they've said they'd do.

Day +21: three weeks out

Well, it's been an interesting three weeks. We've definitely experienced a bit of the roller coaster ride we were warned about, but everyone is telling us we've gotten off pretty easy. That can still change, of course. GVHD can show up at any time, and her immune system will take six months to a year to be back to full strength. But we've been pretty lucky so far. There's still the nagging issue of her liver function tests, but no one seems to be worried about it. I'm planning to quiz the doctors one more time tomorrow.

Mina Brigitta is now taking all of her medications by mouth. She's still on the IV, but only because she's not drinking enough fluids. There's sort of a chicken-and-egg problem there; she's not as thirsty when she's getting IV hydration, but they won't stop the IV until she drinks more. It's true that she's not eating or drinking as much as we would hope. She's probably still feeling a little punky from everything she's been through. But there don't seem to be any more hurdles to us going home, so assuming everything goes well over the weekend I imagine they'll spring us mid-day Monday. That gives us the weekend to get the apartment ready, which is probably not quite enough time, but it will have to do.

I have another photo album ready; see the link at right. I've been working on these at night on those rare occasions when Mina Brigitta goes to bed at a reasonable hour (last night she went down at midnight :-( ...). It's from our previous stay in the hospital. I have two more to do, one from the time at home and one from this hospital stay. I'll probably work on the newer one first to get the pictures of the transplant day out there.

Day +20: holding steady

Mina Brigitta had another "consolidation" day today; they've now taken off most of her meds and her IV nutrition, and she's still doing just fine. She didn't have a lot of energy today, and the combination of being tired from low blood counts and the prednisone leads to a lot of crying spells, but she's eating and drinking and holding her own. Her liver function tests are still elevated, but no one seems too worried about it as long as her bilirubin is normal and she's looking well. Feeling better also means that it's harder to keep her entertained, and it seems like the room is feeling small again. Hopefully only a few more days...

Day +19: tapering down the meds

Mina Brigitta woke up in a much better mood than yesterday, almost a happy mood. That goofy, toothy grin is back! Today was the first day that, when I asked her who was coming to see her, she didn't say "Anta!" Instead she said "Teetee", which is what she calls our friend Christine who was here. Anta was her second choice of course, but she was psyched when she saw Grandma. But she cried when I went to leave today, and she wouldn't go up with Grandma all day long. I think she's getting tired of being left with a new person every day. But I have to go to work and Keri is scrambling to get the apartment ready, so it can't be helped.

They've been tapering down her medications over the last few days. She's now off the antibiotics, antifungals and morphine drip, and they're stopping the IV nutrition tonight. Then all she'll have left is the cyclosporine and prednisone (anti-GVHD) and acyclovir (anti-viral). Sometime in the next few days they'll try to switch those to oral to get her ready to go home. The doctors mentioned the H-word for the first time today! They're shooting for Monday.

Dr. Loh came by today as well. She was happy to see Mina Brigitta doing so well, but she said she almost wishes Mina Brigitta had been a little sicker. I do share the underlying sentiment about the long-term, but the problems people have during treatment can be just as dangerous, so it'll be hard to be too disappointed if we get to go home on Monday with only the issues we've dealt with so far.

Day +18: plateau

Mina Brigitta had a flat kind of day today. She was very tired and cranky this morning, even though she went to sleep at 9:30 or so, which isn't terribly late by her standards. I was actually worried something was wrong because it was really a dramatic change in mood since yesterday. It wasn't until after a 2.5 hour nap that she really started to perk up. She seemed fine in the evening, if not quite as energetic as the last couple of days. Her numbers were all flat too, about the same as yesterday. Probably just a blip in the long run. We're hoping for more improvement tomorrow.

