Joe vs. The Cancer

[TrazzleMISTLEtoes]

My 3 year old DS, Joseph was diagnosed with the cancer Neuroblastoma in October.

Survival rates are approximately 1 in 3.

He's coming to the end of chemo and so far, chemo is kicking cancer's butt. 3 cheers.

Ahhh. You probably need serotide or becotide to get it under control.

Don't worry about that amount of ventolin. I've asked before whether I'm taking too much ventolin because I'm still struggling - the doctor - in the hospital so specialist in lungs - he said take it up to 4 times at once and to take it when you need it. If you can't get it under control after 4 puffs or need it again after 30 mins then off to the doctors with you to get other types of preventative inhaler prescribed. If I were you I'd go to whatever service they have on site tomorrow or call your GP - mine squeeze me in for things like that. Just make it easy for yourself rather than worry about what you'd do on a normal day.

In the meantime ... rather oddly tea helps. There is something in a good old cup of Yorkshire Tea that widens the airways. I had noticed when I was younger that a cup of tea after running around in the cold air made me feel less tight iykwim. There was a study on it about 8 years which said there was a link. I only remember because I'd noticed!

So much on your plate as always Trazzle

You need to give yourself priority & get the asthma sorted - all the best!

This article mentions that you can buy inhalers at Asda without prescription, however, if it is very bad you may need steroid tablets, eg prednisolone.

Thanks - my inhaler is in date and is not empty. I don't know why it isn't making me better .

The coughing is just a symptom of the asthma. I think I've had whooping cough before - not sure whether you can get it twice though? The cough at the moment is persistent, but definitely not as bad as WC.

Also, not sure if this is possible but for the stem cell harvest would Joe have access to a dvd player/cd player to keep him occupied? Alternatively, if at all possible (and if allowed) maybe he can watch a dvd/listen to audio stories etc on laptop?

Ah brilliant. Thanks for the info tea. I'll see where I'm at in the morning - I only say no time for the GP as I don't know when I gave to get DS to the hospital yet (and I hate driving in snow). Ill have to walk to the GP, which isn't ideal with reduced breathing, and it means leaving both DCs with DM which isn't great for her but its looking increasingly likely that I'll have to do that.

I don't have a preventative inhaler because I get asthma so rarely. About once a year at the moment. Which is why I'm so frustrated [ grin] and I don't know what I'm doing! Thanks all for your help.

Yes dikkert we'll be in an isolation room on the ward so he has a tv and DVD player. I'm taking the iPad in as well. When he's having the procedure he can't get out of bed so I have to keep him entertained somehow!!!

Worth getting one for once a year asthma mind. I only use my purple one every few months but does help - very quickly too - even though they say it takes 5 days.

Bloody pain the ass you need it now though.

Hopefully dvds, cds, reading a story or two will occupy him during the harvest. Unfortunately, a stem cell harvest can take quite a few hours.

I hope you take some stuff to keep yourself occupied as well. At least I find watching children dvds very boring, not sure about you. I love listening to the Roald Dahl audio stories though but they may still be a bit scary for Joe given his age.

Also hope that there is not too much snow tomorrow so you can easily get to your GP once you know when you need to be in the hospital.

Wishing you and Joe all the best for tomorrow, Trazzle. I hope you get the asthma under control soon. That's really not what you need right now, but it looks as if you've had some good advice above.

Hope all goes well on Tuesday and Joe gets the numbers needed. Will be thinking about you down here.

I've been to the GP (Nurse Practitioner) and they have given me antibiotics. For asthma. Just in case I'm infectious .

I was, like, seriously? Would steroids maybe not be better? Oh, but apparently antibiotics will treat the chest infection that no one thinks I have. And now I have to stay not breathing til freaking Friday!!!

I was assertive. Honestly.

This makes me cross - nurse practitioners do have a valuable role to play but it sounds to me like this one has got it wrong.

A similar thing happened to my dad. He tried to see a GP because of shortness of breath and some chest pains that he was getting when he was walking. He got an appointment with the nurse practitioner who tested his lung function which was fine and sent him on his way. I insisted that he went back to see a Dr who referred him immediately to a cardiologist. 12 weeks later he was having a 4 vessel coronary artery bypass - and yes his lung function remained fine throughout obviously as there was nothing wrong with his lungs!

Trazzle, can you speak to Joe's Drs? they may be able to prescribe steroids or a steroid inhaler for you.

I really hope that you can get this sorted, it's the last thing that you need to be dealing with at the moment.

Thinking of you and Joe this week, hope the collection goes well.

