Transplant Day!

Logging in early to give an update on the transplant. The actual infusion started at about 9:30, an hour late. Because the cells came in a very large volume of blood, the transfusion will take two hours total instead of the normal half an hour or so. Even at that rate, they're having to give her a diuretic to make sure she doesn't retain too much fluid.

So far so good, no reactions yet. Mina Brigitta was asleep for the first part of it, due to a rough night, an early morning, and a dose of Benadryl. She's awake now and pretty mellow, which is good. We don't want her messing with her lines while the new cells are going in.

We were floored to discover that the donor had sent a letter along with his cells. This is very unusual; the bone marrow nurse said she'd only heard of that once before. We are all, including the staff, profoundly touched by his gesture. This is what he said:

It is of no consequence that we do not know each others' names, nationalities, ethnicities or religious beliefs. What is important is that your daughter has this disease, and her and I are a match. You were fortunate enough to have a daughter, and I was fortunate enough to place my name on the National Bone Marrow Donor list. It may seem like a cliche, but I believe things happen for a reason. I think I was meant to put my name on the list of donors, and you are destined to see your daughter grow up and enjoy her life.

There is a poem by Jack London that I am fond of:

I would rather be ashes than dust!
I would rather that my spark should burn out in a brilliant blaze
than it should be stifled by dryrot
I would rather be a superb meteor, every atom of me in magnificent glow,
than a sleepy and permanent planet.
The proper function of man is to live, not to exist.
I shall not waste my days in trying to prolong them.
I shall use my time.

Here is to your daughter growing up and having the brightest spark with a magnificent glow (although I am sure she already does). I feel privileged to be of help, and I wish you the very best. And because I do not know the appropriate way to wish you peace I decided to let you choose the one that is suitable to you.

Abenaki OLAKAMIGENOKA
Afrikaans VREDE
Akan ASOMDWOE

etc.
etc.
etc.

Zulu UKUTHULA (UXOLO?)

Included on his list is a language called Wintu, in which the word for peace is "Mina". When I looked up Wintu on the web, it turns out that it is the language of a native tribe from the Mt. Shasta area in northern California.

Day -1

Mina Brigitta had a fine day today. She was again a bit cranky and disoriented after coming back from radiation therapy, but otherwise ate, played and did just fine. When I got back to the hospital, she had her shoes on and was walking around the room. She got her lines totally twisted around; Amber had to unhook her and untwist everything to keep the IV pole from beeping constantly. The nurses say it takes a week or so for the kids to feel the full effects from the radiation therapy, so we have that to look forward to.

Big day tomorrow. The transplant will occur around 8:30 AM. The donor cells are most likely already here in the hospital; they just require some processing from the lab first thing in the morning. She was premedicated today with cyclosporin, an anti-rejection drug. She'll be on that continually for several months or longer, depending on how things go. Tomorrow morning they'll give her some more drugs to prevent an allergic-type reaction, then they'll hang the bag of cells and infuse them into her bloodstream through her IV. The whole thing should take about half an hour. There will be a whole team in here to observe, and they'll take her vital signs every five minutes during the infusion. She'll also wear a monitor for six hours afterwards. The cells will find their own way into her bone marrow, and hopefully will start producing blood within 3-4 weeks.

From Mina Brigitta's perspective, tomorrow will be just another day in the life. She'll get to eat breakfast first thing and won't have to be sedated, so she'll probably feel pretty good. But she won't be leaving the room anymore, so she'll probably be antsy. We'll try to make the most of these days when she's feeling good, because they probably won't last much longer with her counts plummeting.

That surreal feeling I had while at home is still with me. The whole thing is just so overwhelming to me, much more so than the chemotherapy treatments. I've been pretty tired because of late nights, and today at work I drifted off for a few minutes while staring at my computer screen. But I woke up with a start, thinking "My daughter is having a bone marrow transplant tomorrow!" I was wide awake the rest of the day.

On a more practical note, Mina Brigitta is going to be in constant need of blood and platelet transfusions over the next several weeks. There is a national platelet shortage, so we're asking people to consider making a "directed donation" of platelets for Mina Brigitta at UCSF. I've set up a web page with information about donating and a schedule of other directed donors. However, please feel free to donate at your convenience, as we can't predict exactly when she'll need a donation. And if Mina Brigitta doesn't happen to need your donated cells, they may help save the life of another person.

