Help/advice please if possible
Yes - I am still alive but just been hibernating.
A girlfriend of mine called me last night to tell me her 10 year old daughter has Langerhans' Cell Histiocytosis. It's not exactly cancer but is treated in the same fashion. She's having chemo atm (luckily it's a low dosage) but is currently confined to a wheelchair.
Her mum's been told that under 5 years it's mostly fatal but at 10 years her daughter has a good chance to get through this. Luckily it hasn't hit the lymph nodes and is contained in the bones only (so far).
What I'm actually after is suggestions and advice from anyone who has been in contact with a child that has had such a major/life-threatning illness that will give both the child in question some help - as well as her younger sister and parents.
The oncology unit has given them some ideas (Camp Quality etc). There are 2 other kids in the major area at the moment with the same - but they are both younger than this lass so I suggested that her parents see what other support groups are around in her area for children that have similar issues.
But my encounter with cancer was with an adult not a child so there are likely to be things that I'm just not thinking about.
I suppose what I'm looking for is more personal info than clinical. Like has anyone had contact with Make A Wish Foundation. What is about to help a sibling who (while not intended) may start to feel neglected because all activity centres around her sister?
Any suggestions and advice will be greatfully received.