Day +3511: Preliminary news is good

We received some news about Mina's biopsy results over the weekend.  Dr. Horn has been consulting with two of the leading experts in the country on pulmonary late effects, and so far they are saying that the bronchiolitis does *not* appear to be caused by graft-vs.-host disease. Their best theory at this point is that the obstruction is caused by damage from the radiation she received in preparation for the bone marrow transplant.  As her body is growing, the small airways are not growing along with the rest of the body, causing obstruction. 

This is all still preliminary.  We are meeting with the pulmonologist tomorrow to get her take on things.  The good news is that they are no longer planning intensive immune-suppressing treatment in the near term.  What we don't know yet is what this would all mean for the long-term course of her lung disease, and what other kinds of treatments they might prescribe. 

The patient herself is doing great.  We have been taking it easy a bit, but it hardly seems necessary.  She developed an unusual dry cough in the days after being home, but it's the season and Isaac has been coughing like crazy too.  We also meet with the surgeon tomorrow to make sure the recovery is going smoothly, but we don't have any concerns.  I will post again tomorrow once we have an update. 

Day +3498: Mina is home

She was discharged at around 11 AM today.  Overall, everything went very smoothly with the surgery and it is nice to be out in time for our traditional Thanksgiving with Rich and Olgica.  Mina spent the afternoon with old friends and may even end up with a sleepover tonight!  She is supposed to avoid lifting heavy things for a couple of weeks, so no monkey bars just yet.  Her pain was nearly gone today although she is still receiving Tylenol and ibuprofen. 

Next step will be to find out what the biopsy shows and figure out a treatment plan.  We will keep you posted as soon as we know something. 

Day +3497 #2: Home tomorrow!

Mina had a good day today.  Was feeling great in the morning so Keri took her down to the Child Life room where she composed an electronic song "Dance of the Fairies".  Her chest X-ray looked great this morning, so they removed the hose from her chest in the afternoon so she spent the rest of the day completely unhooked from the wall.  They X-rayed her again tonight to make sure there was no fluid buildup without the hose, and the doctor came in a little while ago to say it looked great and she gets to go home tomorrow!  One more thing in a long list to be thankful for. 

Day +3,497: Up and at 'em

Quick update:  Mina woke up feeling much better today.  Pain nearly gone and just generally feeling bright and chipper.  She had a chest X-ray around 9 which came back looking good, so they took her off the IV and stopped the suction on her chest tube.  They will monitor any fluid accumulation in her chest and as soon as they are convinced there is no issue we will be able to go home.  Seems to be looking good for tomorrow. 

After breakfast Mina told me "I really don't want to stay in bed all day".  So we got her up and dressed and then she and Keri made their way down to the child life center where she was working on creating an electronic song!  I am at work but suspect the ladies are now back in the room getting ready for an onslaught of visitors. 

Day +3,496, Post #2: Long Day

Mina is sleeping peacefully now after a very long day.  Keri and I sat with her for most of the day.  She went into the OR around 11:00, was out around 1:00, and was transferred to a room on 7 Long around 2:00.  She slept for a while after coming up here, then was awake and chatting for several hours.  Our dear friend Susie came to visit around 6:00, bringing cards from the kids and teachers at Katherine Michiels School, where Mina attended until last year and where Isaac and Susie's kids Soren and Aedan go to school.  Mina enjoyed reading the cards a lot.  Later on Heidi visited with Mina's best friend Raven, but Mina was feeling pain again and received some morphine so she was a little of out it.  Isaac spent the afternoon with his good friend Jake, and was finally able to visit around 7:30.  Everyone left around 8:00, and then it took us an hour or so until Mina was able to lay down and go to sleep.

Feels very weird being back on 7 Long.  Everything feels so familiar, it's almost like we never left.  There are even a few nurses who still remember us from 9 years ago. Definitely lots of memories flooding back, most of them good ones but also the anxiety and the worry that was so overwhelming then.  But Mina is doing great and we will be home before we know it so in that sense it really doesn't feel the same.  We definitely don't need to be waiting around for weeks until her neutrophil count comes back up!

