Kee vs DIPG

  • 6th Birthday!

    FormerMember
    FormerMember

    We made it! Tomorrow Keeley will be 6 years old and we are throwing the most fantastic birthday party for her, we have all her school friends coming to the house, bouncy castle, games and all sorts. We gonna spoil her silly!! I can't help but think that this will be her last birthday, so I want to make it amazing for her and all of us! 

    We also had the results of her MRI, the tumour has grown which is causing her symptoms…

  • Disney

    FormerMember
    FormerMember

    What can I say, to see the smile on her face as she met elsa and belle and even nemo was worth every minute of pain we've had the last few months.

    To see a 5 year old full of joy dispite being so so poorly, we had the very best holiday we could have asked for! We met all the princesses, had daddy dressed up in matching elsa dresses. Since we got back it's all she's talked about, sadly she has also deterioted, her…

  • MRI results and emotions

    FormerMember
    FormerMember

    We have had a good start to our week, we had our MRI results which showed Kee's tumour is stable and has shrunk, her eyes have improved, but aren't perfect. But we got the ok to go to disney so we have booked for all 6 of us to go in June and we are looking forward to that, fingers crossed things stay as they are so we can enjoy it properly. 

    I now also feel so selfish for feeling overwhelmed when she is the one…

  • Radiation & Steriods

    FormerMember
    FormerMember

    We are on our second week of aggressive radiation treatment, we are on steroids (prednisolone) to try reduce the inflammation around her brain from the radiation, seems you have to treat the treatment as well as treating the tumour! Kee is being amazing, truly brave little soul enjoys playing with the other children. GOSH is an amazing hospital, can't thank the nurses and doctors enough, very supportive and they love…

  • Probably the hardest talk i've had

    FormerMember
    FormerMember

    We decided to tell kee what's going on and why she is so sick. It was probably the hardest thing I've had to do so far in my life, we told her that there was a nasty bump inside her head and that's what's been making her poorly and that's why we have to see the doctors in london on monday.

    She asked when the bump will go away and we explained that the doctors will try make it go away, but they might…