Joseph's last thread? Here's hoping...

[Trazzletoes]

My now 4 year old DS, Joseph, was diagnosed with stage 4 high risk neuroblastoma last October. It's a particularly aggressive cancer with an 80% relapse rate. Long-term survival statistics are not great.

Joe has had 8 cycles of chemotherapy, an operation to remove the main tumour, stem cell harvest, high dose chemotherapy and stem cell transplant as his bone marrow was destroyed, 3 weeks of radiotherapy and now 5 1/2 months of differentiation therapy and imunotherapy.

In April we learned he had relapsed and so had a 5% chance of ultimately surviving. Then, the relapse spontaneously un-relapsed but we don't know for certain what this means for his future. Whether its good or bad news.

He remains bright and cheery and gorgeous throughout.

Sorry, it's been a massively stressful few days...

Why is the temp always late at night? It's the timing of the injection. He gets calpol an hour before and that holds the fever off for a while - he mostly hits 38 degrees about 7-8 hours after the injection. It's meant to be around 12-1ish which is fine. But generally something gets delayed. Last week we had a lost prescription, deep cleaning of the ward and 2 platelet transfusions delaying things.

The most frustrating time is when you take his temp just as you're getting ready for bed and it just scrapes 38!

This week he gets the jab some time between 11 PM and 2am. But he's also on regular paracetamol so that helps.

He has had a good weekend but another difficult day today . It's the first day of the antibody infusion. He coped well for about 3 hours (a record!) but then started screaming again. He's asleep but unsettled and has an oxygen mask by his face as his pain relief is so high it interferes with his breathing

DD is also running a fever at home. This is hugely stressfull. I get texts about her breathing and there's nothing I can do, or even advise. I want to give her a cuddle and make her all better

Re: schools. I don't think we have a great deal of choice. Our local school is over-subscribed. The cut-off was just a bit further along our road. We are on the edge of our area of the city (nothing much behind our house) and the cut- offs of the other schools don't come as far as us.

There's 1 school in the next bit along which took everyone who applied last year but I'm nervous - our local comp is very good and has recently changed its criteria to prioritise people who live in our postcode. I'm scared that they may also narrow it in the next few years to prioritise those who go to primary school in our postcode.

Our local school also has limited wrap-around care and because it's so small there's only one childminder that does drop offs and pick ups. No idea how we are going to work it if he gets in. I have enough stress in my life already!

Sorry you having a tricksy time. Hope all the temps bugger off soon and that Joe's pain levels improve. Brave little sausage.

Re the schools, nearly all (except religious) give preference to those with a compelling medical or social need above distance, so if there is an oversuvscribed one you would prefer you should be able to make a good case.

Oh that all sounds really overwhelming

WRT schools. Have you looked at whether Joe could make an application based on special educational needs? At the very least, if your local school is the one for him, there are some very knowledgable posters on MN who would be able to advise how to prepare to appeal should you not get in. And I completely understand the challenges of wrap- around care. I don't understand how there is so much encouragement to get everyone working and so little practical help. With DS1 my BFF had to travel 90 miles to pick him up after school in his second week when I was working away

Hello Trazzletoes, sending lots of get well vibes to both Joe and your DD.

There are some VERY knowledgeable posters on the Primary Education board who could help you with admission queries.

Put in a case for school on socio
medical grounds. Your gp and consultant and specialist nurse can write letters to support
You need close to hOme less stress all round given the difficult year etc etc

Still thinking of you all, Trazzle. Hoping Joe's pain is as short-lived as possible and that DD gets better soon too. So tough for you.

The poor wee lamb. Hope tomorrow is better for him

Temperatures are sickening in that they always go up st night anyway, and when you have the extra boost to them late it must be infuriating. So sorry for poor Joe, and you, and DD.and your DH.

Yes, get the medical crew working on the sen thing. It won't be the normal sen because he doesn't sound as if he has any learning difficulties whatsoever, so you may need a bit of extra advice. But the MNrs will be able to tell you the best way to go.

Trazzles, this sounds so horrible. Poor little mite to have to have so much pain control. Thinking of you all.

Oh Trazzles, it sounds so very hard

Echo what others say about medical grounds for schools.

Thinking of all of you, and of you in particular. X

Thinking of you, agree it all sounds like added stress you could do without. Hope there's some bright news very soon for you x

Hi there, Joe has had a reasonable week this week and has coped ok with his meds. We are still hoping to get him home over the weekend. Since July he has been on a tube feed called Neocate. We have to make it up ourselves from powder several times a day which is time-consuming and quite a pain. But it's a feed that is very easily digested - broken-down amino acids or something.

Anyway, once Joseph is home we are going to try putting him back on his old feed! So much more convenient as it just involves attaching a plastic tube to a sachet and going. Also it is higher calorie so he needs less of it, so has less time connected to it and more opportunity to move around. I am so so hoping that his digestive system can cope with it.

I can't believe there's only 6 more weeks of treatment, all being well!

Wow, 6 weeks! I'm guessing that feels exciting/nervewracking/unprocessable/incredible/indescribable?
So, all being well, treatment finished before Christmas...?

Sending lots of positive get-Joe-home-over-the-weekend vibes. Hope transition back to the old feed goes smoothly.

That sounds promising re the feeds - let's hope his tummy can tolerate it and only 6 more weeks - what a great end goal to have Fingers crossed it all pans out that way xx

Glad to hear there's light at the end of the tunnel!

I hope that precious little tummy can cope with it too.

I continue to think if you all lots. Every morning when I get my Yorkshires out of the tin and pop on the kettle in fact

Hope super-Joe gets home for the weekend.

What happens after six weeks? Apart from the fact you all collapse in a heap before coming up with a new routine.

Still rooting for your lovely Joe Trazzles. You are doing so amazingly

6 more weeks!! Wow- I really hope it goes without a hitch. XXX Thinking of you as always.

Another thinking of you. Gingers crossed for a smooth 6 weeks!

Well, he's still in hospital... His blood pressure and oxygen levels got too low last night and he had to have an oxygen mask on his pillow.

One of the side effects of the treatment is that it can make your capillaries leak, so fluid ends up in all sorts of places where it shouldn't be. This time it seems to be round his lungs which is making him breathe more rapidly but less effectively. Until he starts dumping the water, his oxygen levels will stay low and we will have to stay in .

He's had a diuretic and has dropped around 500ml so far! When they weighed him he was carrying at least 2 extra kgs!!!! We were hoping to be out by mid-afternoon but his O2 levels are still bouncing around and he is being reviewed at 6pm.

It's so tough for you all - hope the 6pm check goes well & you get home.

The Dr walked through the door and, predictably, Joseph's oxygen levels plummeted. So we 're staying an extra night (at least).

I know it needs to happen but IT SUCKS!

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