Making life easier for 2yr old with Leukemia

bloomin_freezing

Title pretty much says it all, last week my cousin took her 2yr old to the dr's with a limp, a rash developed in front of the dr's eyes (luckily) and she was sent straight to hospital where they did hundreds of tests and confirmed he has acute lymphoblastic leukemia. Obviously its early days but everyone is hopeful that he'll make a full recovery.

My cousin's had it really tough she turns 31 tomorrow and from being very young her mum decided she couldn't cope, so she went to live with her dad and step mum, who was as wicked as any step mum could possibly be. At 16 she got a council flat, eventually met and married a great guy, who has since turned into a cocaine addict, she chucked him out last year and is proceeding with divorcing him. A few months ago she was in court, and luckily managed to stop her home being reposessed, now this happens with her son. Life hopefully will not get any worse!!

I'm keeping things running this end for her, keeping debt collection agencies happy etc, but there's stuff she'll need when she brings him home, her buggy broke last month so she needs a new one, maybe a stroller will be ok, so long as its roomy and lies down flat completely. I've seen 'shade-a-babes' that are like rain covers but have 50+ uv protection, which she'll need so they're not stuck inside all the time, but what else??? All suggestions very welcome.

Thank you.

BernadetteN

Erm.... freecycle. You should get a great response for things there. You might even be inundated.

PS my cousin got leukaemia aged 3. She's now a stroppy 19 year old (reading her facebook entry!) I'm sure your cousin's son will have the best of care through his treatment as he's got family who are caring like you.

dumpy

She must be all in a whirl, you are fantastic for providing support.

My SD had ALL and when she was admitted the hospital staff were fantastic. There was a member of staff who helped the family sort out all the claim forms and helped with financial matters, the hospital also had a fund which provided support for travel expenses and had 3-4 family rooms (en suite rooms in the hospital to stay over night in when she was in for treatment) although she may want to stay on the pull down bed in the room it is sometimes nice to get out for a shower and sit down somewhere else.

All kinds of things can be prescribed i.e SD had sun screen prescribed as the treatment can make you photosensitive which saved having to buy expensive high factors. She also had a lot of E45 cream prescribed for her skin as it got a bit sensitive.

The family was also given a one off payment when she was first admitted to help with the fact that we had all had to travel some distance and to cover day to day expenses.

I hope all goes well for her, ALL is one of the most treatable forms so he has every chance.

floss2

Take a look at these - they may be able to give more specialist advice:

http://www.lrf.org.uk/
http://www.leukaemia.org/

And just to help ease worries, my cousin had leukemia over 25 years ago, and despite dr's saying she would never have children, has recently had her 2nd baby!

cobbingstones

I just wanted to send lots of love and hugs. What a dreadful time this poor women has had.

Please ask her to see the hospital social worker who will make sure she has all she is entitled to. I'd of thought she may be able to apply for DLA for her son.

Thinking of you all

MM xxxx

dumpy

She could be eligable for DLA for her son and a carers allowance. As madsmum says do speak to the hospital social worker they wil be able to give her a lot of support (and help fill in the forms).

lady_stardust

I would also like to add that paediatric wards have come a long long way in the last 50 years. I spent a lot of time in hospital as a kid, and I actually really enjoyed it - I made lots of friends, there was an endless supply of toys and the nurses were lovely. That was 20 years ago and things are even better now. I don't mean to belittle the situation or sound flippant at all, but the young lad's welfare is in good hands so it is one less thing to worry about.

Good luck to your cousin and her boy, and she is lucky to have such a supportive relative.

Errata

Macmillan nurses may be able to help, in all kinds of ways.

dumpy

I was thinking about this on the way home from work.

She will also receive support from the nurses on the wards. We live a distance from the hospital so there was a local nurse who spent a lot of time with SD ie blood could be given in local hospital and some of the drugs. Your friend may have this as well. I know this nurse gave a lot of support to her mum.

It's going to be a real rollercoaster road and things can go up and down so quickly. If you can help out with practical things it can be very useful.

Oh and try not to let her read internet sites about the disease. It's not helpful at this time of the diagnosis/ treatment.

mspig

my nephew had leukemia(ALL) which he was diagnosed when he was three, and hes still with us at 11years old.

Ive been around alot of children with leukemia, as at the hospital in which my son is treated for not having an immune system we are always placed on the leukemia ward when admitted and am friendly with quite a few of the mums and dads.

In regards to the buggy breaking, i'll ssee if my sister still has a phone number for a charity which she got a buggy from as alot of the time they have to be specially made as children with leukemia are put on steroids which make them grow big very quickly(my nephew is over 5'5" tall and has size 8 feet and has just turned 11 this month)

There is alot of places out there which can help, and they hospitals usually have a social worker who can advise and apply for thing.

The family fund is a government funded charity which she can apply for yearly to get things such as more bedding, clothing, things such as fridges etc and also holidays.

The main thing is at the moment is that the little one will probably be spending quite a while in hospital, and believe me they can be lonely places at times, and expensive places as parents are not given meals etc so money is spent on food most of the time, but most hospitals do have kitchens for parents to cook themselve but usually children aren't allowed in which can be hard with a toddler(my sons 2), so some help towards food for your cousin(sandwiches etc) would be good as is magazines etc.

I would also get her to apply for disability for her son, and once this is given she can claim carers.

I would also reiterate what dumpy said about internet sites they make a cut finger seem like you need your arm amputating.

But i'll have a look for a website i have wrote down somewhere which lists all different charitys and what they do.

Amanda65

Really sorry to hear about your cousin and her DS. Why is it that the [EMAIL="!!!!"]!!!![/EMAIL] seems to happen to the nice people

Anyhow, try this website

http://www.turn2us.org.uk/

there are loads of charities listed to help with all sorts of areas including illnesses, practical support and financial advice.

Fingers crossed that all goes well x