Mina still has a tube in her chest to drain fluid and air out of the chest cavity.  This helps to prevent a collapsed lung.  She will need to stay in the hospital until the hole that they made in her lung to extract the tissue heals up.  That could be a day or two, or could take longer.  She has always been a quick healer so we are aiming for Wednesday morning.  Here is hoping for a very quiet night so we can both get some rest! 

Day +3,496: Mina Brigitta’s next chapter

First blog entry in a very long time.  I'm not sure what the schedule will be for updates.  Technology has kind of passed this space by, but here is where all the history is so I think it makes sense to continue to post here.

Mina is in surgery now.  Hopefully all will go well.

Below is the letter we are sending to friends.  


Dear friends,

I am writing with some sad news about Mina Brigitta.  As most of you know, she was diagnosed with acute mylogenous leukemia as an infant and underwent a bone marrow transplant shortly after her second birthday.  After nine healthy, happy years, she now has another serious health condition to deal with.  This year she has experienced a steady decline in her lung function, from approximately 90% of average in January to 60% this month.  The official diagnosis is “bronchiolitis obliterans”, which means a constriction of the small airways caused by inflammation.  She has been seeing a pediatric pulmonologist as well as her bone marrow transplant doctor, and both have been monitoring her situation very closely.  She has been on a mild regimen of drugs since August, but they have been unsuccessful at stemming the decline in lung function. 

The most likely cause of the condition is graft-vs.-host disease (GVHD), meaning that her transplanted immune system is attacking her healthy lung tissue.  GVHD is a common side effect of bone marrow transplants, and Mina experienced very severe acute GVHD in the weeks after her transplant.  However, her current situation is very unusual because she has had no signs of any GVHD for the last nine years.  Bronchiolitis obliterans can occur in otherwise healthy children who were exposed to serious respiratory diseases or other lung injury in early childhood, so perhaps that is a contributing factor. 

The next step will be an open lung biopsy, which will take place at UCSF this Monday, November 24.  She will likely be inpatient for several days after the procedure in case any complications should arise.  The doctors will then prescribe an intensive, multi-year course of treatment, the details of which will be determined based on the biopsy results.  We are all hoping the results will shed light on the cause of the inflammation as well as point in the direction of an effective treatment. 

We are asking for your thoughts and prayers to be with Mina as she goes through this next chapter in her life.  At this point, the outcome of the treatment is uncertain.  This condition is rare in children, and there is no standard treatment that has been shown to be effective in all cases.  We will be consulting closely with the experts at UCSF to choose a course of treatment with the best likelihood of success while trying to avoid serious side effects.  We will keep in touch by reviving her blog:  http://minabrigitta.blogspot.com, if I can remember how to sign in. 

Mina herself is doing great, of course.  She has such a positive, can-do attitude.  Nothing can get her down or distract her from the important things she is doing, like reading pony books and playing with her friends.  Hopefully this will all just be a bump in the road so she can keep on doing those things.

We are very grateful for all that you have done for us over the years.  Thanks in advance for sticking with us at this difficult time. 

With much love and warmth,

Arne, Keri, Mina and Isaac

Day +1704: We Wish You a Merry Christmas and a Happy New Year!

Hard to believe another Christmas has come and for the most part gone. The kids were *so* excited this year. This year might have been the apex of Christmas at our house. Isaac was just absolutely bouncing off the walls. He could barely sleep for like a week before the actual day. He was excited last year, but this year is the first time I think he had a full memory of just how awesome Christmas is. Mina was still very excited also, and is still young enough to fully believe. She'll be in second grade next year and might have some different ideas about Santa Claus. This year on Christmas Eve she was talking about what Santa might leave her when he came down the chimney that night, and then she slipped in "Unless it's just you." I said "What do you mean?" She told me that some people believe that there's no Santa Claus and it's just the parents that fill the stockings. I thought about it for minute, then said "Well Mina, the thing is, if you stop believing in Santa Claus he stops coming. Just like if you stop believing in fairies, you will never see one again." Then she said "I believe in fairies!" and started talking about how she had seen fairies lots of times.

