MRI results and emotions

Hi Penny, I just happened upon your blog here with a Google search. Just wondering if you know of the Facebook support groups for dipg families and if you were interested. They're a great source of info and support. I only know of one other little girl in the UK at present with dipg and a little girl in Wales. If you would like any support or info then please email me.

posie37@googlemail.com

Hi Penny, my heart goes out to you and all your family, how to get through it I just don't know and as sad as it is that my husband is on Palative care now at the end of life at least he has had 76 years of life.

Your Idea of having Chrismas is just the right thing. My grandaughter was put on ECMO in Great Ormand Street Hospital mant years ago and we thought she may not survive - but she did and whwn she came off ECMO machine she suffered 2 strokes. When I watched my son and daughter in law suffering with this 3 year old's illness I felt really useless. I met a friend and told her what was going on in my life and she said "Never give up hope, never." When she was a little better my grandaughter said "I'm going to see Father Christmas tomorrow" She had had amnesiac drugs when she becan ill on the 6th December and her mind sudden slipped back to that day. My son had to duck down behind the sofa as he was so overcome. He vowed she would have Christmas and we did and it was wonderful. All the neighbours put up the outside lights and we invited all we could to help us celebrate. Father Chrismas called and gave out presents and a wonderful time was had by all. My fab Grace is now 11, showing hardly any signs of her strokes and has passed a swimming test by doing 20 lengths.

I didn't give up hope, but I will never forget the fear and agony of that time. It still makes my eyes sting.

My very heartfelt best wishes to you all and I will add you to my prayers.

Maggie

Penny you are a champ. I hope Kees beats the stats, sees Christmas and gets some quality time next year. Do take care of yourself. I hope you have support people who can give you time to catch up on sleep with all those babies. It's important that you look after yourself too. Have a wonderful time at Disney - precious time as a family. Brave girl Kees. Thoughts Jan.

Thank you everyone for the lovely messages! We had a fantastic time at disney! I do not have facebook, but have considered creating one, but fear it would get disused regularly.

It's brilliant how much of a recovery that little grace made, sounds like she's a fab swimmer now!

Kee is still a very happy little girl but she is showing signs that the tumour has grown, her eye has turned inwards more and she has trouble with some of her speech and coordination, but she's still our Keeley <3