Xx

Hello Trazzle. Sorry to pile in with more medical info, but your asthma sounds very similar to mine (which only appeared in my 30s). I hardly ever need my ventolin (reliever) inhaler, but at times of stress, it gets worse. DS2 has spent a lot of time on hospital & I generally don't recognise how much stress I'm internalising until I start to wheeze (I'm good at acting calm ;)), usually at night. In the past, I've ended up with chest infections too (stress inhibits your immune response, as I'm sure you know), which of course makes the asthma worse :( The antibiotics are therefore probably a good idea, although the reasoning's a bit odd!
I have a steroid inhaler now, which I use either when I'm symptomatic or when I know something difficult's on the horizon - it works best over a period of time. I very quickly feel better though :) You could certainly ask for help at the hospital - there must be a walk-in clinic on-site.
Thinking of you x

iwish I know she's got it wrong, and I told her so (which I doubt she appreciated). I've had to speak to the hospital as well as obviously can't go in if I have a contagious disease. They were also quite confused about the antibiotics.

I appreciate the caution about a chest infection but I'm cross that she ignored my current symptoms. There is an a&e at the hospital if I get desperate.

How annoying for you. Is there a large Asda near you where you would be able to buy the steroid inhaler (depending on strength they can be brown, purple, green etc.)? According to the link I posted yesterday, they will sell it over the counter as long as you pay (something like £7) and fill out a questionnaire.

I think that only a GP/OOH/A&E etc are able to prescribe steroid tablets though.

Hope all is going well for Joe together and the Vascath is not upsetting him (too much).

Oh that's irritating. I'm sorry that after all that hassle you didn't get what you need.

I am snurking at you telling she'd got it wrong through

I have been known to do the same when dealing with the Triage Nurse at my GP's - I know she's trained for years and got qualifications but, damn it, I care for 4DS and I know my childhood ailments and I've always taken the step you're asking me to before I come and talk to you. I do not want to do it again

Can you book an appointment with the doctor for next week so you can go and talk to the GP to get the prescription in case you need it in future?

Anyways .... Candles alight. Thinking of you, Joe and all the Trazzles

How is Joe, how did the Vascath operation go? Will he be able to go home after the stem cell harvest or will he start straight away high dose chemo?

I hope you can all be together for your dd's first birthday.

How are you? Is your asthma any better? Have you managed to get a steroid inhaler or oral steroids?

I hope you are both okay (and of course the other Trazzles as well).

Thinking of you.

Sorry dikkert I don't think I've been explaining myself well! We're in tonight, but it's just for pre-everything really. Vascath is being inserted in the morning and then we're being moved across the corridor to a new (to us) ward - ever so slightly anxious as I am very much at home here with the nurses.

Then he's having the harvest for 1-3 days. He will be an out-patient for that. Then we're home til his operation next week to take out the main tumour and probably his kidney. Then in for 2-6 weeks for recovery. Then home for a couple of days before the high dose chemo .

Oh Trazzle, there is a lot coming up all isn't there . Thinking of you all though and wishing the handsome Joe all the best xx

Thanks .

Was just saying to a friend I wish time would stand still. I can cope with today, knowing that Joe is the best he can be. I'm so frightened of the future.

Oh Trazzle, so much you and Joe (and other Trazzles) still have to go through. And you have already been through so much and Joe has of course done so well.

I am sure you will both get on well with the nurses on the new ward, but totally understand you feel apprehensive and would like some stability.

I very much hope that the harvest goes well and that he can be home to celebrate his sister's birthday. Would they take the Vascath out straight after the harvest?

I am sorry that he will have to stay in for his recovery after surgery and before starting high dose chemo.

The high dose chemo sounds very frightening and the long time in isolation must feel so daunting. It is awful, however, hopefully it kills as many as possible of any remaining cancer cells.

When he is in isolation would you have WiFi, i.e. would it be possible (if he likes it, that is) to set up a rota to send him electronic cards/photos/little messages to cheer him up? If you think it is possible, and if you think he would like it, then I am quite happy to organise it (if preferred any messages/cards can be sent to an intermediary who can automatically forward it to you).

Lots of hugs, I wish we could do something so Joe didn't have to go through all this.

Let's hope that 2013 is the year of some break-throughs in neuroblastoma trials.

I know. I desperately want to be going through every second of this for him.

The vascath comes out as soon as he's done with the harvest. I think they just pull it out - that's nausea!

We should be at home for DD's birthday as its on Monday and the surgery isn't til Wednesday. We're having a family party on Sunday. I'm gutted for her that she's not getting the attention she deserves and that even her 1st birthday is tinged with anxiety over Joe.

I just hate this bastard cancer. I hate what it's doing to my little boy. I hate what it's doing to my family. I hate what it's doing to all our health. I hate what it's doing to my career... The list just goes on. I just bloody hate it.

I know the bone marrow nurses will be lovely - it's just change.

I'm not surprised you hate it Trazzle - it's an absolute fucker.

You're doing so well though & your dd will have a lovely birthday. She's very little & won't know what kind of attention she's getting. I know she's already got an amazing mum (& dad) who will fight for her & her gorgeous brother & is loved very much. That's all they both need, so give yourself a break!