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

[Twunk]

I'm sorry madmother - I completely disappeared then! I've got a very busy few days but will update further! 18 months seems like a bloody long time but Alex's treatment was 2 years and you'd be surprised how quickly it can go. It's very odd. You will have bad weeks and good weeks - but yes, the hospital will be so utterly familiar by the end of it all. Vincristine can cause muscle weakness (especially the legs). How is he now?

waves at Trazzletoes - how is everything with you?

[madmotherof2]

Hi all, hope I can join in....

My nearly 7 year old, William, was diagnosed with an optic nerve glioma just over a year ago. It's a low grade tumour and we had been on a Watch and Wait plan until September when the bastard started to grow and the oncologist wasn't happy.

William has started a 3 week cycle of Carboplatin and Vincristine, today he's having his 7th dose. He'll be doing this for 18 months.

It's been very up and down, pretty predictable with side effects. He's been very Neutropenic and we've had one admission with an infection. We've also struggled with his other blood counts, he had a blood transfusion on Sunday and a platelet transfusion last Thursday.

His hair has been slowly falling out over the last 2-3 weeks, I'm hoping it won't all go ( at the mo it's thinning)

I'll be honest, i was so blasé when they told us he would be having chemo. Hubby sat there and cried whilst I was tough and didn't worry about it. It's been so much more hard work than I imagined, every day I wake wondering what will today be like? Will William wake up shattered? Feeling ill? Will he get to school? Will I get a call to collect him?

I thought it would be a case of him having a day off a week for chemo and that would be it, how naive was I!!!!!

[Trazzletoes]

Hi! It's been a while. How is everyone? x

[Twunk]

Hello! We are now nearly 2 months post-treatment and all is well. Alex had his first appointment since he finished chemo and his bloods looked really good. The oncologist was really pleased with him.

He developed a lovely post-chemo rash just in time to go back to school! Thankfully his classmates haven't really conmented (though some of the parents have - just asking what it is). It's improving a bit now.

The boys have started Taekwondo and love it. Alex clearly isn't quite as strong as the rest but he's certainly not lacking stamina.

Overall we are feeling optimistic for the future and beginning to recover from the stress. It's nice being normal but everything requires adjustment.

[TheNinjaGooseIsHooking]

How's everyone getting on? I'm pleased to say we survived the summer holidays Dd has found going back to school very tiring, we had a few, hopefully unrelated, health issues in the last few weeks so a few appointments and not much of a break really. She needs some laser treatment on her eyes due to post cataract complications so that'll be another anaesthetic and admission in the next few months on top of the one she has coming up for her checkup. She's definitely stronger than me!

[BlackSwan]

Shits - our DS has growth hormone daily (following brain tumour produces none) - it's really not that bad. He is 5 and copes ok with it, though he would rather not do it. His growth has been dead on average while taking it, but it is marvellous to see he is growing. In fact, just measured him and he took a leap of about 1cm this past month. I'm thrilled. It's not just good for their growth, also general health. It's very expensive for the NHS, so there is a bit of a process to getting funded, but worth it. Not heard of kids being on it for just a year though TBH. If they aren't producing GH then they need it longer term from what I have read. There are good FB groups for families with kids on GH.

[Twunk]

Toughie - did she ask to go in the first place?

One part of me thinks she has had to endure so much without any choice and so it should be her choice, the other part thinks that she will probably enjoy it and it's a good idea for the reasons you have mentioned.

No use am I?

[shits1]

just fri 2.30pm to sun 12 pm

[Twunk]

Oh Shits and your shit hitting the fan

Seriously it cannot hurt to get a second opinion if you can get it quickly.

Re the guide camp - I do make my children do things they don't want to if I think they'll enjoy it. How long is it for?

[shits1]

Wow well done Twunk and Alex, may he be cured forever and ever and never need to go through all this ever again xxxxxx

Re hips, how did it go in the end?

I am ignoring the whole hip dysplasia issue for now, am up to my eyeballs with log file work and badge tests for dc's upcoming girl guide camp next week. She doesn't want to go, because she hates camping and there is way too much paperwork and scrapbooking and report-writing to be done in such a short time that she feels stressed and just wants to give up, but I am pushing her to go, in order for her to come out from her shell, make new friends and essentially lead a normal life like other kids...since her illness she has become very quiet and shy and introvert. I am wondering whether to cave in though, and pull her out from it, she has been tantrumming pretty hard everyday whenever I bring this up and no amount of bribery is working...

Dd's last checkup last week didn't go so great. Her bloodwork was very good though, even though she had a bit of a stomach upset and vomiting for several days. But the endocrinologist said she hasn't grown much from 2013, in fact she had only grown 3 inches taller since, and that he might want to put her on growth hormones which is a daily injection for a year. Obviously our jaws just dropped when he said that. And we thought that we were done with needles and pricking!!! I said I would like to wait and see in case she suddenly grows more (although probably not judging from her past history), meaning that I want to get other doctors' opinions first!! and he said fine but she may not grow as much if we leave it too late. So yah, that's the latest shit to hit my fan.

