Wednesday, May 03, 2017

I really Really Really Tried to Stop

But I have decided I need to check in on occasion.  Basically, life is good.  She is five years out from transplant and if you did not know better you would never know she was sick. 

No one would notice the total imbalance of her endocrine system.  A tendency to have lung issues, a loss of fertility, a loss of hair, thyroid and a myriad of other issues.        

Her skin has tantrums as small rashes seem to come and go.  Never really letting anyone relax.  Pearl Anne is 5 years old and so like any young immune system she is unpredictable. She was unable to fight off the last cold. 6 weeks, two doses of antibiotics and prednisone and still a cough. 

She has a five year follow-up next year with her favorite, Paul Carpenter, MD.  They will banter, she will complain, he will ask her questions about private parts.  It will be good. 

I continue to feel lucky to have my child with me.  I mourn and grieve over the fact she continues to suffer due to the treatment.  Was it worth it, yes.  Would I authorize the treatments again, absolutely.  Do I know I am lucky?  of course.  

Yes, she is alive. Yes, she continues to grow and mature. Yes someday she can say she is a survivor.  But I always worry it will return in some form or another.  I wonder what live would have been had she not been radiated and poisoned and poked and prodded and tortured.  What she have done with her life had four and a half of her life been spent chained to a hospital bed?  What would my life had been?   I guess we will never know. 

We have a life.  It is a good life.  Progress is being made every day.   I really have no complaints.  

I plead every day that things continue as is....

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