Day -2

Well, so far so good. Mina Brigitta's skin is kind of red and blotchy, which the doctors are saying is probably left over from the ATG. She had another fit this morning after returning from radiation therapy, pointing to the door and saying "Go!" or "Out!". Tonight when I was reading Peter Rabbit to her, she perked up her ears at the part where Mrs. Rabbit goes "out". She kept telling me that Mrs. Rabbit was going "home". I tried to tell her that no, she was going out to the baker to buy a loaf of brown bread and five currant buns, but she was having none of it. She was a bit tired today, but otherwise in a fine mood once she was done with her fit. Tonight she ate some dinner again and was pretty energetic, not going to sleep until after 10:30. I'm actually a bit worried that she's not feeling sicker, but Amber assures me it's normal.

Some people have asked for our new contact info. Here it is:

236 Grattan Street
San Francisco, CA 94117
415-731-1548

Also, Keri's friend Melissa took these really cute pictures of Mina and Isaac last Thursday. She said it was OK to share them. You'll have to create an account with Kodak Gallery in order to view the pictures. It's free to join, but they do ask for an e-mail address.

http://www.kodakgallery.com/ShareLandingSignin.jsp?Uc=162p342h.3visoe5h&Uy=-6q53le&Upost_signin=BrowsePhotos.jsp%3FshowSlide%3Dtrue&Ux=1&UV=859178283435_191047713205

Thanks to everyone for your thoughts and prayers for our Mina Brigitta. It means more to us that I can say. Unfortunately, we won't know for about 10 years whether they'll be successful in helping her avoid long-term complications.

Day -3

Woke up at 6:45 to go down to the radiation therapy room. They brought in a wheelchair that was draped in a white sheet, fixed a white sheet around her IV stand, and put a white sheet over her on my lap while they wheeled us down. She woke up as we were entering the room, pointed to the big particle accelerator and said "Dadda, whoa!" Then they gave her the anasthesia and she went under.

For the therapy, they laid her on a styrofoam pad on the floor, directly underneath a wand that protrudes outward from the accelerator. The radiation comes down in a cone shape from the wand. They positioned her on her back with her knees up and her head to one side, and placed little round shields over part of her lungs. In the afternoon, they put her on her stomach. They'll alternate like that tomorrow and Wednesday as well. When they got her positioned, they took a picture with the accelerator to make sure the radiation was going to cover her entire body. Just the picture gave her something like 5 cGy of radiation, which they had to back out of her dose of 200 cGy.

She seemed fine when she woke up. The biggest problem was that she didn't want to be back in the room. She had a low-grade fit for about 20 minutes, pointing to the door and saying "Go!". We couldn't really blame her. She slept for a couple of hours in the late morning, then had to go back down at 3:00. When the second course was finished, she was finally allowed to eat something, and she surprisingly was interested. But she spent most of the evening just laying on top of either Keri or me. She did spike another fever tonight around 11:00, but didn't throw up so hopefully that's progress.

Day -4

The second and last day of the cyclophosphamide. She gets the H-ATG again tomorrow, but that's it for that one as well. She did better today, no reaction to the ATG at all and no fevers or vomiting until tonight. She did spike a fever and throw up at about midnight, 2 hours after receiving a dose of Zosyn. With so many other things going on right now, it's not a given that the Zosyn is causing her current fever, but it sure looks suspicious. We'll keep a close eye on it.

Tomorrow morning we start radiation therapy. She'll get 200 cGy of radiation therapy twice a day for 3 days, for a total dose of 1200 cGy. It's been suggested that we pick a time when all of the people who care about Mina Brigitta could focus on her and channel their collective energies. Well, she gets radiation at 7 AM and 3 PM for the next three days. The radiation is a critical part of the therapy, because it's supposed to kill off both the remaining cancer cells and Mina Brigitta's bone marrow so that she doesn't reject the transplant. It's also a major cause of the side effects I listed a few days ago, particularly those related to brain function and development. So we do need your thoughts and prayers that the radiation does its job, but doesn't cause any long-term problems.

