My Story

In Dec 2005, at 15 months, Katie was diagnosed with stage 3 neuroblastoma nmyc amplified. Her treatment, at Alder Hey Children's hospital, was completed in April 2007. Katie has a neuroblastoma funding-raising page http://www.justgiving.com/suepilkington

Updated Feb 2009 - Katie relapsed in July 2008 As of today we are awaiting a date for surgery. Please check journal for updates.

Journal

Monday, May 25, 2009 2:41 AM, CDT


Katie had her peg tube fitted last Monday, she stayed in hospital overnight and came home the following lunchtime. The procedure went very smoothly and I was shown by the hospital how to use the peg and how to look after it to prevent damage and infection.  It really is very simple.  Katie is fairly happy with her peg and understands that it has been done to stop her having to have horrible medicine in her mouth and that I can feed her this way if she doesn't want to eat.

She was well enough to go back to school on Wednesday for a few hours with me staying with her.  On Thursday I left her alone in school for a few hours and on Friday she did a full school day alone.    She came out of school on Thursday very excited, her and two friends had made books in class and were asked to go and show their headmistress their good work.  The Headmistress was very impressed and gave them each a certificate, a sparkly pencil and a Twirl chocolate bar!  One of the pictures in Katie's book was a drawing of herself with lots of squiggly lines on her tummy she told me that that was her peg.  Apart from being funny this shows that she is obviously very comfortable with her new "body part".

She has been having oral chemo twice a day since Wednesday, sometimes I have done it while she is asleep but she is happy for me to do it while she is awake, usually while she is watching Cbeebies.  She enjoys taking part in the procedure and I let her flush the peg with the water in the syringe.

It is half term this week and Johnny and Luke went to Anglesey yesterday to stay with  their Aunty Julie and Uncle Paul.  All being well we will join them with Katie on Wednesday until Friday.  Another first for Katie happened last night, she had a "sleepover" at her Aunty Sharon's house, this was Katie's idea entirely. 

Everything is going well at the moment and Katie is showing no signs of sickness from the chemo, long may it continue.

Guestbook

Guestbook signed 0 times today.


We cherish your messages. Take a moment to write a note in our guestbook or read entries from other visitors.

5535 VISITS FROM FAMILY AND FRIENDS

HELP SOMEONE ELSE WHEN THEY NEED IT MOST

Tell a Friend about CaringBridge.

Help CaringBridge provide this free service to others who need similar support.

TRIBUTE DONATIONS TO CARINGBRIDGE

Read the caring tributes in honor of Katie.

Make a Donation in tribute to Katie to provide CaringBridge to all families who need it.