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

Wow that sounds fantastic Twunk

I'm really glad you all had a good time at Disney too Trazzles. They should be coming to talk to D about his wish soon. Not getting my hopes up, knowing D and his love of all things dinosaur, we'll probably end up at the Natural History museum

How exciting that J is (hopefully) having his line removed on Monday, quite a milestone.

Just posted a long update to all which disappeared. Great news from twunk/nocake/trazzle.

We're still in the thick of it like you, lovely. We do try and keep i away from people, and it's relatively easy to do that with a baby. That being said, he still has constant line infections - but that comes from his own body, not other people.

X

J was only neutropenic and at home 4 times and got febrile 3 of those times. We generally tried to keep him away from sources of infection but yes, the greatest risk is from their own bodies. J is a c diff carrier so that has popped up a few times.

It's a year today since we learned he had relapsed and wouldn't grow up. It still all feels so surreal, looking back at it all. J's friend who relapsed at the same time died on Monday so it's kind of all come directly in to focus again just how incredibly bloody lucky we have been.

nocake Disney was much more by luck than good management! At the time, J said he would prefer to be a fireman for a day than meet Mickey. The thing is, his Godfather is a fireman so he'd already done that anyway!!!!! MAW send 2 people round and one of them was so lovely - he was just like, shall we overrule the 3 year old? I think he'd enjoy Disney more... We were thinking it would be amazing to get to Paris, but he said as there were no restrictions on Joe travelling, Florida would be better and the set up they have there is amazing because so many people do it so you have a special place to stay .org at Give Kids the World and everything is tailored to families with additional needs. And because the parks see these kids day in and day out, they are also really geared up to helping out. We couldn't believe it until it actually happened! They do make magic happen with whatever the wish is, though, as well, so even if it is the Natural History Museum again you may well find that they can find something to make it a particularly magical experience.

Link fail! should work here

So sorry to hear of j's friend, that must be horribly hard to deal with and so frightening for J.

Hello all, how is everyone doing?

We're back in hospital. Poppy got a temperature yesterday, the morning of our DS's 1st birthday. She's on antibiotics but her temps not coming down. She's well 'in herself' and doctors don't seem overly concerned.
I was fine with all this, but now I've started to worry! Could it be 'something bad' whatever that means? Not sure why antibiotics don't seem to be working.
Her counts are all low and my new thing to worry about is that she's not eating. She ate one chip all day.

Hope everyone is doing better ! Thinking of you all x

lovely I try to take my lead from the Drs. If they aren't concerned, I try not to be. They have seen all this a million times before. I'm sure they won't hesitate to move you to a higher level of care if that's what is needed. It is extremely stressful though, I do appreciate that.

In other news, J's line is out HURRAH!

I haven't actually told him about his friend. That may well make me a terrible mother - he hasn't seen him for a while and hasn't asked after him also. With everything he has been through, I don't want to make him aware of his own mortality, which he has, amazingly, so far been blissfully unaware of.

We stopped off at another friend's on the way to hospital yesterday and friend (age 4) said "J, you're not to come in here and play with [family pet] as we don't want him to catch cancer".

I know it's just the logic of a small child, I also know that his mum will have told him a million times that cancer isn't contagious. I told him he didn't need to worry, as did his mum but it still broke my heart a little bit.

Trazzle, that must have been hard to hear. I know it's not malicious in any way, but must have been difficult none the less.
Thanks for the advice. Doctors still not worried, they'll do further tests if temps not down tomorrow. Sigh.

Oh that's sad Trazzles - I know children can't always understand things like cancer, but that would make me upset too. I am very protective of Alex so anyone upsets him it hits quite hard.

Lovelychops sorry your DS's birthday was spoiled (we had most of Christmas in hospital and when they said they were admitting him I burst into tears). I'm sure her temp will be down soon - have they got her on paracetamol or anything?

it's been a while since we've had to go in with a fever, it's not something I miss! .

lovely I know its scary and I'm always nervous when D gets a temp that doesn't come down quickly but like the others have said be reassured by the fact that she is well in herself and the doctors aren't overly concerned. Remember as well that she is being monitored closely every 4 hours. Lots of D's temps turned out to be viral and within a day it two he was right as rain. Sorry that it happened on DS's birthday though - it's always the way. I've almost stopped making plans now as every time I did we'd end up in hospital - including Christmas Day grrr.

Trazzles I certainly don't think that makes you a bad mother. fWIW I'd have done the same if it was D. They are still tiny, what good could it possibly do them to know, how would they be able to comprehend it? I'm sorry for what your friends little one said too - not malicious I know, but still very hard to hear . Great news about the line though

Does any

D's has returned with a vengeance.... as has his hair.... . He is in great spirits at the moment, it's lovely to see. We have his official end of treatment CT scan in a couple of weeks. I'm extremely anxious about it, not just the results but also that he will freak out when they put the contrast in (as he did in the previous CT scan) and they won't be able to do it, which will mean rescheduling and even longer to wait....

