Day +183: Six-month anniversary

Six months to the day from Mina Brigitta's transplant. It's been a long, long road, but it's still hard to believe it's been six months. I suppose this ought to be a time of reflection, but I don't really feel that way. I think I'm still too busy living in the here and now. Things have been going very well, better than we could have hoped, and for that I can only be thankful. But Mina Brigitta still has such a long road ahead of her. Six months. That's a nice landmark. Mina Brigitta is recovering very well from the transplant and the related complications. I may start to relax a bit when it's been four years and six months. That's probably about when we'll start to worry less about her leukemia, and more about the possible late effects from all of her treatment.

We're still waiting for the results of the tests they started last week. The big one is the engraftment study, where they determine how much of her blood carries donor DNA vs. her own DNA. They do them every two months at first, so this will be her third. The first two both showed 100% donor cells. If this one shows less than 100%, that could mean impending relapse. We don't want her own cells to grow back, because chances are some of them would be cancerous. The other tests we're waiting on are T-cell and B-cell lymphocyte function. This will tell us how well her immune system is performing. If those tests come back with good numbers, they may start to lift some of her restrictions. They're not really expecting that because she's still on strong immuno-suppressive drugs because of her history with graft vs. host disease. But her lymphocyte numbers have jumped the last few weeks, and they think maybe that's a good sign. Hopefully we'll get some results back early next week.

Mina Brigitta is very excited about Halloween. There are lots of decorations around, which is really fun for her. Her favorites are the spider webs. There is a street near ours that hosts a huge block party every Halloween. We went two years ago when we lived in the apartment, and it was really quite something. Mina Brigitta had a great time last year as well. She walked around for a month afterwards saying "Tick-TEE! Tick-TEE!" We still haven't quite figured out how we're going to dress her up. Isaac is wearing a bumblebee costume, so we're thinking of trying to dress Mina as a flower. She likes the idea too, but Keri and I aren't exactly the most creative types.

My parents are coming Monday too, so that should be a lot of fun. They haven't seen Mina Brigitta since she was in the hospital. She's excited that they're coming, but she keeps asking whether they're coming here or to the pole house.

Day +178: big news!

No, not about Mina Brigitta. There's really no news at all about Mina Brigitta. She's pretty much in the same place she's been for several weeks now: cute, happy, energetic, and going to bed too late. We were a bit worried toward the end of last week because she'd had some not-quite-diarrhea and didn't seem to be eating quite as well. But that seems to have resolved itself so we can probably put that worry aside for now. She can go hours without eating anything, but then just when you start to get worried, she asks for "num-nums". Our next task is to try to get her eating healthier foods. Today she helped Keri make vegetarian lasagne. Sounds like it was pretty much an all-day project, but she had a lot of fun doing it. And she ate a reasonable amount of it. She noticed for the first time that broccoli looks like a tree. She was saying "Sissy eat tee" as she munched down the broccoli crowns.

The big news is that Isaac is walking! He took his first steps by himself on Saturday morning. We'd had him walk between Keri and me a few times, and he was taking several steps. But then Saturday morning I set him down on his feet in the hallway, and off he went! He took about 10 steps, then stopped and gently sat down. He still prefers to crawl, or better yet, have someone hold his hand. But that's probably just as well, given how many things there are to bonk his head on. The other fun thing he's doing is starting to climb. Yesterday I came into the kitchen to find him standing on the little kid chair bending over and leaning on the little table. We're going to need to start watching him more carefully.

We're also trying to figure out how to get Isaac enough nourishment. Our pediatrician told Keri it gets progressively harder to wean kids after 15 months, so she's trying to meet that target. The problem is, he's a picker eater when it comes to solid food. I think part of the problem is that he definitely has some molars coming in. I finally got him to eat oatmeal in the morning by giving him the bowl and letting him feed himself. He makes a total mess of it, but he eats it. Hopefully this phase will get over quickly, because he's been waking up a lot at night crying. Just what we need, more causes of sleep deprivation!

Day +173: another positive clinic appointment

Mina Brigitta spent the morning at the clinic for her bi-weekly appointment. All the news was good! She gained weight again, another pound or so. She's now up to 14.2 kg (31 lbs), which is close to what she was when she checked in to the hospital on April 23 for her transplant. Also, she gained another cm in height. She's up to 92 cm (36.2 in.) after being at 91 the last two times and 89 before that. Dr. Cowan says it's common for them to start growing again after they get off the steriods. Dr. Cowan thought the rash on her neck and legs was better, so he's dropping the cyclosporine by another .05 ml, down to .15 ml three times daily. She was on .40 ml when she came home from the hospital.

