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.

Bumping from my stressed out, signed-off haze.

Oh Kinky I'm sorry you're having such a rough time. Let me know when you're next back and we'll grab a coffee. I am a near-permanent fixture at the hospital at the moment. The nurses assure me that we aren't in the most for people that aren't in permanently... but I think they're lying .

DS' first round of tests to see what if anything the chemo is doing start this week . I can't believe how stressed out I used to get over such small stuff! Man, now I have a better idea!!!

Another kidney function test today but as DS has c.diff and is on 3 different antibiotics, I'm expecting his potassium levels to be back down and for him to be staying in. I hate that with febrile neutropenia they just have to throw everything at the germs - I understand why - DS doesn't deal well with antibiotics and if the infection doesn't knock him for six, or the next round of chemo, the antibiotics certainly will .

Hope you are all doing ok.

Hi everyone

Kinky I assume that means you have been signed off from work? I hope that you can use this time to gather your strength. Try, try not to do too much . How's your DD?

Trazzle I'm sorry that your DS is having such a rough ride and thereby you too. In a way it was slightly easier for us as there was no going home for 5 and half months as Will was too poorly. When I say easier I mean we just got into a routine of living in the hospital. I hope that your Zjoe starts to get an easier time of it.

As for us we have our cake sale tomorrow in aid of Cancer Research UK. We have baked our little socks off and have lots of people baking too. Also we've made Christmas puds, piccalillis, pesto sauces, and marmalades. I am worrying that we will either have too many cakes and no people or too many people and no cakes! As a method of distraction it's been good. But I am soooooooo tired. My body, heart and soul are so tired. I can't ever imagine a time feeling normal.

Scan results on Tuesday. I feel sick. Please, please, please let them be good. Please,please, please let my son not have suffered all this shit for nothing. Please, please, please let him have a chance to grow into a man and have a life.

Fucking bastard cancer

Fingers tightly crossed for you min. DS' first set of scans to see how the chemo is going are this week. Maybe I've said that before, sorry...

Jeez, how do you cope with this crazy rollercoaster of emotions? I've been fairly positive all week and then Friday and today I've turned in to a complete mardy cow. I am so impatient and so bloody ANGRY. At anyone and everyone. I got really stroppy with my favourite nurse on Friday when we turned up to the ward for a test, as directed, and he said they'd changed the appointment to the day clinic. All we had to do was turn round and get in a lift but blimey, you'd think he'd asked me to go to another hospital. I don't know what's come over me. I hate people to think I'm rude but I wouldn't blame anyone for thinking that right now...

Will be crossing everything for your DS too Trazzles. I'm in hospital again on the 22nd if you are around, though I am a mess!

I've spend two years hiding how I feel though. Think the best way is to go with it. I still wish I had a place to put a punch bag in my house. I think it would be very beneficial to be able to beat the shit out of it.

min, all the very best of luck for tomorrow. Fingers firmly crossed for you here.

oneday I hope things are going OK for your DD.

All the very best for your DS's scans too Trazzle. I hope he has given the c.diff a good kicking.

Hope you're feeling much better Kinky

Queen when was the last dose of vinc? I think it can take a while for the nerves to repair from that. I know DD had the odd accident all through maintenance and had very little warning. She didn't get RT or etoposide so I don't know how they affect things, although I have heard others complain about the RT causing long deep sleeps with loss of control for some time after.

DH was getting eye damage from raised intracranial pressure so had a shunt fitted a few days ago. He is recovering well and we enjoyed DD's visit at the weekend.

Hugs to all of you. I wish nobody had to go through any of this.

Hi all

Well we had the scan results back today. Its not the best news, but the next best thing I suppose. The best news would have been that the tumour was gone. The next best news is that it has shrunk - it has substantially shrunk.

We went through all the scans from day 1, day after surgery, before radiotherapy, after radiotherapy, 6 months ago and two weeks ago. I had never seen any of them before and nor had Will but today he wanted to see them all to understand it all properly. The tumour had been the size of a peach During surgery they managed to remove 80 per cent of this, unable to remove the remaining 20 per cent as this was too close to doing terrible damage. After radiotherapy the 20 percent bit looked like it had got bigger, but they thought it was perhaps swelling rather than growth. The scan from two weeks ago shows that it has substantially shrunk - which is good news.

The consultant said that the radiotherapy will still be having an effect on it. His maintenance chemo will still be having an effect on it. They are hoping that in 6 months time there will no tumour left but if there is then Will will have to enter clinical trials.

They cannot at this stage increase his chemo strength wise as his kidneys are not sufficiently recovered. They cannot do any more surgery as they will do untold damage. The damage that has been done by the tumour and/or surgery is likely to be permanent although he will get stronger and hopefully overcome some of his problems. He will not get back to where he was a year ago (physically).

On the one hand it is good news - the tumour has shrunk. On the other hand it is still there. The consultant said we are still in 'choppy waters' but that the progress was going in the right direction.

He obviously cannot guarantee any outcome. The tumour is very agressive. But it seems to be reacting to all the treatment.

So - not great news, but not really bad news - somewhere in between. And another 6 months to wait.

I am pleased that the tumour has shrunk and not grown bigger nor multiplied but I am also upset that it is still there = very confused emotions. I am happy, sad, hopeful, frightened, confused, tired - all in one go.

Maybe tomorrow after a rest I may be able to process it all a bit more. My mum has rung and said we must be so relieved, and tonight I should be able to sleep a little easier! No, it's still there, it may be smaller, but its still fucking there.

I am so very tired so please excuse no personal messages. My love to each and every one.

Min thanks for update I have been thinking of you today. X

Love back from me, min, thank you for the update. I wish you'd had even better news though, dear only knows you and your DS deserve it. Everything crossed that bastard keeps shrinking until every scrap is gone forever.

