Children with Cancer

[Twunk]

The thread you neither want to join, nor leave.

We send our love to Minmooch whose son Will sadly died this week. Min, we hope you feel able to contribute to this or future threads when you feel able.

My son Alex, 4, was diagnosed with Acute Lymphoblastic Leukaemia on 26 July last year. I don't think anything can describe that moment when your world falls apart. You think of suffering, pain, and the very real possibility you may lose your child. Mumsnet has been a wonderful source of support and I have "met" some lovely people through these threads.

If you are in the same situation as us, or wish to show support please do join us. Sometimes people have questions on how to support a family who have just received a diagnosis - we are very happy to help.

Much love to all xxx

Welcome humble - sorry you've had to join us

Bless your little DS

oxcat thinking of you and yours this morning. Sorry to hear you're in hospital too - I hope you're out of there soon.

Love to all and happy fathers' day to all the dads xxx

Hi Humble so sorry to hear about your DS, it sounds like you're having a very tough time. Glad to hear he's a happy little man despite everything.

Oxcat sorry to hear that you're in hospital too. Hope you get some answers regarding your niece. I hope getting some answers can help in a small way.

Regarding essentials, I agree with everyone else. Some things that helped us was rotating a bag of toys/books to help with the boredom.
-Upload some games/cartoons on ipads/phones.
-It sounds a little superficial but I like to have nice smelling miniature shampoos/shower gels so when I finally get to have a shower (usually with the door open to prevent meltdowns ) it feels like a tiny treat.
-Batch cooking favourite dinners/comfort foods etc was also appreciated as hospital food appears designed to be as unpalatable as possible!
-Finally nominating someone to pass on news to other family members helped as I felt quite overwhelmed by all the texts/calls (albeit well meaning) in the early days. Hope you're feeling ok yourself and get out of hospital soon

I'm sure to jinx myself by saying this but it looks like we're getting home this afternoon and he doesn't need another transfusion....yay!

Hello to humble and oxcat, sorry you're here but do keep posting if you find it helps.

With regards to lists for hospital, I agree with what everyone else has said. I find hand cream helpful as they get dry from all the hand washing and anything to provide distraction, toys, games which can be played in bed like magnetic games small jigsaws etc. someone bought my DD a portable DVD player and that's been great.
Also think it's a great idea to nominate someone to pass info on to others on your behalf. Don't underestimate how consuming it is to have the same conversation over and over again. Although people mean well, you're constantly reliving it all.
Don't be scared to ask for help either. People want to feel like they're doing something so ask for lifts, meals, babysitting etc if needed.
You may also meet a CLIC Sargent social worker, they're there to support and can help with financial matters. Don't be scared to ask for help.

We've just escaped after three nights in with a virus. So having a lazy day at home today.

Love to all

Thank you. She had her MRI this morning so waiting for results.

I have bought her some DVDs as there is a DVD player in the room, but now worrying as apparently her sight has got a lot worse this week, with now no sight at all in one eye, and very little in the other.

Does anybody know whether audiobooks can be played in a DVD player? Would it be incredibly frustrating to be trying to watch a DVD when you can't see? I will buy audiobooks instead but not sure how you play them without a CD player?

Thanks for good wishes for me too - yes, been in 5 months after a sudden seizure and lost the ability to walk. Lots of rehab. And frustratingly completely unable to do anything at all to help anyone....

Hi humble, sorry you had to join us but glad you have found us. Xxx

Oxcat - yes I think you can play cds in a dvd player, you certainly can in mine. Also these days you can pick up mp3 players incredibly cheaply - my kids' ones were 9.99, so that's an alternative.

I just came on to check how things are oxcat - thinking of you and your niece xx

Thanks Twunk.

There was a tumour found, and because of the increasing pressure in her head and rapidly decreasing eyesight, they did an operation yesterday to try and drain some of the fluid. they hoped to do this via her nose, but after two hrs they realised that wasn't working and had to move to a full craniotomy, which lasted another five hours. Seems such a long time given they didn't even get to the tumour!

Anyway, she is recovering ok, but on such high amounts of morphine etc that it isn't really possible to gauge whether she feels any better, or can see any better.

There is hope that the tumour is likely to be benign, although they can't be sure. However, this tumour type does have quite a high recurrence rate so she may need radiotherapy after the surgery.

Thank you for all your messages. It all happens so quickly! I put together a bag, taking advice from all your comments, with essentials and treats for both the little girl and her mum. her mum loved it! And opened it during the surgery to try and distract herself.

Thank you so much.

Goodness oxcat what a time everyone is having! Fingers crossed the tests prove it is benign. Glad the advice has helped.

I hope you are looking after yourself and continue to make progress xx

What a horrific day oxcat. Thinking of you, your niece and her family. Glad they could operate so quickly, and i hope she's more conscious soon.

((()))

how is everyone?

Got the results back for DS1 and his speaking issues - turns out he has a language delay which is bad and not bad. I don't know really - basically I was told there is a problem, which may or may not resolve itself, and that he was unlikely to get any help with his schooling because it's simply not bad enough.

Thanks for that.

Anyway, at least now we know. I suppose.

Alex is fine though, I continue to be amazed and how well he is doing.

Hi everyone,

How you feeling Twunk? What are you supposed to do with that information? Is there further help for your DS?

How are things Oxcat?

Hope everyone else is good.

We've been in with DD since last Thursday, she's got yet another infection. But hopefully we won't be in much longer.
I've met a few new families on the ward all with a recent diagnosis. It's hard to believe we were in their position 6 months ago, it's gone quite quickly in some respects.

Hi twunk, lovely
It is i and his brother's birthday today. That also means it is 51 weeks since isaac got ill. I can't believe we have been doing this for so long - for hald his life. He is amazingly resilient. I am less so.