Day -5

In BMT, they count the days before and after the transplant. We're starting the countdown on Sunday, which is Day -5. Friday, the day of the transplant, will be Day 0. The big milestone is Day 100, by which time she should pretty much be clear of acute, transplant-related issues. Day 100 is August 7. Seems so far away right now.

Mina Brigitta started her conditioning regimen today. She received cyclophosphamide at 9 AM and H-ATG at 11 AM, which is an antibody grown in a horse in Wisconsin that helps to kill white blood cells. ATG is known for causing allergic-type reactions, and it didn't take her long to develop a fever and a rash that looks like bee stings. Then later in the day she became nauseous and threw up multiple times all over Grandma and Keri. The rash is still there, but her fever is gone, she hasn't thrown up in four hours, and she's resting pretty comfortably right now. She finishes up with the cyclophosphamide tomorrow, but she's is due to receive the H-ATG through Thursday, so she'll probably continue to have reactions until then.

Because of the fever, they've started on the antibiotics again. She'll probably stay on them until her counts come back up, which could be a long time. She's receiving Tobramycin and Zosyn again. Zosyn is the one we think made her nauseous when she was receiving it in February. We'll discuss it with the attending physician tomorrow, but the word from the resident is that no other combination gives as broad coverage as the Tobra/Zosyn combo. I suspect she'll be nauseous all week and don't really want to contribute to it, but at the same time recognize that a little nausea is far preferable to a serious infection that could have been prevented. We'll see what Dr. Mathay says tomorrow.

Today was a hard day for everyone. Grandma looked plumb tuckered out from a long day caring for Mina Brigitta. Aunt Karen spent six hours scrubbing the kitchen. She pulled out the fridge and scrubbed the coils, then scrubbed away 30 years of dirt and grease from underneath the stove. The Kaminski girls' reputation precedes them, but Aunt Karen lived up to it and more today. Keri, Rich and I also spent several hours unpacking stuff in the apartment. Even Isaac had a hard day. I think he was kind of upset from all the commotion and change in routine, because he wanted to be held a lot and he took three naps. We did accomplish a lot today, so that feels good. The bathroom and laundry area still need to be scrubbed and the kitchen unpacked, but the living room and bedroom are in pretty good shape. The second bedroom is a total disaster, but that can wait a little longer.

Here we go...

Arrived back in the hospital around noon today. We ushered Mina Brigitta out of the house just as the packing crew arrived at about 9 AM. After a nice walk at the agua park, we stopped back by the house to pick up Momma and head in. She threw a fit when I tried to get her dressed to go out this morning -- still wanted to stay home all day -- but was fine when we got here. Grandma ("momma['s] momma") and Aunt Karen arrived today, so that helped. Keri and I both went out in the afternoon, down to the new flat to clean, and as we were leaving she got a serious look on her face and said "all done", meaning with the hospital, and wanted to come with us. But she got over that quickly, and when I approached the hospital room door, I heard belly laughs instead of screaming. She was pretty amped up most of the evening, before finally falling asleep around 10:00. I'm just happy that she's adjusting so well; I've been a bit worried about that because she's been enjoying being at home so much.

We're back in Room 739, which is the long skinny room we were in twice last year. It's not the biggest room, but it's pretty big, and it has a daybed next to the window. There are a lot of rules for taking care of bone marrow patients: two-minute hibiclens scrub before entering the room, everything that comes in has to be cleansed with alcohol, all of her clothes and soft toys need to be put in a hot dryer for at least 30 minutes, the food tray has to be specially wrapped and can only be left out an hour. We're already in the habit of following most of the rules, so it shouldn't be a major adjustment for us.

She's already received her first medications: Acyclovir to help prevent infection by viruses in the herpes family, and IV immunoglobulin, which is another immune booster. The chemo starts tomorrow, and then the radiation Tuesday. She'll probably be feeling pretty crappy by tomorrow afternoon, and will probably stay that way for a while. They've now set the transplant date for Friday the 29th; apparently the cells will arrive too late on Thursday for all of the processing to be completed.