Can I ask a quick question?

I'll help if I can Orange but I'm very tired and off to bed in a mo

Cut a long story short.. Child I work with on a 1-1 has ALL ( I work with him but am now very close to family) I want know roughly how much treatment he left? I want to ask but am scared of answer. ( that sounds pathetic). It will be two years in Jan since he was first treated. He had his vincristine Friday so has been in pain today.

I can't help I'm afraid. But don't be afraid to ask his family. If you are close they will talk honestly with you and be grateful you care enough to ask.

Night all xxxxxxx

Night x

orange I don't know for sure but thought the treatment for boys was 2 1/2 to 3 years but I don't know for certain.

min hugs. What a worrying limbo for you to be in. It must be so hard to get a grip on how the news has made you feel. Sorry, I'm probably saying all the wrong things. My fingers are so tightly crossed for the best news next time.

Hi min, this is a long, long journey. Shrinkage in tumour size IS positive, but I know what you mean about it still being there. Others really don't understand. The number of times people tell me to stay positive, when they don't know the half of it- it would floor the strongest person. I have had some bad news about a fellow patient; brings it all back that we are far from out of the woods.
Cancer is fucking evil, no child should ever ever have to go through it. Life is harsh and cruel and unfair.

Wheaten- last vinc was about 14 months ago. Other neuropathy seems to have recovered in ankles and feet- but we are still seeing improvements in walking, running, going up stairs etc. maybe it is just a matter if time I bloody hope so x

Hi all

Minmooch, I'm so glad the news was positive, but can understand your mixed emotions. How is your son after the appointment?

Orange, my son has ALL and has just had his third vincristine of long term maintenance. His end of treatment date is in April 2015 - exactly 3 years and 3 months since diagnosis date. Typing that I have just realised that he was 3yrs and 3mths old at diagnosis - half of his life will have been fighting leukaemia!

I hope everyone else is ok. We are starting to settle into a more normal life - the new normal. He is doing so well, but I am still so scared. Generally I am very upbeat and positive, but from time to time I am so full of anger, hurt and rage. It's quite scary really.

min I am very pleased it wasn't bad news. It might not be the best you could have hoped for, but at least you can keep moving on from this point. You are going the right way. I hope you did manage to get some rest, you must be really shattered. I'm sorry I can't really say anything useful, except I am here if you want to talk. Sending love.

I'm pleased your son is settling down windy. Many of the younger boys that I know with ALL seem to have quite normal lives, to the point that people need reminding they are still going through this treatment.

ALL - boys get a year longer because it hides in testicles was what I was told. Girls do 2.3 years. It feels like a life sentence at that long, let alone with another year on top.

Big hellos to everyone else. I hope you are all okay.

DD is neutropenic and full of cold. Her temperature keeps creeping up. Am keeping fingers crossed that we don't end up in hospital again.

kinky I hope she manages to fight the cold off. I really hope you don't end up in hospital, but if you do give me a bell... We're in for chemo #5 today until the weekend.

We have a meeting on Friday morning for the initial results from the first half of the chemo. I can't believe we are (hopefully) halfway through the chemo already... and I'm so scared to find out whether or not it seems to be working. I'm trying not to get het up as the Drs keep saying that its just to get abasic idea rather than the be-all and end-all, but whenever I ask about something positive like "I heard that neuroblastoma often responds well to chemo because its so aggressive", I get met with a wince and a "well, you could say in some cases it might do...".

I know they can't make blanket statements, and I do understand how it all works but the negativity (or maybe just realism) is really grinding me down.

DS' consultant, at least, is relatively positive that the chemo is doing something.

min I hadn't really considered the possibility that it might not be doing enough. I'm so pleased the tumour is heading in the right direction though. I hope you managed some sleep.

kinky we shouldn't be in on 22nd, not that that means anything at the moment! Hope not to see you this visit either IYSWIM.

It's DH's birthday tomorrow. So hard to be celebrating when DS will be in hospital and we're both secretly wondering what we'll be living with next birthday.

Dear me. I need a serious injection of positivity!!!

I will be thinking of you trazzles and keeping everything crossed that the results are good. I remember the feeling after the first block of chemo. I hope you manage to have a lovely day tomorrow, though I know it will be difficult for you all. Sending positive thoughts for you and your DS .

We will definitely catch up at some point soon, and I will definitely let you know if we end up in. Last time she had a cold it became pneumonia .

Hope meeting is okay trazzles

Trazzle thinking of you and hoping you had positive news today.

Kinky how's your DD? I hope she is able to fight off the cold. It's horrible when you know they are neutrapenic - it just increases the worry.

As for us I am still shattered. I think I am still tired from the meeting this week. But been busy busy busy with Will at school. I just could do with some serious sleep - dear God it's been over a year now and I just want to lay down and sleeeeeeeeep.

Will is feeling very positive but I am now worried that he is pushing himself too much.

Windy glad life is settling for you. I am with you on the hurt, anger and rage.

Farlo hope your DH is doing on. Will managed not to have a shunt but we got pretty close at times.

Queen sorry you had bad news - it's all so horrid (understatement if ever there was one!). I too hate it when people say stay positive - it will make no difference to the outcome.

Waving hello to everyone!

Much love everyone, keep on keeping on.

Fucking bastard cancer.

Farlo that should have read hope you DH is doing ok!

Kinky in the nicest possible way I'm glad not to have seen you this week - very much hoping that its because your DD is doing great.

Had the good news today that DS' tumour is shrinking and that his bone marrow sample showed no signs of cancer. It's the best news we could have hoped for at this stage.

Obviously we still have a really long way to go, but for tonight we remain hopeful and feel extremely lucky.