Thursday, August 2, 2012

Oh Happy Day!

This week has brought two of the most incredible gifts to our family!

On Tuesday, we were given contact information for Clara's donor and are waiting to hear back from him.  The opportunity to get to know Clara's donor has absolutely filled my every thought.  His donation was given quite a bit of publicity, so we know a fair bit about him since finding out his name - although we have not yet spoken with him.  He is an incredible guy, and I pray our meeting is one that is as joyful for him as it is for us.

Yesterday, we found out that Clara's immune system is completely, fully, totally functional.  ALL restrictions have been lifted. 
  • She is no longer under isolation restrictions.
  • She does not have to wear a mask when going places
  • We do not have to avoid construction, or someone mowing the lawn.
  • She doesn't have to take ANY meds anymore.
  • She can play at the park, or go to a friend's house for a playdate.
  • She can eat anything she wants. Or as she says, "Can eat floor?"
  • She can touch anything she wants - in fact, she can roll around in a pit of mud if she wants.
  • She can fly on a plane and meet all her aunts and uncles and cousins and great-grandparents - some of whom have only seen her when she was 5 weeks old, but most of them have actually never met her and none of whom have met Rosalyn.

The list is incredible and most of it is the kind of thing that we all take for granted - yet, they are huge for her.  She is adapting quickly and understands much more than we realized about what was "dirty" before but that she is now allowed to do.  And the smile on her face while she looks at me and says "I'm touching." (a flower) or "I'm standing in dirt." is just incredible.

I hope I can pick back up with blogging.  I always did it out of necessity to keep you all abreast with Clara's treatment.  But please know that no news is good news for us.  In January 2013, she essentially reaches a milestone that puts relapse and other life events completely out of the picture.  We will consider her cured although that word can't be used until January 2016.

There is so much I wish I could articulate.  There just are no words for the joy we are feeling.  Instead, I'll offer you this:


Mom/Mimi/Mama Deb said...

Such a long wait, but what joy it brings! I am so happy for you all and so thankful to all the people who had a part in her healing and progress, especially her donor!

Emma said...

Hi, my name is Emma. I found your blog because I am signed up as a marrow donor. I hope that I can help someone else, just like you have been helped. Clara is an inspiration, and I have loved reading about her- such a brave little girl! I hope everything goes well for her in life.

Anonymous said...

Hi, my name is Abee. I found your blog on (This was my 2nd time signing up fro the registry.) I signed up for the registry in late 2010, when I was pregnant with my daughter Sophia. My swabs & paperwork wasn't put into the system, because I am guessing some biased situation. Anyway, I noticed that you have stopped blogging here 4 years ago. I hope that this reaches you...

It has been 2016 for 10 months now. How is Clara doing? Is she cured? I hope so! I hope Clara has been enjoying the 1st grade & has a lot of nice friends. I wish you all the best.


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