May 19, 2004 -- Maintenance #4 (Days 5-21)
bloody stools, back pain and headaches, Katie's lemonade stand, Katie's Ballad

Katie has been going to Gilda’s Club for her cooking classes. She loves it there!! Most of Katie’s time with other kids living with cancer is spent at the hospital while waiting to get poked and prodded. So, it’s really good for Katie to have “nothing-but-fun” time with kids that understand what she is going through.

Katie had a few instances where she had blood in her stools. Fortunately, no fevers followed. We’re trying to get her to drink more water. Katie mostly drinks milk and goes through 2+ gallons a week herself!! It’s great for her bones, but is adding to the constipation and hard stools. I’m trying not to give her the Miralax too often, because she then has trouble making it to the bathroom in time. My sister-in-law suggested soy milk. I’m going to ask Dr. Jill about the benefits of soy for Katie.

About a week following her spinal tap, Katie was complaining of severe back pain, headaches and was very fatigued. She also had bruising on her legs and was pale. Of course, I was fearing the worse -- a relapse (return of the leukemia). The back pain, paleness, and fatigue were her initial signs of having leukemia. I called Dr. Jill first thing in a panic and she assured me that it wasn’t a relapse because it would have been detected at her last visit. She said the back pain, headaches and fatigue were probably from the vincristine and intrathecal methatrexate (chemo given to central nervous system during the spinal tap). She wasn’t worried about the bruises on Katie’s legs, because that’s an area that most kids (not just cancer kids) get bruises. She told me to give her Tylenol for the back pain and headache, and to bring her to the hospital the next day if it didn’t get better. Fortunately, she was feeling better by the next day--not completely pain-free, but improved. She still has back pain on occasion. I will be sure to bring this up at her next onc appointment and with her orthopedist.


Katie had a lemonade stand at our community garage sale this past Saturday. She was SO excited about it because she wanted to raise money for the Leukemia Society's Light the Night Walk. This was all her idea. She made the lemonade from scratch (I helped a little) and sat outside for hours with her cousins Samantha, Christopher and Timmy. She was too timid to talk to the grown-ups, but this is what I overheard her saying to a few children that came by... "Will you buy some lemonade from me? It's for the Leukemia Society. The money is going to help kids just like me, and even grown-ups. I have leukemia." It brought tears to my eyes. Of course, the kids had no clue what she was talking about. They just wanted the lemonade. Katie raised $73.22!! We are VERY proud of all her hard work and are very thankful that her cousins were able to help her.

I've had a few people ask me how they could join our team, "KATIE’S WISH", for the Light the Night Walk on Saturday, October 16. Click here for information on how to register.


I'd like to share this beautiful tribute to Katie that our14 year-old niece Samantha wrote for a school project...

KATIE'S BALLAD

Born Katelyn Elizabeth Harr
January Twenty One
Radiant like a bright sun
Shining like a star

Then your first birthday came
Then you turned one
Here the fun's just begun
And you were never the same

When you were just two years old
Bad news came
You were in bad pain
You were very bold

You're much better now
With smiles on your face
Living in a happy place
Where you can take a bow

Four years old you are now
Mood swings take your life
You thought four is full of strife
You always ask how

Disney Channel is your thing
Cheetah girls go meow
Pixel Perfect goes wow
Kim Possible rings bling bling

Dancing is your magic art
Swimming cools you down
Your cooking makes a sound
And you are very smart

To let you know I care, I'm there
Loving you is great
I'm always by your side Kate
And this I declare

By Samantha Todorovich

Thank you, Sam!!!!!


Katie goes to her next CBC and IV chemo appointment on Wednesday morning, May 26 and on Monday, June 7 to see her orthopedist (Dr. Dormans) regarding her osteoporosis. Kyle is scheduled for his MRI on Saturday, May 29. We’re praying that everything goes well for both of them.

I hope everyone has a wonderful Memorial Day weekend. Many, many thanks for your continuing thoughts and prayers! Until next update....

NEXT: June 8, 2004 -- Maintenance #4 (Days 22-41)
high ANC again, increase chemo again, steroid funnies, visit to Orthopedist, swimming, Make-A-Wish, Kyle's MRI results


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