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.

[Twunk]

That was to unbuckle. I give up

[hazlinh]

Thank you Twunk!

[minmooch]

Haz that's great news about the DNA tests. Long may it continue and that you get back out if hospital soon.

Waving hello at everyone.

Sorry for my absence. I read every day. I just can't seem to post here - I seem to be able to pretend elsewhere and post on other threads. I'm angry that I (and all of us) need to be here. I'm so tired of living life like this - yet the alternative is horrid. If my son beats cancer he is left with lifelong disabilities that make an independent life difficult for him. I'm so sad for him

I'm tired if being tired, sad, fearful, angry, desperate, but mostly tired.

My DS was showing very slight symptoms this time two years ago. We were away at half term walking in Somerset. He was a bit wobbly and very tired but that's all. A week later he had been having mild but frequent headaches. Not bad enough to stop him going back to school on the Monday (involving a train ride, 15 min walk, full day at school, 15 walk to train). On the Tuesday morning (1st November 2011) he was being sick, but it didn't smell of sick. My mum came over and after a brief chat with my GP we took him up to A&E where my GP had warned the neuro team we were coming in. An hour after being admitted he was having a Ct or MRI (can't remember) and at lunchtime I was told he had a large brain tumour :-(. We were transferred that evening to Addenbrookes where we stayed for 5 and a half months before DS was discharged to go home.

I'm having flashbacks to that day. What ifs - what if I had taken him earlier although he had been seen by a different GP on the Thursday before.

We've lived this journey for nearly two years and still don't know what the outcome will be. Tumour is still there. Disabities are permanent. We live from MRI to MRI thinking we might have some answers. Next MRI was booked on the day if my DS's 18th birthday - I have requested they change it.

There is nothing my friends can say or do to help - cancer is cancer whether I'm at home looking after my son or in a day spa treatment where I pretend everything is ok. I'm finding it more and more difficult with friends and family as all their lives have continued to move forward over the last two years ( as they are entitled to) but we are still stuck in this nightmare.

My other DS is fit and healthy and enjoying 6th form at school and moving forward with his life. I work very hard to ensure he has a normal a life as possible with a sick older brother.

I'm tired of being strong. I'm tired of people saying 'I don't know how you do it'. I'm tired of the battle. I'm tired of doing it all alone - and that means doing everything else - the house still has to run, shopping and cooking has to be done, grass cut, bins emptied, floors mopped etc etc etc.

I'm thinking of having a downstairs toilet and shower room put in incase there comes a time that my DS cannot make it up the stairs. I'm too tired to ring builders and depressed about the reason for it.

I'm tired, tired, tired, cross, cross, cross and I just want to cry.

And that's why I don't post often because it all comes pouring out .

[Twunk]

Oh ((((((Min)))))))

You never know what any chain of events could have brought about. No one would think "oh it's cancer" - I'm slightly amazed your doc even suspected it at that point. So many are sent home. Alex was almost diagnosed with cancer 3 or 4 weeks before the diagnosis. But then it disappeared from his blood and they thought it was a virus!

It is beyond cruelty what you must go through. I wish I was down the road and could just have a cuppa with you.

Why don't you try one of the things on your list? I too have a growing list of things I Have Not Done. Yesterday I started one of them. I can't do my normal things - can't sew, find it hard to cook, can't read, etc so I know exactly where you are coming from. But just make one phonecall? Or send one email? Do a little bit every day.

Your son is amazing. You don't know it right now but honestly you are amazing. You're allowed to lick your wounds. But maybe another visit to your GP is in order?

Have a hug from me. My hugs are great

[unbuckle]

((Min)). It is hard not to look back at the time before cancer. But I think all that happens is that you torture yourself with what ifs and with remembering what life was like without this intolerable burden.

Even if you can't post, we are here.

[minmooch]

Thank you everyone. Trying not to have a pity party but today had been a tearful one.

