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.

Kinky some hospitals don't seem to bother with the immunoglobulin, but you could try asking. Our main centre didn't do it but our shared care centre knew about it from a bigger centre that does bone marrow transplants and started using it for that, but then went over to using it for any kid that is ill a lot. So, shared care centre tested DD and started her on it. It really made a big difference. I wasn't mad keen on more blood products of course, but she was going inpatient every few weeks which could have done her a lot more harm so we were so very glad we did. They seem to use it a lot in the US going from the listserv.

Hello MrsDeVere hope you're doing well also .

Hope you are all having a good week!

We do bone marrow at ours. I will ask them when I take her in next week. Thanks .

Feeling a bit more human from going to work, although I'm on very limited hours as part of phased return this week.

I'm stressing about teaching though tough. I have never, ever, ever had an issue in the classroom, but last time I was in I was really struggling - the cracks were starting to show, I think. I'm just hoping I'm calmer this time. The kids didn't realise, but I felt pretty crappy. Stress is a funny thing.

Hello to MrsDeVere. I really hope all is well with you .

You went back to work!

Thats brilliant. Everything crossed that it works out ok.

Hi all, thanks for the welcome, will continue to lurk and post occasionally if that's ok! Feeling a bit down because ds had an appointment last week and they found evidence of continued tumour activity, so he's got to have further chemo asap . Luckily it's not going to be anywhere near as horrible as the chemo he had last year - hopefully he won't even get neutropenic, yay! - but the protocol itself is quite new and the medium- to long-term effects are completely unknown. On the other hand, if he didn't have it (or if it fails), the only other option apart from EBRT (which they don't want to do because it's in a very sensitive area and he's so young) will be radical surgery, and that will leave ds even more disabled than he is at the moment .

lisa, I really hope your dh is ok - does he really have to wait a whole month for further tests?

Sorry, lots of sad faces in my last post!

mackerella I'm really sorry to hear there's still activity going on you're more than entitled to use as many blue faces as you like on that one. I'm glad the new chemo protocol isn't looking too awful though. Is there no chance your DS would be eligible to be sent somewhere on the NHS for proton beam therapy if they're reluctant to try radio or surgery, or could you do some fundraising to pay for it (hellishly expensive I know)?

Kinky glad you got back to work, but I know how you feel about emotions. I've had to go have a cry in my lunch break several times since I went back!

mackerella I'm sorry to hear that he has continued tumour activity. That's so tough for you all. I'm sending you all my love and hope that the new protocol works without side effects. Do you have good support? Do you have someone to vent to? Make sure you take really good care of yourself. We're here for you.

Thanks farlo. So far so good. I'm just hoping I don't snap unexpectedly and go beserk! The last year has left me a bit nuts.

Kinky, deep breaths. Take each day as it comes. You are doing brilliant being back . How is your dd now?

Mackerella, big hugs to you. What are they hoping this new regime will do? Has EBRT been discussed as an option for when DS is old enough? I agree with Farlo in suggestion proton therapy. Have a look at this proton therapy and see is your DS's tumour type on there. Proton can be given in children as young as 12 months. There is still risks and damage being done but not as severe as with EBRT. At the minute I think they only fund 50 patients from the UK a year, but there has supposedly been more government funding so the numbers being funded and a wider range of cancers being treated could be more in the near future

Hi all

I've been resisting posting on here, but think I could do with the support now.

My lovely little three year old boy was diagnosed with ALL last month. He is in week 4 of the induction phase of regimen B and doing very well so far. We are lucky in that it was caught very early (he hadn't been ill at all pre diagnosis) and that his results have all been very good. He seems to be coping very well with it, but I am starting to fall apart now! I am very positive about his future, but I'm just so sad it has happened and so unbelievably angry.

