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Date:
Dear Linda,
Today I walked
out to my mailbox and to my surprise and delight found a box from you ( and Make-A-Wish) containing a beautiful piece of glass
with my daughters name engraved in it. I cried as I read the poem included with the Rainbow Glass.
This couldn't have come
at a more perfect time. See, this past week has been a nightmare for us. Our daughter Kyla had been rushed to the hospital
last Friday with a potentially deadly infection. We spent last weekend in the hospital as she received IV meds and blood.
The same day her pet parakeet died and we were told we had to find a home for the other one, because of the risk of transmitting
bacteria. This broke all of our hearts as those birds have been such a source of enjoyment for Kyla.
Last year, September
5th 1 996, Kyla was diagnosed with an inoperable brain stem tumor at the age of 22 months. We weren't given much hope, but
took her to Duke Childrens hospital for chemotherapy. I can't tell you how many times I went and looked at the Rainbow Window
you made for the childrens wing up there. It was such a beautiful light in such a dark time.
Chemotherapy didn't help Kyla
and eventually became toxic to her boi:ly. We have since taken her to an FDA clinical trial for an investigational treatment,
which our insurance doesn't cover. My husband is military and has been trying to get a compassionate reassignment to Texas
where the clinical trial is. The military is jerking us around and that has added to our frustration.
I have felt ready
to break this week from all of the pressure and when I opened that box and saw the beautiful glass, all the frustration and
sadness inside me bubbled out. It reminded me that I am not alone and others have walked this road before me.
Kyla will
be three on November 1 St. We are grateful to be celebrating this birthday, as we were told not to expect her to make it this
far. Kyla really loved the glass and was thrilled to see her name engraved on it. I thank you for being a candle in the dark
to our family at this tough time. Its people like you who make the day to day life easier to bear. Thank you from the bottom
of my heart.
Juliet Freitag--Mom to Kyla( 35 1/2 months old. Pontine Glioma dx'd 9/5/96) and Savannah ( age 6, great
big sister)
Thursday1 October 16, 1997 8:49:04 PM
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