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KRISTAN GRACE

MY RAY OF SUNSHINE!

HEMOPHAGOCYTIC LYMPHOHISTIOCYTOSIS
What a BIG name of a disease for such a little girl. Kristan, at 7 mo. of age, was diagnosed on June 14, 2002 with this rare but life threatening disease.
One that affects only 1 in 1.2 million births at which only 30 percent are caught in enough time to try to treat.
She was given four months of chemo and on Sept. 26, 2002 after an intense conditioning regimen of chemo(knocking out her entire immune system)she received her life saving marrow from her brother, the donor.
At an age of 4 years old, the little soldier went into the hospital and let them take what cells they needed from him, hours later he is running and playing; we should all be so unselfish.

Because of one special doctor, who found her diagnosis, because of one brave, unselfish, loving brother, because of one GOD we received this precious gift of a second chance at life.


Thank you for signing the guestbook, it really shows your support.
Please continue to pray!

Journal

Sunday, September 26, 2010 1:59 PM CDT

WOW! It has been 8 years since your BMT and I am beyond excited and proud of you, Miss Kristan Grace!

What transpired over this weekend in celebration of your Re-Birthday, was so wonderful! We planned this trip to the Smoky Mountains and to go to the top of the highest point, hiking the rest of the way to do a balloon release. It did not work out in this exact way but it was even more special than I could have hoped for. The rain and fog we had did not allow us to go up the mountain that day-the balloons would be out of sight in seconds. So we opted to release them at our cabin we had that over looked the mountains. The balloons consisted of names of survivors like you, warriors like your little brother - Ethan -, and precious angels that went on to heaven due to this horrible disease.

We have met many along the way and each one has made a special place in our heart. We added all the names to the balloons. This was a very emotional time, as I added each name-remembering each of their stories. Some were added that we knew when we went through it with YOU and some were from the last 3 years with Ethan. It was a lot to recall-each was very special and dear to us.

We had a couple of very AMAZING things happen in preparation of this release. You helped me fill them and I added the names. One thing that brought tears immediatley to my eyes-happy tears, but the kind that made me both feel like hair raised on my arms and gave me a huge smile on my face was this: I put Maddie's name on a pink balloon-Maddie is a survivor and doing well. I then reach way over to the side to grab a boy color for her brother, whom is an angel-Justin. As I added his name, and let go of the balloon that was way over to the side, it floated up RIGHT above Maddie's. OMGosh, it was SO cool! I was speechless for several minutes and had some tears.

The next really AWESOME thing was as soon as I finished the last name and my pen was not even set down-I hear your sister - Morgan- yell, "There's a RAINBOW!" So we rushed up the stairs and did the balloon release. What a SIGN! A sign of HOPE!

You and Ethan let go of the balloons and we all gasped. Actually only a few got away---did not realize the a-frame on the deck. It caught all but 9 balloons. Your Mawmaw commmented how-"What if that was how many angels there were?" And of course it gave you that WOW feeling as we watched them sail out toward the mountains. You ran downstairs to get the list---and told me there were nine angels listed. When I looked back at the film we saw them. Now we know it was not the same exact balloons-but none the less, there were 7 that took off first and 2 more joined right after. We were all amazed how it all worked out. The way flew away later.


It was truly a blessing and a gift this weekend to spend it with you and our family, seeing a little view of heaven at the very top. "Feeling the cloud in our hands" as we drove to the very top the next day-was your favorite. You always find the beauty in everything.

thank you God for these 8 years with my little miracle.....

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Hospital Information:

St.Louis Children's

PLEASE VISIT THESE SITES LISTED BELOW; THEIR STORYS WILL TOUCH YOUR HEART AND OPEN YOUR MIND TO THE TRUE MEANING OF LIFE. VERY INSPIRATIONAL!

Links:

http://www.caringbridge.org/visit/ethanlee   my baby brother and his fight
  
http://www.caringbridge.org/nc/kyle/   A true inspiration to all of us hlh families and bmt receipients. Kyle is 4 years post bmt for hlh and doing great!
Stop by to say,


 
 

E-mail Author: dlblank@showme.net

 
 

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