Last days in Berkeley

Counting down the hours on our life in Berkeley. The packing crew comes at 9 AM on Saturday, and we're planning to have Mina Brigitta ready to head out to the hospital. Our current life is about to end, and we don't know what our new one has in store for us.

The good news is that Mina Brigitta has gotten bigger and stronger. She's gained most of her weight back, and has been running around all over the place. That was our goal for this time at home, and I couldn't be happier with how she's doing. I know it will make a difference when she starts to get sick from the treatment.

Mentally too, she's doing really really well. She's really thrived being at home, to the point that she never wants to go anywhere. She's happiest when she gets to spend the whole day at home, which she did today. She's taken to calling this house "Sissy's home", which makes it hard to think that she won't be coming back here. There will definitely be an adjustment period when she comes back to the new flat, but it'll be a whole new space to explore, so maybe that will be a good thing since she'll probably be immuno-suppressed for quite some time.

Of course, who can blame her for not wanting to go out, when the only place she goes is to doctor's appointments. Yesterday she decided she'd had enough of waiting around for doctors to show up. She couldn't eat breakfast again, because she had to be sedated for her CT scan that was supposed to happen at 11:30. But she had to be seen by the oncologist before that, and he was half an hour late. Then they wanted to do a blood draw, and the CT team was running late, and Mina Brigitta decided to make a break for it. She ran screaming out the door of the outpatient clinic, and had a 45-minute fit before they finally sedated her for the CT scan. I can't say I blame her.

The news from the CT scan is that she still has some lingering issues in her sinuses and her lung from the RSV. The small area of collapsed lung is still there, as is the mucosal thickening in her sinus cavity. Again, they have no reason to suspect a fungal infection, but they'll probably start her on anti-fungal drugs a bit sooner than they might otherwise have. Obviously we'd have preferred a completely clean bill of health, but this doesn't sound like much to worry about.

By the way, I'm totally embarrassed because we have 200 pictures on our digital camera, but thanks to Amber for uploading these photos of Mina Brigitta's 2nd birthday: http://eshare.hpphoto.com/en/home/welcome.asp?JobID=f370f520-c6db-4bc8-8ef5-e2336c2690cf

Happy 2nd Birthday, Mina Brigitta!

What a wonderful day we had today. Kristin and Teri were here, and Amber came at about 1:00. I stayed home from work to be with my family today, and we pretty much just hung out all day long. She opened presents throughout the day and mostly played games with the girls. Mina Brigitta didn't need or want to spend much time with me today, because she was more than entertained with Teri and Kristin, and then Amber. That's a good thing. She had a great time with Kristin while she was here, and it was sad to see her go. I took advantage of the opportunity to spend some quality time alone with my son, which I haven't had much chance to do recently.

We had a leisurely lunch, then played more games in the afternoon, and then Keri and Mina Brigitta drove Kristin to the airport in the late afternoon so Mina would nap, while Teri, Amber and I sat around chit-chatting with Isaac napping on my lap. The phone kept ringing all day long with happy birthday calls. She gets on the phone and says "Hi!", but usually doesn't know what else to say. But when Nicholas was on she said "Kiki der!", and when Kari, Steve and Carmen called she said "Uncle der!". Carmen sang her a couple of songs, and she said "Yay!" after each one.

Amber was set to leave at about 6:30, but her dinner plans were cancelled so she came right back in and stayed for dinner. She regaled us all day with stories of her adventures in New Zealand and Australia; I kind of felt like I was living vicariously through her. I have such clear and meaningful memories of my travels, and I love to hear stories of other people's. Then she read books with Mina until she was just about out. Right when Amber was ready to go, Mina wanted "up with Anta", so Teri put her the rest of the way down.

All in all, a leisurely yet very satisfying and rejuvenating day, just what the doctor ordered. Tomorrow it's back to reality a bit; they're doing a CT scan of Mina Brigitta's sinuses, just to check up on the mucosal thickening that her last scan showed was still lingering from her bout with RSV. That means Mina Brigitta won't be able to eat or drink until after the appointment, which is at 11:30.

We did get some good news today: the results of Thursday's minimal residual disease test came back and showed that the latest round of chemo knocked it down from 0.7% of white blood cells in the bone marrow to 0.03%. This is much better than I had hoped for, and as far as I can tell is a pretty good number to have going into the transplant.

