5 yr old With Cancer Help!

[Nevaeh]

Hi I have been registered to this site for a while and read lots of posts but never answered to any as I have been side tracked.
I have wanted to write this for a little while now but on another site I'm on all I got was Awww poor thing aww I'm sorry take a bath and understand your feeling get to find your innerchild and understand it and know it's ok to cry... I don't need that sort of rubbish I want up front answers and support. I hope you lot don't say things like that now I have just wrote it ...

My Daughter 5 years, was diganoised with Hodgkin Lymphoma just 2 months ago. She's been having her treatment and we are on round 2 day 5 of chemo... 2 days ago we had a huge bomb shell thrown at us. My daughter and I was called into the doctors office and they said we have some news for you your daughter isn't in first stages of cancer she is in the second stage where we thought she only had cancer in her neck turned out to be in her neck and chest too...

It sounds odd but we was really coping well with the fact she was in stage 1 but now knowing she's in stage two i'm not sure I'm coping so well I have an illness myself fluid on the brain and it's really playing me up however I have nothing to whine about when my daughter who is so young is coping with cancer so well. How do you keep smiling and saying everything will be ok? My head keeps spinning what if they missed something else... They told me if they knew she was in stage two they probably wouldn't of offered this treatment to us so know we have to wait for this treatment to finish only 3 more infusions and in two weeks my daughter has 6 different scans and then a few days later we find out early july if my daughter will need to start a different treatment or if they will just do radiotherophy... My heads spinning and all my mates are saying how well I'm coping and how brave we all have been and how amazing my daughter is and I admit my daughter is out of this world. I have so many doubts in my head about this treatment and if it worked and we are out of savings now we have nothing left to keep getting us to hospital... I'm scared for my daughter...
Has anyone got any advice please? Thank you so much for taking the time to read my post...

what hospital is she in? there are a few charitable trusts that help with accomodation and things like this, have you spoke to the local pals at the hospital?

What sort of advice are you looking for? If it's the sort on how to cope with everything then I expect there are special support groups for parents with DC who have cancer - there are people on here whose DC have had cancer, some who have lost them.

I am for you that you are going through this and hope that you are getting some practical support.

You aren't in the UK, are you?

MrsDrOwenHunt
We are At Gosh we are staying in the hotel they have on offer but we are on income support and we have had some grants but however we spent all that on travel and things we needed and claiming the travel back has been shocking coz most of the early appointments where via phone calls of coming in the next day they wasn't put on the system so they tell me so out of £346 we got £32 back

Thumbwitch

We are in the uk... I don't know what advice really just ways to cope I guess how have others got through it and how they have managed with the questions the child brings up and I have been honest with my daughter from the very start... She knows everything

OK, sorry I misunderstood your reference to costs and the hospital.

Is there are Ronald MacDonald house near GOSH? I know there is one near KCH - they are for use by the families of children in hospital. My sis used the one near KCH when her DD had her brain tumour removed. Her DD was only 21mo at the time though so didn't really ask any questions.

Talk to the CAB as soon as you can re. the lost costs - the hospital should still have records of your DD having been seen, even if it wasn't all set up on the appointment system. There may be something that they can advise - if not, talk to PALS and see if they can help out.

Re. the actual condition - being honest with your DD is important but she is still very little and it might be an idea to play down the seriousness of her condition a little - it's a lot for anyone to take on board and she might be being brave for you (hell of a stress but DC do it - and tbh, stress is the last thing she needs).

Has she got someone outside the family she can talk to? I don't know how far down the illness route children have to go before they get special help/counselling services offered but it might be something to look into.

Look for children's cancer websites for extra support - the best people to help you are people going through similar - they understand the situation so much better.

I'm sorry I can't help much more - hope I've helped some.

Keep talking to us - and I am in Australia so am often online when everyone else is in bed, so if you get the screaming habdabs at 3am, I at least will be here.

have you been reffered to the sick childrens trust? also bug the dss they just need shoving sometimes, have you had a community care grant?

My ds had leukaemia so I can understand a little of what you are going through.

You will be able to claim Disability Living Allowance after 3 months of diagnosis. It is universal and not means tested. There are other levels of benefit if your child is seriously Ill which are dependant on your income. You need to request to see a social worker at the hospital who can help you deal with and possibly fast track your claims.

Clicsargent is an amazing charity and I believe they may issue grants to families in need. You need to speak to a social worker or even other parents in similar situations who will guide you in the right direction.

Good luck and if I can help in anyway please contact me.

this is a helpful site

thumbwitch thank you for your support and advice...
I will look into pal's i know they have one in the hospital but never really knew what they was for giggles... I'm not one for really asking questions...Feel like Im being silly or putting others out..

MrsDrOwenHunt no we haven't been refured to anything at the moment its still very early on... We did have a grant but that had to pay back the loan I had to get out at the very begining to get her back and forth to hospital not being funny but income support dont have anything spare to beable to deal with things like this and the little savings we had all went on travel each trip before 10am cost us £46.80 to get here.... And we came almost every day for 3 weeks...

Alouiseg thank you I will look into these clic have been amazing and they got us a grant and been very supportive...

and thank you greatly for the link I will look at that soon.. I have to run over the hospital soon with my daughter so she can get her chemo.. so I will be back later on..

thank you every one for all your support and not doing the aww hugs and find your inner child cry stomp your feet and act a fool hehehe love this site...

hi neveah.

i'm sorry you are having to go through this.

i have no practical experience at all, but have worked as a play worker.

i'm sure GOSH mush have them there...they can help your dd to express herself if she wants to, or can just provide some fun times while she is staying in....can you ask on the ward?

re your dds questions...can you reply with "well...what do you think?" and taken it from there.

i think if it were me i would answer honestly but without too much detail iykwim. can the hospital give you any info or books as to what to expect?

i hope that you are all on the up very soon. x