Day +17: liver functions looking better

We had a nice surprise when we woke up this morning. Not only did Mina Brigitta look and feel much better, but her liver function tests were much lower. They're still abnormally high, but this was the first drop in over a week. Also, her white counts are way up again. Her WBC is 7.0 billion per liter, well into the normal range, and her neutrophils were 4.24 billion. Today they stopped an antibiotic and the antifungal drug, and tomorrow they'll stop giving her the white cell stimulating factor. Her urine output was also higher than her fluid intake for the first time in a while, and she was noticeably less puffy today. And she was chowing down on spaghetti and drinking milk when I arrived back at the hospital today.

She even got to go outside the room for the first time in three weeks! She was very excited, and even pushed her babies around in the stroller for a while. Of course, it's a bit complicated these days. She has no fewer than seven IV tubes leading into her catheter, and they had to put a mask on her and clear the hallway of people. But she wasn't going to let that dampen her spirits.

Today they took blood for an engraftment study, where they determine whether the donor's cells are growing, her own cells are growing back, or both. We should know the results in a few days. Some time soon they'll also do a bone marrow aspiration to make sure she's still in remission and a send a sample for a minimal residual disease test. For right now though, everything is looking up. Thanks to everyone for all of your thoughts and prayers.

Day +16: higher and higher

White blood count: 3.9 billion per liter (normal is 5.5-17.5)
Neutrophils: 1.6 billion (normal is 1.0 - 8.0)
Platelets: 19 billion, received transfusion (thanks, Emmasdadda!)
AST: 172 (normal is 16-41)
ALT: 394 (normal is 11-55)
GGT: 244 (normal is 5-39)
Bilirubin: 1.1 mg/DL (normal is 0.3-1.3)

It's that last number that gives us hope there's nothing seriously wrong with her liver. Bilirubin is what causes jaundice and other problems if it starts spilling into the bloodstream. Her number is up a notch from yesterday, but still within normal range, despite the rapid spike of the other liver function numbers. The attending physician consulted one of the two bone marrow specialists here, who said it could still be a reaction to the chemo and radiation conditioning. They're planning to reduce her IV nutrition further, from 20 hours today to 16 tomorrow to 12 on Tuesday. Still no tenderness or enlargement of the liver, so everyone is hoping the problem resolves itself over the next few days.

Otherwise, her spirits are excellent. She had a nice day today with our friend Christine ("Ti-ti"), who is visting for a few days from Seattle. She's still puffy from fluid retention, but they've stopped the diuretics and she's doing fine with her urine output. We finally put her on a continuous morphine drip, which seemed to help even our her moods some. We probably should have done this earlier because she has definitely been in some pain. Hopefully she'll only need it for a few more days as her new white cells start healing things up. She had some rice for lunch today and drank 5-6 oz. of milk in the evening, so that's another good sign. We're planning to get some whole milk yogurt in here tomorrow; I bet that hits the spot.

Day +15: numbers higher

Mina Brigitta's white blood counts made a nice big jump today, from 600 million to 1.5 billion per liter, with neutrophils at 680. Two more days above 500 and she'll be able to go out into the hallway! It's great that she's recovering so fast; they're so vulnerable to infections when they have no counts. She'll be immunosuppressed for a long time, but at least she's got some ability to fight back now.

Another benefit to higher white counts is that the sores in her gut that have caused her pain and nausea will start healing up. Right on cue, she asked for some yogurt today. We didn't have any handy, but she settled for about 8 bites of macaroni and cheese and a few ounces of whole milk. This is the first food she's put in her mouth in probably two weeks.

Unfortunately, her white counts aren't the only thing that are up: her liver function tests came back even more elevated today. However, there are also a couple of new theories about the possible cause. Both the cylcosporine she's on to prevent GVHD and the IV nutrition she's been on for two weeks can cause elevated liver function levels. Veno-occlusive disease seems unlikely because her bilirubin levels are still normal and her liver isn't enlarged. GVHD also seems unlikely, because the problem has gotten worse rather than better since they added the prednisone. With her gut healing, they're going to start tapering down the IV nutrition anyway; we'll be ecstatic if the liver function tests improve at the same time.

