Wow, what a way to end our 10 day tour in Hell!  Okay, perhaps I'm exaggerating slightly but it's been a tough week or so.  Many, many mixed emotions, it will take awhile to process it all out in my mind and come to a place of peace and normal again.

Today brought so much frustration!!!  We knew the chemo Shelbie just finished came with some risks.  That being said, when the chemo was done, no one bothered to do any further testing to see what the results of the chemo were so we have assumed that it fixed the ITP and we avoided the nasty risks. 

Well....sorely mistaken!  The chemo did exactly what they suspected it would, it destroyed her B-cells and Lymphocytes.  Lymphocytes are part of the White cells that fight the mean and nasty infections.  Shelbie's tests came back 'ND', not detectable.  None, nada, no lymphocytes and b cells.  Geeeshhh!  So, she starts some strong antibiotics which she will have to take daily for the next 3-6 months or more, maybe the rest of her life.  There is a chance that after just one cycle of chemo, the b-cells and lymphs will come back in a few months... yay!!!  No, boooo, when they come back, the probability of ITP coming back is great, most likely in fact.  If they don't come back but the ITP does, it means bone marrow failure or Mitochondrial failure involving the marrow.  At that point, there will be no treatment but transplant. 

If the ITP comes back with the b- cells etc... then our only treatment option is another round of chemo and with each treatment the chances of destroying her immune system forever increases to the point that she will be on infusions every week or two for the rest of her life. 

I asked if we still did the right thing and how we handle the future.  They agreed without hesitation that it was our only option and they will never agree to a splenectomy or the new drug.  They assured me today that they will be able to keep her 'alive' and 'safe' even when the B cells and lymphs are gone for good.  UGHHH....

The boys, well, the jury is still out on them.  We will need to wait until the battery of immunology tests are back in 4-6 weeks.  Of course the Immunologist commented on the numerous autoimmune diseases we are plagued with in our family and again, they will pow wow with our other specialists to decided which parts are mito involvement, bone marrow failure and auto immune.  What a mess! 

I am holding on to her words, "I can treat kids with no immune system and they can live a somewhat normal life.  We will make the infusions fit seamlessly into your life." 

In the meantime, I am so relieved that Shelbie has survived the last few weeks considering Spencer dragged pneumonia home and she did not catch it!  What an amazing blessing!  Still miffed that this testing was not done at home sooner than this.  If we had not come here, we would be completely oblivious to these problems and her life could be in danger with the simplest infection!  That in itself is a blessing.  My knuckles are white and I'm wiped out!  We were at the hospital for 8 straight awesome way to fry one's brain.


  1. That is so much to handle! Sometimes do you feel like when total stress is over, the aftermath without the adrenaline is still so hard? I hope that all goes well for Shelbie and your boys. You are all doing amazing things--hang in there!

  2. Sonja,
    The aftermath is almost the hardest part! I don't understand why that is but it's always when the real struggle begins. I hate that part and that nasty chapter will be starting soon. I think that's why I am avoiding going home. Thanks for the vote of confidence.


Post a Comment

Popular Posts