Active discussions

Meet the Other Phone. Flexible and made to last.

Meet the Other Phone.
Flexible and made to last.

Buy now

Please or to access all these features

Talk
Children's health

Mumsnet doesn't verify the qualifications of users. If you have medical concerns, please consult a healthcare professional.

Original poster

Joe vs. The Cancer

999 replies

TrazzleMISTLEtoes · 08/12/2012 23:26

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.

OP posts:
dikkertjedap · 13/02/2013 09:35

Trazzle, I am not sure if this is helpful or not, if not please just ignore.

Below are two links: One discusses the importance of timely and sufficient medication to control pain and ways to reduce the risk of undertreating pain and the second article deals with different techniques (including use of drugs but also CBT and hypnosis) to deal with painful procedures.

link1

link2

cowmop · 13/02/2013 09:46

Trazzle, I'm a serial lurker and have followed Joe and your families story closely. I really have nothing to say on the advice front, but I am, and have been thinking of you all lots and praying for Joe. I know from talking to someone who went through similar that you have tough days ahead and I wish with all my heart we could do something to change it. I'm not sure if it helps, but the little girl I know who went through this a few years ago and is now a healthy happy seven year old.

Hugs to you all (I'm not a huggy person so you are verr honoured!)

TeaMakesItAllPossible · 13/02/2013 09:47

Continuing to think of, and splodge for, all the trazzles.

My words feel so inadequate at this point but you are in my daily thoughts.

IwishIwasmoreorganised · 13/02/2013 10:27

Go stem cells!

Hope joe's team keep on top of his pain relief and that he's spared lots of the potential side effects

Xx

tholeon · 13/02/2013 11:31

Thinking of you all. So glad there is morphine to control pain. My DS was on morphine when he was in hospital at five months, I remember thinking that one minute I was faffing around wondering if I should give him some organic baby rice and the next he was on bloody morphine! My sister had it too when she had a stillbirth, I think it is fairly commonly used in hospital.

thewhistler · 13/02/2013 17:48

On the dry skin point, I did that last year after.being in plaster for months. Didn't hurt at all. Itchy, a bit. Great chunks fell off. Every morning was like being on sheets after volcanic ash had fallen, and yes, there was a yukky satisfaction in pulling off strips.

blizy · 14/02/2013 07:13

Trazzle, my gingers are crossed that Joe misses a lot of the horrid side effects. My splodge is shining and I'm thinking of your brave little man. X

gordonpym · 14/02/2013 10:09

I've following you and Joe since the very beginning.
Fingers crossed and big hugs from Barcelona.

gordonpym · 14/02/2013 10:10

I've been.

SPBInDisguise · 14/02/2013 10:13

X

Mmmnotsure · 14/02/2013 10:35

I've had morphine as an adult a number of times. I don't know if it behaves the same way in children, and I know some people don't react well to it, but I remember the morphine times as absolutely wonderful. Lovely warm woozy floaty feelings - even though I probably didn't make sense to anyone who was with me at the time. I'd happily have it again now.Blush

dikkertjedap · 14/02/2013 12:44

Hope Joe is doing okay and not in pain/discomfort.

Keeping gingers very very very crossed that he is not going to suffer from severe mucositis and if he does that the morphine helps to keep him as painfree as possible.

I hope he is still able to eat/drink/play.

If there is anything he needs I would be very happy to help, even simple things which may make his life easier, such as more pyjamas etc, just pm or post on here.

Do you have WiFi in his room, i.e could he go on kiddies websites if he wants?

Thinking of you,
x

Trazzletoes · 14/02/2013 13:16

Hi, yes we have wifi and a laptop (thanks Candlelighters!). He is doing ok so far - he was a bit sick yesterday but it turned out the pharmacists had switched one of his medicines and that was the cause of it.

You can tell he is starting to go downhill - sleepy, cuddly, not very active - but he is still "alright". The mucusitis is expected on Friday or Saturday.

I'm actually feeling a lot more positive today, having had some helpful chats yesterday both with Joe's care team and other parents whose children have already gone through this

Joe CAN and WILL do this.

His stem cell transplant took place yesterday and went without a hitch so that's one weight off our minds at least :)

MyHeadWasInTheSandNowNot · 14/02/2013 13:20

Trazzle - Big Hugs x If it's any consolation, I think the days before the 'Big Things' are worse than when it is happening/has happened. Once it's being done, it's out of your hands and you just cope, those days beforehand are full of worry about decisions being made and what's to come - whereas when it's there, you just deal with it. I hope you fnd that too. How long before DD is allowed to see Joe again? I hope the rest of you are feeling better soon. Lots of love & lots of strength being sent your way and gingers crossed too! xxx

Trazzletoes · 14/02/2013 13:33

Thanks - I'm hoping that's the case!!!

DD is not allowed in for the rest of this hospital stay as his immune system is too weak and, as a young child, she is a super-carrier of germs. So they won't see each other now until he's discharged in several weeks.

dikkertjedap · 14/02/2013 14:37

Yes, Joe CAN and WILL do this. He has done brilliantly so far.

Did you manage to get hold of the special spray (Minmooch mentioned it) for his throat or does the hospital have something else to ease the pain from mucositis?

So pleased you feel more positive and have some RL people to talk to who have gone through this and hopefully have some coping strategies to share with you.

Also pleased that you have wifi and a laptop to distract Joe and yourself.

Still very much gingers crossed that he is not going to get the worst side effects and that his mucositis can be somehow dealt with/kept in check.

He is such a brave boy and you are such a great mum!

SPBInDisguise · 14/02/2013 14:49

I have my gingers crossed too, nd I am ginger so twice as powerful as normal gingers

toomuch2young · 14/02/2013 21:06

Candle burning here tonight.
Go Joe, doing brilliantly. And you are as well trazzle
Gingers crossed as ever x

5madthings · 14/02/2013 21:14

Thinking of you all, he can and will and IS doing this xxx

thewhistler · 14/02/2013 22:06

Candles and splodges here too.

onedev · 14/02/2013 22:10

Joe CAN & WILL do this. Much love.

hellohellohihi · 14/02/2013 22:27

I think about you lots trazzle but more so today... My dd has a tummy bug and is under the weather and I felt like having a little cry about it. And then I thought about how you must feel. You sound amazing, and I always imagine you as a strong, beautiful, calm lady and that this is just what your gorgeous boy needs.

Go on the joe-meister who I always imagine as a kick-ass little dude x

Trazzletoes · 14/02/2013 22:46

Oh I hope your DD feels better soon.

The fortunate thing with Joe is that he doesn't often seem under the weather. I'm home tonight and unfortunately DD is in full-on banshee mode. I have no idea how to calm her :(

hellohellohihi · 14/02/2013 22:56

Oh bless her, perhaps she senses stuff is going on? I hope she calms soon for you. And one would presume Joe's spritliness is because he's staying on top of that fecking thing, long may it continue specially with the bumpy ride yet to come. Hope you manage to get some good zeds, night night x

dikkertjedap · 14/02/2013 23:20

Oh, poor you, hope she calms down soon and you get some time for yourself.

Would a warm drink and a story she already knows very well (hopefully she will find it boring and may resort to sleep) do the trick or does that not work with her?

Hope you get some sleep.