The other good news is that her blood counts are looking good, much better than last time. Her lymphocyte levels really jumped up, which they're hoping means that her B-cell and T-cell functions are recovering. They took blood today to test for that; we should know the results by the end of next week. Dr. Cowan again cautions that the test may not show anything yet just because of the immuno-suppressing drugs she's on (cyclosporine and cellsept). But if they do, we might be able to start doing more stuff with her.

They're also going to conduct another engraftment study, where they test to see if her blood cells show her DNA of the donors. The last two tests have been 100% donor, so any result other than that would really put us on edge for relapse. These tests seem to take a week too, so we'll all be nervous until we get that result back.

Mina Brigitta has been tired this week. We haven't had much luck getting her to bed before 9:30 lately, so that probably has something to do with it. She gets cranky in the evening and needs to cry it off. Tonight she was being whiny and kind of stinky to her brother, then she screamed when I made her stop. So I asked her if she needed to go into her room and have a cry, and she said "Yeah!". So she went into her room and came back in a few minutes feeling better. Then she sat down and ate a huge dinner of turkey leg that Kaaren, Isaac's babysitter, had given us. Maybe it was all the melatonin, but tonight I put her into bed by herself about 9:00 and she went right to sleep.

The other day on our walk, we passed a house that had had an artist carve a statue of an angel from an old Monterry cypress tree that had to be removed. Mina Brigitta really thought the angel was something. She kept asking to see another one, and she had to show her Momma when she got home how the angel was posed (standing on one leg with one wing straight up in the air). A few minutes later we saw the first star of the night, so I told her to make a wish. She didn't really know what a wish was, so I told her to think of something she really really wanted to have. She said, "Wings! Like angel. For fly away!" It was a cute wish, but we didn't really care for the imagery, so Keri asked her if she wouldn't want to fly to Momma instead. She said yes, that's what she'd rather do, so now she's talking about "wings for fly to Momma."

October 11-14: Pulmonary function test

Mina Brigitta had a rough day today. She had to get up early and wasn't allowed any breakfast because she had a pulmonary function test scheduled at 9:00. For the test, they give her some light anasthesia to make her go to sleep, then put her in a glass box and pump her lungs full of air. She had a baseline test done before the transplant. This test was to determine if either the radiation or the GVHD had caused any lung damage. Keri said Mina Brigitta took her "sleepy juice" like a champ, but was kind of loopy all day. She slept all morning at the hospital, came home and had lunch, then slept all afternoon. She fell down three times and bonked her head. I watched her lean over a bit too far from her dinner chair and fall onto her head on the wood floor. It's a bit scary. We were happy when she wanted to go to bed early, and hope she'll be her normal self in the morning.

When the test was all over, Keri called and asked me if I'd explained to her that they were testing her lungs, because when they got there Mina Brigitta started breathing loudly in and out. I hadn't. We figure she must have remembered that test from before.

The news from the test was great! She's showing no signs of damage, in fact her pulmonary function was better than last spring, which isn't too surprising because of the respiratory syncytial virus she had last winter. They even said her pulmonary function was better than average!

The other good news we got this week was that her cortisone test came back good, so they took her off the steriods completely. This is the first drug they've dropped, so it's kind of a big milestone. We'll need to watch her very carefully, and it's still worrisome that this rash on her neck isn't going away. But it doesn't seem to be worse either, despite dropping the steroids and reducing her cyclosporine dose.

I did have a moment that sent a chill down my spine. Mina Brigitta has had a hemangioma on her back since she was about three months old. They scanned it during her initial treatment and didn't think it looked worrisome, then did a biopsy before her transplant which came up negative for cancer cells. It went down each time during chemo, which I guess is common, but then grew back when the chemo was done. I hadn't thought about it for months, because it seemed to have completely disappeared with the radiation. The other day I felt it again. I'm sure it's nothing, just a sign that time has passed and her body is recovering from the treatment. But it was a sobering moment nonetheless, because it brought some of the realities of her current situation back close to the surface.

