Slowly settling in

Another nice day today, Mina Brigitta is slowly settling in and feeling more normal. She's eating and drinking more every day and getting more color and more energy. She now periodically asks for "num-num" or "agua" or "juice". Some things are still a bit different, though. She still isn't eating much for breakfast, and the last few mornings after waking up she's been trying to push me off the bed, saying "dadda doo (down)". I'm still not quite sure what to make of it, other than that she doesn't want me to try to convince her to go back to sleep.

She's becoming much more talkative the last couple of weeks, too. Today she learned a new word: "Sissy". It's the first word that she can use to refer to herself, though she hasn't used it in a sentence yet. Also, Awais (father of her friend Emma) brought over and put together an "exersaucer" for Isaac on our living room floor. Mina Brigitta is very excited about it, she keeps saying "Emma dadda DIS!", and "bubba der" (pointing to it). Sometimes she combines the phrases, saying something like "bubba emma dadda der", meaning she wants brother to sit in the exersaucer. She's also recently learned "see" and "do", which are very useful verbs to know.

She has another lumbar puncture tomorrow, with a dose of prophylactic chemotherapy given in her spinal fluid. She's shown no evidence at all of cancer in her central nervous system, but they give these small doses every so often to prevent that. She has to be sedated for the procedure, which unfortunately means no food or drink until mid-afternoon when it's over. And then, she'll probably be somewhat nauseous from the chemo for a day or two. Good thing she was eating better today.

Then Keri and Isaac fly up to Seattle late tomorrow (Tuesday) night for a whirlwind tour of Children's Hospital and the Fred Hutchinson cancer research institute on Wednesday. UCSF is an excellent institution by reputation, but we aren't 100% happy with it. This is mostly because of bureaucracy, but we're also concerned that the staff isn't been perfectly consistent in exercising the caution required to care for severely immunocompromised patients. I think it's probably better in the BMT unit; in fact, we were housed back there most of the time last spring because they had extra rooms, and it wasn't until we were moved out that Mina Brigitta had her first serious fever. Fred Hutch pioneered BMTs and is still probably the world's leading institution, and we obviously have a lot of friends and family up there. It will be interesting to hear what they have to say, and to see Keri's impression of it. All else being equal, we'd probably prefer to stay here just because we wouldn't have to uproot the entire family. At the very least we'll get an expert second opinion on the 4/6 cord blood match and the conditioning regimen for the BMT.

Better

Definite improvement today. Mina Brigitta woke up at 7:30, and rather than looking around and closing her eyes again, wanted to get up right away. Throughout the day she had a certain gusto that she didn't have yesterday or the day before. She wasn't quite so clingy or needy, and even seemed to recover some color in her cheeks. Could be that she's finally starting to feel like herself again after kicking whatever it was that was eating her the last two weeks. I also think some of the hard adjustment has been that Isaac is now starting to become a competitor. She's a very sweet big sister, but there are definitely times when she's jealous or wants to take away his toy just because. This would probably have been brewing all this time, but it just didn't manifest at all in the hospital.

She's even finally starting to show some interest in food again. I got her to eat some ice cream last night by showing her the special ice cream spoon with her name on it that Pia Sundqvist's daughter Surya sent from Sweden. Today she had some black beans and avocado ("appa-caw") and some blueberry yogurt with granola (just like "dadda"). She's become a very dainty eater, taking great pains to get the smallest possible bite on her spoon before raising it to her mouth. This is the girl who used to shovel it in as fast she could without stopping to breathe. But then at dinner she had two servings of spinach tortellini and two servings of daddy's moussaka. We're trying to calorie-load by coating everything we give her with olive oil (which she loves) or butter. I also bought some triple cream brie cheese which she seems to like (so does daddy).

It's such a relief to see her feeling better. She's been so sick that it's been really hard not to fret. I've been sort of realizing how much comfort I took last spring in the fact that she did so well throughout the treatment. I figured as long as she was doing so great, she was going to be OK. Well, that was true as far as making it through the treatment goes, but it might have been a false comfort. Dr. Loh has a theory that Mina Brigitta metabolizes drugs faster than most people. This would explain why they keep having to ramp up the doses of antibiotics because the levels in her blood keep coming back too low. It might also explain why she never got the nausea or gut sores or other major side effects during her previous rounds of chemo; perhaps the reason she sailed through the chemo treatment was that she wasn't getting high enough doses. There was nothing to be done about it anyway (there's no protocol for tinkering with doses of the chemo she got), but it's an interesting theory.