[TheNinjaGooseIsHooking]

How fantastic twunk! Must be such a relief

[Twunk]

Know the feeling - we are 3 weeks into the holidays and broke - we've not been on holiday yet!

Alex had quite a few cannulas in his foot. In fact getting a line into him was never ever easy. Pleased to hear the cyst has gone and I hope it doesn't return.

But we are DONE! Yesterday he took his very last oral chemo. And here he is - 2 years later! So happy

[TheNinjaGooseIsHooking]

how's things Twunk, all finished yet?

Dd's check up went okish, the anaesthetic was traumatic as usual but thankfully I didn't end up wearing the premed this time! They had trouble getting a line into her again so I got her back covered in plasters and a cannula in her ankle, I know there's a lot worse things but it's these things she struggles so much with. The cyst in her good eye has vanished, such a relief it's gone! There's no guarantee it won't come back but for now we can relax a little and nothing new in her other eye, no growth so pretty good results really. Struggled a bit after the checkup, I think I'd got myself so worked up about her other eye I crashed a little. Dd's also not coping so well with her regular appointments, she's very wary of medical staff and anyone that wants her to lay down.

Now back to letting the kids bankrupt us for the next 5 weeks

[Twunk]

Alex had a brace for 6 weeks when he was 4 months old. Here they routinely scan all children with an increased chance of hip dysplasia - and he was breech so he fell into that category. I think they only do the brace up to 6 months because otherwise things have settled too much. He was symptomless and his angle was only very very slightly out so the orthopedic consultant was (IMO unecessarily) erring on the side of caution.

Funnily enough (not!) we are seeing the physio next week as he has inward turning hips - he might grow out of it but I would like someone to check him over.

In hospital at the moment getting Alex's FINAL IV immunoglobulins! Just over 3 weeks to go to the end of treatment.

Shits I hope the world gives you a break from worry soon.

[shits1]

Oh thank you so much TheNinjaGoose...i really hope it is nothing and that he was wrong...after what you said, i feel a bit better now.

Hope your dd's checkup goes well next week. I know what it is like, it can be nerve-wracking having to wait one whole week when the consultant is away for some reason! Hang in there :)

[TheNinjaGooseIsHooking]

both my youngest 2 have been checked for hip dysplasia shits1 ds2 was fine, dd3 has low muscle tone but no hip issue. It's an ultrasound usually that's used to diagnose so if further tests are needed ask for one of those, much harder to keep a small wriggler still for an xray I was told treatment varied depending on severity so there are things that can be done, it's also possible to 'just' have an immature joint that they grow out of. Actually thinking about it the hv thought ds1 might have hip issues because the creases on his legs didn't line up so sent us to the gp who manipulated his hips and said he was fine. The gp was quite cross that the hv had panicked me over nothing, at that time he was running around, no sign of a limp or pain. It might not be serious but that doesn't that doesn't stop us worrying! Hopefully he's ok, doubt very much my ramblings are useful but have been there and worried too for my lot.

my dd was supposed to be going in for her checkup this week but was cancelled as her consultant is sick. It can't be helped I know but it doesn't help my nerves in the slightest having to wait another week.

[shits1]

I know this is out of topic, but does anyone know anything about hip dysplasia in babies? Just posted a new thread on this:

I took ds who was 8 months old last month to the doctor's for a checkup as he had some red things in his stools (stool test turned out normal, it was probably watermelon or undigested fibres?) but as the doctor was examining him, he said his hips felt loose for an 8 month old and said usually they start tightening up by about this time or they feel tighter than this. There could be something wrong and I asked what, and he said maybe dislocated hips. My face must have changed because he then said ok, let's not talk about it, because it could be nothing but he said to give it a month and when I bring him in for his next vaccination or checkup at 9 months he will have a look again and maybe send ds for an X-ray....

We saw another doctor last week, and he examined DS and he says he can't see anything wrong, and he also said an X-ray may or may not be able to see the problem if it is very small, and there isn't any treatment and he will have a limp. And as they get older, maybe a hip op. Is this true??

Has anyone had this, and what were the symptoms? DS is very active and mobile, started crawling very early at around 4 months, and standing just a few months ago and is trying to walk now whilst holding on to furniture. I have read some previous threads on here which say their child who has hip dysplasia was also fully mobile but would like to know more...

I know it isn't really serious in the scheme of things, and as my other doctor might have told me "It is not cancer" but I am still just a teeny weeny bit heartbroken at the moment. I am not sure if I can deal with something like this if it turned out to be the case. Why isn't there a crying face emoticon when you need one.