October 6-10: just us again

Getting harder to think of punchy phrases for the titles. Things are going along. Mina Brigitta and Lars Isaac had a great time with Grandma, and we were all sad to see her go on Saturday. She loves having visitors. As Grandma was getting ready to go, Mina kept saying "Anta coming in a week!" It's hard to tell her that people can't always come down and see her as often as she'd like them to. Plus, the doctors said that with cold and flu season approaching, it would probably be best if Mina Brigitta didn't go back to the playground for a while. So her world just got a little smaller again. She did get to see Amber today, and that always helps. Keri says she always comes back with a swing in her step and an extra boost of confidence.

The rash on her neck is not really going away, and she now has some bumps on the back of her left calf, so Keri will take her back to the clinic on Wednesday, even though she doesn't have an appointment. I would like her to be seen by the dermatologist as well. Seems pretty likely at this point that she has some mild, chronic GVHD. This is not uncommon and would not be unexpected, but it could potentially be very serious so we had hoped to avoid it. On the other hand, they always say that a little GVHD helps with the leukemia, so it's not necessarily a bad thing if it keeps doing what it's doing now.

Mina Brigitta's latest phrase is "make Sissy happy!" She first said it to me when I was spinning her around inside the house. She said "Dis make Sissy happy!" Then this weekend we took her back to the carousel, and all the way down there she kept saying "Wide-a-wide the hoe-sie make Sissy happy!" This time she rode on the bench by herself, and then sat with me on the doggie. She's also started asking questions like "Where are we?" and "Where going?" So we've started talking about San Francisco, and streetnames in our neighborhood so she can start to orient herself in the world. She still talks a lot about the pole house. Her latest thing is to take her baby to the pole house. This morning we had to take Waah Baby there for an X-ray because she hurt her foot. I asked Mina if she had fun in the pole house, and she said "Yeah!" She always nods her head when I ask if she wants to go back there. But when I asked whether she liked it better at the pole house or at Sissy's house, she said "Sissy's house!"

I put together a little photo album from Isaac's birthday: http://www.mendozabaseball.com/minabrigitta/isaac%27s%201st%20birthday/. We didn't take too many pictures because we've been having trouble getting the pictures from the digital camera to the computer and then deleting them from the camera. Poor guy just doesn't get quite the same treatment as his Sissy. He had fun, though.

October 2-5: Mina at the clinic and Isaac at the pediatrician

I've completely lost track of the day numbers, and I'm not sure what they mean anymore, so I'm switching over to dates. Good news from today's clinic appointment: Mina Brigitta gained some weight back! She went from 13.4 kg (29.5 lbs.) two weeks ago to 13.7 kg (30.1 lbs.) today. We're also thinking she may have grown a little bit. Her height measurements don't seem very precise, but she's been measured at 91 cm (35.8 inches) the last few times after being measured at 89 cm in the past few months. Keri had Isaac at the pediatrician today and they looked at the growth charts for girls. Mina Brigitta is right at the 50th percentile in height and weight, after being 90th-95th up until this year. That's kind of tough news to hear in a way, just another reminder of how hard all of this has been on her body. Not that we hadn't already fully internalized that fact, but still...

Dr. Cowan had a look at her skin rash, and didn't seem too alarmed. It's really very subtle, so we're going to watch it carefully and see what happens. He felt comfortable dropping her cyclosporine down another notch, so she'll go from 25 mg to 20 mg three times a day. They took some blood to run a test of how well she is producing cortisone, which can be suppressed by steroids. If that result comes back normal, they may drop the prednisone altogether. She's also still on Cellsept, Acyclovir, Fluconazole, Pentamidine, and IV immunoglobulin, as well as an antacid, flouride and multi-vitamin. The last four are preventive drugs that she takes because of the immunosuppression caused by the cyclosporine, prednisone and Cellsept. She takes her meds like a champ, but we're looking forward to the day when we can leave them behind us. If all goes well, that could happen by the spring. In some cases, unfortunately, patients have to stay on them their entire lives.

They're planning to run a test of her T-cell functions after her next appointment, as well as another chimerism test. The chimerism test will tell us whether any of her own, likely cancerous bone marrow is growing back. I'm already anxious about it, even though we won't know the results for three weeks. T-cells are a type of lymphocyte, or white blood cell, that take a long time to recover full function after a bone marrow transplant, even without all of the medication. They're not expecting hers to be normal because of the medication, but the doctors want to see what they look like anyway. If they do come back with good numbers, they might lift some of her restrictions. The other news is that the orthopedic surgeon yesterday said she doesn't have to wear the boot anymore! Yay! She hadn't been wearing at home anyway, and her ankle was obviously feeling much better. They took an X-ray, but we never got a report so it must have been OK.

