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.

Hi min, hope your DS is still doing well. Does he like Christmas? I always want to buy my presents and things early, just because it is something to look forward to amongst all the crappy things that we have to deal with as part of everyday life.

I'm not so good at the moment. I'm really struggling at work with stress symptoms - I have chronic IBS and it is making it so hard to function. I just need a rest. I think everything is finally catching up with me and I'm worn out with it all. I'm so irrationally anxious. I just can't control it. And I'm very teary too.

They are thinking of putting DDs chemo dose back up again this week, so it won't be long before counts drop and infections abound.

Plus, and this is really embarrassing, I am worried about money but I can't stop myself from spending at the moment. It is compulsive.

I think I'm a mess full stop.

I want to come to your house and join in the festive prep!! Love it . Plus, we are going back to Dparents' this year as requested by DD, so I feel all redundant. This time last year I was in full baking mode. I'm itching to do some Christmassy stuff.

Love to all too.

Hello , I'm new here :)

My (then) 15 month old was diagnosed with rhabdomyosarcoma on his prostate in July. We are coming up for our 5th cycle of chemo on Tuesday, but think we might delay it as he is full of the cold :(

We have been waiting for 3 weeks now to find out where we go from here. After 3 lots of chemo his tumour (which was about 6cm big) has shrunk by 88%, so the oncologist still hasn't decided what he wants to do. We were told at the start it would be chemo for 3 cycles, then surgery, then radiotherapy. After it shrunk so much he doesn't have a plan, and is discussing it with everyone. It's amazing it shrunk so much, but torturous waiting on them saying what they are doing. I may go insane. Oh, and we have the joy of being neutropenic for basically the whole cycle of chemo, bar 3 days.

Hello from us anyway :)

Hi daisy. I'm pleased his tumour has shrunk so much, but I hope they sort out what they are doing quickly. DD is also regularly neutropenic, to the point she has been on reduced chemo for 3 months. But, I think they are putting it back up this week, just in time for winter bug season . It's lovely to meet you and I hope that you get your next steps soon. I understand what you mean about it driving you mad. Sending love to you all.

Daisy hi, I'm pretty new too (just been diagnosed this month). Glad to hear that your DD's tumour has shrunk so much. That is fantastic news. I hope you find out what is happening next, soon.

Kinky so sorry that you are having such a rough time of it. I alsio get IBS. I think often people dont understand how completely it can rule your life when you're having a bad attack. Mine has flared up again too (unsurprisingly) and I was thinking of going to the gp but I guess all they will say is to reduce my stress levels. I can't see that happening anytime soon... .

I would imagine the compulsive spending is also stress related. I'm not an expert by any means and I hope I don't sound sarcastic or rude etc. have you tried maybe finding something to buy and then leaving the shop or the computer for, say, 15 minutes before purchasing?

I really don't know what to suggest for the stress. I'm sorry that putting up DD's chemo is going to be so hard on all of you.

If you want to scream and rant etc, we're in-patients on Thursday and Friday this week, I think, unless DS gets an infection first...

Hi Daisy welcome to our support group. Sorry that you have had to join us but it is a safe place to scream and shout and talk about your fears with others who understand and don't need protecting. So pleased to hear that your DS tumour has shrunk so much. I hope that they come up with a plan quickly so you can focus on working your way through that.

Kinky sorry that you are not feeling any stronger. I don't have IBS so can't offer any wise words. My stress 'thing' (apart from anxiety dreams) are my teeth - terrible tooth ache, gum infections etc. It's all stress related and the only thing they can treat is the infection with horrible antibiotics! Only for it to flare up soon after the course ends! I am with you on the compulsive spending - I am on my own, no job, only reliant on benefits and small amount of maintenance from ex but I too cannot stop spending.

Credit cards getting full and just spent £2,800 on a wheelchair for DS. The attachment he wants to add to this to make it battery powered us another £2,800! How can I not get it though? Fit and healthy a year ago and now disabled - he needs all the independence he can get.

I have full admiration for the hospitals that treated and still treat my DS. The outpatient services though are shite! I am considering a formal complaint against the physiotherapist and as for the NHS wheelchair service I could weep. Their criteria for what they can give a patient is not based on any reality I can fathom.

I am sorry that your anxiety levels are out of control. I find mindless tv the only thing that is getting me through. I have to have the tv on when I go to sleep so that I am not alone with my worries. I still have no concentration to read - in hospital I could I think because I knew there were qualified doctors and nurses just a step away so I could switch off for a while. At home and down to me there is no switching off.

Hi Trazzle sorry that you too are struggling with IBS. With having to deal with our sick children you'd think someone would give us a break healthwise! I hope that your DS is coping with the chemo

I spent my night off from kids with V&D - thanks body for that no chance of rest and sleep or doing anything nice for me! Aarrggghh! I had to drag myself out to walk the dog but spent the walk trying not to be sick and clenching buttocks so no embarrassing accident!

