This is the first note on Katie's blogsite. I created this site per Kelly's request so she could get information out to everyone regularly and reliably. I am Katie's Girl Scout leader Susan Gaffney and the mother of a little girl (Emma) who counts Katie as one of her bestest friends. I will post things on here daily as soon as I get information from Kelly. Kelly will post as she has time and energy to. Between us, we hope to keep you up to date.

We'll go back and give you history of this story on the next posting but for now we just wanted to get a site up and running. For everyone out there, you have to agree, knowing Katie is a real treat. She is a fabulous 10 year old with an infectious smile and sweet disposition. She is loved by all who know her. Every mother wants her for a daughter and every child wants her for a friend. She loves Jonas Brothers, Hannah Montanna, kittens/puppies and volley-ball among other things.

This past week, Katie had some headaches. Don't we all? Nothing that really stood out as worse than your normal headache. Then her left arm and leg started giving her trouble, her smile became lopsided. Through this Kelly was trying to get her evaluated and helped. What could cause a healthy 10 year old to do this? Well St Alexius didn't know, St Louis Children's Hospital didn't know. Katie's pediatrician knew this wasn't right, Kelly knew this wasn't right (certainly not due to a sinus infection which Children's had diagnosed) Kelly kept pushing till someone acknowledged this was serious.

Cardinal Glennon Children's Hospital has finally given Kelly a diagnosis today. Most of you know that Katie has had several small strokes, probably over a period of time. No one knows when they started, there is no way to tell. What has caused Katie to have several small strokes that have affected her left side is what is called Vasculitis. It is a very rare condition and there are many types and forms but none of them are good. The underlying cause of the vasculitis is due to hyperactive immunological damage. (which basically means your body is attacking itself) Immunosuppressants may be used to stop it. The Rheumatoidologist has reccomended Chemotherapy for treatment. Vasculitis can affect any body organ at any time and can cause alot of damage. Untreated, the prognosis is very grim. The diagnosis is not a absolute but so far all the docs are agreeing that this is what has attacked our Katie.

Katie has been a major league trooper through all the testing so far. She has gone through more testing than most people do in their entire life. She has had a CT, MRI, spinal tap, blood work, more blood work, angiogram, echo and more blood work. There is surely more but that is what I know about. Through it all Katie has bravely smiled and can explain it to any and all. She is amazing!

This has been really hard on her sisters, Erin and Mary. They have been a major support to Mom while trying to maintain all their school work and help keep Katie from going stir crazy in the PICU (Pediatric Intensive Care Unit)

What you can do? Pray, Pray, Pray and then pray some more! Keep in your heart:

I can do all things through Christ who strengthens me." Philippians 4:13
God is our refuge and strength, a very present help in trouble. Psalm 46:1

That is all I know currently
I'll update this later today after I talk to Kelly.