I wish all of you and your families well and am truly sorry that we are all in this hideous situation xx

Hello Wendy welcome to the group and I'm so very sorry your son has ALL too. My DD just finished her treatment for it in October. She was diagnosed at three also. In case you have missed it now the thread's getting longer and would be interested in more targeted support and advice on side-effects etc. here are a few links for you:

UK ALL-specific support group on facebook:
www.facebook.com/groups/213470895357205/

US (mainly) ALL facebook group
www.facebook.com/groups/130969263666091/

ALL-support listserv can be found here:
www.all-kids.org/

I'm on all three and I know we'd all be very pleased to have you and to be able to give you support through your DS's journey, if you want to. Feel free to hang out with us here either way of course .

I'm glad to hear treatment has been going well so far. All the best x

Oh, wendy .

My DD, 13, is a year into regimen B for ALL. I have a 3 year old DS too and my heart completely goes out to you. It so incredibly cruel. Allow yourself to go to pieces if he's settled at the moment. You must let yourself do this as if you bottle it up, as I have, it breeds more problems later. What is it they say, anxiety and depression are a sign you've tried to be strong for too long? Get yourself somebody good to talk to - friend who will cope with you breaking down, counsellor, whoever - and let yourself be devestated. It is devestating.

I'm so sorry your little one has to go through this thing . It's difficult enough when they understand.

I'm always around picking messages up, so please PM me or post here whenever you need to chat.

Sending you lots of love and best wishes.

I'm on UK ALL facebook with Farlo. That's a nice little community too, with lots of support. A couple of my friends from hospital have 3/4yr old sons with ALL and are on there, so it is worth a look.

Hi all, hope everyone's OK.

Hello to Queen marigold and Wendy - sorry that you and your children are going through this.

Kinky - hope work is going well - I'm sure you'll relax into it over the coming weeks. How's dd doing at the moment?

Mackerella - sorry to hear about your ds, hope he responds well to the treatment.

All is going well here; thankfully ds hasn't suffered any side effects from this first chemo cycle, apart from being tired. He had his last vincristine of the cycle last wed and his bloods are quite low this week - neutropenic for the first time. But he's very well in himself - been into school for a few hours every day this week. Half term now, so hopefully will be able to manage full days by the time they go back [optimistic]!

Lord. devastating. I am tired and rubbish at spelling at the moment .

Stinky, I'm really pleased that he's doing so well, that is great news. How are you doing? DD has been neutropenic but well for 3 weeks now. It's a pain in the respect that I make her go to school, but I can't help being a bit twitchy that it's 2000 kids in size and it's germ season! She's doing okay though. It's nice for them to have some normality. They really enjoy being there with friends and having lessons: they start to value things that other kids take for granted.

Yes, our support nurse has told us not to wrap him up in cotton wool - he'll benefit far more from being at school (despite being neutropenic), than stuck at home. Of course I trust her, but can't help feeling relieved it's half term now! Slightly apprehensive that he's going to see Star Wars for his best friend's birthday tomorrow - trying not to think of the germ potential in a crowded cinema!

I'm OK at the moment. It's amazing how quickly this all becomes normal and part of your life.

How's work been this week?

Hi all, thanks for the lovely comments. And Farlo and toughday - thank you SO much for the info about proton beam therapy, which we hadn't heard of. I've had a look at the link and DS's tumour type is indeed listed! It also sounds as if his is one of the tumours that is very responsive to this sort of treatment, so we'll mention it to his oncologist about this next time we talk to her. I think they might even be able to do it in the UK (at Clatterbridge) so def worth following up. Isn't MN amazing?

We do have good support from a specialist charity, who have put us in touch with other families (tumour type is pretty rare so we'd never meet anyone on our local ward). It's great to talk to other people who really understand - friends and family are very sympathetic, but as DS's treatment has dragged on and on, we're starting to feel a bit 'forgotten' about - think most people assume you have chemo and then you get better, whereas the reality is that DS will be in and out of hospital for 4 or 5 years. I guess you all know what it's like!

Wendy - I'm so, so sorry to hear about your DS. It's great that his treatment is going well, but you must be in a total state of shock. I second what Farlo said above about getting support from other people who are going through the same thing - it's been tremendously helpful for us, especially talking to people whose DCs have finished treatment.

