Our families newest chapter. This is the story of life after a bone marrow transplant for a rare disease known as Langerhans Cell Histiocytosis. The story of a family, drawn together in the tough times, celebrating the good times, and finally moving on with a new normal, free of disease.

3rd May 2011

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Make a Wish and reunions

Friday was a huge day for us as a family.  What seems so normal to so many is always so much more to us.  To put it into words is nearly impossible.  But I will try.

I remember telling Joey in the midst of his battle “come on baby, we finish this (chemo, test, appointment) we are one step closer.  You beat this you can have anything your little heart desires!” 

There were days we were scared it wouldn’t happen.  There were days we were told it was over, he would not survive.  WE NEVER GAVE UP.  We clung to this one thing… Joey getting his hearts desire.  It seems so small, but it kept us going when nothing else could.  it was hope.

Friday was World Wish Day.  And as part of it Disney Stores teamed up with Make A Wish and gave a little pre-wish magic to a few families.  We were one of the 5 selected in our region for this amazing event.

We arrived at 8:45 and checked in.  At 9 AM the kids were taken into the store, and assembled in the “Theater” where a Disney Cast Member read them a story.  Each child had a “buddy” assigned to them for the day.  This person was by their side the entire time.  At the end of the story, Mickey Mouse visited with each child.  Not just the Wish child, but siblings as well!  Then each Wish Child was given a $100 gift card and told to shop.  Joey immediately set to work finding all the fun toys he has been wanting but we just could not afford.  He even shared and let David and Melanie each get a SMALL toy.

Joey was photographed, I was interviewed.  Multiple times.  We were filmed, and Joey wore himself down.  They kept asking “can we get a picture of him playing with that?”  Have at guys, photograph a miracle!  The story was run in the OC Register the following day.

From there we headed to City of Hope for the Bone Marrow transplant Reunion. 

I will tell you this, the staff at City of Hope, the patients there, the friends… its like nothing you have ever seen before.  These people have more heart, more strength, more courage than anyone I know.

There were so many people there.  The survivors wore buttons telling you have far out of transplant they were.  A few stood out… 24 yrs.  16 yrs.  29 yrs.  This was what I wanted and needed to see.  Long term survivors, who were living a normal life!

Then it was time for the group picture.  Imagine 5,000 survivors standing together in one picture… cheering, shouting, and celebrating the life they have now thanks to someone giving a selfless gift.  I began to cry.  These people knew just how precious every moment is.  They celebrate waking in the morning, going to bed at night.

We had a blast, Joey just ran and ran and ran.  And the day never stopped.  it was sheerly amazing.  When it was time to leave I felt 100x better than I had when I arrived.  People can, do, and will survive and celebrate life after BMT.  Some have long term complications, some don’t.  But all stand together and celebrate the fact that they survived.

  1. lifelovemiracles posted this