Readjusting

First full day at home. Mina Brigitta shed a lot of tears today, beginning with a couple of uncharacteristic crying spells during the night and continuing throughout the day whenever she got frustrated, which seemed to happen a lot. As much as I know she prefers being home, the hospital has its own rhythms, routines and boundaries that I'm sure are comforting in a way. She also has one-to-one time with an adult all day long; I have to keep reminding myself that I can't expect her to sit down and play by herself all day long like she used to. And she's tired and very weak from being in the hospital and from having low red blood counts. She's still walking pretty gingerly, appearing to favor one leg (although it's definitely improved since last week), and she gets tired very quickly.

But it sure was fun to watch her occupy herself all day long. Just busy busy, all over the house. After being up until midnight last night, she didn't nap until 4:00, was up again at 6:00, and didn't fall asleep until 11:00. We'll try to start enforcing a better routine tomorrow; she needs to sleep. She's still eating like a bird, though it may have improved a little today. Again, we have to remind ourselves we can't expect too much too soon. It's just that we have a limited amount of time to help her get her strength back, and the clock is ticking. Isaac is enjoying having his sister home as well. He's just getting to the point where he really smiles at her. It's fun to watch them interact. Unfortunately, he's now sprouting two front teeth on the bottom, so he's a bit cranky.

I took the kids for a walk at the "agua park" this afternoon (Aquatic Park in Berkeley), and Mina Brigitta had a great time. She drinks in the stimulation like someone who's been in the desert for 40 days, which I guess she pretty much has. The birds, the dogs and most of all the kids were cause for squeals of delight and finger-pointing ("Zis!" "Zis!"). It was a bit hard for me to take, to tell the truth, knowing that she has to go back into isolation so soon and not knowing when she'll get out, if ever. I'd probably feel better if she didn't look so pale and thin and weak; right now she just doesn't really look like the hale and hearty girl she appeared to be even during the worst of her chemo last year.

Finally home

No more fevers, so Keri picked us up at 6:30 am. Mina Brigitta was wide-eyed watching all the commotion on the street. I've never seen anyone so excited to see a bus; she literally squealed when it went roaring by. We had a little trouble convincing her to get into the car, but she settled down once it sank it that she really was going "ohm". She was a bit disoriented once we got home -- very needy and clingy despite her obvious delight at being here. That probably had a lot to do with being tired; we got up pretty early, and she has a fairly low level of red blood cells. She was better after a brief late morning nap, and then even better after napping from 4 to 8 pm (which explains why I'm writing this entry at midnight even without the hospital sleep interruptions). But it was very fun to watch her settle in throughout the course of the day. She even ate and drank; not quite enough, but more than she had in weeks.

We're still not sure how long we'll be here. We've set the wheels in motion to get an official consult from Fred Hutch in Seattle. Keri would probably fly up there next week if it can be arranged. Everyone is in a big hurry to get the next step going while Mina Brigitta is still in remission, but it's probably OK if it doesn't happen for two or three weeks. The more important thing right now is that Keri and I feel comfortable with the facility and the course of treatment. For now, though, we're just going to enjoy being home with Mina Brigitta.

So close we could taste it

We were packed up to go home today when Mina Brigitta spiked a low-grade fever. She hung out around 100 most of the afternoon, briefly spiking up to 100.8. That was enough for them to keep us here overnight for observation, but not to start another round of antibiotics. That's good because we really want her liver and kidneys to have a couple of weeks to recover before beginning BMT conditioning. However, they wanted to keep her close because if she spiked higher they'd want to start antibiotics immediately. Keri was fit to be tied, and I was none too happy myself, but in the grand scheme it's probably better to be safe than sorry. They promised to let us go first thing in the morning if no more fevers. Her temperature is way back down as of midnight, so Keri's planning on picking me up at 6:30 AM. It'll be good to get out of there before they have time to change their minds!

Thanks to everyone who wrote about the sterility issue. It's definitely comforting to know there may be alternatives for her, but it's still a tough thing to think about doing to your 22-month old daughter. And of course, I'd be extremely thankful just to have the opportunity to talk to her about this in 20 years.

Also, thanks much to everyone who has asked about being typed for a bone marrow match. Here's the issue: apparently the odds of anyone we know being a match, even close relatives like cousins, aunts or uncles, are too small to justify the effort and the expense. Unfortunately, you'd have to pay for the tests yourselves, and they're not cheap. There's also the issue of timing; she either needs to get a transplant in the next few weeks, or else she needs to have another round of chemo, with another set of risks and side effects, to keep her in remission. So we basically need to have a donor by next week. All that said, if anyone wants to pay for the tests themselves and can do it right away, contact me and I'll find out where to have the info sent to see if it's a match for Mina Brigitta. That way, at the very least, your typing info would be on the registry, and who knows, maybe it would be a match for another little girl like Mina Brigitta. Here's the link to find out more info about how to become a donor:

http://www.marrow.org/HELP/join_the_registry.html

Thud!