Finally, it seems hard to believe, but Mina Brigitta and her Uncle Bill, who is battling non-Hodgkins lymphoma, are going to be the honorees of a Mass said at St. Peter's Basilica at the Vatican. The mass will take place on Tuesday, May 17 at 7 AM local time. This seems like a nice opportunity for another collective prayer for Mina Brigitta's continued recovery. The time translates to 10 PM Monday night on the west coast.

Day +14: some liver issues popping up

Two weeks out from the transplant today. Mina Brigitta's white blood counts continue to inch upwards. She's at 600 million today (normal: 5-17 billion), and 270 million neutrophils (normal: 1-8 billion). 500 million is kind of a magic number for neutrophil recovery, so we're getting there. Her skin rash is still there a little bit, but still seems to be improving.

Her liver function tests (http://www.gastromd.com/lft.html) have become a bit worrisome, however. Several of them are registering elevated levels, indicating some type of trauma. For example, her Alanine Aminotransferase (ALT) went from 22 to 68 to 166 (normal: 11-54) over the last three days, and her Aspartate Aminotransferase (AST) went from 16 to 32 to 67 (normal: 16-41). There are a variety of potential causes, including:

• Viruses such as CMV or hepatitis
• A continued reaction to the chemo and radiation treatment
• Veno-occlusive disease (VOD, http://www.merck.com/mmhe/sec10/ch138/ch138c.html)
• Graft vs. host disease (GVHD)

Apparently, the donor managed to acquire the CMV antibody between the time he took his preliminary blood test and the day of cell harvest. This doesn't mean he had an active infection, and even if he did the risk of tranferring it to her is low. Her CMV test came back negative in any event, so it's not that. The doctor thinks it's late to be a reaction to the chemo, and she's not showing other signs of VOD such as liver enlargement, elevated bilirubin levels, or jaundice, but they aren't ruling it out.

That leaves GVHD, which commonly occurs in the liver, skin and gut in the acute form. Some GVHD was likely given that the donor was only a 9/10 HLA match, and mild cases don't usually cause too many problems. Unfortunately, there aren't that many treatment options for severe cases, which are often fatal. We don't know she has it yet, and the prednisone seemed to work pretty well on the rash. We're hoping she gets a mild case that results in graft vs. leukemia effect but doesn't advance into anything severe.

Otherwise, Mina Brigitta had a pretty nice day again. Grandpa had an 8-hour shift at the hospital today, and they played all kinds of games. She does seem to be in some kind of discomfort, though. Amber gave her morphine a couple of times, which she said seemed to put her in a more normal state of mind. Tonight she's been very restless again -- I had to sit with her in the chair from 8:30 to 11:30 while she tried but failed to get into a deep sleep. Finally the nurse gave her some Benadryl, which seems to have knocked her out pretty good.

Grandma and Grandpa leave early tomorrow morning after a two-week stay. It was great to have them, and sad to say goodbye. It's such a strange time. Oh, and Mina Brigitta is losing her hair. She still has some wisps, but will probably be shiny bald in a week or two.

Day +13: more of the same

Mina Brigitta continues to feel better, though she's nowhere near her normal self. She was really fussy all night, tossing and turning and thrashing around, most of it while trying to sleep on my lap in the chair. She was really cranky when I left this morning, probably because she was short on sleep but also because of the prednisone. Mom and Dad said she had another nice afternoon, though she wouldn't let Keri leave tonight. She seems to have some kind of pain or discomfort, because she wakes up whimpering at times, but she won't or can't tell us where it is. But still no fevers or nausea, and a 100% improvement over a couple of days ago. Her blood counts are slowly improving, but she did receive another platelet transfusion tonight.

The dermatologist stopped by late this afternoon to tell us that the skin biopsy had come back negative for both graft vs. host disease and engraftment syndrome. So he was guessing virus. But earlier the BMT team had seemed to rule out a virus because both the rash and the fever went away with prednisone. We would seem to be left with either a drug reaction or GVHD that didn't show up in the biopsy, but it will be interesting to see what the BMT team has to say tomorrow.