Tomorrow will be better xx

[Nocakeformeplease]

Oh min - I'm so so sorry. What you are being asked to endure is just beyond comprehension. I wish from the bottom of my heart there was something I could do or say to bring you comfort. But we are here to listen, always xx

Unbuckle - omg, I know what you mean about the interruptions. I know some are inevitable but it was unreal. Everyone who visited said they wouldn't have believed it if they hadn't been there. The machine to administer the drugs went off every 5 minutes... 20 minutes later they would answer it and put the flush in which of course finish the second they stepped out the door.... Often there would be several alarms going off at once. It sounds like a silly thing to moan about it but D was in so much pain, it broke my hear when he would finally get to sleep only to get woken straight away. We also had a bad experience with one particular nurse, fortunately she wasn't on when he had the actual op.

Hazlinh - your DD sounds like she is doing really well and like Twunk, I am cautiously very optimistic for he too. I completely understand what you mean about leaving the safety of the hospital. I hope you are all enjoying being home now.

Oh Trazzles - it all sounds very stressful. I really hope DD is feeling better soon. I can't believe you could be near the end of treatment. It goes without saying that I have everything crossed that everything goes to plan. It's such a scary mix of emotions isn't it - wishing the treatment to be over but the fear of what happens next xx

Twunk - I hope you have a nice lunch and a trip to London next year sounds like a good plan.

Well we're still at home yay! D is back at school today although he was a bit tearful when I dropped him off . We're at the Marsden later for antibiotics and vinc. And I spoke too soon about his hair.... It's definitely falling out now. Funny to think when it first happened I cried, this time I was over the moon - which is ridiculous as I have been told several times it doesn't mean anything bad even f he doesn't lose it.

[Twunk]

When I was last back from hospital I think I slept more than 18 hours I was so exhausted. Was only in 4 nights! But the constant I interruptions would drive anyone to drink.

[unbuckle]

In a way i am relieved you agree on the interruptions and sleep, twunk and nocake, as i was coming round to thinking i was being totally unreasonable. But yes, the beeping. And the flush. And the stepping out even though they've put it on for 10 mins and it beeps when there are 5 mins to go. They gave the same meds at the marsden with , as far as i could tell, no beeping whatsoever, and isaac slept for 14 hours straight when we got there.

I am stressed just thinking about it, and feel it will be so much worse when he is in pain from the op. It seems so cruel to wake them up just as soon as they are sleeping because of a potential occlusion or the end of infusion warning.

I turn the beeping off and press the call button. But that relies on the beeping waking me before it wakes him.

Seeing the surgeon tomorrow. Will try not to go on a rant about the beeping or the fact they call me mum when there is no need to call me anything if they can't remember my name as isaac can't actually talk, and i am not their fucking mother.

Best to get that out here rather than during the appointment!

[FuckerTwunk]

Please excuse namechange!

I don't think the nurses actually call me anything! My actual name I think, should it come up. Yes we get the pre-alarm-alarm. Then the alarm. Then the alarm with extra alarming noises. Oh yes.

Let us know how it went with the surgeon.

[Trazzletoes]

I mostly get "Mum" which I hate. One Dr and a couple of Nurses call me "Trazzle". Just this week I've had a couple of: "Hello Mrs Toes" which took me by surprise.

I like to play a little game and try to get the Health Professional to address me by name to see whether they know it.

I appreciate they are busy and there are an awful lot of names, and to be fair, EVERYONE knows Joseph's name so I can't complain really, but it does make a difference to me if someone has remembered my name. It is on the front of his notes after all.

[Trazzletoes]

Talking of alarms: my personal fave is the morphine scream. Particularly at, say, 2.37am.

[unbuckle]

I tried repeating 'my name is unbuckle' after every sentence they said but with 0 success. What really bugged me is i was in with Isaac and his twin and everyone remembered his twin's name.
Next time i might try 'did you mean to be so rude'.

So, the good news is we have a date, in 2 weeks. The bad news being he needs two ops, one on each side, and is likely to need a kidney transplant in the long term.

Have slightly itchy eyes but managed not to burst into tears at that point.

[Twunk]

I think if they actually called you unbuckle you'd be completely freaked out!

Goodness what a lot little Isaac must go through! I hope the transplant proves unnecessary but you will cross that bridge when you come to it. Well done for not crying, I try not to as I then find it impossible to ask questions.

