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Original topic post: Brain Tumour & DIPG
posted: 03.06.2010
message: A friend of mine has a little boy who was diagnosed with DIPG in 2008...he has just turned 5..but of course anybody who knows about this one..time is very limited. I am fortunate to have 2 healthy children but am witnessing my friends rollercoaster with my heart in my mouth...I am doing a 5km run for him in Glasgow this Sunday and have been completely humbled and blown away by people sponsoring me (some giving me £50 who I have not seen in 20 years! amazing) but I know they are doing it for the little guy I am running for, because as you are all aware this is any parents nightmare. I am only too aware that this is a reality for so many. My friend is really campaiging for more research into childhood cancer..which when I look into the statistics I am astonished. We need to raise awareness and do something. I cant sit down on my butt and pray and send my thoughts to my friend any longer..I want to get off my butt and organise fundraising events to try and find a cure for these poor innocent victims because if I was ever in the position that my child was to be diagnosed I would want every man and his dog out doing what they could for my child.
So... I just need to connect with people especially in Scotland who want to raise awareness of the need for more money into childhood cancer research.
In hope,
Siobhianx
Reply 1: dipg
written by:
happykika
posted: 17.11.2010
message: Hi Siobhian, im just writing to you as my nephew has been diagnosed with DIPG which is so rare that we have found it very hard to find someone to be able to talk to. my sisters son is 5 years old and was diagnosed on 9th sept this year and has just started his radiotherapy and chemo. his life expectancy is around 6 months, and even though we are devestated, we are making everyday happy for him, but know the worst is yet to come! We live in the south in Christchurch, Bournemouth, Dorset. Do you think your friend would be able to to talk to myself or to speak with my sister, i know it would help her in a big way. And i know it would be very hard, I feel deeply sad for your friend, to be told all of a sudden your beautiful child will be taken from you with no real fight for him. Sendiing a big hug from Christchurch with kindest regards, Enrica. x
Reply 2: dipg
written by:
jhardwick
posted: 22.03.2011
message: hi there my son was diagnosed with dipg in jan, he is 4 years old. he has just finished a 6 weeks of radiotherapy, but have to wait a long 6 weeks for the scan to see if the tumor has shrunk, even if it is good news we know it is just a matter of time before it starts to grow again. i can't look at my son without crying.
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