Eldest DS gets two weeks for half term so at least we get some rime to rest and not dash about to and from school. Next week we have two day trips up to Addenbrookes - one for double dose chemo, speech and language therapist and opthomolagist, and one day for the dreaded scan. It's never ending! Today we are picking up the new, fitted £350 wheelchair that the NHS says my son deserves, the one that doesn't give him any independence, the one that is still so heavy it does my back in when I have to push my son up and gradient. The one that was an urgent referral that we have been waiting for since April! Tomorrow we see the physiotherapist who has not seen my son since mid-July because her budget does not cover for brain tumours. Oh and she has a device to fit in his shoes to help with his foot placement and therefore help his balance and thus his safety that was an urgent referral in August! It makes my blood boil!

Sorry for the rambling post - my head is all over the place.

Keep on keeping on - Kinky

Fucking bastard cancer!

Love to all

Sorry Daisy, DS. Apologies but I don't do anything well before 7.30am! Including reading, apparently...

Hi all, please help me get some balance. My LO has been off food for a few days. That is all, no other symptoms.
I, of course, am thinking the worst, am totally terrified, can't think straight, can't sleep ... everything. A relapse is untreatable in our case.

Last week she had a temperature for a couple of days, but stupid thermometer had run out of battery so I don't know how high. Also I have had a cold, sore throat and things. We are nearing the end of the first 8 weeks at school so could also just be very tired...

I'm driving myself mad for no reason.

Aren't I??

Have you had your DD checked out Queen? Just to put your mind at ease?

This half term is ridiculously long and wearing everyone out.

Thank you trazzles for the offer of a chat. I'm not sure what's happening yet this week with hospital, but it would be nice to catch up with you at some point.

Thanks min. We just keep on keeping on . I am horrified that you are funding medical equipment yourself. Could you try the charities? You should be getting help. I get the rambling. My head is also done in.

I am so knackered. I could happily have a little cry right now. Everything is tired. DD, conversely, is fairly okay. I suspect this is why all my crappy 'symptoms' are popping up. It's like teacher flu - when you stop going twenty to the dozen, you get sick. Because I'm having this break from neutropenia, fear and hospital-related stress, I am having a mini-breakdown.

I've just eaten a shit load of heroes too, which is no good as I'm supposed to be on slimming world. I've finally managed to lose 21lbs of the 3st I gained comfort eating my way through the first 6 months of treatment. Don't much want to pile it back on.

I need to get a grip. I need half term so I can have a bloody rest.

Fucking bastard cancer indeed.

Oh Qheen of course you are driving yourself mad - you have been to hell and back with your dd and every little thing is going to worry you. There is no point in say try not to worry - can you not ring your dd's consultant/specialist nurse to talk it over with? After you they will know your dd best and will be in the best place to advise you what you should do. Much love xxxxxx

Kinky just a few more days and then you are on half term (assuming that you get half term off). Hold on until then. I see your 'heroes' and I raise you two Mars Bars (I did feel sick after eating them and my teeth hurt too but it gave me the sugar rush to continue my day!) Well done on your weight loss - i'm still in the comfort eating stage.

My compulsive spending goes on - we have been invited to the premiere of the new James Bond movie tomorrow night (woohoooooo!) so eldest son needs black trousers as it is black tie (got a jacket he can borrow). Anyway, he's probably never going to wear the trousers again so I bought the suit jacket to go with it as he can wear it at school (but he does not need it). Spending money is a bit like the feeling I get when I eat chocolate!

Why is it that my mother is the only person not to 'get me'. My best friend rang this morning and we had a lovely chat. I was fed up (understatement) but she lets me rant on and lets me know I have every good reason to be cross with the world. My mother, on the other hand, has just come back from a lovely week's holiday in Spain and rings when I am tired and fed up, (I've also got my period so doubly pissed off). I told her I was tired and fed up and she asked me why? It's like a red rag to a bull! I then proceed to tell her that my bin pisses me off, it's too small. She tells me it's not - but it is when you have to put nightly feed bottles in it, and all the paraphenalia. It's not the bin I'm cross with, its my ds cancer I'm cross with but she doesnt seem to be able to say to me that. She just said 'Oh I've got no sympathy with you if you're just cross with the bin'. Am I wrong to think that of all people I should be able to be honest with it's my mother? Can I just not say I am well and truly pissed off with life and just want her to say I can be pissed off and not make me feel even worse for being pissed off. Surely I've got a good enough reason to be pissed off?

It's been one of those days. Just fucking fed up of being fucking fed up!

Right, onwards and upwards!

Oh and then she says 'well have an early night if you are that tired'. Aaaaaarrrrrgggghhhhhhhhhhh if only that would do it!

I know, I know she can't say anything that would ultimately make any of it better ..... but still aaaaaarrrrrrrrgggggghhhhhhhh!

Really and truly now, onwards and upwards!

Fucking bastard shitting fucking cancer - I fucking hate you

I have just spent an hour holding my child whilst he has cried himself to sleep. He made me promise that if the scan is bad news that I will not leave him and that I will stay with him to the end.

what a fucking shitting awful disease can do this to a child? He is 16 and should be worried about his A levels and girls - not worrying about dying and asking his mum to be with him.