That's the sound of Keri and me falling back to earth. We learned yesterday that despite a promising beginning, the transplant team has been unable to find a good HLA-matched donor for Mina Brigitta. They still have three more donors to type, but are not optimistic that any of them will work out. However, they were able to identify three possible matches from donated umbilical cord blood, one of which they know is a reasonable 4/6 match that they would be able to use for transplant. The other options are to use either Keri's or my stem cells, or conducting a more detailed search of the European registry. The latter would take several weeks, probably necessitating another round of chemo to make sure Mina Brigitta stays in remission.

The problem with using less-closely-matched stem cells is the increased likelihood of side effects from graft-vs-host disease, where the new immune system (the "graft") attacks the host's body. Cord blood does seem to cause fewer problems with graft-vs-host disease, possibly because the donor has not yet experienced immune response. However, it is also less likely to engraft (i.e., be successful at taking over her bone marrow), and if they have any problems they can't go back and get more. A 6/6 adult donor match would have been preferable, but apparently was not in the cards. Our road just got steeper again.

The other thing I learned yesterday (I guess Keri already knew this) is that sterility is not just a theoretical side effect of the conditioning regimen, but an almost certain outcome. I just hate that thought, especially since our girl is such a mother to her dolls, and her brother.

Dr. Loh just came rushing into the room...

... to tell us that Mina Brigitta's bone marrow looks beautiful! She's in remission! Yippee! And there's still no indication of fungus in her sinuses, so they're going to stop the amphoteracin today and the last antibiotic tomorrow. As soon as she starts to drink, not even eat but drink, they'll let us get the heck out of here! Now we just have to start getting ready for the bone marrow transplant...

Big day tomorrow

Her bone marrow biopsy is scheduled for 7:30 am. She'll be first out of the dock unless there's an emergency case that comes in overnight. They'll scope her sinuses first, then do the BMB and lumbar puncture. We will hopefully find out she's in remission some time in the afternoon. We'll be on pins and needles until we know -- I can already feel the butterflies. I'll post the result as soon as I'm able.

We had another great day today. Turns out the playroom was open after all, so we went down there about 10:30 for an hour or so. Mina Brigitta walked to the elevators holding my hand, and from the elevators to the playroom. She played with dolls for awhile, then stickers, and did some painting. She even climbed a few stairs! There were several other kids in there; everyone was kind of doing their own thing, but Mina Brigitta was wide-eyed watching the other kids. After an hour or so she wanted "up with dadda" and said she was "all done", so we came back to the room.

Keri and I left Auntie Kari with Mina Brigitta and sent Isaac off with Amber, and then treated ourselves to a sushi lunch and an afternoon in a cafe. We hadn't done those things in a while, and it was really nice to catch up. Then tonight we took Mina Brigitta for another walk in the hall. She's kind of wobbly and appears to be favoring one leg, but has a lot of energy for what she just went through. After being out for a while, she started practically running down the corridor. When we got to the end she was totally out of breath, wanted up, and then buried her head in my shoulder. We think she scared herself a little with how tired she got.

Please keep us in your thoughts and prayers tomorrow.

Another good day

Mina Brigitta had her best day in probably a month today. She was awake and active all day, with only a two-hour nap. After waking up vomiting twice during the night, she received Kytril at 5:00 am and didn't throw up all day. Still not eating anything, but she almost seemed like herself today. Her blood counts continue to inch up as well, so we can now be officially optimistic that we'll have made it through re-induction and can focus on getting ready for the transplant.

With the negative RSV result, the doctors gave us the go-ahead to take her out into the hallway and even into the playroom! Unfortunately, the playroom was closed today and will be closed tomorrow for the holiday, and Tuesday she has her bone marrow biopsy in the morning so will probably be knocked out most of the day. Still, it's a nice thought...

No fevers today and negative for RSV!

Keeping our fingers crossed for tonight and tomorrow. Mina Brigitta did spike Friday night at about 3 AM, and was warm but not officially feverish when I woke up Saturday morning. We kept waiting for her to spike a fever all day, but it didn't happen. She still has the nausea though -- she threw up in the middle of the night, this morning, and again in the afternoon. She's still throwing up lots of stringy white mucous from the RSV -- that's probably enough to make anyone ill. But good news on the RSV front as well -- the swab they did yesterday came back negative! They'll want another negative test before they declare it officially gone and allow her into the hallways and the playroom, but this is great, and somewhat unexpected, news. Keri came down with a major runny nose today, so now we're wondering if Mina Brigitta didn't have a new virus this week that she somehow transmitted to Keri (but not to me). Who knows.

