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Children with cancer

(998 Posts)
KinkyDoritoWithFairyLightsOn Thu 22-Dec-11 09:31:50

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.

minmooch Mon 07-Jan-13 06:46:58

Oh Kinky sorry to read how poorly your DD has been. I hope they are able to get on top of it soon. Xxxx

Back to school today for both DS and I am ashamed to say I feel quite weepy and very low at the thought of it all. I go to school with my eldest DS and help move him around school etc. it means a lot of sitting in my car just waiting. There's not really enough time to go home 20 mins there and back, as his lessons are just 50 mins long. Never know until lessons whether he will last a single/double lesson so it's impossible to plan anything. There's only so many coffees I can drink! I am being very selfish as this is the only way Ds can be at school. But my life ceases to exist. The thought of another few years of this is exhausting. And yet it is a miracle that he is at school at all and I feel I have no right to complain.

And the handbrake has gone on my car so need to fit in that repair. It's just trying to sort it all out that is exhausting and yet we are not in hospital and I feel I can't complain.

TrazzleMISTLEtoes Mon 07-Jan-13 07:45:46

Oh kinky sorry you are having a terrible time. Can I do anything to help?

I lost the thread for a bit, but am back now.

Missj sorry about your little one. Come and sit with me <shuffles up> as DS has neuroblastoma too.

TrazzleMISTLEtoes Mon 07-Jan-13 08:00:48

Oh gosh min that sounds both exhausting and mind-numbing lay boring at the same time. Is there really nothing the school can do for him?

KinkyDorito Tue 08-Jan-13 18:29:02

Thanks both of you.

She has the flu - influenza B. They finally diagnosed her after a rotten 4 days of fever and sickness. She's stopped temperatures and sick now, but still not eating and very weak. She's in for another day, and then, if her temperature holds, she will be allowed out with her tamiflu. Her dad is taking her as I have to go to work.

Once again I am feeling like the world's shittest parent for all of my choices. I just wish I'd been better with money and could afford to stop whilst she finishes treatment. I know she's going to be feeling weak and tired for a while as this has done her in. My lovely childminder has offered to keep an eye on her through the day. I am gutted it can't be me.

Feeling sooooo down. Plus I've put on a load of the weight that I'd lost since summer.

Head? Oven?


rareashensteeth Tue 08-Jan-13 20:34:56

May I lurk? Malignant Rhabdoid Tumour, not yet staged but not my news, so don't feel I can post details. I'm gutted.

KinkyDorito Wed 09-Jan-13 07:06:07

Sending love rare. Gutted is right. xx

TrazzleMISTLEtoes Wed 09-Jan-13 08:31:14

Hi rare sorry to hear your news.

Kinky I'm at work in town today - do you or DD need anything? Fingers crossed for you that she gets discharged. You are NOT the world's shittest parent, I promise. You are doing the best you can, which is an amazing job for your DD.

She is being looked after, and that's the main thing.

Praying4Beatrice Wed 09-Jan-13 21:45:40

Have just read through the whole thread. Huge unMN hugs to the whole lot of us. A club that no one ever thought they'd join, but with incredible support and kindness along with indescribable pain.

kinky huge sympathy, I think we all feel guilt and it's not doing us or our DC any good. (In my case I constantly ask myself how on earth I could have missed a 13cm tumour in my baby's tummy.) In your case your financial decisions were not based on having a child with cancer. Of course they weren't!

min, sorry, my previous comment was written in haste and didn't properly convey how sorry I was to read about everything you're facing in addition to your ds's illness. My heart goes out to you. And the sleeplessness must really be the final straw (and not just so annoying, what a stupid way of putting it, apologies again).

Beatrice is going in to see the consultant tomorrow and have another kidney test. She had one last time so dh suspects they've lost or contaminated the sample. Anyway I'm now fretting because she's already had one round of chemo and they won't have a baseline. I suppose she may have another hearing test as well, and presumably bloods -- praying that they will be good enough for chemo on Friday as they've been only fractionally above the cut-off the last couple of times.

She's been quite grizzly the last few days and wanting to be held all the time -- which is worrying, and makes normal life very difficult. And then when I get frustrated with her I immediately feel really guilty because of course it's not her fault and she's the one with cancer...

I'm also beginning to fret about the operation which I hadn't really thought about before -- and coming to terms with how serious it will be, how she'll be in intensive care for a few days, and worrying about how she'll cope with that as a breastfeeding, co-sleeping baby... Need to keep reminding myself, one day at a time.

Praying4Beatrice Wed 09-Jan-13 23:20:40

Also, min, could you ask to spend time in the staff room while waiting instead of having to be in your car? After all, you are doing the job of a learning support assistant by the sounds of it.