Hugs to you.

minmooch I hope you are getting through the days with some joy to find in them. Hazlinh I hope DD is continuing to do well.

[Twunk]

Trazzletoes I am also particularly fond of alarms around 2.30am. They are usually just at the very point I've finally dropped off.

[unbuckle]

Just had my last day at work for 5 weeks. Less successful than yesterday on the not crying. Hard to deal with needing to tell loads of people as i hand over work. 'Nothing serious i hope'....

[Twunk]

Oh god no anything but that

"My son has cancer" being something I can type okay, but saying it still has me dissolving.

Courage, mon ami x

[Nocakeformeplease]

Oh Unbuckle - im glad you have a date but I know how scary this bit is. Will they do both ops during the same stay? I too really hope the transplant proves unnecessary. I think you did amazing not to cry, I seem to blub at the drop of a hat these days. I hate, hate, hate the cancer word and normally say kidney tumour as I can't bring myself cancer out loud.

I must be a bit strange as I always get called mum, but it doesn't bothered me. In fact I've never thought until now!

I'm also very dim too as when you said Trazzles that they called you Trazzles or Mrs Toes, for a moment I thought you meant they literally called you that. I was wondering how they knew your MN name

How is Alex Twunk? Are you at home at the moment?

Hope DD is still doing well Hazlinh.

Thinking of you min xx

D has managed three full days at school this week . The doctors don't really understand it as the blood cultures are still showing positive for infection but he is very well in himself, so he had to have blood taken from his hand yesterday to see if the infection is in the line. Poor little thing was distraught as you can imagine - it broke my heart because he was sobbing but asking so politely for them not to put the needle in again . They are talking about awaiting his anti-b's but is me really hoping they don't have to as the other ones are four times a day so would mean being re-admitted.

[Stinkyfeet]

Just thought I'd check in to say that ds1 had his scan on Monday; we had the result on Weds that the tumours in his spine have shrunk So he's continuing on the same chemo until we find out if he's eligible for a phase 3 clinical trial. Consultant wouldn't be drawn on how much the tumours have shrunk, but she did say "visibly". Not out of the woods obv, but right here, right now , ds1 I well and life is good, so that's our focus.

Will try to catch up with the thread, but am half way down a bottle of wine, so I may lose track! I do think of you all a lot and often wonder if I've crossed paths with you, cake, at hospital

[Nocakeformeplease]

Brilliant news that the tumours have shrunk Stinky (doesn't feel right calling you that ). And I'm so glad that DS is doing well at the moment and that you are managing to focus on that.

I didn't realise you're at the Marsden too. We were there Wednesday - If you saw a little boy clutching a black spotty pyjama top (don't ask!) that was us

[Twunk]

Hey stinky I hope he gets on the trial. Glad to hear all is well at the moment.

We're just battening down the hatches for this expected storm. It says coastal areas but A) the Netherlands really aren't very big and nowhere is that far from the coast and B) it being flat, there isn't much to stop a wind. It's been pretty breezy today.

I've been catching up on stuff I've been ignoring. I did make children's clothes before all this happened - had a little FB business, but have abandoned it. I still had one order outstanding so I'm just about to finish that. It's a load off.

[Twunk]

Well just back from bone marrow test. We get the results 18 November. Had a meeting at the school with his teacher and the education liaison from the hospital - about when he starts school (he should have started in September though isn't legally obliged until next year when he's 5, however he gets no Dutch at home so it's important we try and keep it up). We can get a few hours home tutoring until he can start going, then he will also have some extra help in the class when he does start.

Hope all are ok x

[unbuckle]

Back at marsden for the second day in a row for i. Ct scan under general. Amazing to think how anxious i used to be about generals.

This week has been really hard so far. Feel like things will never be normal again or even the new cancer normal again.

Hope you are all ok.

[Twunk]

Oh ((unbuckle)) it's all so grotty . I don't think we will ever be the same again - you can't come through this experience without change. It's just too fundamental. We will do anything to protect our children and with cancer...well a lot of it is taken out of our hands. The stress of all this is enough on its own.

I'm so like "whatever" about GAs now.