She had a really nice day today, as well. I was kind of dreading it, because we don't have anyone else in town so it was going to be only Keri and me in the hospital room all day. But my friend Awais came, who Mina Brigitta now refers to as "Emma's Dadda", and we took Isaac and went to the local Indian restaurant. Meanwhile, Keri's friend Liza also showed up, and spent an hour or so entertaining Mina Brigitta while the boys were out. Mina Brigitta was making both of them draw babies on the magna-doodle she got from the Little Wishes foundation. Later on, she did the same to both the day nurse and the night nurse, as well as the nurse's aide. Awais also took some very cute video of her playing with her brother. She was almost back to her old, cute self. Just in time for Auntie Kari to arrive!

Four weeks after starting chemo, Mina Brigitta's hair is now starting to fall out in earnest. She's constantly getting a hair in her pacifier, which is quite frustrating to her. She also occasionally reaches up and grabs a handful of hair and pulls it out. Luckily, so far it's just sort of gotten thin and hasn't fallen out in big clumps or left any bald spots. I expect she'll be completely bald in a few weeks, and will probably stay that way until late spring. I'll miss her wavy blond hair a lot!

A reasonably hopeful day

Mina Brigitta's MRI went just fine this morning. She woke up from the sedation and chatted with the nurse for a few minutes before I got there. She'd had a slight fever when I woke up about 8:30, but she was cool as a cucumber when we brought her back to the room two hours later. The good news is that nothing showed up in the scan. They still don't think her sinus issue is a fungal infection. However, they still want to get a sample to be sure, so they'll do a biopsy on Tuesday when she's down for her bone marrow biopsy. They also looked at the bump on her back, and said it showed signs of a "classic hemangioma" (a hemangioma is a generally harmless collection of blood vessels; read more here: http://www.nlm.nih.gov/medlineplus/ency/article/001459.htm). There was a slight worry that it was a chloroma, which is a collection of leukemia cells.

The doctors agreed to take off two of the antibiotics she's been on, on the off chance that the Zosyn is the cause of the fevers. I was hoping that would mean the end of the fevers, but she spiked again this afternoon. Still, she had a pretty good day today, was up and playing from about 5:00 to 9:00. She didn't have quite the sparkle she had yesterday, but it was still fun to see her with some energy. The doctors are pretty optimistic at this point that nothing serious is going to turn up and that she's just going to continue to improve. Hopefully we'll never know what the cause of the fevers was, they'll just go away and that will be that.

On a sadder note, I got word today that my Grandma Callard has been hospitalized with bleeding of the brain. At 93, they won't be able to operate. It's hard to be stuck here in San Francisco at a time like this, but there's a little girl who needs me. Kari is coming tomorrow night and will stay until Tuesday, so I'm sure we'll be sharing some Grandma stories.

Two steps forward, one step back?

We started off the day with good news: the CT scan went just fine, and Mina Brigitta was a very good girl. More importantly, the scan showed that her lungs have improved since last Friday, and that there doesn't appear to be a locus for a fungal infection in her lungs or any of her organs. The sinus scan did show that one side is filled with some fluid, which could be an infection or just mucous.

Mina Brigitta also had a pretty good day today. She did still have fevers, but in the afternoon was feeling quite well, standing up on the bed, talking, playing, interacting with her brother. She had probably the best day she'd had in a week. We were hoping she might have finally turned the corner, but she spiked pretty high again tonight at about 9:00 PM.

Some frustration with the doctors today. They witnessed her spiking for the first time tonight, and were disturbed by the shaking and the chills. They had been thinking about removing some of the medications to see if she has "drug fever" (an adverse reaction to a drug), but after seeing her tonight probably won't. The frustration is that they seem to be making decisions based on what they observe in their five minutes in the room each day, rather than what the parents and nurses tell them happens every day. The way her fevers happen shouldn't have been a surprise to them; it's been happening like that for days. Also, I didn't go in to work today in order to meet with Dr. Loh, but she didn't really have any information for us, referring all specific questions to the transplant team.

Still no leading candidate as the cause of her fever. It doesn't present like a fungus or a virus, the infectious disease team doesn't think it's the RSV, and if it's bacteria, the question is why the antibiotics haven't taken care of it. A sinus infection is still a possibility; it can apparently be difficult to get the antibodies into the sinus cavity. Given that her clinical situation is improving, they would probably just let it go and expect her to clear it on her own. The problem is that she has a bone marrow transplant scheduled for March 17, and she needs to be really clean going into it. They won't do the transplant if she has an active infection. So they've scheduled an MRI tomorrow to get a closer look at her sinuses to rule out anything like a fungus that might still be a problem a month from now.

The other possibility, which no one likes to think about, is that the fevers are related to her leukemia. Leukemia does sometimes present with fevers, and it's true that Mina Brigitta did have fevers both times she was diagnosed. However, she also had respitory infections both times, and there is no evidence of leukemic cells in her peripheral blood. They've scheduled a bone marrow biopsy on Tuesday, so we'll get the word Tuesday or Wednesday whether she's back in remission or not.