Day +12: slow improvement

Mina Brigitta seems to be slowly recovering from whatever it is that's been bugging her. She hasn't thrown up or had a fever since Monday. Her rash is still there, but seems to be slowly getting better. The nurse said it can take several doses of the prednisone before the rash will totally go away. Her heart rate has been in the 120s after getting up as high as 190 during her fevers, so they finally took her off the continuous heart monitor. Between the three heart leads, the oxygen saturation sensor on her toe, and the six tubes leading into her Broviac, she was constantly all tangled up. No interest in eating or drinking anything except a little water, but that's no surprise with all the fluids she's getting and the IV nutrition.

We did learn that she tested positive for a C. diff. infection. C. diff. is a type of bacteria that lives in the gut, and is normally held in check by other bacteria. The other bacteria tend to get wiped out by antibiotics, which is why C. diff. is very common after long courses of antibiotic treatment. They're giving her an antibiotic called Flagyl for the C. diff. The only wrinkle is that the infection could get transmitted to Isaac, so we have to be really careful about not letting the kids touch and washing our hands when switching from one kid to another. They also suggested that we wear a paper gown when handling Isaac in case the bacteria is on our clothes.

Mina Brigitta's white counts were up a little bit again today, from 300 million/liter to 400 million. This again is hopefully a sign that the donor cells are engrafting. She received a platelet transfusion yesterday, and will probably need another tomorrow or Friday. Her red counts have been slowly dropping as well, so she'll probably need a blood transfusion over the weekend, which would be the first one since the transplant. She got a nice long boost from all the red blood the donor sent.

Last night she was feeling well enough to want to sleep in the chair with me again. She was tired in the morning and napped for an hour or so after getting Benedryl, but she was fairly energetic and played all afternoon. She must have worn herself out, because she fell asleep shortly before I arrived around 8 PM. Unfortunately, she woke up when we had to change her diaper, and couldn't get back to sleep until 9:30.

Day + 11: we think we have a culprit

Last night Mina Brigitta laid in one place all night long, which is totally unusual. She occasionally woke up whimpering and shivering, and got meds several times. Her rash was much worse, little angry red dots all over her body, especially her legs. It seems like the nurse was in there all night long. She finally gave some morphine at about 5:45, and that put Mina Brigitta out till about nine. I slept in the chair instead of in the bed because I didn't want to disturb her. She didn't throw up all night, which was good, but she threw up again this morning, and just generally felt miserable.

They decided to try some prednisone at about noon, just in case this was an early manifestation of graft vs. host disease. I wasn't there to witness it, but Keri said you could almost see the transformation right before your eyes. The rash went way down, her fever broke, she stopped feeling nauseous, and generally had a very nice afternoon. The rash had returned by the time I got here about 8:00, and she was so tired she crawled right up in my lap and went to sleep. But her fever is still down and she seems a lot more comfortable than she was last night. She'll get another dose of prednisone at midnight, so maybe we'll actually get some sleep tonight.

Prednisone is a steroid that is used to combat GVHD, and the fact that she improved so rapidly has the doctors thinking that's what this is. GVHD occurs because the donor white blood cells (the "graft") attack the host's cells because they see it as a foreign body. Between 50% and 80% of BMT patients get some form of GVHD, and a little bit is desirable because the graft is also known to kill the host's leukemia cells ("graft vs. leukemia", or GVL). It can cause serious problems, however, and is a major cause of treatment-related mortality. I'm a bit worried that such an early onset might mean that Mina Brigitta is in for a severe case. But Dr. Cowan said that wasn't necessarily so, and a quick search of the literature didn't turn up anything to indicate that early-onset GVHD is more of a problem than a later manifestation.

They did a skin biopsy today which may be able to confirm whether it's GVHD or not, but the results will take 3-7 days. In the meantime, they'll continue to treat her with prednisone as long as it seems to help. There's also the possibility that this is "engraftment syndrome", which is basically described as a reaction that occurs around the time of neutrophil recovery. Engraftment syndrome is sometimes, though not always, associated with a host vs. graft reaction and graft failure, which we're really hoping is not the case.