I hate this world that can do this to a child I hate myself that I can't protect him I hate, just hate

Min I'm so sorry. I'm so sorry that that has been your evening.

Like a fucking moron I accidentally read DS' chances of survival. 35 fucking percent. And that's not factoring in the likelihood of a relapse.

Fucking bastard cancer.

Trazzle many hugs. No wise words to offer you just sending you hugs.

I can barely see out of my eyes they are so puffy from crying last night

Thanks for the welcome everyone. Today is so shit. Chemo has been put back by a week as ds has a cold and his bloods weren't up yet. To look at him he looks so healthy. You wouldn't know there was anything wrong with him. Yet he has cancer and may die. Fuck you cancer, you're a cunt.

min there's not much any of us can say to that. How do you deal with that? I feel every bit of your anger. It is so cruel.

Trazzles I'm really sorry to read that. I would ignore it, tbh. I looked at it like, any percentage shows you are in the shit. All you can do is like any of us do, hope that you are a lucky one. I'm sorry that this is happening to you all.

Daisy we have that roller coaster a lot. I hope his counts improve soon. Sending love.

God, it's really shit. School today are 'concerned' about DDs lack of attendance. School were concerned when she went in too much too. I'm am being pulled in all directions and cannot win.

I feel like retreating somewhere dark for a few months.

Hello everyone! How are we all?

Queen how is your DD? Is she eating again?

Trazzle how's your sin coping with the CHEMO? How are you?

Daisy has your Ds's cold gone? And counts up?

Kinky how are you doing? And your DD? Half term for you now and I hope you get a rest.

As for us we are ok. Well, not really but that's the standard answer isn't it? My son is frightened of dying - how can everything be ok? [hsad]

To distract ourselves we have made 12 Christmas Puddings, another 7 to go, for the cake sale. We keep singing 'Its beginning to smell alot like Christmas' like complete loons! Hey ho, you do what you do to get through.

Love to each and everyone of us xxxxxxx

Trazzle sin should of course read DS xxx

min no, things have taken yet another depressingly shitty turn here. Apparently my ASC DD has been completely bottling up how she feels, and now she's having an emotional crisis and the psychologists have been called. She's questioning whether it's all worth it . She hadn't told us about any of this, but now it looks like if we don't get a solution pronto, I might not be able to leave her alone at the end of half term week.

At this minute, there are no words.

Oh good God kinky. Exactly what you don't need right now. Are you ok?

I'm guessing not but is there anything I can do? Please just let me know. I can't imagine how hard it must be to be a teenager going through such strong emotions.

Oh Kinky I am so sorry . I am so sorry for your daughter and so sorry for you sad] I hope that he psychologists can help her talk it through with her. It's so difficult to know what to do for them .

I have no wise words to offer. Fucking bastard cancer

I am holding you close in my thoughts. xxxx

Hi, I haven't posted here in a while, inexcusable really. I've done what people in real life do and avoid the subject when they don't know what to say. So I'm sorry for that and so sorry for those having a shit time at the moment. Kinky, min, trazzle - I can't imagine how hard it is for you - it just seems you have setback after setback; it must be soul destroying. I have been keeping an eye on things here and think of you often.

My experience is so different from all of yours and I feel guilty that we're having such a smooth ride. DS is almost on his final cycle, he's coped so well - we've not had any admissions for infections or problems. He changed from cisplatin to carboplatin on cycle 6 as his high frequency hearing had deteriorated to the limit his protocol allows. The carboplatin is sending his HB and platelets right down (3.3 and 19 at one point), so he's had a few transfusions of both, but otherwise he's fine.

End of treatment scan is on Nov 26th, so fingers crossed for that. And then into the great unknown ...

Anyway, love and strength to you all and your families.

Hi Stinky don't feel guilty that all is running smoothly. We are thrilled to hear that at least one child is not having such a rough ride. We are here for you when you need our support.

Love and strength gratefully received and waiting here for you should you need.

Love to all

Hi guys, how are we all? Ds cold has gone, goodness knows how, he is flat zero neutrophils for at least a week, so how he fought it off, plus the cold, I will never know. Had our blood test on Saturday (last week, not yesterday lol) and he was 0.5, so no chemo last week, tested again on wednesday and he was up to 7! So it's chemo a week late on tuesday, hopefully out again on thursday morning. Maybe we will get to find out what the plan for him is, as we are on to cycle 5 now, and no idea what's going on, whether its more chemo (he is meant to have another 4 cycles they said at the beginning), radiotherapy, or surgery. No idea. I'm hoping that they will say keep going with the chemo just now to see if the tumour shrinks more after it shrunk so much initially. Hate going into hospital. Ds2 comes with me, and he is asd and keeping him occupied is a nightmare. He is also in a huff as we won't hae halloween at home, so told him he can dress up in hospital, and we can have halloween properly at home the next day. Roll on Thursday.

Sending love to all [hsmile] [hsmile] [hsmile]