Hi Everyone!!

Wow, it's so great being home! We are having a tough time financially and with no insurance and 2 kids with diseases, it's scarey, but I keep saying our worst day at home is SOOOOO much better than our worst day in the hospital!!! PTL!!!

Kyle gave us a scare, I woke up one morning and heard Kyle yelling..."Moooom!"....."Mooooom"..
I SHOT out of bed and raced up the stairs to his room. I opened his door and he was laying face to the wall quietly..I thought to myself, he is sleeping. So, I figured maybe it was one of the twins, so I started to shut the door and as I was shutting it quietly, Kyle yelled again "Mooooom".

My heart dropped. I immediately new something was terribly wrong. I rushed to his bedside and started drilling him with questions as calmly as possible. His response was, "Mommy, I can't move, it hurts everywhere". I felt him and he was on fire. I went cold. I looked up at Jerry who had raced up the stairs behind me and he was pale. We calmly told him he just had a fever, that everything was going to be fine and left his room while Jerr stayed with him.

I raced down the stairs and grabbed the phone and thermometer. Then I opened the cabinet and realized we were out of Tyelenol! All we had was Motrin and he's not allowed to take that.

I went back up and took his temp and it was 104.4! I called Jerr into the hall and told him we were out of Tylenol and he raced back down the stairs grabbed his shoes and keys and was out the door to the store that is 5mins away.

I took the time to call the emergency line at UCSF to have the Dr paged and would you like to know what she said?

She said, "Well, he doesn't have a port anymore, so, we just treat him like any other boy and kids get sick and get fevers. Give him some Tylenol for the fever and we'll oberve him. I'll call you back this afternoon and see how he's doing.".

I was speechless! The only thing I could think to say was....Oh, um, that's, um, weird, ok, um thanks and we hung up.

You see, for seven long years, he's always had some sort of central line to his heart and has never gotten sick the short spurts he didn't.

Our usual routine is:

Fever,
Call the UCSF ER Dr, While racing out the door
Bags are already packed in the car in case of ER
Race to the local ER, while Dr calls them ahead of us
Straight back to a special isolation room
Drama of starting antibiotics (Shots in legs or Iv Drip)
Life-Flight up to UCSF
Coordinate sitters or pick up other kids
Stay at UCSF for God knows how long
Miss work and Chaos

So, to just give Tylenol and Observe was such a weird blessing!!!!!!!!!!!!!

Looking back over the whole event I realized that Chemo never left Kyle's side. Normally, he shoots out of Kyle's room in the AM and whines to be let out to go pee. He was so protective that he kept laying accross Kyle's face and neck. I had to get a picture of it, so I did!

I can't wait to load it onto the website so you can all see it!!!

Anyway, after about 45mins of Tylenol on board, Kyle mentioned that now only his head hurt. I questioned him and he said that before, his head AND his Legs hurt. OUCH! This worries me greatly, Every relapse has started with Fever, No symtoms, Legs hurt. Please Pray.

So, as I said, our worst times at home are better than any of the past!

Please don't take your normal chaos for granted and let it get you down. We are living proof, that it could ALWAYS be worse!!

May God bless you all with Peace and Serenity in the challenges of your lives.

Love,

us

State: beachfeet13@yahoo.com

Sean is doing GREAT at his new job! He is cashier at Longs (Soon to be CVS) Drug Store!! He also got his driver's license!!!! My baby's growing up!!!

State: beachfeet13@yahoo.com

Dear Katrina and Jerry,
Thanks for the post. Of course, we will continue to pray...for all of you.
We are pleased to hear about Sean's maturity and successes...a job and driver's license...
We are praying that by the time you read this note, Kyle's fever will be all gone...it must be hard to figure out how to live with this 'new normal'--
Life is so fragile, and you have lived so intimately with that knowledge...
This morning I was comforted by the picture of God's love in Deuteronomy 33:12: "The beloved of the ord rests in safety--the High God surrounds him all day long..." Know that God calls each of you His beloved and, in Him, you are safe.
Love and prayers,
Jan

State: jskauge@frontiernet.net