Getting use to life

Platelets are still dropping, surely and steadily.  It's so frustrating to see your daughter's blood in such a shambles and there is absolutely nothing you are anyone else can do about it!   This afternoon they are at 24 but there is still no plan to do an infusion this week.  I am torn between being patient with the doctors and letting them do their job and being a mom and listening to my daughter who is scared, tired and worn right out both physically and emotionally.  There is something unnerving about living with this disease and knowing that at any moment, without any notice, the cell walls can just collapse and internal bleeding will ensue.  There is no magic platelet count when this event could even be predicted and that makes it all the more annoying. 
     Sometimes, I think that a person's emotional well being is just as important as their physical.  Would it be that big of a problem to do the infusion sooner than later just to ensure a little more peace of mind?  Apparently, yes, that is too big of a problem and too much to ask.  Whenever we have had setbacks in the past, we have adjusted fairly quickly and established new patterns of normality.  Not this time though.  I'm not sure what is different but I'm just not sure we will ever get use to this part of life, the up and down, unpredictable platelet counts.  Maybe there has just been too much going on this year and life has taken it's toll.  Who knows.  We will just have to keep hanging on, sometimes by the very tippy, tips of our fingers.


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