Children with cancer

[KinkyDoritoWithFairyLightsOn]

Hi all

I'm going to start this and keep bumping it as I don't think there is a thread for supporting anybody whose child has cancer and I know there are others about. In part, this is a good thing as it shows that it is still very rare, however it doesn't feel like that when you are sitting in a children's oncology ward.

I will be around and am happy to chat to anyone who needs it.

My DD is 13. She was diagnosed with ALL in January. She has to have 2.5yrs of chemo in total, if everything goes according to plan.

I also write a blog that is listed on MN. The catchily titled: The Acute Lymphoblastic Leukaemia Diary.

Best wishes to all.

May I join? Just beginning this dreadful path.

DD today diagnosed with cancer of the appendix.

Waiting to see extent of the spread now.

Hi oneday welcome to the club. My DS was also diagnosed this month. The first days are horrific, waiting for treatment to begin etc. once it all starts happening, it does get a teeny bit easier, like you get to breathe out just a teeny bit.

Thoughts and prayers with you and your family tonight.

Oh dear, I have just posted on your other thread Oneday, but I see you have already found this thread.

It is very hard until the doctors knw exactly what they are dealing with.

And having read your other thread, my Dd, of similar age at diagnosis, didn't tell her friends immediately either.

Sending more hugs and prayers for your Dd and family.

Hi everyone, Farlo here in Halloween guise. We have been very busy with DH, took him back home to see his DB for a while which was good but he has had some complications so we have been in and out of hospital like yoyos trying to patch him up. I have been dipping in and out of MN a little and I have been keeping up and thinking of you all but I haven't really felt up to posting until now. Good news though is that DH's tumour was benign and he's doing mostly OK considering, also DD was one year off treatment last week which is just fab.

Trazzle how is your DS doing? Hope he's bearing up and responding well.

minmooch I'll be thinking of you this week and hoping you get very good news from the scan. It's the least your DS deserves. I am so sorry to hear your DS is so upset and frightened, that is just heartbreaking . It's so damn unfair. I will be keeping my fingers firmly crossed for him. I loved hearing about his really good day, made me .

Kinky likewise I am sorry your poor DD is so dreadfully low and the iron issues continue. I am just so for everything these kids have to tolerate. for you and DD. I hope so much that things improve for her soon.

Hi Daisy, really sorry to hear of your DS's diagnosis, but great the chemo has been so effective in shrinking it. I hope they get the treatment plan finalised soon and it all goes without a hitch.

Queen I hope your DD is back on top form and not stressing you out any more. Bastard autumn/winter cold season is always so stressful.

So pleased your DS is doing well stinky. Fingers very firmly crossed for his scan.

Hi oneday, everything crossed for your DD also and so sorry this has happened to her.

Hi Oneday welcome to our support group but I am sorry that you have had to join us. I hope treatment starts quickly for your DD and that she has a relatively smooth ride. We are nearly a year into this journey with my DS (16) having an aggressive malignant brain tumour. How old is your DD? We are hear to listen, give (unmediated advice) and (virtually) hold your hand. I have found it invaluable to be able to have somewhere where I can say it as it is.

Farlo - good to see you. Glad your dh is doing ok considering everything . Your DD one year off treatment - that is fab!

Off to hospital today for eye appointment and chemo. Friday is the scan and stress is building big time - my jaw is so painful from gritting my teeth at night

Fucking bastard cancer

Just got to keep on keeping on!

Love to all

Xxxxxxx

Umediated should have read un-medical!

min I will be thinking of you all this week.

Oneday I'm really sorry you have had to join us. If there's anything we can do to help or advise, just ask.

Farlo It's sad to see your post because there are so many of us. I hope you are all doing well - you've been through so much recently.

I'm off this week and I am dreaming about work. I'm so worried about everything. Under so much pressure. If I could afford to take unpaid leave, I would. I am being pulled in two directions.

Kinky how's DD? Is she coping any better? I'm not surprised you're stressed.

Hi trazzles I hope you are all doing okay. She's a bit brighter, but we are off this week so it means she has me here. Also, we do things - like we will bake today. I think I'm going to have to try and take her to school when we go back and see how she manages. If it goes badly, I will have to decide from there. I just want to be 7 months from now!!

Thanks

Bumping to see if name has changed back again...

Nope. Will need to try again. Sigh.

Heh. A last [hsmile] as we wave goodbye to Halloween for another year.

Glad to hear it Kinky long may it continue.

I appear to have eaten all the rest of the chocolate in the house. There was a lot... I've tripled my body weight...

