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