Gearing Up

Logging in from a Best Western in Bandon, Oregon tonight. I'm on a business trip, my first since December. It's kind of tough timing for a trip, but it couldn't really be helped. I was first planning to send an officemate, then to attend by phone, but it happened to work out that Auntie Teri and Keri's friend Kristin arrived Saturday, so they're well-covered at home. Since this is a kickoff meeting for a project that I'm managing, I'm happy to be able to to be there in person. Still, it was very difficult to leave today, more difficult than I expected. This is the first night I've been away from her since her relapse. She was helping me pack today, and when I arrived at the hotel, I discovered a fluffy yellow duck in my bag.

Mina Brigitta's 2nd birthday is on Tuesday. Anta and Kristin will be here, and Amber is arriving home from her Australia/New Zealand trip Monday so she'll be there as well assuming she's healthy. There won't be a lot of people there, but I suspect the atmosphere will be more than festive enough to make up for the lack of numbers. Kristin flew down from Alaska last year and helped make Mina Brigitta's first birthday really special, so it's perfect that she was able to return for a command performance.

Less than a week now until we go back into the hospital to begin the transplant process. Maybe I'm just tired, and maybe it's because of the trip and her birthday coming up, but everything has seemed kind of surreal the last couple of days. Every moment is weighted with a poignancy that can be almost overwhelming. The feeling is probably exacerbated by the fact that Mina Brigitta is so totally oblivious. She has no idea what she's about to go through, nor what she's already endured. She's just living life day by day, doing all the things that toddlers do. You can almost lose yourself in that moment with her, engaging in a game of "baby poopoo" (changing the doll's diapers) or reading a book in her favorite chair, until something reminds you that this is all temporary, and that next week at this time they'll start tearing down her immune system. Mina Brigitta and I were alone in the house today, and I put on some meaningful but kind of melancholy music and found myself becoming a bit emotional as I watched her playing contentedly by herself on our living room floor. Mina Brigitta sensed that right away and wanted "up with dadda". She clung onto me and showed me that it was OK, but she needed me to be strong for her.

Then tonight as I was driving from Coos Bay to Bandon, there was a lovely Irish music show on NPR. The theme was spring, and there were several songs featuring St. Bridget, who the DJ explained is associated with the season in Ireland and with rebirth and renewal. Bridget is the Irish version of Brigitta, so I found that to be a pleasant and hopeful metaphor to take with me into next week.

Bone marrow biopsy results

Mina Brigitta had her official, pre-transplant bone marrow biopsy today. Good news, she's still in remission! They're sending the sample off to Seattle for another minimal residual disease test, but we probably won't get results back before next week. Hopefully this last round of chemo knocked her back down a bit. They also, finally, did a biopsy of the hemangioma on her left shoulder to make sure it's not a chloroma, or collection of leukemia cells. They've look at that thing a dozen times. Last year they did an ultrasound and then this February they did an MRI. Both times it looked fine, but they couldn't rule out a chloroma. Since the biopsy didn't turn up any cancer cells, I guess we can now rest assured it's just a hemangioma.

She was very good girl today through the whole ordeal, despite having nothing to eat or drink until after waking up from her anasthesia. She had to go to a dermatologist at 10 to look at the hemangioma, then fell asleep for 45 minutes on the way to the clinic, and then her noon procedure turned into a 2 PM procedure again. Then she had a 3 PM appointment with Dr. Loh, and then the workers were on strike at the hospital cafeteria, so Keri drove her home before giving her a proper meal. She made up for it with a big dinner of tortellini, then had a 9 PM snack of bread, cheese and avocado. She ate the avocado with a spoon, and was dipping everything in a bowl of olive oil.

Tomorrow we go to meet with the radiation therapists. Not really looking forward to that. We've had trouble making the decision to do the radiation. Keri and I both are sick about it, since many of the effects I listed yesterday are due to the radiation therapy. But after digesting all the information we could, the evidence seems to indicate the total body irradation may be somewhat better than the alternative, a drug called busulfan, at preventing relapse. The side effects of radiation are horrible, but the effects of busulfan are pretty bad too, and they don't have as much data about the long-term effects. It was a very hard decision, and we had to go against our instinct a little bit, but I think it's the right one.