DS is doing fine at the moment though a recurrence of a really itchy rash means he may be taken off Etopiside and given something else instead.

I'm really struggling though. A few days at home and terrible news last week about another child at the same hospital with the same condition means I've been crying non-stop. I've been getting hold of more info and it seems that, if DS relapses (hoping we even get that far!) there is no NHS programme to deal with that so we would need hundreds of thousands of pounds for treatment abroad.

I feel absolutely sick.

We have a bit of equity in the house (DH's inheritance from his parents) do now we're having to think about selling up and moving to rented accommodation - on the possibility that we might need this money.

This bastard disease is robbing us of fucking everything and I fucking hate it.

I read a piece in the Guardian the other day that, after accidents, neuroblastoma is the biggest killer of children in the country. It's just constant constant constant doom and gloom.

Trazzles it is very hard hearing about the other children. It does not mean that it will happen to yours, and you have to keep telling yourself. We lost 4 this year who were in with us at the start of treatment . Many people start fundraising for neuroblastoma to pay for treatment. I know a couple of the children have pages, perhaps consider this? There is a charity that co-ordinates all of these things and they might have some ideas. It is so unfair that you should have to forfeit everything, but at least the money is there should it come to that. I really, really hope it doesn't. Sending love and unMN hugs.

Wise words Kinky. Thank you. I think it's just a combination of everything at the moment: PMT, bad news, being home for a few days so I can finally breathe...

I just need to focus on how well DS is doing, the positive stories I have heard and must NOT think about his first scan coming up :D

Trazzles, ((hugs)) I remember all too well how I felt when the other child on the ward who also had a higher risk case of what DD had passed away. It is just dreadful. As Kinky says, a lot of families start fundraising in advance. The two families I know have had fundraising pages with FAN here and published them widely and they and friends and family held regular events and did car boot sales etc. to build up their pot in advance. They both raised quite a lot. It is a wise precaution, although hopefully, as with the little girl who lives closest to us, you will never need it and the front line treatment will be plenty.

Kinky, so glad your DD is brighter, I hope you have a lovely half term with her.

min everything crossed for you for tomorrow.

Hi All

I've been reading the thread (not got through it all yet) what a fantastic supportive bunch you are.

Seeing the comments here about money - may I ask what do you lot do re work if you were working before?

It's early days for us, but am learning rapidly about hospital time I think it's a ratio of 1:2 (1 hospital hour to 2 normal hours) isn't it?

We are smack bang in the middle (half an hour if no traffic to each) between the hospital coordinating treatment, and where they will be doing the treatment, so lots of travelling involved.

Work being good at the moment, but I don't think I can a) maintain the stress of worrying about that I should be at work and b) whether work will keep me on.

Has anyone come up with a workable solution yet?

Hi One. I was given leave at the start - 9 months - whilst she was on intensive chemo. I was then due to go back full time for the rest of treatment (a further 10 months). It has been rocky, to say the least. I have no money and no choice but to work. My salary is good (main earner). DH isn't DD's dad, so no point in him giving up - she wants me, not him especially when problems are intimate. Anyway, if you can afford not to, and you think you could restart after treatment with little difficulty, then probably easiest to not bother. You can apply for benefits like DLA, Carer's Allowance - social worker at hospital should help you. But, you have certain entitlements whilst in work. If your DC is covered by disability act, they cannot discriminate against you. You are entitled to up to 18 weeks of unpaid leave. You could also get signed off with stress as that would be understandable. There are different things that you can do.

Still stressful though .

If anyone wins the Euro millions, spare me a thought .

Should add, apply for DLA anyway as it is not earnings related. I get in even though I work, but it rarely covers the hole made each month by the unpaid days off I take with DD.

That's interesting - I'm going into work tomorrow for the first time since diagnosis, so I'll go to HR and see what agreement we can come to.

Fortunately I'm not the main earner in our family, but of course not having my wage will have an impact on us as a family.

This may sound daft, but can I apply for DLA even though she's not "ill" at the moment - me in denial never!!! - but she needs no "extra" care to look after her.

oneday Ive been told today that DLA won't pay until 3 months after formal diagnosis...

I've been able to keep on maternity leave to cover the first load of chemo, though obv I'm unpaid. After that, work are letting me go in as and when I can. I'm lucky.

Let's hope my numbers come up (and then I'll share) or my work are as good - one or the other not fussy.

Can't think straight - scan tomorrow, results 13 November.

Its been a year today since i took DS into hospital for sickness and headaches. 3 hours later a diagnosis of a brain tumour - what a year .

Sorry cant think straight enough to advise.

Love and hugs to all xxx