Are your children’s vaccines up to date?

Set a reminder

Please or to access all these features

Children's health

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

Mini-trazzle and his candles vs. neuroblastoma

998 replies

Trazzletoes · 15/10/2012 22:53

Hi, continuity thread for my little DS (3) who was diagnosed with neuroblastoma last week. Much gratitude for all the support the Trazzles have received. You nasty nest of vipers, you Grin

OP posts:
Are your children’s vaccines up to date?
cestlavielife · 23/10/2012 12:33

look at it as quite significant chance of survival. this is not a 99.9 percent non-survival rate. this is a cancer which can have a good outcome.

mini trazzle is unique, you and the doctors will do all they can for him.

today, the treatment is ongoing and everything is moving in the right direction. when it goes a step backwards you will deal with it. dont jump ahead of yourself, one step at a time...
thinking of you

Alibabaandthe40nappies · 23/10/2012 12:40

Keep typing various things which sound trite and awful.

I'm so sorry you are going through this. ((hug))

tholeon · 23/10/2012 13:02

Virtual hand holding. You are doing the best, most wonderful mummy job. The hardest one anyone can do. Have you spoken to the doctors about the stats you read?

It is hellish for you. We will keep hand holding. I wish we could do more.

blizy · 23/10/2012 13:07

Oh trazzle, I am so sorry you had a crappy nightSad. You are right, cancer is a bastard, but not unbeatable. I echo and agree with everything chippingin said, wise words from a wise lady.
I hope you are having a better day (and miniTrazzle too).

drjohnsonscat · 23/10/2012 13:18

Poor darling boy and poor you. Trazzle I can hardly imagine what you are going through. It's unspeakable. But there is every reason to think your son will get through this - he's in the right place and he's having everything thrown at his treatment. Thinking of you and wishing you both strength.

ShiftyFades · 23/10/2012 13:19

trazzle I think I read it as you intended due to my horrendous lovingly produced accountancy investigations... I write some stunning ones Wink
Outstanding means "still waiting" to me too Grin

Four4me · 23/10/2012 13:23

Oh Trazzle, massive hugs. Throw the leaflet in the bin and concentrate on today and today's decisions and challenges. Let tomorrow look after itself. To quote Thumbwitches advice to Cup and Bea 'don't borrow trouble ahead of time.'

When I had ds1 and they told me he had downs syndrome, I drowned myself in information and books and quite honestly it spirally me downwards. I was thinking far too far ahead for my three day old baby. No one is text book and therefore as Chippingin so rightly points out it is impossible to know how miniT is going to react to treatment, so look at your boy as an individual not a stat in a leaflet.

Massive hugs XXXXXXX

NatashaBee · 23/10/2012 13:46

This reply has been deleted

Message withdrawn at poster's request.

cestlavielife · 23/10/2012 14:09

also ask about make a wish charities - get your family and ds something to look forward to - your family deserves as much as anyone

eg www.make-a-wish.org.uk/wishes/
www.whenyouwishuponastar.org.uk/
www.rtcw.org/
etc

onedev · 23/10/2012 18:25

Oh Trazzle, as others have said, bin the leaflet as it means nothing. Your gorgeous boy is unique & will fight it. He's got an amazing mum & family on his side.

Hope today has gone well.

thewhistler · 23/10/2012 19:12

Trazzle, atm I am waking regularly at 3 and 4. Whilst I can't MN you without waking DH, be aware that that is my meditation/prayer time for you, mini T and the other Ts. So if you are awake then, as well as Splodges from the antipodes there is a Splodge in sarf London burning then.

Trazzletoes · 23/10/2012 19:18

Natasha I didn't read it on purpose! It was the details of the meeting where they gave us the diagnosis. I assumed that it was details of the actual meeting, not thinking that they have so many of these meetings that they have a standard set of notes. We hadn't asked about survival rates but of course most people do so the info is in there. The notes are care-related, they detail his anticipated treatment.

Today has been ok. He's been permanently hooked up to a feed but has also been ravenously hungry which I'm taking as a good sign! He has barely stopped eating today. Unfortunately we have the only bed on the (full) ward that has a broken tv so it is a trying few days ahead! A friend lent us an old DVD player which has been amazing but I think it's had enough today after being on for several hours straight!

We were initially told we'd be going home tonight but then it was tomorrow night. Now he's likely to go straight in to his next chemo on Thursday so we'll be in til the weekend, most likely.

He was awake so late last night that thank goodness he has fallen straight to sleep tonight. No mean feat with People across the ward watching the Simpsons on full volume.

He's veered between being a gorgeously cute angel today and a complete pita. This afternoon he's had me tearing my hair out and I've shouted at him a few times. I know, I know, my parenting style leaves a lot to be desired. I feel bad enough about it without anyone else pointing it out, believe me.