Official pre-BMT Family Conference

Keri and I met with Dr. Cowan and a nurse from the BMT team today for our official pre-admission family conference. The meeting was tape recorded for our benefit, and concluded with us signing consent forms for the treatment, various research needs, and the radiation therapy. We had met several times with Dr. Cowan in the past, so there was little new information, but even still it was a pretty sobering meeting. It's been so nice having a semblance of a normal family life, but our two weeks is almost half over and the 23rd will come fast. Today was a reminder of how much our lives are going to change.

Here's a high-level summary of the various risks, at least as I remember the conversation today:

Survival

• Mortality from treatment-related complications (infection, organ damage, etc.): about 15%, nearly all in the first 100 days
• Mortality from graft vs. host disease: about 15%
• Mortality from relapsed leukemia: 25-30%, mostly within the first two years
• Overall survival: about 40-45%

Common complications:

• Graft failure (new bone marrow doesn't grow, requiring a fast backup plan): 4%
• Primary ovarian failure: 99%. This means that Mina Brigitta will have to receive estrogen treatments to induce puberty, stay on a normal growth pattern, and maintain bone density as an adult
• Graft vs. host disease (new immune system attacks the host): about 50%. Can be acute, i.e., comes on intensely but then goes away, or chronic, i.e., lasts for a long time. Can occur in the skin, eyes, organs, etc.
• Decreased learning capacity: about 33%
• Tooth and jaw problems: about 20%
• Cataracts: about 20%, usually within five years
• Veno-occlusive disease (liver): about 20%
• Secondary malignancies: 2-5%, increasing over time

Other possible complications

• Swelling of the brain
• Swelling around the heart
• Damage to the kidneys and bladder
• Endocrine problems, including lack of growth hormone

The hospitalization will hopefully be around six weeks, but could be much longer depending on how many of these things manifest themselves. They try to get us out as early as possible, but we won't be able to just come home and relax. We'll be giving meds at least every eight hours, will probably have a home IV going, and will have to bring her back in for transfusions probably every few days. [Note: I'm planning to set up a permanent URL for information for potential blood donors. Look for that in the next few days.] She'll be immuno-suppressed for a long time, at least six months.

There was much much more, of course. I'll post in more detail about the schedule another time as well. I can also answer any questions people might have. We read the responses every day, usually several times a day, so don't be shy about posting questions. With all of that, really the bottom line is that there's just no telling how things will go. Dr. Loh doesn't work BMT because she doesn't like the unpredictability of it; now I understand why. She'll still be Mina Brigitta's primary oncologist, but Dr. Cowan will oversee the transplant process.

As for the star of the show, she's still trucking along. She tipped the scales at 14.2 kilos today, which is a full kilo more than the last time she was weighed, i.e., she's gained two pounds in the last week. The lack of sleep is catching up to her; she's had major meltdowns the last two afternoons when she's been late going down for her nap. Tonight she was out at 9:15, which is the earliest since we've been home. The good news is, she's been sleeping in her crib again the last few nights. We all sleep better when we're not so squished in there.

She's also really cute how she's bonded to the people that have come to visit. She's been talking about "Eedie" since she left on Sunday. The other morning she and I ended up sleeping on the couch, and when she woke up and saw where we were sleeping she said "Anta!". And then "Eedie!". Today when she and I were having her blood drawn and Keri and Isaac were in the waiting room, she said, "Mama der!", pointing to the door. Then she said "Bubba der. Eedie der." I said no, Zeedie went bye-bye, and she said "Eedie house. Eedie babies," because we had told her that Zeedie had to go back to her house to see her babies.

All's quiet

Not much Mina Brigitta news to report. She's thriving at home, eating really well, running around all excited. It's been really really fun to see. Tonight she ate dinner for over an hour, and her little stomach was sticking way out of her pajamas when she got done. Sometimes I look at her and am just amazed at how well she seems, despite all she's been through. She'll have a developmental test done before the transplant as a baseline assessment, and I'll be very interested in the results. As far as I can tell, she seems to be developing totally normally, and is maybe even ahead in some areas.

