Children with Cancer

[Twunk]

Sadly we need a second thread :-(

My son Alex was diagnosed with ALL (Leukaemia) in July and we are making our way though the 2 years of treatment that are given here in the Netherlands.

If you want support, or wish to share your story, or can give support please do join us.

It's a shitty journey but together we'll get through it.

You too mmmmsleep big hugs xxxxx

Oh ((min)), ((mmmsleep)). Cancer is a total bastard. Hope there is an innocent explanation for both and the scans can bring reassurance.

I am hoping it's all just side effects. I am very much thinking of you both and your lovely sons xxxx

Spoke to dr and Alex's eye thing is a something something something which is to do with the lymphatic system getting a bit sluggish. Am to keep an eye on it.

Hello.
My daughter was diagnosed on Thursday with ALL. She's 2. And she's beautiful and I'm so scared. My head is spinning.
She starts treatment on Monday. I'm scared. Does anyone know what to expect? Is there anything I should be doing for her? Questions I should be asking? Thanks

Hope it's ok to post here?

Hi Lovelychops I cross posted with you there.

My DS Alex was diagnosed 6 months ago with ALL. We're based in holland though so I don't know full details of the UK system. There is a group on Facebook - I will send you the link via a pm.

The main thing about treatment is that it is curiously undramatic! And the younger children take it very much in their stride - Alex is 4 and whilst he has had a few side effects he's generally just in the place he's in that day, and whether that is tired, sad, happy, poorly...it's not cumulative. He doesn't say "I've been feeling like shit for 2 weeks now - when will I be better?"

They amaze us every day.

Sorry Lovelychops I should also have given you a big hug.

Honestly this is the worst bit. It does just get so much easier, I promise. xxxxxxxx

Thank you for replying. I used to see the thread title for children with cancer when it popped up in active conversations.... Can't believe I'm on it now.

I know. Me too

Sorry to hear about Alex. Thanks for the Pm too, I just showed it to DP and he said, it's great mumsnet isn't it.
I think it will really help us to talk to others who are going through a similar thing.

Hi lovelychops, welcome to the thread, sorry you have found yourself here. I don't know anything about ALL, as my son has a solid tumour, but I'm very often around. I'd second twunk about treatment being undramatic ( apart from the bit where they took 1.7k tumour out of 9.6k of baby of course- but with ALL presumably you don't face major surgery). i was surprised about chemo being outpatient, and chemo itself seems routine and cope-able with. The problems i have found are the infections, the unpredictability, and the permanent underlying cripplingly aching fear of loss. My son is totally oblivious to all of this, and has sailed through everything other than the surgery.

lovely chops welcome. sorry you find yourself in need of ygis thread but I was where you are now just in November and am so glad I came on. I've met lovely people and had great support. it does get better. the first few weeks are a total shock. don't make any major decisions in this time and be kind to yourselves and each other whilst recognising that there will be times you bark at each other out of sheer frustration and exhaustion. the first bit of all treatment is hard work but you will meet lots of lovely people along the way who will support you through it. accept help. we have friends who picked a day of the week to bring us a healthy home cooked meal to take the strain off. if someone offers say yes...they feel helpless and want to help so don't feel a burden. those are my top tips for early days. oh and if you can, invest in an ipad and load with apps. I did a thread on mnet asking for app ideas for my 2.5 yr old when we were given one and downloaded them all. invaluable. as was the suggestion for a griffin survivor case! in some areas there are charities that give ipads to kids with cancer so worth looking at that too. big hugs. cancer truly sucks but you will find the strength within you to face whatever it throws at you and as has already been said I find our 2yr old just takes each day as it comes. he loves going to the Marsden because they have fab playrooms. he gets lots of time with mummy when we have sleepovers. today we had fun spashing each other in the shower at the hospital. yesterday we did painting (we bring a craft bag with his overnight bag which has paint glue stickers googly eyes paper glitter etc and get like mr maker using the isolation aprons from outside the room to attempt to protect the room. essentially it is a crap situation to be in and there will be worrying and bad times but there are still smiles and giggles to be had and you will get there. hugs to you and your dh. xxx

sorry what an essay! I wasn't known for my good punctuation by my teachers ;-)

I'm assuming you're in uk. if you are and haven't seen your click sergeant social worker ask to. they give you a grant just for registering and advice on work/benefit entitlements and can help with dla application. also ask if there's an annual pass at your hospital. parking is expensive but there are often concessions to be had,ime you just have to ask.