A turn for the worse

We thought Mina Brigitta had turned a corner yesterday, but it seems to have been for the worse. She pretty much slept all day today. She continues to have fevers, although she hasn't seemed quite as uncomfortable as the last few days, and she's not throwing up as much. She did actually sleep straight through the night for the first time in a while, which allowed me to catch up a bit on my own sleep. But she just hasn't had any energy at all today, which is kind of getting us down after we were so hopeful yesterday.

The doctors are still baffled, so they tried to schedule another CT scan today. She couldn't eat or drink anything all day because they would have to sedate her to make her hold still for the scan. Unfortunately, one of the two machines was down today, and they had trouble scheduling either an anesthesiologist or a nurse that could administer a lighter sedative, and they told us at 7 pm they were giving up for the day. So I was finally able to give her a few drinks of juice, and a few minutes later the resident came in and said they could take her in 10 minutes. Of course she couldn't go because of the juice I'd given her. Grrr! They talked about it for awhile outside the room, and I think what happened is nurse Amber shamed them into scheduling it for tonight at 1 am. So another tough night for Dad, but it'll be worth it not to have to go through this again tomorrow, and to have the scan results first thing in the morning.

What we're hoping is that the scan shows no change in her lungs , or maybe even an improvement, since her last scan on Friday. If they don't find anything at all, it may indicate that she has a virus, which her recovering white cells would hopefully be able to clear in a matter of days, or perhaps that the medications themselves are causing the fevers. If they do find a locus of infection, they would probably have to take a sample of it, wherever it is, to find out why it' s not responding to the drugs she's already on and, hopefully, to find a drug that it does respond to.

We did get a bit of good news today. Dr. Loh called to say they found a donor with a 6/6 HLA match who can be ready by March 17 (For more information about HLA typing, look here http://www.bmtnews.org/bmt/bmt.book/chapter.4.html#p34). She's coming by to meet with us tomorrow so I'll post more then, but it's great news that there's a matched donor out there, and that he (it's a man!) can be ready so quickly.

Stepping back for a moment...

I get so wrapped up in Mina Brigitta's immediate medical condition I sometimes forget about some of the other significant things that happen during the day. Keri and I have always been overwhelmed and incredibly grateful for all of the support we've received, from cards and letters to prayers, thoughts, wishes, meals, all of it. We feel tremendously blessed. A few days ago Mina Brigitta got a really nice package from Teri's husband's family in Lake Stevens, WA, who've pretty much adopted her as one of their own, with homemade cards and artwork, and even a mobile to hang above Mina Brigitta's bed. Grandma Lyn sent some shiny hearts that hang from shiny streamers, and some artwork by cousin Zane. Yesterday she received a package of artwork from a grade school class taught by a former babysitter that Keri knew from Syracuse. And today she received a wonderful care package from Keri's friend Kristin and her family in Alaska. Kristin knows that Mina loves to pull Kleenex tissues out of the box, so they sent five or six Kleenex boxes with surprises hidden under all of the tissues. She had great fun pulling tissues out of the boxes all day long, and hasn't yet found a surprise. They also sent a video of their beautiful girls singing songs. You can see how easy it is to be overwhelmed with people's generosity, and that's without even mentioning the lovely ice cream spoons from the Sundqvist family in Karlstad, Sweden, and the many other gifts we've received, in addition to the day-to-day support that has helped so much. I don't know how we could ever begin to repay people's generosity. All I can think of to do is to keep saying thank you, from the bottom of our hearts, over and over again.

Another day, another fever

Still no relief from the fevers. Last night she was awake until 11 pm, then woke up again spiking a fever about midnight. She was pretty listless this morning, then spiked another fever around 1 pm. They tried to do another CT scan this afternoon, but the Ativan they gave her to calm her down had kind of the opposite reaction. She got really wired and agitated, and refused to lie still for the scan. The feeling carried over into the room, where it's pretty hard to contain her when she's like that. Tomorrow they're going to sedate her and try the CT scan again.

The good news is that her neutrophil counts are up to 2100, which is now well within the normal range, so she should be more and more able to respond. The doctors keep telling us that she can fight off whatever it is much better than they can. Auntie Teri thought she'd turned a corner when she woke up in a clammy sweat this afternoon. She's feverish again tonight, but only slightly so. Maybe Auntie's on to something...

White counts better, fevers worse

Neutrophil count all the way up to 1100 today, which is actually just inside the normal range. She is still receiving a daily shot to stimulate the production of white cells, and her other counts are climbing more slowly. Still, we'd probably be going home tomorrow if it weren't for the fevers.