You may have already figured this out from the preceding paragraphs, but Mina Brigitta's white counts appear to be recovering. Her total WBC went from 100 million cells per liter on Sunday to 200 on Monday and 300 today. Normal is above 5.5 billion, so we're not booking those tickets to India just yet, but we're pretty happy to see any improvement at this point. This fits with the graft vs. host theory, because the rash began to appear right around the time her white counts started to inch up, and it's the donor's white cells themselves that cause the graft vs. host effect.

Day +10: still miserable

Mina Brigitta's condition has not improved at all. She still is throwing up and spiking very high fevers, up to 105. And her skin rash has gotten much worse. Now she has angry red pinpoint marks in patches all over her body. They don't seem to bother her much, but it's hard to tell with how horrible she's feeling. We're keeping her pretty much constantly medicated with Tylenol, Bendryl and/or Ativan. She has moments of waking up and wanting to play, then typically goes to sleep, then wakes up and throws up and is miserable until the next cycle kicks in. This morning, the "book buddy" came (Judy, a volunteer who reads books to kids on this floor) right after the Ativan kicked in, and Mina Brigitta was rapt for 45 minutes. But she slept most of the day.

They still don't know what the cause of the fevers and the rash. A dermatologist came in this afternoon, and said she didn't think it was a reaction to the antibiotics, which is good news because that means they can still be used as a treatment option. She also didn't think it looked like a fungus, which is even better news. One possibility is that this is an early manifestation of graft vs. host disease (GVHD). However, it would be unusual for it to occur this early, especially since her white counts are still so low. The leading candidate seems to be some kind of childhood virus. Apparently there are dozens that can cause this kind of rash in immunocompromised kids. The good news is that these viruses don't typically cause major problems for the immunocompromised, they just take a lot longer to clear. I would be very happy to live with these symptoms for the next few weeks if we knew it wasn't going to get any worse.

I've spent some time over the last several days organizing pictures. I did complete one album, and I should have a couple more very soon. The link is on the right.

Day +9: rough day

Mina Brigitta had a miserable day. High fever all day long, throwing up every two hours, despite receiving Tylenol and Benedryl all day long. Everyone's hoping the drugs she's on will kick in and she'll begin to feel better tomorrow. They did X-ray her lungs today just in case and they looked fine, so whatever's attacking her isn't there. Probably it's in the gut, because she's more nauseous than she's ever been, even when she had the RSV. Aside from that, she has a pretty bad skin rash. She seems to be reacting to the vancomycin, even though she's had it lots of times in the past with no reaction. Such a quick change -- just Friday she was running around all over the place.

Happy Mother's Day, everyone! It was nice to have my Mom here, though I pretty much only saw her in passing when we changed shifts at the hospital. It was her first Mother's Day since Grandma's passing. Keri and I celebrated the occasion by working for three hours in the apartment, then going to dinner at the local sushi restaurant. It was a nice dinner, and very nice to get out and spend time just with each other, but it was hard to muster too much enthusiasm.

Day +8: Mina Brigitta spikes a fever

I guess we knew it couldn't last forever. In fact, I told Keri tonight I felt like Mina Brigitta had stolen a good week during a time when she wasn't supposed to have one. She threw up again during the night, twice, and today she was pretty mellow unlike previous days. She seemed to go downhill in the afternoon, and I could tell she was feeling a bit warm. She hit 39.2 sometime around 7 PM, and they're starting vancomycin, which she's had many times before, and an anti-funghal drug called voriconazole, which she hasn't. They're not planning to use the amphoteracin, which we think was a major cause of her nausea when she had it in February.

A fever is never a good thing, and it's a bit worrisome because she's been on two antibiotics already with broad coverage. The things she's not covered for are fungal and viral infections. We need to really hope it's not one of those, because both are difficult to get rid of with no immune system. However, it's possible she has a bacterium that she's not being covered for, which might have entered through a sore in her gut. They're going to re-check her blood levels of the tobramycin to make sure she's receiving a therapeutic dose. She's seemed to metabolize drugs very quickly in the past, so it's possible the dose she's receiving now is too low.