How are you both getting on bravelittlesoldier and ekkiethump?

Hi Twunk, unbuckle, mmmmsleep and anyone else I missed xx

Still in hospital. She had a blood and platelets transfusion today. Temp still keeps creeping back up though.
I've taken heed of the advice on here, and as the doctors don't appear worried I'm trying not to be.
She's on fluids, anti biotics and paracetamol. Fine in herself though, she's played happily all day.
Hoping temp will come down tomorrow.
If it's viral, does that mean it won't respond to antibiotics?

Yes. Antibiotics only work on bacterial infections. It's why there's no point taking them for a cold.

The drs put them on antibiotics just because they can, from what I can make out. I don't honestly know whether bacterial infections are any worse than viral ones. But yes, if it's viral it's a case of waiting it out.

Thanks trazzle, you'd think I would know all this stuff really!

Until they know better they assume it's a line infection - even if the CRP and other things imply a viral infection. I've found after 3 or 4 days they review the antibiotics when they get blood cultures back. It sounds like DD is doing fine.

Oh Nocake I hope the scan can go ahead, but I do know the joy of trying to get a young boy do something he doesn't want to.

Had Alex's "parents evening" after school yesterday - he's doing really well and is ahead of where they were expecting. DS1 isn't but it's this speech/language problem - he can't point to letters after hearing their sound. It's too early to tell but at the moment we are suspecting dyslexia. Otherwise though he's great! Enthusiastic, happy, sociable and is doing fine in maths.

Just popping in to send my love to everyone. I think of you and your children often and hoping for smooth treatments, lots of remission and fun when you can.

I would just say though anyone who has doubts or questions about their child's treatment keep asking them to explain what they are doing until you are happy that you understand and are happy with what they are doing. You know your child best and they take mothers' intuition very seriously.

Keep strong xxxx

Hey min, good to see you. Hope you are having some kind and gentle days.

Thanks Min. Think about you often. Take care x

Hi all, thanks for all the advice and kind words when I posted the last time. Everything was looking so positive before surgery that I felt a bit of a fraud when I read all the other stories on here. I also wanted to hide in that lovely place called denial...

DS2 had his tumour removed last week. He made an amazing recovery so we were on a high until the Oncologist met us yesterday. Histology showed that the tumour is extremely aggressive and while it hasn't spread (Stage 2)-the level of aggression means treatment will be very aggressive too. It starts next week and I just want to run and hide. DH hasn't stopped crying which is so not like him. We're trying to stay positive but really struggling. The thought that he'll have years of horrific treatment which may not work and could kill him just scares me beyond belief.

I hate, hate, hate neuroblastoma. He's only just turned one and is the happiest, liveliest, sweetest baby with the most beautiful red hair. I am so scared he won't get through this.

Hi brave. So sorry you're in this terrible situation. Please keep posting if you feel you can, there are people on here who have experienced what you're feeling now. It's ok to feel terrified and you don't have to be strong all the time.
When does treatment start? Do you have good support in real life?

Hi brave I'm so pleased to hear he has recovered well from surgery, and sorry to hear its aggressive. Is he high risk?

Do you mind me asking what his treatment plan is? If there is anything I can do to help or explain or hold your hand please let me know.

There are a couple of groups on Facebook too if you're on it. One is a general neuroblastoma one which drives me a bit nuts as it's mostly Americans chatting about vitamin supplements and which surgeons are the best, but there are parents of children at every stage with every kind of cancer. It's a weird, good place for support.

My fave though is the Neuroblastoma survivors group. Every so often a post comes up like... Hi, I had neuroblastoma when I was 3 and here I am on my 60th birthday! It's nice to hear good news stories for it.

If you want to PM me or anything at all, please feel free. I'm far from an expert on neuroblastoma but I know what it's like x

Thanks Lovely and Trazzle, yes he is high risk. So I think Stage means nothing then, is that right?

So far the plan is have the line inserted on Wednesday, start Induction chemo (70days), then high dose chemo, followed by radiotherapy and immunotherapy. Trazzle any advice would be very much appreciated. We're just so shocked, how do you stay positive?

With difficulty, in all honesty.

Yes, if it's high risk, stage isn't really important. The treatment protocol is the same regardless. I'm so so so sorry. I found it helped to just deal with one stage at a time like... Ok COJEC chemo is scary... Well, now we're doing it, it actually isn't that scary after all . Ok, we can cope with this... Right that's over, what's next ?

With the COJEC we found Joe only got neutropenic on the odd-numbered chemos so we could kind of plan around that as we could expect to be in hospital then.

And talking to other neuroblastoma parents at the hospital also really helped to know what to expect.

Massive hugs. It's utterly shit. But ignore the statistics, they are out of date now and your child is his own person, not a number.

You will get through this. And we are all here with you for every step. Don't be afraid to ask your GP for medicine if you need it. You will get through it x

Sorry we call induction chemo "COJEC" up here. No idea what it stands for...

Was just going to ask what that meant! Thanks for that!