In non-Mina news, Grandma Callard passed away this morning. Her condition was slowly deteriorating since the stroke she suffered a couple weeks ago, but there was nothing to indicate this was imminent. Mom seems to be holding up well. I know it's a relief in a lot of ways given her quality of life, but it still can't be easy. She hadn't been the Grandma Callard that I remember for many years now, but I'll still miss her.

Rough day back up on the hill

Mina Brigitta had to be at UCSF for a pulmonary function test (lungs) today. That meant another day without breakfast for everyone in the house. Keri said she woke up pretty woozy for the anesthesia, and then proceeded to poop all over herself and her mother. Keri spent the rest of the day in UCSF scrubs. Then she had to go and get her Broviac site dressing changed, and they discovered that her Broviac is leaking blood where the repair was made. So they had to repair it again, but the gang had to hang out for an hour and a half while they waited for the part to arrive. Meanwhile, the nurse doing the dressing change was alarmed that the Broviac had come out a little ways due to the constant tugging, and wanted to have a surgeon look at it to see if it ought to be replaced before the transplant. The surgeon said it looked fine, but Dr. Loh will look at it on Tuesday and make a final call then. Would be nice to be able to avoid surgery, but more important is that the line function well over the next few months.

So they didn't end up getting back to the house until nearly 7:00. But she and Isaac both behaved very well throughout the day. Zeedie had Isaac out and about much of the day, and was talking about how he charmed people. She even took pictures of a couple of the people he met. He's such a good boy. Mina Brigitta is doing fabulously. She's running around reacquianting herself with the house, and eating like a horse. She looks like she's beginning to gain some weight back. Dr. Loh said to do whatever we can to fatten her up before the transplant, so we're considering that a challenge.

Big day today!

Wow, lots of news today. First, Mina Brigitta's total white blood count went from 800 to 2300, and her neutrophils from 280 to 1200. So they sprung us loose! The girls left the hospital at about 7:00, went and got takeout Indian food, and then we all drove home! Mina Brigitta is now sleeping comfortably in the bed with Mama and Bubba, and I'm writing this from the home computer in the office. It's soooo nice to be home...

This morning after I got the news, I asked Mina Brigitta if she wanted to go home. She kept saying "No!" Or more like "Noo-oooh." I don't think she believed it. I was a little sad at first, but really, she'll be spending a lot of time in the hospital over the next several months, and I'm just glad she's comfortable and secure there. But Keri says that she didn't want to go back to the room when they were out today, and by the time they left the hospital she was good and ready. She kept saying "Sissy, yome!" all the way home, and she was running around like a chicken with its head cut off once we got here.

I really feel like she's made a ton of progress over the last few weeks, high-dose chemo or no. Physically and mentally, she seems so much stronger, and she's doing things now that she wasn't doing when we were home just a couple weeks ago. She's been eating like a horse the last few days too. It feels like she's finally fully recovered from the RSV and first round of chemo. We'll just try to keep that going for the next two weeks, to try to fatten her up and get her in as good physical condition as possible going into the transplant.

The other big news is that we signed a lease on a flat back in our old neighborhood, and we're going to try to move before the 23rd. We were sort of missing the city anyway, but it was the daily drive from Berkeley and search for parking that was making Keri miserable. We hadn't really been looking at places, but we came across a two-bedroom flat that met most of our requirements. It's on the second floor and has central heating, which will help keep it dry and prevent the molds that can cause problems for immuno-suppressed people. It also has a washer and dryer in the unit, and is nearly the same size as the house we're in now, though with a more challenging layout. Best of all, it's around the corner from our old apartment, a five-minute walk from UCSF. The only bad news is that it doesn't have parking, but that's a secondary concern at the moment. It's kind of bittersweet because we like the house we're in, and we really like our landlords. But with all the time we'll be spending at UCSF over the next several months, I think this is a good move for us.