Unfortunately, her fevers seem to be getting worse rather than better. She did have a few hours of lucidity in the afternoon, but otherwise has been pretty miserable most of the day (and night). Still no word on the cause; Dr. Loh suspects a fungal infection that hadn't attracted as much of an immune response until her counts came back. It's also possible that all of the medications she's on are contributing to the fevers, so they're considering stopping them one at a time and seeing how she responds. They're officially hoping her fevers are gone on Tuesday, and will probably give her another CT scan if they're not.

Counts way up!

Mina Brigitta's neutrophils are way up today! Yesterday's count was not a mistake after all. She went from 20 on Friday to 170 yesterday to 460 today! Also, her red cells and platelets were stable today, rather than declining. Her white counts can still bounce around over the next few days, but now there's no question that she's making blood again, so it's only a matter of days. The magic number for going home is neutrophils above 500 for three consecutive days.

That is, if she doesn't still have a fever. Her fever spiked to 40.7, or 105.2 last night. She was really burning up. But with Tylenol and cold compresses she actually had an OK day today. She spiked again early evening, but right now is resting very comfortably at 36. The infectious disease specialist spent some time with us today, basically telling us they don't know what's causing the fevers and may not ever find out. Sometimes the scans don't show anything until the white counts come back up, because what shows up is the immune response to the infection rather than the infection itself. They do frequently see fevers in immunosuppressed patients that go away as soon as the counts come back up. We're obviously hoping that's what Mina Brigitta has. I guess we just got lucky last year never having to deal with anything like this. Anyway, it seems like it's really not a moment too soon that her counts are coming up.

Grandma and Grandpa left Saturday. It was very sad to see them go, they were such a help while they were here and they really had some quality time with Mina & Isaac. I can tell she misses them. Luckily, Auntie Teri flew back down today. She always brings some sunshine into our lives. She'll be here until Wednesday. We don't have anyone scheduled after that, but with any luck we'll get to go home over the weekend so will be able to fend for ourselves.

No Improvement

We were hoping the additional antibiotic would take care of the fevers, but that doesn't appear to have happened. Mina Brigitta had a reasonable day today -- not a lot of energy, but was up and playing most of the day. No appetite, though. But her fever spiked above 39 again tonight. The doctors told us today they don't have a lot of tools left. She's already receiving broad spectrum antibiotics and anti-fungals, even though there's no evidence of any bacterial or fungal infection. About the only other thing they can do is pull her Broviac. That would mean more surgeries -- one to take it out, and another to put it back in before her BMT, so we're obviously hoping to avoid that. They also said her condition is acting like a virus. She's still positive for RSV, but there are dozens of other viruses circulating that they don't test for. She's already received an antibody treatment against viruses. There are other anti-virals, but of questionable effectiveness. They're taking some comfort from her CT scan, and from the fact that she isn't having any trouble breathing.

The good news we got today is that her neutrophil count (the white blood cells we're watching most closely) shot up today. It went up so quickly I think it has to be a mistake -- these counts are notoriously inaccurate. I'll want to wait until tomorrow or Monday before doing much celebrating. Still, we're now hopeful that her own immune system will recover over the next several days. She really needs that boost.

Worried again

Mina Brigitta's fevers have returned. Last night she spiked to 38.3, which is right at the borderline of what they officially call a fever. As a result, they scheduled a CT scan today to check for absesses or any sign of a fungal infection. They found that her lungs had some "infiltration" and some other problems, but not enough to affect her breathing too much at this point. The CT scan pretty much confirmed what the chest X-rays have been showing, which is good. The doctors are also taking comfort in how well she's doing otherwise -- she was pretty energetic and playful, despite flirting with a fever all day today.

Then tonight she spiked all the way to 39, which is 102.2. But she was feeling quite chipper again after some Tylenol. They restarted one of the antibioitics that they'd stopped, and it's again taken them awhile to find a therapeutic dose, so hopefully the fevers will subside once that one kicks in. It wouldn't be a very good sign if the fevers continued, since she's now on three major antibiotics plus an antifungal. We'll see what happens over the next few days.

Feeding tube redux

Mina Brigitta threw up her feeding tube again this morning, along with a large volume of formula. After consulting with the nutritionist, we decided to leave it out tonight and tomorrow in hopes of stimulating her appetite. She showed some interest in food today, eating a variety of fruit snacks, but threw it all up again at abou 7:30. We'll see how it goes tomorrow.

We met with Dr. Loh this morning to discuss treatment options. It looks like we're on the road for a BMT, which could happen as soon as March. If a donor can't be mobilized that quickly, Dr. Loh would probably bring us back for another round of chemo, just to make sure the leukemia stays down before the transplant. She's scheduled a bone marrow biopsy for Feb. 22 to see if Mina Brigitta is back in remission. We'll be keeping our fingers crossed.