Hello lovelychops I am so sorry you have had to join us. A diagnosis of any cancer is terrifying and when it is your child, doubly so. My son has an aggressive malignant brain tumour so I am unable to give any advice re treatment for ALL but I am an expert on long term stays in hospital and the relentless feeling of shock, horror and fear.

I hope that your DD sails through her treatment.

We are here to offer support and understanding. Xxx

mmmmsleep I hope the tests come back and show nothing. Everything is such a fear. And I think it pretty much always will be

min just massive hugs as always.

lovelychops so sorry you have to join us. My DS is 4 and finished treatment last month. We are extremely lucky that he's in remission but he has a very high chance of relapse so I'm sticking around. He also had tumours so I'm afraid I know very little about leukaemia.

I second the advice to take whatever help is offered and to ask for help if you need it. People dropped food food round for us at the start as well and it was a massive help not to have to think about dinner and not to have to cook after a long day at the hospital. Also people sent us a load of magazines and colouring books for J. Again, it all helps keep him entertained. DVDs for when he's having a bad day and doesn't feel like doing anything...

I also agree that treatment is very in dramatic. I couldn't sign the consent form for chemo because I was so scared of the side effects - I made DH do it(!!!). But in the end it's just a bag of fluid dropping in. Doesn't look scary at all.

And be kind to yourself. You WILL get used to this. It took me about 3 months to settle down. Make sure you get time for you and your DP wherever possible - just to eat together, chat together, talk things through together.

CLIC Sargent also run a volunteer programme where they can arrange for a volunteer to come round for a couple of hours every week for up to 3 months. They can clean, or help with the kids... Whatever you need.

I'm in Leeds. PM me if your DD is treated at the LGI because there are other sources of support round here too.

unbuckle sorry was it you with the GCSF? In all honesty, I'd think about putting a complaint in. It's unacceptable that your child's life is at risk (and in plain and simple terms, it is if they're febrile and neutropenic) because of a 9 day delay because they didn't want to have to do something on a weekend. It's not good enough.

Even talking to your consultant may help - unless it was their decision of course.

J still went neutropenic 50% of the time he was on GCSF but I dread to think how much worse he would have been without it.

His symptoms are getting worse :-( he can't shut his eye properly and his mouth feels strange. Wil be calling his consultant first thing in the morning.

((Min)), hope you and will can get some sleep and the consultant can offer some help or reassurance tomorrow.

I'm not ready for my son to die

Oh min xxxxxxxxxxxxxxxxxxxxx

oh min sending hugs. I'm not ready either. Let's hope we both get good news tomorrow. have you got eye drops at home to lubricate his eye overnight? and some mepore to tape his lid shut while he sleeps just to protect his eye from drying out. sorry last thing you want to think of I'm sure. can you call the on call reg to give them a heads up so they pass on to morning registrar to get cracking with organising a scan. might speed things up for you? sending lots of love xxx

Min and mmmmsleep you are both very much in my thoughts today.

Sorry I haven't been around. Will read through and post properly later but just wanted to send big hugs to min and mmmmsleep. Am thinking of and praying for you both. I wish desperately I could do something to make this easier on you both xxxx

Hi everyone, I am sorry I have been absent for so long. I will try and catch up in a bit.

minmooch and mmmmsleep I am thinking of you and really hope everything is ok xxxx

lovelychops I am so sorry you have had cause to join us. Twunk is right - this really is the worst bit. My little boy was diagnosed with ALL two years ago and, although he is still in the maintenance phase of treatment (boys have 3 years, girls 2) he is leading a pretty normal life. He has started school (and appears to be some sort of mathematical genius!), goes to gymnastics and swimming lessons and is like every other little 5 year old. Whereabouts in the UK are you?

Lots of love to you all xxxx

You're welcome anytime Tabitha