I don't know if I've mentioned this before, but I really feel like Mina Brigitta is growing and developing right before our eyes these days. Right about the time Grandma came, she stopped needing her Keri and me so much, and began to be much more independent. Keri says she's now morphing from a toddler into a little girl. I think Lyn's presence helped trigger that, because Mina feels so comfortable with her, it allows her to explore the world without the smothering presence of her parents. Today she opened her mouth for Dr. Cowan to look in for first time. All that time in the hospital, and with how good she was about everything else, opening her mouth was the one thing she consistenly refused to do. She even gave Dr. Cowan a hug today, and when I asked her if she'd seen Dr. Horn, she said "No, Doctoe Cow-een."

Lars Isaac, on the other hand, is having a bit of a rough go of it these days. He's at the age of separation anxiety, and he screams and arches his back whenever Keri tries to pass him off to someone else. We think he may also be betting a molar or two. Then today he had to get his chicken pox and MMR vaccinations. He is still at 90th percentile on height and 50th on weight, even though I thought maybe he'd gained some bulk as well. I didn't have the energy to post much on his birthday, but I'm so thankful we have him. He was conceived about a week before Mina Brigitta was diagnosed, so he's really been with us from the beginning. There were times when we weren't sure how we could possibly welcome another baby into our family at this time, but he's such a joy to have around, now I can't imagine life without him. He's been a ray of sunshine throughout this ordeal. I'm sure he's been affected by it in lots of subtle ways, but he and Mina love each other so much it's all worth it. Mina sometimes just wants to hold him, so she'll grab onto him and won't let go. He screams bloody murder, and we have to explain to her that we know she's just showing affection, but Bubba doesn't like to be held like that. I'm looking forward to watching their relationship grow and develop over the years.

Days +149-154: Happy Birthday Isaac!

Today was Isaac's first birthday. It's hard to believe he's only been with us a year. Feels like he's always been around. And it's only been a year since Teri, Kennedy, Tutu and Richard were here taking care of Mina Brigitta while Keri was in the hospital with Isaac. So much has happened since then, sometimes it feels like we've lived a lifetime.

Grandma Lyn arrived late last night, so the kids got to spend the whole day with her. Grandma must be exhausted, because they didn't give her a break all day long. Mina Brigitta especially was at her side pretty much constantly from the moment she woke up until she finally went to bed at nearly 10:00.

Mina Brigitta was very excited about Isaac's birthday today. She helped wrap Isaac's presents while Isaac was down for his morning nap. When he woke up, she was so excited she was shrieking "Yook (look) Bubba, yook!" and pointing to the pile of presents. She also helped to bake and frost the birthday cake, and then later to open the presents. All day long she was walking around saying "Happy birthday to Bubba!"

As for the birthday boy, he had a great day. We didn't have the energy to plan anything involving other people, but it was festive enough just having Grandma here. They pretty much played in the house all day, except for a walk to the grocery store and to get some balloons. Grandma got Isaac a big box of legos, which was a huge hit with both the kids. Isaac is turning into such a little boy now. He loves to walk around holding onto two hands, and he's just now able to walk holding only one hand. He has such a good time doing that, he cries when you stop every time. He'll be walking within a few weeks. Then the bruises on his head will start to multiply!

Mina Brigitta is still doing pretty well. She just got through her first week without a trip to the doctor, so that's big news. She'll go twice next week to make up for it, to the orthopedic surgeon on Tuesday and to BMT clinic on Wednesday. She's walking very well now, better I think than before she sprained her ankle. Hopefully that means her hip is starting to get better. She does still have some rash on her upper back and around her neck. It's subtle, and we haven't been real consistent with the hydrocortisone cream. But it's still a worry, of course, if it's a sign of GVHD. There are other things as well -- she threw up on Wednesday, something she hadn't done in a couple of months. And today she seemed a bit pale and her eyes seemed kind of dull. But her appetite has been pretty good, and her energy level has been great. And her poops have been perfectly normal now for several weeks. So it's probably just the medications she's still on. I'm looking forward to when we can go a whole week without having something like this to worry about!