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

The little boy I read about is going to the States to receive the Children?s Oncology Group neuroblastoma treatment, which will help stimulate his immune system to increase the chances that his own body is able to recognise and attack the neuroblastoma if it returns.

According to his parents' website, this treatment is not available in the same format in the UK and it is not funded by the NHS . It costs over £200,000.

I could link to the website, Trazzle, but I'm not sure it would be good for you right now. I feel a bit bad about even mentioning it, to be honest, as I'm sure it's the last thing you want to hear about. However, I thought you ought to know, so that you have an opportunity of getting the best treatment for Joseph. There is something available in Germany too if a child does relapse. I think the Neuroblastoma Society would be the people to contact for more information.

Could we start contributing to a fund for Joseph in case this happens? I hope it would never be needed, in which case he would have a tidy little nest egg for his future .

I hope you don't think it's interfering, but I'm going to start reading up on the treatments Trazzle, I'm not a Dr but I do work in a related field and it interests me from the scientific and regulatory point of view as well as having a personal interest in Joseph's progress.

I too would be happy to donate in the event of it being needed. But for tonight, just want you to know that I'm thinking of you.

Morning, Trazzle. Hope the Trazzle Family had a good night.

Good Afternoon trazzlesies
just checking in to send love and light from a very rainy Malvern

Light still shining here. Hope all is ok

Another light, a little bit further south, in Barcelona. Thinking of you and Joseph. Good night.

Light here for Joseph. Trazzle you are very clear now about not wanting financial support. Let us know if anything changes.

Whoknows I don't think you're interfering at all.

Toffee thank you for the information. Don't you worry. DH and I have been starting to discuss this.

We're going to talk to the Consultant at the first opportunity and find out how likely (very?) it is that we will need to raise money, but also, whether these treatments give him a decent chance.

I know that there are plenty of people out there who would say, any chance is a chance, and even the slightest possibility is worth taking. But DH and I have agreed that if the prospects are low and it's basically treatment for treatments sake, or just to prolong life while lowering the quality of his life, we would rather have a few weeks making him happy and giving him wonderful memories than spending 6 months in a foreign hospital.

It may be that the treatments are worth it, we honestly don't know... We need advice first.

We have a bit of equity in the house from DH's inheritance from his parents, so first port of call would be to move. It would break my heart to be off the housing ladder and renting for possibly the rest of our lives, but needs must. I've said this on another thread, but I hate that this bastard disease is robbing us of EVERYTHING. My family, our happiness, our home...

If anyone wins the lottery, please spare a thought for us. Must remember to buy Euromillions ticket today...

DS is doing ok. His rash is still bothering him, bless him. He has something called an insuflon in his leg, like a teeny catheter, so I can give him injections. It was all red and angry last night so we had a quick trip to the hospital to get it checked but it seems ok, although it will need to come out today, which is fine.

He was bright as a button yesterday and running around like an idiot. He's discovered a new love for the princess and the frog - nice change from shrek and sleeping beauty on repeat!!! He won't watch beauty and the beast though "because the beast isn't very nice". Considering Maleficent and Dr Facilier are his favourite characters...

More friends coming to visit today. Will be nice to have a house full of children again, though I should get up to make sure there's nothing dangerous lying around...

Trazzle I think you and your DH are pretty amazing. And Joseph is lucky to have you and your resilance, determination, planning and love on his side.

I too hope you never need my contribution but will gladly give if it comes to it.

Lights a burning in Bath for you and yours. Enjoy your full house

Tracked enjoy your day of a house full. Splodge of light still burning for you here and thinking of you often. Of course my name is on the winning Euromillions ticket for this evening, sorry to have to tell you, but I'm sure I can spare some .

Bloody autocorrect on phones-obviously I mean Trazzle not Tracked!

Trazzle, you sound so wise, whilst your heart is breaking. My thoughts are with you, as are everyone's.

((Trazzle))

Still thinking of you here & hoping you all have a fun day today.

Still thinking of you too.

Once you know the score on whether antibody etc treatments are likely to be of benefit to Joseph and once you've established whether they're likely to incur a huge charge for you......

Could you maybe write to your MP and ask for the lowdown on the actual rules on funding the treatment? It might be useful to have the MP on your side in any case - even if they're not of your usual political persuasion, they are still your MP.

Still thinking of you over here too; good to get the view of the consultant so that you can plan properly. And have a good day with your friends

Hi Trazzles On the road so chking in from dh's phone but just wanted to say hello. Bless your little Jo for being such a trooper and running around! Fab to hear. Hope rash discomfort eases soon.

Am in awe of your clear thinking in such circs and ditto what teamakesittothetop says about your ds having wonderful parents x

Because of travel sched - Goingto local chrch tomorrow instead of Sun - so going to take liberty of lighting candle and you will all be in our prayers as ever.

So then, DD is on antibiotics for an ear infection that I'd totally missed .

DS developed a temperature this evening and is currently in hospital with DH. They're running his bloods to see whether he has enough white blood cells to fight off the infection himself - if he can, he will get to come home tonight. If not, he'll be in until his next chemo starts on Sunday.

He's been complaining of pain in his arms and neck this week - I'm very scared because this is very similar to the symptoms that led us to the gp in the first place: the result of the tumour on his spine. I know I'm being silly by trying to second guess what's happening inside him, but I'm scared that the tumour isn't shrinking.sod it, I'm just plain scared.

I have no idea what you're going through but I guess scared and second guessing is normal. :(
Hope dd is better soon too. If she's on abs I find the ear infections vanish within a couple of doses.

Offers my hand to hold too.

Firstly, don't be hard on yourself about your dd having an ear infection. They can be easily missed at the bet of times.

Secondly, ((((((huge hug)))))) and here with you while your DS is at hospital.

It never rains but it pours as the saying goes.

As wizz says, ear infections are easily missed I like to reassure myself anyway having missed a couple

I really hope that Jospeh is able to come home tonight for some more family time before his next chemo.

Xx