Katie Rose H. - Quilt Finished in 2007
Born: May 5, 1996
Illness: Acute Lymphocytic Leukemia Pre B, Diplomyelia (split spinal cord)
A Thank you from Katie Rose's Family!
Written November 6, 2007
Thank You so much for sending the beautiful quilt for my daughter Katie Rose. She was so happy to get it. It is so nice and words cant even describe the feeling I felt when I saw how great it was. I sat with Katie Rose one day and she told me what she felt each square was saying to her.
I will first tell about the pillow. The square from Martha in Kentucky – made her feel proud as a princess. Sonia from Mexico - my love of kittys & flowers and butterflies.
Quilt - Starting at the top row across:
Charlotte From Ireland - Makes me want to visit Ireland and see the flowers
Elaine From United Kingdom - Reminds me of myself a princess that likes presents
Annie From Maryland - Makes me feel like angels are always with me
Debbie From South Carolina – Reminds me of my old Kitty
No Name – Beautiful mermaid at the ocean
Nita From Oklahoma - Reminds me of my sisters
Fran From WI – I am not alone people are praying for me
Margaret From CO - Having fun playing dress up
Deb From MO - I am always loved
Sarah From England - Reminds me of my sister Sarah who adores cats
Jackie From Texas – Reminds me of dress up play
Connie From LA - Reminds me to pray
Karen From WA - Makes me want to dress up my cat
Mary Anne From AR - I like to wear princess crowns
Terri From N. Carolina - Our cat in the garden
Jaqueline – A rich cat with her teddy
Mary From IL - Princess and the Pea
Kaye From OK - I am always a princess
Beth From Virgina – Disney Princess
Inez From SC - Playing dress up
Karen From Tennesse - I love Disney Princess
Barb From MI - My heart in the middle and I am surrounded by love
Janet From CA - Reminds to have pretend play
Kathy From CA - Care Bears people care for me
Vanessa From Illinois - Relax I am a princess
Patricia From Ireland - Playing dress up
Tina From Ohio - Magic
Gayle From WI - Girls playing in puddles make me want to play in the rain
Melissa From VA - Surrounded by love
Jeni From NJ – I love cats
Kelli From MI - Reminds me to follow God word
Jeremy From AL - Keep my wishes and dreams
Margaret From Nevada -People caring about me
Sandra From United Kingdom – Having fun
Sondra From FL - I will find my prince someday
I was so excited because it was so pretty and it made me realize all these people care for me.
Thank you,
Keri and Katie Rose H.
Katie Rose's Story
Written by Katie Rose's mom Keri in April 2006
Katie Rose was born on May 5, 1996 with a split spinal cord (Diplomyelia). She had to spend her first year of life wearing a camp brace as she had no hip sockets. She had her first spinal surgery at 5 months old and they did biopsy on the tumors on her spinal cord and they were benign. She wore many casts to help stretch her tendons in her feet. At 23 months she started to walk. She had tendon lengthening at age 2 and 3 years old. She was fitted with leg braces and wore them on both legs. At 5 years they broke her right leg and put plates and screws in. At six years they removed them. And at 6½ she had a screw put in to stop growth on her right leg. At 7 she had a tethered cord and had surgery to release the cord. At 7½ she had the screw removed from ankle.
Katie Rose was sick with Pneumonia for 2 months before we got the diagnosis of Acute Lymphocytic Leukemia Pre B on February 19th, 2005. She spent 45 days in the hospital and was in critical condition for the first 12 days. She is on chemo. Because Katie Rose's spine is fused, they could not give her spinal taps or spinal chemo so they had to put an Omaya reservoir in her head (shunt) for spinal taps chemo treatments. She had complications and ended up getting very sick, we ended having surgery again to have the reservoir removed as it had kinked and chemo had leaked in to her scalp and ate away the flesh. They put in a new reservoir on the other side of her head and it is working properly but that surgery to place it in, resulted in a small bleed and she had a mild stroke. She was having tremors. That has since resolved but she is still having some right sided weakness. She also has a central port (in her chest) for chemo IV’s and blood work.
Katie loves to color and play school. She loves disney princess. Katie Rose is a sweet girl who always thinks of others. When the cedar wildfires hit our communities in San Diego, Katie Rose had just won a contest and won money. She spent every penny on crayons, coloring books and paper and pens for the kids in Crest. She was able to give 25 boxes of crayons and books.
Katie Rose also wrote a book after her spinal surgery and hospital stay that she wants to get published. It is about having surgery. She wrote it so other children would not be afraid of having surgery. She wants children facing surgery to be able to get a copy of this book for free.
Katie Rose is now having us document her Leukemia experience so she can share with others so they won’t be afraid too. She is a smiling girl and is a fighter and she will win this battle!