Hello everyone else - glad to hear that things are going well for you Stinky and Kinky (hey, that rhymes!), and that's great news about your DD's scan, toughday.

QM, I also wanted to give you a [non-MN] hug - I'm sorry you're feeling so rough. I do understand what it's like: my DS has also been left permanently disabled as a result of his illness (blind) and we're terrified that the tiny bit of vision he's left with will be taken away, either as a result of the cancer, or because of future treatment. It's so unfair that the treatment itself is nearly as brutal as the cancer - but we're just hanging on to the fact that we'd rather have DS alive-and-disabled than not with us at all. DH and I have found, though, that we can't seem to hang on to all of these facts simultaneously - it's like it's all too big to comprehend at once - so some days we're focusing on the disability and how to manage that, and then we remember about the cancer and it all comes back with a whoosh :( I think this is our way of managing, tbh, as it means that we concentrate on small, practical things rather than worrying about the bigger picture.

DD has fatty deposits in her liver. They don't know the extent of what's going on without doing a biopsy, so we need to wait for that.

They said diet can do it, but she's not got a bad diet. It would appear methotrexate can cause fatty liver, and given she's had tons of that, it seems a likely factor.

Either way, he said he's not too worried about the levels, but he would have to do something within six months as they have been elevated for a year now . To me, that doesn't sound great.

I'm quite worried at the moment. The last thing she needs is scar tissue on the liver, which is the next stage of fatty liver, or inflammation.

Hopefully they will sort out this biopsy soon.

For now, I'm putting us all on a very clean diet based on wholegrains/wholefoods as reducing sugar can help. It makes me feel like we're at least trying to do something.

It is just endless crap. I'm so fed up for her.

Kinky I'm really sorry to hear that . I do know a few people whose kids have had liver issues, including one wee girl who they thought might go into full-on liver failure from her chemo - luckily although her liver was in a very bad way scans show her liver is slowly healing. I really hope they get the biopsy organised soon and it shows it's not as bad as you're fearing.

At least you're through all the intense phases now, I hope things will settle down and they can find a way to get through maintenance without stressing the liver any further. From what another parent was saying on the ALL Kids listserv a while back, I believe they are planning to study reducing the intensity of maintenance therapy in the next round of trials as there is apparently speculation that it is unnecessarily harsh in most cases. Perhaps they will reduce the mtx in her protocol for a while at least in light of this?

I hope everyone is having as good a weekend as possible and all your fabulous kids are doing really well . Have you all applied for a Little Star Award for your CKs yet? It's a lovely way of giving them a wee boost if not.

Just got the date for our next scan.

Please God may this be clear. Please God may you fix the problems that remain from disease and from teatment. Please God spare my baby from cancer. Please let us be one of lucky ones.

Amen.

I'll be keeping my fingers crossed for you, Queenmarigold. All these amazing kids deserve to make it and get to live the full, happy lives they deserve.

Wishing everyone a very happy Valentine's Day!

Queen I do hope everything is okay for you.

Thanks Farlo. She's having liver bloods taken today (vincristine day) and we will go from there.

I hope everyone else is doing well. Sending my love to all of you.

Bumping thread.

Best wishes to all .

Hi everyone. All still good here; ds was still just neutropenic on Wed (0.9), but on the way up. Hoping to have him in school now until we go back into hospital on the 29th. So that's the first cycle almost over, 7 to go. The next may not be so easy as this one, but we'll cope I'm sure.

Good luck for the scan QueenM - crossing everything for you.

Sorry, meant to ask , Kinky - any result from the liver bloods?

That's great news about your DS stinky.

Bloods only taken on Thursday, so nothing yet, but I'm expecting a biopsy as they've been up all year so I doubt anything will be different. Her counts are okay and she's well, so I'm hoping she will go to school tomorrow. I've been phasing back in okay, although it's taking a bit of adjusting. I feel quite stressy, even though there's not much to be stressed about. I suppose I'm used to always waiting for the next thing.