Tuesday, May 19, 2009

Hen, it has been so long since I've written. I wish I wasn't writing to tell you this, but the little fella on the right, his name is Stacy, well, he died tonight. He had Fanconi and his parents took him off life support at 7 pm. We know Alicia, his buddy on the left. She got a great Hope for Henry birthday party and gift.

I feel terribly sad for Stacy and his parents Michelle and Mark. They had to do the unthinkable tonight and help Stacy die.

Here is a journal entry from beautiful Sam McCarthy's mom, Nikki. We visited Sam and her family last month. There's a lot to tell you (we went to the White House and were on TV, Jack came in second in the state finals of the Geography Bee, Mom's book is cruising along, I am probably getting a new job). But for now,
Dear friends and family,

Since the beginning of this journey I have always tried to share all the good things that happen and the hardest parts.  Today is one of the hard days.  One of our FAmily members will be taken off of life support tonight at 7pm.  His name is Stacy and he is five years old.  He received his transplant not long after Sam.  Unfortunately he contracted an infection in his port recently and it spread to his bloodstream.  I remember meeting this little guy in the parent kitchen on the BMT floor.  He was a teeny tiny little thing and I really only briefly spoke with his mom to ask wether he was an FA patient when I noticed that he had misshapen hands and thumbs.  We have since passed in the elevator and maybe on the BMT floor at times.  I never really talked to her much after that but I have spent the last few days crying, grieving and praying for her and her family.  Her little dude was the same age as Joe and I am trying to keep from crying every time I look at him today knowing that this mom and dad are making a decision to let their son go tonight.  Please pray for them tonight as they do something that is unthinkable for any parent to have to do.  The truth of the matter is that he was in the same place as Sam is on any given day.  BMT is a lifesaving but very scary process and today FA is taking a young life.  I’m sad and scared but grateful at the same time.  Grateful that Sam is improving a little bit with the antibiotics and feeling a little better this afternoon.  I am hugging my kids and counting my blessings and praying for another mom and family today.


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