That sounds like a deeply unhelpful diagnosis/plan for ds1, twunk. And i hope your hospital stay doesn't drag on, lovely.

Oxcat, is it by any chance a craniopharyngioma? Not to play guessing games, but my son has this. He had to have radiation treatment following brain surgery. My heart goes out to your family.

And hello everyone. Since my son's diagnosis a year ago I have often read through this thread, but haven't felt able to post because my son's tumour is benign. It's a rotten kind of benign though, it's already in his brain, and it can come back, despite radiation treatment he had. We do of course count ourselves very lucky he doesn't need chemo. I take comfort in reading how you are all facing up to your struggles with your kids. I'm ok, but feel pretty knocked around.

Hi blackswan. Tumours are rotten full stop- i hope you feel you can post whenever you like.

X

Thanks unbuckle. xx

Hi everyone.

Twunk - how are you and A? how frustrating for you about DS1.

Unbuckle - many happy returns to your gorgeous boys. Love the pic on FB.

lovely sorry to hear you're in again. I can't believe it's been 6 months either. Hope DD is okay and you're out soon

blackswan please do join us if you feel able. Watching your son go through brain surgery and radiation must be incredibly stressful benign or not x

Hello to oxcat, brave, the new normal Trazzles, Diane, stinky and anyone I've missed.

Not much to report here. Last week marked a year since the dreadful day when our lives were turned upside down. It is/was very hard not to constantly relive it all but am trying hard to see it as the beginning if him getting better. He's doing so well, putting on weight and doing lots of normal 5 year old things . I'm already starting to think about the next scan in 6 weeks.... Please god let him stay in remission...

Hi all,
Was reminded of this thread today when talking to a friend I haven't seen in ages and some of her very innocently asked questions made me realise how normal this world has started to seem.

Hope everyone is doing ok. Nocake it must be so hard not to dwell on review scans. A has his big review scans in a few weeks and I can't believe we're there already. Providing everything is ok with them, we move onto stem cell harvesting and preparation for transplant. I am beyond terrified of that phase .

Blackswan please don't feel benign excludes you from here-I think any brain tumour must be terrifying.

Twunk that spunds very frustrating abour DS1-will they review him at some stage? How is your building going?

Oxcat how is your niece?

Hello BlackSwan - yes, spot on. Craniophyrangioma.

So far she has only managed to have the cyst above the tumour drained, and that proved far harder than anyone expected, and has left her with a lot of problems, including disturbance to the hunger centre, which means she literally cannot stop eating, both day and night. Not her fault, but very distressing for all. She also has problems with temperature regulation and fluid regulation.

Sigh. For a simple preliminary op, it caused quite a few problems. And her sight isn't back.

It looks as though the tumour is too deeply seated for surgery, and it is also likely to recur whatever they do, because of the position and nature of it. For that reason she looks likely to need radiotherapy rather than surgery, as surgery will probably be too damaging. This treatment is only done in the US, so it looks as though she will need an 8-week treatment of radiotherapy in Florida.

BlackSwan: is that what your son had? I am truly sorry. Please could you consider whether I could put my sister-in-law in touch with you? I think she is pretty isolated.

As BlackSwan says, a benign tumour but one that seems to cause a fair amount of trouble, both immediately and in the long term. She is now out of Great Ormond Street, but still awaiting plans for the next stage.

Thank you again for all your support. I will see if my sister-in-law would like to join. Good luck to all your little fighters - inspiration, every one.

Oxcat I'm so truly sorry to hear how tough this has been for your niece. I will PM you my contact details, I'm certainly happy to speak with your sister in law. There is also a FB support group for cranio survivors/carers, I will send you details.

It's a year today since Isaac went into hospital - sobering thought. Am really nervous about his next scan - not sure whether it's the emotion around the anniversary, or if something feels different this time.

Sorry, went AWOL for a bit there. Too consumed with school life and building works.

Kitchen is going in today! but still a bit to do - the floor has only been finished where the kitchen is! And there's still some painting left to do…

DS1 has impetigo! I went to the emergency doctor yesterday and she gave a topical cream. Lying in bed last night I thought "fuck I've got a child with Leukaemia and they've given his brother a cream for a highly infectious skin infection?" and went back and got antibs today. He's off school today but will be sending him in tomorrow.

Oh unbuckle when is the next scan? (((((hugs))))) for your crappiversary. Also Nocake for yours. We're coming up to ours - 26th July.

Brave stem cell transplants are a scary business.

Oxcat I hope your niece is recovering from her op.

"welcome" Blackswan - sorry you had to join us.

WRT all the speech business - the school are actually being quite helpful! They've applied for funding for extra help but as Alex gets this funding anyway, they've decided to use some of it for additional language classes they can both go into. He's going into the next year though (children are often kept back a year).

Brave it us strange how quickly it all be ones 'normal' isn't it. I hope your little man is doing okay. Wishing you lots of luck for his review scan. Try not to think too far ahead, just a step at a time

oxcat I'm so sorry to hear what your poor niece and family are going through. I hope they are all bearing up x

Twunk great news about the kitchen! and how lovely to be consumed with something outside of hospitals and test

unbuckle When is I's scan? I assume this is the last one before his end of treatment CT? The run up to scans is horrific - I think someone on here described it as a special kind of torture and they were right . Big hugs and have everything crossed for good results

We're all fine here. D got his first report on Fri. He's done so well considering his attendance over the year was only 53%. I'm especially proud how well he has fitted in and made friends given his much he's missed - his social life is considerably better than mine .

Had some very sad news last week though - the 2 year old daughter of a friend has relapsed just weeks before the end of treatment. They are a lovely family, I am just devestated for them. And of course it's very close tohomeso so even more anxious about D's next scan in 5 weeks ..