Mini-trazzle and his candles vs. neuroblastoma

[Trazzletoes]

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

Hi, quick update: Joseph has had a good day, bright and cheery until about 5pm when he went quiet - felt his skin and a quick temperature reading of 39.7!!!!!!!! Argh! He's back on Calpol now and asleep so hopefully will get some rest tonight. We're in isolation, which I secretly love as it means no one else (apart from the nurses!) is waking us up.

I spoke to the Doctor about the pain he's had in his neck etc and my fear that it means the cancer is growing. Obviously it could be, but she has said that sometimes it causes pain when it is going as well, so, while it doesn't mean Joe is out of the woods, it also doesn't mean he is automatically in big trouble. Teeny weeny sigh of relief...

I'm pleased he's had a good day, and hope the Calpol kicks his temperature. Thinking of you xx

Good that you discussed it with his doctor. I hope that his temperature comes down with the Calpol. Can he have ibuprofen if it doesn't come down or does that interfere with his other medication?

I hope you both have a good night.

dikkert no idea! Temp now 36.5 though so all good.

Oh good. Hope you both have a restful night.

Glad you'll both get some rest to tonight. Thank God for Calpol

I'm glad you spoke to the doctor about the neck pain, hope it's the bastard cancer giving up its grip.

Sleep well xxx

I haven't posted for a while Trazzle, but I check you thread most days and am still thinking of you! I really hope that additional treatment for Joseph wont be necesssary, but if it is please let us know. I would definitly want to contribute! Take care xxx

Good that his temperature has come down so quickly.

Do they have an idea for how long he would need to stay in isolation?

Does he get G-CSF after each cycle of chemo?

You have probably already come across this website but they give an overview of some of the clinical trials.

Hope you have a good night.

This time? He's in isolation til this time tomorrow, but may well stay in this room if they don't need the bed.

Those clinical trials are slightly different because that's a US organisation, but yes, he has the GCSF. That's standard treatment now.

The only element of treatment that is now subject to a clinical trial here is the end bit - the immunotherapy and differentiation therapy, to teach his body to recognise the cancer cells and attack them in future. If he gets selected he gets an additional drug and longer stays in hospital.

If he is in isolation till tomorrow, will he be able to go home when he has finished the chemo cycle?

Do you already know at this stage whether he would have been selected for the immunotherapy and differentiation therapy or will you only hear this much closer to the time?

My DH just mentioned that when on chemo they cannot prescribe ibuprofen as it apparently can increase the risk of bleeding and also of Reye's disease.

On another tack, how is the crocheting going?

I am going to do some more knitting now. I am knitting a dress for DD and it is progressing very very slowly ...

Hope you have a good night.

Yep, all being well he should be fine to go home once the chemo has finished - if he doesn't get I'll again in the meantime :D

He gets the immunotherapy and differentiation therapy as standard. We'll find out whether or not he gets the extra drug shortly before it starts, I guess. Not much point in selecting children before that stage as there is no way of telling whose circumstances will change before then.

Had no idea about the ibuprofen!!! But to be fair, we have gallons of dihydrocodeine at home for pain relief so I would use that if at home. We aren't allowed to give calpol at home without oking it with the hospital first because it obviously would mask a fever, so ibuprofen hadnt really crossed my mind. If he's in pain, we have dihydrocodeine, if he has a fever, we come to hospital and get calpol.

Fingers crossed he doesn't pick something up during/after chemo and you are all soon home again.

Does your DS have a lot of pain?

How is DS' school? Have they been in touch at all, card etc.? I know he only just started school but does he miss his friends/school routine?

I hope that your DD is feeling better again, must be so hard to have an ill child in hospital and an ill child at home.

x

Hi Trazzle,

Sorry I haven't posted in the last couple of days - month end deadlines. No idea why I chose this job

Glad Joseph's fever has gone down. Good luck for the chemo tomorrow. It all sounds so complicated. You're doing a marvellous job.

Hope dd is feeling better. Don't feel bad.

Splodging from Essex tonight so shining even more brightly for you all.

Thinking of you all & splodging as always

Hi Trazzle,

I havent posted for a while but have kept up to date. Sending you and your family lots of hope and love x

Hi Trazzle

I have been following your thread since the beginning (from the fledglings thread) and it has often moved me to tears. I would just like to send love and best wishes and to say not only how fantastically well I think you and your family are coping with such a horrible thing but also how much I have learnt from your story and how it is helping me to interact with friends in a similar position.

Light shining in Hertfordshire for Joseph.

Aw, thanks all. Joseph isn't in any pain, usually, and hasn't had to have any dihydrocodeine, but the chemo can cause all sorts of problems. He occassionally gets limb or spinal pain from the tumour in his neck but it goes pretty quickly.

He was at nursery. He does sometimes ask why he can't go when DD does, but he'd rather be at home at the moment. They haven't sent a card, no, but the Managers had decided not to tell the rest of the staff straightaway until they knew exactly what was happening, and kindly also to protect us from too many questions etc. our Macmillan nurse has explained everything to the managers and will be popping back to tell the staff sometime. Hopefully he'll be back sporadically after Christmas though.

Oh, and his temp is back up - 38.6

Morning Trazzle, big hug for you my lovely, gentle one for Joseph X

Morning Trazzle, hope you both slept well.
Hopefully the antibiotics will sort Joseph's temp out (along with some calpol).

Joseph sounds just like my DS, especially the pink obsession... My DS will be 4 this week and his pink phase isn't passing

Not posted before, but adding my love to the huge amount already surrounding you . Hope you and the little chap have a good day.

Morning Trazzle. I hope Joseph's temperature was controlled through the night.

It's snowing in Bath so Joseph's candle is lit early today

Morning Trazzle. Splodging in Bucks and hoping Joseph's temperature behaves itself today and that noone does need the bad so you can stay in a room to yourselves . Thinking of you all often.

Very happy to hear that he is not in pain. Also, it is good that you have what I presume are very strong painkillers in case he needs them.

Hope his temperature has come down again. Can they do chemo if he has a temperature?

It is good that the Macmillan nurse takes care of school. I totally understand the last thing you want to deal with at the moment is lots of questions from school.

I hope today and the next few days go as smooth as possible so that he can go home soon.

afternoon, Trazzle. Sometimes afternoons are the hardest time apart from the middle of the night, as the child is fretful and bored, so thinking of you extra here.