There were lots of great presents, of course. Mina got a digital camera, some doll clothes and a baby seal stuffed animal. Isaac got a remote control car from the Burtons across the street and a portable foosball table from us. Both kids also got Velveteen Rabbits and soccer balls. They were thrilled. We had Christmas Dinner at our house again this year -- 10 adults and 7 kids in our little flat feels like a real party! The day after Christmas we went to see the Nutcracker at the SF Ballet. They really put on a great Nutcracker. The stagecraft is truly amazing. I was worried because our kids were so exhausted and as cranky as they've ever been all day, but they were great during the performance. They've listened to the music enough and they know the story pretty well so that helps a lot.

Isaac has been playing soccer games up and down our hallway for several weeks now, and an integral part of the game is keeping score. He always tells everyone who is playing: "The red team is the Philadelphia Phillies and the blue team is the New York Yankees. Which team do you want to win Daddy?" "It's 2 to 1 Daddy, who do you think is winning?" "Philadelphia just scored! It's 4 to 1!" Sometimes he puts on his SF 49ers helmet and plays football. He's started to go to a few sporting events. Keri took him to a high school soccer game, which was a playoff game featuring his teacher's son (a high school senior). Uncle Brent took him to an Everett Silvertips hockey game while the family was in Washington, which was a really big deal because he got to stay out way past his bedtime. He still remembers the order in which all the goals were scored (the Silvertips lost, 6-2). Then Uncle Steve, Uncle Brent and I took him to a Washington Huskies game where they beat Cal 42-10. He was a little confused at first as to why we were cheering for Washington and not California, but he caught on quickly to all the excitement in the stadium. He remarked after the game that that was the first time he had been to a game where the right team won.

The idea for the soccer ball Christmas present came out of the time when we went to a baby shower for my business partner Snuller and his wife Erica (their baby is due any day now!). They have a little back yard which is perfect for a little soccer game, but they didn't have any balls in their house. So we improvised and made one out of rags and packing tape which worked just fine and we had a great 45-minute soccer game between three 4-5 year old and three parents (the kids won, of course). The key moment was when it was time to leave, and Isaac started to cry because he didn't want to leave his "ball" behind. So Snu gave it to us and Isaac has kept it ever since.

Isaac has really settled down and started flourishing in school. I really feel like it was going to "Cool Camp" that really helped him turn the corner. I'm not sure if it was because it was such a big adventure that he shared with his teacher and his school friends, or if having his Daddy spend that much time with him in that environment, or what exactly it was, or just the confidence gained from having experienced that, but he pretty much stopped clinging to me the next week and now he loves his school and he loves his teacher Randall. He is way into numbers as I've mentioned before, and he's now teaching himself to read as well. He's very sporadic about it and his approach is very different from his sister, who sits down methodically and practices the sounding out skills she's learned in school. He just randomly asks how to spell stuff, or what certain combinations of letters make. This conversation from the other day is typical.

Isaac: What does I-S spell?
Arne: "Is."
Isaac: How do you spell "ice"?
Arne: I-C-E.
Pause
Isaac: How do you spell "ike"?
Arne: I-K-E.

Things have been a little bit difficult with Mina lately. She is very strong-willed, and when she digs in there's almost no punishment that seems to be able to shake her. We have been trying to introduce chores into the daily routine, but the kids have been fighting back hard every step of the way. We've been having Isaac set the breakfast table every morning and Mina clear it. This helps get us out the door in time for school because Isaac has typically been the slow one getting dressed and ready so this gives him a head start after breakfast. He complains but always gives in, but several times Mina has downright refused to do it. I try things like taking toys away, but it doesn't help much. We finally switched our adult roles so that I'm around in the kitchen area while she is clearing and Keri helps Isaac get ready, and that seems to have helped a lot. Now she mostly does it without complaining, but it's been a long road getting there. We were worried for a while that she was stalling because there was some kind of issue at school. She's in a class where she is the youngest by a year, and while she never ever complains I know it can't always be easy. But she loves her teacher a lot and he says she is always cheerful and seems to be totally thriving at school. We've pretty much concluded it's a phase she's going through where we have to probably ease off a little and give her some more control. So we're trying that and things do seem to be getting better.

