Our eleven year old granddaughter has been diagnosed very recently with DIPG a very aggressive brain tumour. She and her parents live abroad and are finding it hard to know where to turn. I am trying to support them long distance. They are searching for the best treatment they can find. However, it seems to be a minefield. Thanks to Macmillan they have been given contacts. The survival odds are very poor. I understand wanting to do everything possible to save a young life and at the same time wonder if palliative care and making the very best of the time she has left is a better option. I will support the family in every way I can whatever they decide. I think this is one of the hardest things we have ever faced
Hi kelly73, just spotted your post reading through and realised you hadn't had a reply yet. I firstly want to send a virtual hug to you in what is a very difficult and heartbreaking situation. It's bad enough this horrible disease targets adults but when it strikes children who have only just begun their life journey it makes me mad.I'm in the womb cancer group and the people there are very help
and supportive..it's been a lifeline for me to post my worries and concerns but also just to gain from people's experiences. If you post in the brain tumours group or diagnosed at a young age youay find that you gain more information from people on there and more coping strategies. You have already made a good start by contacting the Macmillan advisors who have given you contacts for your mily to use. I expect a champion will be along soon who will be able to guide you to further forums and advice but in the meantime this will push your post back up to the top of the page and highlig it again. In the meantime I will hold both you,your family and your granddaughter in my thoughts and prayers. The advances and research into cancer has advanced greatly so please try to remain posive although I do understand your reasons for contemplating palliative care and whether that would be a better alternative. It's such a hard decision to make. My love to you and your family. God bless. Love lamb. I'm so sorry my little lamb has photobombed this post. I do hope you can make sense of it. Sometimes he behaves and just appears at the end but at other times he just has to get in between every word just to annoy me and make his presence known! Xxxx
I'm so pleased that your daughter has spoken to a doctor and feels a bit better today and that your granddaughter has rested. I think that is good advice to take the days one at a time and keep a potive outlook. I will keep you all in my thoughts and prayers. God bless and stay strong.xxx lamb.