The Tylenol knocked her fever down very quickly, but she did throw up again around 11:00. Could be a long night, and a long stretch of days ahead. She had such a good week, it's sad to see it come to an end, but they did warn us that this would be much more of a roller-coaster ride than anything she's gone through before. I guess the ride is just starting to get interesting.

Day +7

A week out from the transplant, and so far so good. The doctors said the fluid retention issue is most likely nothing to worry about; the low albumin is just her liver's reaction to the toxins that were in her system due to the chemotherapy. She got a diuretic again this morning, but then during the day peed out more than she took in, so hopefully she won't need any more. With all the fluid, her weight is now up to 14.9 kilos, which is about where she was in January.

Otherwise, she continues trucking along. She had another really good day today, playing hard all day long with Grandma and Grandpa. She's had some quality time with them, as Keri has been gone a fair amount of the time dealing with apartment issues, and they've definitely bonded. She threw up again a couple of times this morning, but they put her back on the kytril anti-nausea medication, and she actually asked for some yogurt tonight. She didn't eat more than a few bites, but she had fun playing with it for half an hour or so, which is progress. The doctors are of course very pleased with how she's feeling. The most important thing is that she hasn't had a fever or any other sign of an infection. Let's hope it stays that way.

Day +6

Mina Brigitta had another very good day today. She woke up throwing up again, but then received Benadryl in preparation for a platelet transfusion. That put her to sleep, and she was in a very good mood when she woke up. Grandma and Grandpa had her running back and forth across the floor of the hospital room, and playing all kinds of other games. She was so tired, she crawled up on me as soon as I got here and was asleep by 8:00. She didn't draw any waah babies today, but the again Momma was gone most of the day and she's only done that with Momma or Dadda. Still no interest in food, but we can't complain too much as long as she's energetic.

Maybe we just getting jittery, but there's been a couple of minor worries over the last couple of days. She had a temperature of 38 at some point this afternoon, which is kind of the magic line for when they want to begin more aggressive treatment. She's already on two antibiotics, tobramycin and cefepime, so that would probably consist of another antibiotic such as vancomycin and/or an anti-fungal drug. However, she hasn't had a fever since, so we're thinking the high temperature was just due to all the exertion.

The other item is that she appears to be retaining more fluids than normal. They had to give her a diuretic this morning. This might be related to the slightly low level of albumin (http://www.transweb.org/qa/qa_txp/faq_albumin.html), which was reported in her blood test today. They're carefully watching her fluid intake and outflow, and will manage it to ensure that fluid doesn't begin to build up in her lungs. The worry is that this could be an early indication of some type of liver or kidney problems, such as veno-occlusive disease, which are possible side effects from the BMT preparative regimen. It's far too early to tell, and the good news is that the symptoms she's shown so far are not at all uncommon.

Day +5

More of the same today. Mina Brigitta had lots of energy and played hard all day long. She was so energetic that she didn't take a nap today. She crashed hard at about 9:00; one minute she was playing with her sticker book, and then suddenly she crawled up on me and was asleep in about two minutes. Still had no interest in eating, though. After I posted last night, Mina Brigitta woke up around midnight and threw up blood. The nurse assured me that this is pretty common, and that it looks worse than it probably is. For better or worse, Mina Brigitta has never had any mucousitis through five rounds of high-dose chemo. Hopefully this means the radiation is affecting her cancer in a way the chemo didn't.

She's also still expressing her desire to go home. This morning I was reading "Go Dog, Go!", when we came across a picture of a dog in a stroller. The dog was going "home", Mina said, and she made me take the book out into the anteroom and add it to the pile of "waah babies" from yesterday. Then we drew some "waah apples" (teary-eyed apples), and out those went into the anteroom. Then we drew some smiling apples, and those stayed in the room.