Other fun stuff:

The kids have gone to see several shows recently, including the Nutcracker, Velveteen Rabbit, the San Francisco Youth Symphony's performance of Peter and the Wolf, the Wizard of Oz. One time I was telling the kids how lucky they are to get to go to all those shows, and how a lot of people aren't so lucky that they get to go to so many shows. Isaac commented that lots of people must get to go to shows because the theater is always full!

Several weeks ago the kids had their friends Aidan and Sophia over for a playdate. At some point during the day the instruments came out, as they usually do, but the kids decided they wanted their band to play on the front steps. So the four of them went down there and Isaac laid out his pirate hat on the sidewalk while they played instruments and sang "songs". The highlight of their day was that two people actually gave them money.

And last but not least, check out this news story about Camp Okizu: http://abclocal.go.com/kgo/story?section=news/assignment_7&id=7137448. I'm not going to spoil it but, be sure to pay extra attention starting at around 0:42.

Merry Christmas and Happy New Year!

Day +1679: Trying to stay healthy

Well, cold and flu season is upon us again and we have all been battling to stay healthy over the last several weeks. Mina has had a stuffy nose and cough for what seems like months, and Isaac has also had a series of colds. Then there was a stomach flu that everyone has had but me, and I feel like it's coming on even as I write this. Mina threw up in her bed one night, and she's such a sound sleeper she didn't even wake up. Nor did she wake up when I turned on the lights, put her on the floor, moved Isaac to our bed, stripped the sheets and blankets off the bed, put new ones on, and moved her back onto it. The next day, Keri and I were trying to remember the last time Mina threw up and we couldn't remember a time since she was in the hospital recovering from her transplant. She is strong girl, and apparently got a strong immune system from Mr. Rodriguez. Both kids got their flu shots and their H1N1 shots, so hopefully that will help.

Hope everyone had a nice Thanksgiving. Ours was great -- we continued our tradition of celebrating with Rich and Olgica, who always make a fabulous dinner, and staying overnight. Unfortunately, Thanksgiving night was when Mina first got sick, so she wasn't feeling all that chipper the next day. Keri ended up taking Mina home while Isaac and I went down to San Jose with R&O and some friends to go to an art museum. Isaac likes having Daddy time so he was surprisingly patient at the art museum. He even saw some pieces that he liked. The best part for him was that we ended up taking the Caltrain back to San Francisco. Caltrain is a real diesel train that runs on the regular tracks, with five or six cars. He was so excited. It even has a row of seats that are upstairs, so of course he wanted to sit up there. We did that for half an hour, then we walked around to see if it had a dining car (it didn't). But the best part is, when we made it to the front of the train, there was no engine! The engine was in back, pushing the train backwards. It ended up we could look out the window at the front of the train and see the tracks rushing under us. It was just a bit too high for Isaac so I ended up putting his booster seat on the floor and by standing on the arms he could barely see out the window. He stood there for half an hour "driving" the train, and was totally happy. His little arm would move up and down just a little bit each time the bell or whistle rang, which happened at every crossing or station.

Day +1644: Isaac's Birthday and Cool Camp

Today marks 4.5 years post-transplant! She is doing great in every way, yet I still can't help but worry when, as has happened this week, she has a big dark bruise on her knee and she has had a series of bloody noses. The bloody noses aren't much -- she has a cold and we were in the Central Valley and in Tahoe for the last five days where it is very dry, and the amount of blood is very small so her blood is obviously clotting just fine. And she has only the single, well-defined bruise, which is a very normal thing. So it's all just my imagination. But still, I'm left wondering if this feeling will ever go away.

October is Isaac's month, and he has had a pretty good one. He turned five on October 1, had a big, exciting birthday party at Little Giants' baseball field on the 10th, lost his first tooth shortly thereafter, and had a great time at Cool Camp (more on that later). He is such a big boy now, he's almost an inch taller than Mina and the other day when he was wearing shorts I was marveling at how long and rail-thin his calf is. Definitely takes after his mother.

His birthday party was great. There were maybe 20 kids and as many adults there. We gathered around 11:00 AM and played ball until nearly 5:00 PM. It's interesting, some of the kids played ball almost the entire time, except while they were eating. Others had no interest at all in the game and spent the entire day running around and doing the things kids do when they have free time. Isaac was in the first group. We had a blue team and an orange team, and every once in a while Isaac would go into the dugout and change his shirt and come back out on the other team. We didn't keep track of the score, or outs, or even strikes, just hit the ball and ran around the bases. In the end, Isaac pronounced that the orange team won, 16-15.

