It's been an exhausting 31/2 weeks!  We finally got answers today!  Before I get to the results, I have a confession to make.  I wasn't going to say anything but told my kids today so now it's okay to blab it on a blog.  The Dr. called last Wednesday!  Ya, but I wasn't home.  Shelbie was though, looked at caller ID and it said 'Fred Hutchinson'.  She didn't know who Fred Hutchinson was so didn't answer it.  I checked caller ID and messages faithfully but I didn't recognize the name either.  I was so focused on looking for 'Seattle Children's' to show up.  Fred Hutchinson is the cancer hospital in Seattle where Dr. S does her research from!  For some reason, the message didn't show up until Saturday night.  She didn't give any results on the message, just that she needed to talk to me.  The rest of the weekend dragged and I only slept for 3 hours on Sunday night.  I was determined to swamp her with voicemails and messages until she called today. 
      On to results.  She said all three children have "empty bone marrow" meaning it is producing very few blood cells but there is no sign of leukemia.  The abnormal cells that have shown up recently are still there but they have not increased in numbers which is good that they are at least stable.  What does all this mean?  Well, we will have to be more attentive to getting their blood checked more often, every three to four months to be sure we are not seeing an increase in the abnormal cells.  She wants to recheck the marrow with another study as soon as the kids are out of school for the summer.  She is also beginning to search for a donor for each of the kids from the World Book.  The World Book is an international search that is done initially to see how many possible matches there are.  It is a service that is free.  When it comes time for transplant, then we will have to pay the big money to do all the detailed HLA testing/typing. 
      In about 4 weeks, we should have results back on the Mitochondrial testing so the waiting game begins again! Whew!  Regardless of the results, we will be going to Mito clinic in May when we return to Seattle for the next round of bone marrow biopsies.  Mito clinic will establish what testing needs to be done next if the DNA mito test comes back negative or we will be started on the Mito Cocktail if the test is positive. 
      She also requested that Shelbie and Spencer get some additional GI testing done as soon as we can.  It will help clarify things from where she stands.  We will have to iron out the process for getting all that done.  They are overdue to see their GI but that means a trip to Boise.  It may be something we can do here but more research needs to be done before that decision can be made. 

      At the end of the day, I am so relieved that we are not facing anything emergent.  It doesn't sound good, I know, but the alternative is worse.  Once the joy of this moment wanes, the reality is that their immune system is so depleted, even the smallest infection could potentially overcome them. She was surprised that they really are doing as well as they are considering how 'empty' the marrow is.  It is hopeful that for now, their bodies are compensating for the decreases.  I just pray they continue to do well but I know it can all change without notice.  For now, I choose not to even consider those possibilities. I know there have been many people praying for the kids and showing an increase in faith.  I know that those prayers have been answered.  Science can not explain how it is that my kids are not sickly when considering the state of their marrow and in and out of the hospital.  I know we are being watched over, there's just no other explanation.

     Of course the kids are relieved but it is hard to get too excited when they know that it was just one moment of victory.  There will be many more hurdles to jump and fights to win, that's just how it is with a disease that is chronic, rare and continues to have a mind of it's own.  Each one of those battles will be taken on as they come so tonight, they are guarded but happy!


  1. I've been thinking about you guys this week and wondering how things were going. I' m glad you got some somewhat good new. Hope the other results come in with some good news as well. I'll continue to keep you all in my prayers!


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