Feeding tube follies

Mina Brigitta woke up vomiting again this morning. They ramped up the rate of her feeding at about 10:00 last night, but I had noticed she already seemed kind of full around then. Turns out the nutritionist had recommended tapering off the feeding in the afternoon before ramping it back up at night, but the recommendation wasn't followed. She threw up a huge volume this morning as soon as she woke up, and of course her tube came up with it. They left it out all day hoping she would start eating again, but a bowl of Pirate's Booty wasn't quite enought to satisy them. Luckily, putting it back in went very smoothly this time.

Otherwise, everything went just fine today. She had a lot of energy for having a short night, and
Grandma and Grandpa had her up on the floor for half an hour today. Tonight she was wide awake until 11:00.

Quiet day today

Just like we like them. She played with Keri and her Grandma and Grandpa, then took a three and a half hour nap. I was able to spend the entire afternoon in the office. They're still kind of worried about her continued chest congestion, but are happy as long as there are no fevers. Aside from that, she still has the painful diaper rash, and she'll need platelets again tomorrow.

We meet with Dr. Loh, her oncologist, on Thursday to discuss possible non-BMT therapies. Dr. Loh is a big believer in transplants at the best way to attack dormant leukemic stem cells that may be resistant to chemotherapy, but the clinical studies don't seem to bear this out. We're trying to make sure we have all the bases covered so we can make an educated decision after we find out how closely matched the potential donors are.

No fevers, second day in a row

It seems that as soon as the levels of antibiotics got to the level they consider "therapeutic", Mina Brigitta's fevers went away! If they stay away, they may begin to taper off some of the antibiotics soon. That would be good, because not only can they be hard on the kidneys, but they give her a painful diaper rash.

Mina Brigitta had another good day today, awake and alert and playing most of the day. This evening the "mini wish" people came by and gave her three presents: a whiteboard with dry-erase pens, a little magnetic drawing board, and a really fancy touch-screen Elmo game! Mina Brigitta insisted that Grandma and Grandpa spend the rest of the evening drawing pictures of babies.

Superbowl Sunday

Last year I watched the game from the room in the back while Mina Brigitta slept. This year I went out while Keri, Monte and Judy were in the room. Apparently the first half was too dull for Mina Brigitta; that's when she went down for her nap. Otherwise she had a great day, very alert and energetic. They even had her pushing her little stroller around the room. Still not eating, but with her shrunken stomach she was probably kind of full from the NG tube all day. They started off at a very low level and slowly increased it throughout the day.

Unfortunately, either they increased it too fast, or else a coughing spell caused a gag reflex, because she threw up the liquid in her stomach, and the tube, about 10:30 pm. They gave her some anti-nausea medicine and waited until about 12:30 am to try to reinsert the tube. The first two times she threw it back up again, but the third time it stayed down and she promptly fell right back to sleep. Poor thing, hopefully it'll stay down this time.

We barely saw a doctor all weekend. Normally we wouldn't complain, but on Friday they were afraid her lungs were getting worse and were talking about a possible fungal infection, so they ordered a chest X-ray for Saturday morning. The resident finally came around tonight after we complained to the nurse and told us her lungs actually looked better. Which would have been nice to know on Saturday. Thinking about it, I guess there was an Infectious Disease team that looked her over pretty carefully on Saturday and thought she looked great, but it would have been nice to reconnect with the oncologist. Anyway, she had no fevers at all today, so we're crossing our fingers she's turned a corner.

Good day, except for the fevers

Mina Brigitta had a good, active day today. Was awake all day long after getting up late. Friday's blood transfusion probably gave her some energy, and she received Benedryl and Tylenol all day because of the anti-fungal medicine and then a platelet transfusion. Nurse Amber even had her out of the bed and walking around the floor! She was a little unsteady, but it's definitely good for her.

Still not much appetite, though, so they went ahead with the NG tube. This is a small tube that they inserted through her nose down into her stomach, through which she gets a constant drip of basically baby formula. Placing it was a very traumatic experience for everyone in the room, but she doesn't seem to notice it now. Hopefully she'll be able to keep the formula, and the tube, down.

The other news is they discovered the doses of antibiotics she's been receiving were too small. We're all hoping increasing the doses will make her fevers go away.

Meeting with the BMT Doctor

A doctor from the Bone Marrow Transplant team came to meet with us today. It seems they've identified 16 people on the bone marrow registry with characteristics that may indicate a match. There's a reasonable chance that one of them will be a good enough match to go ahead with a transplant. Mina Brigitta will be eligible for an emergency activation, so they would hope to be able to mobilize the donor within six weeks.

