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