DH's aunt and cousin popped over today which was lovely. DH's aunt had a party planned for saturday to mark a significant birthday and wedding anniversary. I mentioned that DH still hoped to go but they've cancelled the party because they didn't want to celebrate while DS is sick. I understand that but feel terribly guilty.

OP posts:
SHRIIIEEEKPoolingBearBlood · 23/10/2012 19:31

It would be lovely to be a perfect parent! Most of us don't mange it while dealing with half of what you're going through. Your son needs you not some creepy stepford mummy.
As for your aunt, I can completely see why she's done it. She won't have done it out of fear of what you might think, but because she doesn't feel lik celebrating. You'll have to throw a huge party when your ds is better ans she can blow out her candles there :o
Oh trazzle, I wish there was something I could actually doooo!

Badvoc · 23/10/2012 19:33

Trazzles, don't beat yourself up.
You are allowed to get cross.
You must both be so bored and anxious.
Not conducive to getting on well all the time!
Great that he is hungry.
I am sorry you will be in til the weekend and hope the Simpsons idiots people keep the volume down tonight x

AuldAlliance · 23/10/2012 19:37

Oh, Trazzle, you have so much going on and you are being so strong, in spite of the meltdown last night. Seeing those figures would have affected anyone that way, no matter how steely, but I agree with others that it's best to try and carry on seeing your DS as anything but a statistic. Your initial instinct to avoid looking at rates was a good one, I think, as they are utterly abstract, whereas your DS is totally unique.

Your guilt about the party is normal (and a sign of your usual selflessness), but you have other things to focus on now and so does your DH.
Please, please don't feel guilty about shouting at your DS, and don't think anyone on here judges you for it. You are under so much stress, shouting is inevitable and does not make you a bad parent. I shouted at mine today and I sure don't have anything like your mitigating circumstances

ShiftyFades · 23/10/2012 19:50

Lovely to hear that he's hungry and is sleeping normally, have you had the kidney function results yet?

Hope you get a good nights sleep too.

Any of us would do what DH's aunt is doing, they won't want to party when one of the most precious little boys in the whole world is poorly. I'm glad you have such fantastic, thoughtful relatives.

((hugs))

strictlycaballine · 23/10/2012 20:07

Trazzles - shouting is perfectly understandable in such stressful circs and and prob. v. good for your ds to know that it's "business as usual" and be treated as normal ifyswim.

DD and I took the liberty of lighting a candle and saying a prayer for you and mini-Trazzles this afternoon in local cathedral. Just want you to know you and your family are still very much in our thoughts! Sending strength and positive vibes through Eurotunnel to you and yours ...

D0G · 23/10/2012 20:17

This reply has been deleted

Message withdrawn at poster's request.

NatashaBee · 23/10/2012 20:24

This reply has been deleted

Message withdrawn at poster's request.

dikkertjedap · 23/10/2012 20:31

Oh, Trazzle, nobody is a perfect parent all the time in spite of our best intentions. You are under far more stress than the majority of parents, so it is totally normal and understandable that you know and then lose your cool. Children forget these things almost straight away, it is us who keep remembering when it happens to us. Try not to beat yourself up, you are doing so well, supporting your son so well and helping him through this difficult time.

Is he able to go to a playroom during the day or does he has to stay in bed? Otherwise he may play a bit, do some games or some colouring maybe or reading stories instead of TV if the TV does not work. Do you have access to a laptop? As far as I know you can play DVDs on laptops as well but you may need simple earphones as the sound is not always very good.

It is great that he is getting lots of food to become as strong as possible. Have they changed his anti sickness medication or has his sickness he had over the weekend gone away by itself?

Is it going to be his third chemo session on Thursday? As others have said, it is not nice that his hair is starting to fall out but it will grow back. It is in a way reassuring as it means the chemo is having an impact and killing the cancer.

I hope you are all back home soon.

ChasedByBees · 23/10/2012 20:42

Just huge hugs Trazzle, sending prayers and a splodge of light from Oxfordshire. x

Trazzletoes · 23/10/2012 20:46

Natasha I didnt for one second think you were having a dig. I also hope I didnt come across as pissed off. Maybe I was aiming for slightly whiny... But but but I WASN'T mummy!

OP posts:
NatashaBee · 23/10/2012 20:52

This reply has been deleted

Message withdrawn at poster's request.

Badvoc · 23/10/2012 20:55

Thinking of you tonight xxxx

ernestbear · 23/10/2012 21:08

So sorry you're having such a terrible time, am here hoping and praying for you both

Swipe left for the next trending thread