On the road to recovery

Mina Brigitta's neutrophil count was 280 today, after being 50 yesterday. The criterion for sending us home is 500 for three consecutive days, so it's looking possible that we might be home for the weekend. Monday or Tuesday at the latest. That would give us a solid two weeks at home before we go back for the transplant. They're also trying to schedule the last of her baseline tests (pulmonary function, another sinus MRI) before we leave the hospital, so Keri won't have to be up here every day this time. We still haven't got the final word on the schedule, but everything is proceeding as if the 28th date is solid. That means we would come in on the 23rd. It's such a relief that she's recovering her counts. It would have been really bad to get a fungal infection or something that would linger. As it is, she does have a cough and runny nose. Whatever she has doesn't seem to be very fast-moving, but she really needs to clear it by the 23rd.

Mina is still digesting her weekend with the family. She understands that "Anta Tutu house", but when I asked her who was coming to see her today, she still said "Antaaaah!" and when I said no, "Tutuuuuh!" She seemed to hit it off very well with Zeedie today, however. She's definitely still recovering physically; she was a tired girl today after going to bed at 11 last night. But tonight she was up until 10 again.

This morning I put on a new Bob Dylan CD that Keri bought me. It's a concert CD that's have accoustic and half electric. She seemed to like it, putting her hand to her ear and smiling when he played the harmonica. So I told her it was "Bob", and she repeated "Bob!". Then I showed her pictures from the jewel case, and she talked about "Bob" all day! We'd ask her if she wanted to hear "Bob", and she'd say "Yeah, Bob!" or "See, Bob!" to see the pictures. It was interesting, though; she looked kind of alarmed when I put on the second CD, which is all electric. Not unlike how his fans reacted 40 years ago, I suppose.

Counts beginning to move!

Mina Brigitta's blood counts showed their first sign of recovery today. After weeks of counts between 0 and 10 million neutrophils per liter, today she was at 50 million! Also, her platelets only dropped by 4 million, instead of the usual 10-20 million. I'm always suspicious of these numbers because they can bounce around so much, but this would put us on track to be home in a week or so.

Mina Brigitta is one tired girl tonight, and this time not from lack of blood. Her uncle and cousins wore her out. She'll need a day just to recover. Their visit was really good for her. After they left she would talk and talk. Tonight they left a little after nine, and she didn't sleep until 11:00. Teri and Brent and the kids are now on their way to southern California to stay with Tutu and Richard, and Kendra flies home. Kendra was such a big help while she was here, and it sounds like she enjoyed herself, even though being at the hospital is exhausting. We promised she can come spend Spring Break with us next year when we're not in the hospital. Keri's friend Zeedie arrives tomorrow from Anacortes, and will stay for a few days. It will be nice for them to catch up.

Roomful 'o people

Well, the whole gang descended on the hospital room today: Toni and Richard, Kendra, Teri, Brent, Nicholas and Kennedy. Not to mention Keri, Isaac and myself. Mina Brigitta had only a short nap after coming back from the playroom, and then appeared to wake up from a nightmare, which has been happening more and more. She's probably dreaming about being woken up for eyedrops...

Anyway, she was a bit out of sorts after waking up, and overwhelmed with all the people around. But she definitely enjoyed herself. She talked for a long time after everyone left. She loves the talking games where you go through all the people's names. Tonight she kept saying "Nicky yome," meaning that cousin Nicholas is going home to our house. Then she would go through the list: "Anta yome. Uncle yome. Tutu yome." She was very pleased that they all had been here, but I think was happy that things were quiet again.

Counts still dropping

Mina Brigitta's blood counts are still dropping, so they went ahead and transfused her for both red blood and platelets today. We had hoped maybe her counts were starting to improve, but it was probably a bit soon. Maybe we'll see some signs over the weekend, but more likely it'll be next week. She had a noticeable improvement in her energy level after receiving the red blood; maybe low blood counts has been the cause of her general crankiness this week. Of course, the new energy could have been due to the 4 1/2 hour nap she took this afternoon. They give her Benedryl to prevent an allergic reaction to the transfusion, which sometimes puts her to sleep (and other times makes her totally wired). After waking up from her nap at 5:30, I couldn't get her to sleep until 11:30. She was in a fine mood, just not sleepy.

Keri' s stepmother Toni ("Tutu") and her husband Richard arrived in town today. They'll be here until Sunday. Teri and Brent and the kids will arrive at some point tomorrow. I told Mina Brigitta tonight that Anta was coming and her whole face lit up. She kept saying "Anta! Anta!"