TrazzleMISTLEtoes Thu 10-Jan-13 13:09:56

Has anyone else's DC been through a stem cell transplant? Not sure how common they are...

minmooch Fri 11-Jan-13 14:33:08

Hello all, sorry for my absence - just trying to keep my head down, grit my teeth and keep moving forward.

rare sorry for your news. You say it is not yours. Hopefully you can let the person know that ther is support here should they wish to join xxx

Kinky you are the best mum. Everything you do is in the best interests of your children. Not only do you need to look after them but earning money to look after them counts as that! Be gentle on yourself. Your DD will be with her father. Stay away from the oven - unless you are cooking dinner! Hope you DD is now on the mend xxxxx

Praying4 being frustrated is par for the course, you too are tired (and grizzly?) and guilt is just one of the crosses us parents have to bare. I feel so guilty that I can't 'do this' for my son. You will worry about the operation, accept that, ask as many questions as you can and then you have to try and distract yourself.

As for my son's school - they are fantastic and doing everything they possibly can to make my ds attendance as good as can be and mine too. They are very aware of what I am doing and I cannot fault them in any way. School is large, staff room not convenient. I sit mostly in the 6th form centre (difficult seeing all the healthy kids) but when my DS is in there I need it to be his space.

Trazzle my son went through the process of retrieving stem cells but not transplant of them. The retrieval was not successful for my DS - not enough collected should he need it at a later date sad

First week back at school done. DS is very, very tired and very tearful. It just shows to him how ill he is when he can barely walk up the stairs.

Can I have a little vent? Over the insensitivity of others? Of my mother? Arrgghh. So one of my nephews (19 and thoroughly enjoying Uni) came home over Christmas and said he had had a few headaches and was a little dizzy. Cue a trip to GP, who was very thorough, did lots of neuro tests and told nephew he did not have a brain tumour. Nephew happy and relieved. So my mother is telling me this story and then telling me that for nephew the worrying about it is AS BAD as having a brain tumour! Oh no Mum, I can quite assure you that worrying about it and a quick trip to the GP to confirm it is not a brain tumour is NO WAY NEAR as bad as having a brain tumour, the symptoms, the surgery, the rehabilitation, the intensive chemotherapy, the radiotherapy, the maintenance chemotherapy, the disabilities left. Aaarrggh and this is my own mother saying this to me! God give me strength.

Fucking bastard cancer. Off to see Les Mis at the cinema tonight - these words from I Dreamed a Dream seem apt to how I feel about my life at the moment:

I had a dream my life would be
So different from this hell I'm living
So different now from what it seemed
Now life has killed the dream I dreamed.


KinkyDorito Fri 11-Jan-13 15:53:17

On way out, but not before giving min a virtual hug. I'm sorry she said that, it was incredibly insensitive. thanks

daisydancer21 Sat 12-Jan-13 10:18:10

Anyone here on the oncology ward at GOSH? We will be travelling down for the 28th for surgery and brachytherapy.

minmooch Sat 12-Jan-13 13:22:23

I'm not there Daisy but I hope and pray that all goes well. I need to be at school each day with DS but I could come in to london one evening if you would like some company.

Praying4Beatrice Sun 13-Jan-13 01:42:08

daisy We go to GOSH onc. Not there on 28th though unless dates change. Have you been before?

Praying4Beatrice Sun 13-Jan-13 01:47:02

Also, min, awful remark from your mum. Really lacking in insight and just plain wrong.

I have a terrible relationship with mine -- it took her 2weeks to phone me after my bro told her about our diagnosis. But I'm ok with it because I have no expectations. I'm only mentioning it because sometimes it feels like everyone else has supportive parents and that's not the case for me at least.

TrazzleMISTLEtoes Sun 13-Jan-13 20:19:27

Gosh min that was extremely harsh and bloody insensitive of your mother. No idea what she was thinking.

It's been lovely to be home for so long but we're in tomorrow so that Joe can have his vas-Cath inserted first thing on Tuesday for his stem cell harvest.

The vas-Cath scares me enough, let alone the stem cell harvest! I can't get past the fact that they are going to take all his blood out. I know it's not all at the same time, but still... I know, I'm such a pansy sad.

min they HAVE to get enough stem cells from Joe... God only knows what happens if they don't, but he's definitely going to need them back within a few weeks <cries> I'm freaking terrified of all this. Absolutely terrified.

I know if the treatment kills him it will be within the next few months. I can't bear the thought that we could kill him trying to make him better. I know we have no choice but that's no comfort.

TrazzleMISTLEtoes Sun 13-Jan-13 20:22:49

Right, just googled vascath and not so scared of that anymore... Our Macmillan nurse led me to believe it was some giant rigid lump of plastic sticking out from his neck at right angles.