We did get some sad news over the weekend: Stacey, one of our favorite nurses, and one who took a special interest in Mina Brigitta, is leaving UCSF. She's been here for four years, which she says is "long enough". I totally understand.

Day +4

Mina Brigitta is feeling the effects of being away from home. For the past several days, whenever she sees pictures from home she remarks on them: "Sissy house!". Sometimes she gets sad and cries: "I want dis house!" or "Sissy home!". Today she did two things while Keri was here that are pretty indicative of how much she misses her house. In the book "Madeline", the protagonist goes to the hospital to have her appendix taken out. Mina Brigitta saw Madeline's empty bed, and began to cry and talk about "home". Then later, Keri was drawing pictures of babies (one of Mina Brigitta's favorite activities), and drew some happy babies and some sad babies just for fun. Mina Brigitta said the "waah babies" wanted to go home, and she made Keri take the picture of the waah babies out into the anteroom. She did this over and over, so right now there's a stack of drawings of crying babies sitting on the counter in the anteroom.

Otherwise, she had an OK day. She's definitely trending down, but is still awake and alert and playing a lot. She didn't have much to eat again today, and then tonight she had some bloody mucous in her diaper, so that probably explains why.

Day +3

Well, Mina Brigitta had another really nice day. Didn't eat much of anything all day, but was active and alert and playing contentedly all day long. She'll start getting sicker very soon, but it's so nice to have days like this before that happens.

She was in a very cute mood when I got back from the hospital, interacting with me and yet playing by herself at times as well. She used to play by herself pretty well, but she doesn't really get alone time at the hospital, so I try to butt out whenever she seems content by herself. She wanted to get down on the floor at about 9 PM, and she didn't seem sleepy at all, so I put her down and let her walk around. She went back and forth between the closet and the daybed for about half an hour, pulling towels and washcloths out of the closet and stacking them neatly on the daybed. This is one of her favorite activities at home. I can't wait until she's old enough to help us fold the laundry!

Day +2

It appears Mina Brigitta is starting to feel the effects of the radiation. She didn't eat any lunch or dinner, and when nurse Stacey offered her some yogurt, she promptly threw up all ove Keri. Later she did eat a whole 8 oz. tub of yogurt from Grandpa. I'm just hoping that doesn't end up all over me at some point tonight. We can expect her to keep getting worse for the next several days. They started IV nutrition the night of the transplant as a standard measure, so we don't have to worry too much about her eating right away. Hopefully she'll take in enough to keep everything working properly. The yogurt is really good for her -- has lots of protein, calcium and fat, and also replenishes the beneficial bacteria that tend to get wiped out by lenghty courses of anti-biotics.

Otherwise, Mina Brigitta seems to be weathering things pretty well. She still has plenty of energy, and played very actively most of the day. She interacted really well with my parents today, who flew in Saturday night in a grandparent swap. She was very shy at first, burying her head in my shoulder, but she definitely knows them and it didn't take her long. It's so good for her to have others to interact with. When I came back to the hospital tonight, she said "Dadda go!". It's nice to be needed, but sometimes it's even better not to be.

Day +1

Sorry for the late update; our little patient was up until 11:30 last night and Daddy fell asleep in the chair. Day +1 was very, very nice. All the cells she got gave her a huge bump in her red blood counts, from 8.3 g/dL to 14.5. So she had lots of energy yesterday, and probably won't need a blood transfusion for several days now. She played with Grandma Lyn most of the day, and when I got back to the room about 7, we ran around and danced on the floor for quite a while. She probably had more energy yesterday than she has in a week.

Her white counts, on the other hand, are now zero across the board, so infection becomes a real risk. She'll slowly start feeling the effects of the radiation as well, so we're savoring these nice days, in between trying to get the apartment squared away. Keri woke up yesterday realizing Mina Brigitta could be ready to come home in three weeks, and there is a ton of stuff to do in the apartment before then. Yesterday we discovered that water leaks out of the washing machine, so getting a new one will be one of the first things on the list.