Sunday, September 16, 2012

"No."

"No." I answer very few questions with this singular response. It's almost always followed by "thank you" or more often, a long rambling monologue qualifying the "no". 

"Do you like sushi?" "No."
"Are you a Yankees fan?"  "No." 
"Would you like to bungee jump off this bridge?" "No."

"Should we try and save your daughter?"

No.

That is the answer we are about to give to a team of world renowned stem cell transplant (SCT) experts at Duke University Medical Center.  They ran all the tests.  They found her an HLA match (6 out of 6!).  They believe she would physically fair well through the procedure.

But her brain will not.  

We have spent weeks now grappling with this decision.  Do we prolong her life when the quality of life will almost definitely not be there?  

Almost definitely.  

And herein lies the universe's cruelest joke.  We can give her more time - give us more time with her - but at a very high price.  The next few months - the last few where she will still be a 'regular' baby - would be spent administering nearly lethal doses of chemotherapy and immunosuppressants, living in the PICU and an isolation room on 5200-the transplant floor at Duke.

And it would all be worth it, if it weren't for the damn MATH.  You see, the neurological deterioration begins between 6-8 months in NPA patients and follows an aggressive path.  SCT takes 80-90 days to reach the brain, where it takes another 2-4 months to begin working.  And that would make Quinn almost a year old.

Too Old.

Absolutes that we always took for granted - life and death, right and wrong - are no longer a part of our world.  We are told by everyone - the doctors, our family, our friends - "There is no wrong decision."

What they don't say - what they won't say - is that there is no right decision either.

We have spoken to families of other NPD children.  To the single physician who actually studies this disease.  To family.  To friends.  To a child psychologist.  We have taken time to think together and time to think alone.  

And we have come up with that one word sentence.

"No." 

8 comments:

  1. Sending our love north, just across the street, today and every day.

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  2. Just one of many difficult decisions you will have to make. Trust yourself to make the most appropriate ones because only you know what is best for Quinn and the family. Sending love and best wishes!

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  3. What an absolutely awful choice to have to make.

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  4. I think Elton John might have gotten it wrong as sorry doesn't seem to be the hardest word...

    Much love from the north...

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  5. you are such strong parents for Quinn, I know she will have the most beautiful life with her loving family. xoxo ,Chelsea

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  6. Only a child's family knows what is best. Such an unthinkable choice, but please be confident that you will always do right by Quinn. I agree with Chelsea - Quinn will have the most beautiful, love-filled life. You are very brave to begin this blog - please know that it will be a privilege to share your journey and offer whatever love and support we, as readers, can.

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  7. I can't imagine how difficult it must have been to make that decision. I pray that the time you have with Quinn will be filled with laughter and happiness. God Bless.

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  8. i am so sorry that you had to face such a choice. My son went through a BMT (for cancer) it is a very hard process to watch your baby go through! I think you made the right choice for your family - to just love Quinn and show her all that the world has to offer her for as long as you can.

    Love and Prayers

    Nancy W.

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