School is going well for the kids. Mina absolutely loves it, and whenever I see her teacher he tells me how well she is doing and what a pleasure she is in class. She is by far the youngest in class -- there are three boys that are 9 or 10 years old, two girls that are 8-9, another two boys that are 7, and a 7 year-old girl. But Allen says she never lets it bother her -- she always has a smile on her face and participates in everything enthusiastically. She is progressing with her writing. He tells her to sound out words and not to worry about how she is spelling them, so over the weekend she made a picture for "Soren and famele" and another for "Isaac and family". Their most recent field trip, aside from Cool Camp, was to the Contemporary Jewish Museum where there is an exhibit of the art of Maurice Sendak. Keri and Isaac both went on the field trip.

Isaac has had a harder time adapting to a 9-4 schedule. He has always been shy in new situations, and I think it's been pretty overwhelming for him. He will sometimes cling to me right as we walk in the door, and several times he has cried as I've had to physically hand him to his teacher. I don't think it's anything about the school itself -- he seems to really like his teacher and I know he has fun while he is there, but he is having a hard time with the transition. I think he just gets overwhelmed with all of the noise and commotion in the morning, and his instinctive reaction is to panic and cling to me and not want to go in. He does seem to be getting better with it.

Last week from Wednesday-Friday, 15 kindergarteners and upper elementary students went to "Cool Camp", which is a camp they hold in a horse pasture outside of Fresno. Either the school or the founder (Katherine Michiels) owns some property there, and there is a little cabin near a seasonal stream right off of Highway 41, which is the main road from Fresno to Yosemite. It's not an especially beautiful place, and the traffic can be a bit noisy at times, but the kids had a ball. They went exploring and found rocks, sticks, snakes, frogs and even a scorpion! There is a tree house about 20 feet up in the air, a spot where there are round holes in the rock where the Indians used to grind acorns, and there is a waterfall that was not running when we were there. The whole point of Cool Camp is that the kids do everything themselves. They took care of their own stuff, laid out their own sleeping bags, made their own dinners (simple stuff like spaghetti and burritos), all under the supervision of adults, of course. There was also a campfire where the kids roasted marshmallows and hot dogs. I went along as a parent volunteer. I slept out on the deck of the cabin with all of the kids while the teachers got some sleep inside the cabin. I wanted to go to take care of Mina's contacts and also because I don't think Isaac would have gone if I didn't go. But the teachers drilled into our heads that we were not *parents* while at Cool Camp, we were "adult campers". The teachers were in charge, not us. It was all great fun.

After Cool Camp, I took Mina and Isaac and their friends Cara Rose and Layla and drove to Lake Tahoe where there was a group of families staying in a vacation house. The drive ended up taking over 7 hours, but it was a spectacular drive. We went through Yosemite, past the Tuolomne Meadows and over Tioga Pass (9945 ft.). Then we drove up the east side of the Sierras into Nevada and from there to the house near the Heavenly ski resort at Stateline, NV. I had never been out that way before and really enjoyed the drive. It was a long day for the kids, but it was interesting and we all had fun over the weekend. We were exhausted when we arrived back in San Francisco around 5 PM on Sunday! Keri was gone at an anthropology conference in Madison, WI and arrived around 9 PM after the kids were in bed.

Mina wrote a poem while up at Cool Camp that I wanted to share. "Wrote" meaning that she dictated it to her teacher and he wrote it down for her. Everyone is very excited about it-- two teachers came up to me and told me about it before I had a chance to read it, and they even featured the poem in the weekly newsletter this week! Here it is:

The Rock

by Mina Olson

Oh Rock, Oh Rock

You are so beautiful

Oh Rock, Oh Rock

You are so sparkly

And are the lightness

Of my heart with joy

Because you are so white

Oh Rock, Oh Rock

You are so shaped like my heart

You are like the morning

Sun at night

But the sun is so yellow

And the rock is so bright