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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.


( 4 comments — Leave a comment )
Dec. 17th, 2007 10:07 pm (UTC)
You might try getting in contact with Megan & Doug, whose daughter Sian has Cystic Fibrosis.
Dec. 18th, 2007 01:56 am (UTC)
Generally, the child with the illness comes to terms with it faster and easier than the family around them. They talk to other kids at the hospitals and clinics, and find their own understanding. They see more hope in the darkest possibilities than adults do, because they are not yet old enough to have been taught to imagine the worst, or to have even learnt what 'the worst' could be. The best thing with the other child is to get her involved in finding nice things to do, which are nice for her as well as her sister - special treatment that is her idea will always be more acceptable than special treatment that someone else thought up. I know someone who is involved in the 'clown doctor' program in the hospitals - she has a great insight on what people can and can't do in the face of such things - I can try to track down a current email for her.
Dec. 18th, 2007 12:20 pm (UTC)
Firstly, my sympathies to your friends. Having a sick child is not easy, and something as serious as this is just awful for all concerned. I'll send out good thoughts and blessings for them.

Secondly, in order to answer your request for suggestions.

I don't have cancer but do have crohn's disease and have been on chemotherapy drugs for five months, with the idea that this will be an indefinite method of treatment for me.

As parents, our main concern is to give as much of ourselves as possible to our children. Particularly in circumstances like this. My very first bit of advice to you is that the parents need to set aside some time for themselves. It sounds cruel and heartless, especially if they're thinking that time with that child might be running out. But it's only by keeping our sense of self that we remain strong and don't build up 1) the possibility of resentment towards the sick one and 2) the possibility of them feeling guilty for taking all our time.

My other suggestion is that if the child has siblings, parents should take shifts - one with the sick child, and one with the healthy one/s. This way the healthy ones aren't hanging around hospitals or sick beds being bored and feeling left out. It only takes one person to be around for Miss Sicky. Take the healthy one out to do something for them on their own terms, their own interests.

Chemo is exhausting. The muscles will hurt, the joints will ache, and it makes you feel ill. Chances are that the sick child will just want to have some peace and quiet and no fretting parent hovering over her. I'd suggest taking a couple of books and magazines and sitting next to each other just reading, cuddled under a blanket. The contact is very comforting and the quiet time can be really beneficial. Obviously this depends on the personality of the child but it's worth a try.

At this time, it's possible that friends of the family will offer their help. "If there's anything I can do..." YES, take the help. You'd have to be specific about what you need them to do though. Ask them to get the groceries for you. Ask them to take the sick kid shift for an evening so the parents can get grown-up time. Ask them to take healthy kid for an overnight stay if they have kids the same age. Ask them to pick kids up from school etc. Spread the load around, it makes things easier for parents and makes friends feel valued.

Good luck with this. ♥
Dec. 19th, 2007 09:35 am (UTC)
Sorry for replying so late.

Sorry for your friend and what she goes through. I agree with one of the commenters before who said the kid comes to terms with it more easily than the family. Kids don't think of death. They are so full of life. And usually that makes for a better recovery.

Not to leave the healthy one out is one of the main problems, really. And not to loose yourself in the process. The suggestions above are all very good and better than I could formulate them. Taking time, taking help (very important! Let people do the small tasks for you!)
I know that in Germany nearly every cancer treatment center has an advisory center for relatives and firends. Professional people who deal with this every day can give hints of how to make life easier in those times. Take them up on it. I can't understand why some people I know refuse to get that free help and make their lives a mess instead.

Since I haven't been in close touch with a sick kid or their parents, that's about all I can give you from a distance, except *hugs* and best wishes to the family in touble.

Have you thought about asking the renun list? There might be suggestions there.
( 4 comments — Leave a comment )



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