Almost cring with relief that its just a slightly bigger Hickman line stuck to the skin of the chest...

minmooch Sun 13-Jan-13 23:19:56

Trazzle oh it's just shit isn't it. The disease could kill them but so could the treatment. It's no choice is it? Not a choice anyone should face but its heartbreaking when it's just a child. sad we can only hope that the treatment is effective and as gentle as possible.

When my DS had his stem cell harvest he was very, very poorly so I don't know if that affected the quality/quantity of what was collected. Just to warn you the machine itself is a very big piece of equipment and it is very loud and it goes on for hours (maybe less time with a smaller person). I also was very aware of a strange smell - probably just hot machinery but not pleasant. I hope that it goes smoothly and they are able to collect what they need.

I am glad that you have had a good length of time at home with Joe. These times of semi normality will give you all some strength xxxxx

DianaTrent Mon 14-Jan-13 13:37:56

Wishing you and your DS all the very best for tomorrow, Trazzle. I hope the stem cell harvest goes off perfectly ready for his high dose.

Big hugs to everyone else and a massive kick in the shins to insensitive family members. I know how that feels unfortunately, and it is very hard to forgive the particularly vicious ones.

Love to you all and I hope 2013 is a kinder year for all of us.

TrazzleMISTLEtoes Mon 14-Jan-13 14:40:31

min we've been told it smells of tinned sweetcorn? Apparently it's the stuff they use to prevent clotting.

It should be around 4 hours unless he gets pins and needles and then they will slow it down. There is a chance they won't get enough stem cells but desperately hoping they do! Apparently it's fairly unusual for them not to get enough from neuroblastoma patients at this stage so I guess it should be ok......

Lilymaid Mon 14-Jan-13 23:03:24

We are rather annoyed. DS phoned the hospital (major teaching hospital) to confirm his appointment tomorrow - he is due a bone marrow test as well as his blood tests only to discover that although it is written on his appointment card, the hospital has no record. He's off back to the USA for the 2nd semester of his international year at the weekend, so may have to wait until late May for his next appointment (and his last appointment was in August). There shouldn't be any problem about delivering new medicine to him before he goes ... or so we hope.
I hope that people whose cancers are in an acute form don't have to put up with administrative blunders like this. DS is probably OK and his meds are unlikely to be changed but a check up would give some peace of mind.

minmooch Tue 15-Jan-13 06:49:10

How very frustrating Lilymaid. I presume there is no time to push for an emergency appointment before he goes? May I ask you a question? My DS has talked about going to Uni in America - his physical dufficulties at the moment would make it impossible and the cost but I had presumed it would be impossible to get health insurance for him. Has insurance been a problem?

And they make admin blunders with acute patients as well. My DS has just been prescribed a dose of antivirals for chicken pox - after a few days I questioned the dose and had been prescribed one tablet a day too many (5 instead of 4£. They also said he should take them for 3 weeks. On questioning they said he should have only been taking 4 a day (each tablet is a huge dose) and he could stop them after 5 days. These tablets increase urea and creatinine levels which can be dangerous for my son as he has had terrible kidney problems from chemo. The hospital have put in place an incident report so it doesn't happen to anyone else. Hopefully after just 5 days my DS will be ok but it could have been very different on 3 weeks too much dose. It makes you lose faith a little in the system.

Lilymaid Tue 15-Jan-13 10:31:30

Minmooch - I think your DS attends the same hospital as mine does at the moment (starts with an A). We asked him to phone up all last week (he's 21 so we can't do it for him) to confirm but he didn't bother. He should have known better as he had a poor experience there when he was younger and admitted for an operation when it was eventually discovered that the hospital hadn't actually put him on the operating list for that day.
As far as studying at a US university is concerned, DS had no problem getting on the university's own health insurance for the year. I'm not entirely sure of the position but it seems that certain states have long had laws that health insurance should be needs blind ... so people can't be excluded for pre-existing conditions. I think it is called Guaranteed Issue. As a result we are paying exactly the same as for any other student (can't quite remember how much but a few hundred pounds for the year) whereas a UK insurance company might either refuse insurance or charge stratospheric rates! Hopefully your DS can have a whirl in the States one day!

minmooch Thu 17-Jan-13 20:42:43

Fucking bastard cancer sad

Seeing how tired my son is, seeing how ravaged his body is, the scars, the disabilities. He can't jump sad he can't jog on the spot sad he just doesn't have the co-ordination anymore. We both laughed at his efforts but it broke both of us inside.

How can such a terrible thing happen to a child? I still can't accept it 14 months on. I fucking hate fucking cancer and the damage it does.

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