The problem with an unrelated donor is a higher risk of "graft vs. host disease (GVHD)", where the new immune system attacks the host's body. This can either be temporary or chronic, and is fatal in 10-20% of cases. About 50% of patients with unrelated donors suffer some form of GVHD, so this was quite a worry for Keri and me. Also, there are lots of other potential complications from a BMT. However, the doctor today told us that young children, especially under two, tend to suffer many fewer complications from GVHD. Also, some GVHD is desirable because the grafted cells also kill leukemia cells. So there are some advantages to having an unrelated donor, particularly for very malignant forms of cancer like AML.

She also told us that "conditioning" regimens involving total body irradiation, which we were very concerned about, were not necessarily better than other regimens involving chemicals, particularly for very young children. Radiation tends to have side effects like stunted growth, delayed mental development, and sterility. These may be acceptable for adults but not really for our girl. So it sounds like they won't be firmly recommending radiation, but will present some alternatives. These will have their own side effects, of course, and we'll have to assess those very carefully.

Overall, the doctor said that assuming that the current round of chemo is successful in re-inducing remission, and assuming a favorable donor is found, Mina Brigitta's odds of long-term survival are around 40%. We had estimated 30% just from a brief review of the literature, so this is an improvement. I think Keri and I both felt better after the meeting.

Mina Brigitta was also feeling better later in the day. She had some more Tylenol around 5 pm, and was alert and playing with nurse Amber during the evening. She ate some more Balance Bar and Cheerios, but they're probably going to go ahead with the feeding tube tomorrow. The fevers are just too much of a setback to her appetite, and she needs the nutrition. The good news is that younger kids don't seem to mind them too much, and they won't interfere with her continuing to eat.

Fevers higher today

Mina Brigitta's fevers have been higher today. She was up to 103 this morning, though was feeling better and eating some Cheerios and Balance Bar after some Tylenol. Since she hasn't responded to antibiotics, and her lungs are beginning to sound worse again, the doctors are now worried about a fungus infection, and have started anti-fungal medications. With three weeks or so remaining until her counts start to come back up, we're really really hoping it's not that.

Good news and bad news

The good news is, Mina Brigitta devoured two bowls of rice and plain yogurt tonight, and appears to be keeping it down. The doctors decided to hold off on the NG feeding tube until tomorrow to see how she's doing. She did have some fevers today, but she was feeling quite chipper after a little Tylenol tonight.

The bad news is that we learned today Isaac is not a match for the bone marrow transplant. There is a very small chance that Keri or I could be a match, but it looks like we'll have to hope for an unrelated donor. We meet with the team tomorrow to discuss the options. The preliminary info we've been given is that there's something like a 50-50 chance that a matched donor will be found. I'll have more info tomorrow after we meet with the team, but at the very least this likely means a delay in the transplant.

Back on the drugs

Mina Brigitta's fevers continue to hover in the 100-101 range. That, combined with some redness at the site where her Broviac catheter exits her chest, convinced the doctors to go ahead with the antibiotics. They also drew blood and urine cultures to check for infections. Hopefully her fevers will go away and nothing will turn up in the cultures. It seems most likely that the fevers are caused by the RSV returning, but they can't afford to guess wrong so they bring out the big guns whenever they feel it's warranted.

Hopefully tomorrow her site will stop bleeding so they can stop with the daily dressing changes. Removing the 6 square inches of tape and cleaning the site with an alcohol-like liquid is probably the most traumatic thing our Mina Brigitta has to go through here.

Not much new on the nutrition front. She had some crackers and Cheerios for lunch. Tonight she had a little bit of soy milk, and even fed herself a few bites of rice. Hopefully tomorrow she'll start to really eat again, because if not she'll probably get a feeding tube on Friday. Trust me, girl, you don't want that!

Mom and Dad arrived today, which helps immensely. We took Isaac this afternoon and went and stuffed ourselves with Indian food, while Keri got some quality time at the hospital with Mina Brigitta. The rest of this week and next I'll be trying to catch up as best I can at work.

Fevers returning?

Mina Brigitta has been hovering between about 37.2 and 38 degrees all day (roughly between 99 and 100.5), which is just below where they take action. If she gets to 38 for an hour or 38.3 once, they'll send blood to the lab for culturing and bring in the massive antibiotics. She was 38 at about 9 PM, but just now was back down to 37.4. Also, her nose continues to run and her cough has changed to where it sounds like her cold is coming rather than going. They say RSV tends to come and go, and the docs don't seem worried. I just hope that's all it is, and I worry that if it comes again, how will it ever go when she has so few white blood cells left?

The good news is, she ate some Saltines and Cheerios tonight, her first solid food since last Thursday. Also, Grandma and Grandpa are coming tomorrow! They're staying for ten days, which will really help.