[shits1]

Hi...how is everyone doing? DD had her monthly blood tests last week at the oncologists and saw the endocrinologist for hormone blood tests. He says her FSH level is high which means she should have started her periods by now. But she hasn't. So her ovaries seem to be late in responding. So he said she may need to take oestrogen to try and kickstart everything. But there is a chance that may not work either, then she will have to be on the pill for life. Well, when she had her bone marrow transplant done nearly two years ago, infertility and ovarian damage was one of the things that stared me in the face when I stupidly consulted google, so I guess I have been bracing myself for this. But I didn't really expect her to hit puberty (as it were, not sure if she will hit puberty like other normal children due to all the chemo she has had and the transplant, although when I asked her transplant team two years ago, they assured me she would) so early, she is only 11, and I only started my periods when I was 12. But my gynae did say she may be starting soon, after she had the discharge on and off earlier this year, as it is apparently a sign that her period might be coming.
Anyway, I asked a friend who is a gynae, and she said not to worry, we can afford to wait until she is 14, as dd has not fully grown yet, and taking oestrogen will halt her growth and we don't want that. Am so relieved I asked her! Yet another kick in the teeth...am just so tired of it all. When will it end...

TheNinjaGoose, she is 11....ooh..I would be so interested for dd to join a study like that, we have cancers in both families too. When I had DS last year, I asked if it would be possible to test for cancer genes as I was petrified he would end up getting leukaemia like his sister, but I was told it wasn't possible to test for that....

QueenMarigold, I know exactly what you are talking about. People do not realise how it changes your entire life, it just consumes your entire life and being. Hell my H did not understand and still does not, and during dd's transplant somehow expected me to take care of him and his needs.

[TheNinjaGooseIsHooking]

thanks Twunk not long to go now at all, hopefully the last few weeks will go smoothly!

QueenMarigold we found the same happened when it became clear that dd3 had special needs, people didn't know how to handle it, what to say, how to act etc, it's crap, really crap that it's times like this that you find out who your friends are. It's a common theme on the SN boards unfortunately. That said, since then things have got much better, we have new friends who mainly also have kids with SN or health issues so no worries about understanding each others issues and those from before that have stuck with us have done so because they really were good friends in the first place. Stick with the ones you know are your real friends, groups change and evolve over time and things will get better.

[BlackSwan]

I think people distance themselves QueenMarigold - they see you and your problems and think well that's their life, they have to accept it. People can be extremely selfish and not notice or care if they leave you behind, exclude you intentionally or not (or intentionally, but without wanting to acknowledge it). If you can't keep up, either physically, or socially, with what everyone else is doing - people can be downright brutal and leave you behind. I get it. I've seen eyes glaze over when I talk about our latest MRI. Fuck them.

[Twunk]

Oh QueenMarigold you poor thing. How old is your DS? Is it his friends or are you also friends with the parents?

We have not got beyond treatment yet, and Alex is very young, so I can't advise beyond advice I would give anyone.

Just out of interest, and I'm not sending you elsewhere, but have you tried the SN boards on here? Might be somewhere you can also try.

This journey is shitty enough without it being made more shitty. Much love to you xxx

[Queenmarigold]

Please can anyone advise me. We are 4 years out of treatment with serious life changing side effects. It is becoming more and more obvious we will be ignored, left out, not invited by some 'friends'. Usually I'd just not see them again but they are part of a circle which we socialise with. I am so upset, I valued these people and they were my DC's friends. They just don't get that cancer affects everything, always and forever

[Twunk]

No, Ninja only one to do with the treatment for ALL and as it turned out Alex wasn't eligible because he was "standard risk". It sounds good though because it means she will be closely monitored - I'm sorry to hear you qualify though and also sorry to hear you have the added worry of the cyst.

Well we have 2 months of treatment left! 2 months! I can't believe it from those dark days at the beginning.

[TheNinjaGooseIsHooking]

sounds hard shits1 how old is your dd? It's the whole one thing after another that is so draining. My dd2 is doing her gcse's currently and I'm struggling to keep up with it all, it's changed so much since I did my O levels!

Dd3 had a her surgery and all seems to have gone well as far as that was concerned. Although as a side finding they've discovered a cyst in her other eye that has grown since her last scan. It might not develop into anything but given her history it's ringing alarm bells everywhere. On top of that we saw the geneticist yesterday who thinks there's a genetic link to all the cancers we've had in the family but not the one we were originally referred for. So we're being enrolled in a study for childhood cancer genetics to see what, if anything comes back. And also a genome project for her genetic syndrome. Has anyone else here been signed up for any studies?

[shits1]

Thanks Twunk...yes it is indeed another kick in the teeth...I almost cried...so pathetic I know, but I was just thinking to myself at that point, just how much shit and bad news really can one person take in in one lifetime before the body just shuts down by itself?

The little one is doing well, he is a perfect little boy, has such a regular schedule for naps, bless him. He has been a bit cranky since yesterday though, I can feel his teeth coming in so I think it is that. It's driving me a bit mad though as I can't help dd with her coursework and it needed to be handed in today! I managed to get a few days extension by saying dd has been unwell...well it is not entirely untrue, she has been to the doctor's 3 times this week for the osteoporosis, the vaccination and also what I thought was a vaginal or urine infection at first but turned out to be nothing.

Hmmm...we are kind of in limbo...I am too scared to divorce, and I think he is too selfish to...