Joseph's ongoing journey with Neuroblastoma

[Trazzletoes]

I've lost count of the thread number now, but my 3 year old DS, Joseph, was diagnosed with an aggressive cancer called neuroblastoma last year.

Part-way through treatment he has relapsed (currently still clarifying that, but it's almost guaranteed) and at that point long-term survival is less than 5%.

He is beautiful and wonderful.

Sorry I've not posted for a while, but I have been checking in daily. Glad he's been home for a bit and I really hope for you and him that he can be at home for his 4th birthday. The splodges have been splodging here, even if I've not splodged openly on here! Thinking of the whole Trazzle clan xx

Thinking of you all

Hope you get to have some good time this weekend - all of this will be worth it to get Joe back to full health. Take care of yourself Trazzles.

Actually just realised he hasn't been getting stickers AT ALL for his injections am terrible mother and will pack my own stash for next week.

We're hoping to have a party at home the weekend after his birthday - pretty low key, a couple of friends, bouncy castle if its sunny... We'll see.

Friday night his temp went through the roof. One of the drs wanted us to go in but DH pointed out that it wasn't that different to every other night when we had been able to stay at home so she said we could stay so long as his temp came down with calpol. Which it did, before heading for the ceiling again at 5am thankfully they agreed then it was probably still the injection so more calpol and a little more sleep.

Yesterday he still felt rubbish but seemed to turn a corner at bedtime. He gets an extra day's respite this time as he starts next week on Tuesday because of the bank holiday. His gut definitely needs that extra day. He's been retching regularly through the days and nights though last night slept the whole night only waking up to ask what had happened to his cuddly toy. That was a relief - we ALL needed the rest! Hopefully he will cope better with his food today too.

I think we're going to take him in for his blood transfusion today - I am rubbish at knowing when it gets bad, we know Friday's injection will have knocked his count and it was already borderline. He's pretty pale so I don't think it's unreasonable.

Next week is the difficult week though - 5 more injections which have already beaten him down and then the antibody infusions which are painful for him. It's just so hard on them. Our nurse on Friday said, in her opinion, the treatment protocol for neuroblastoma is the worst one, the hardest one for children to cope with. The treatment is just evil and relentless. But then so is the cancer. It's like this epic battle is being fought on the battleground of my son's body. Battlefields don't look too good afterwards, hey. I mean, they have their own scars.

Anyway, less of that. Thank you, blood donors! Looks like we'll be making use of you again today!

Trazzle,

It's so difficult, a dreadful ride for all of you. I don't really know what to say, save that we are all splodging like mad, to bring you all strength, especially Joe. And I will think positive thoughts for you all next week. I do know the temperature malarkey and having gosh on the phone, and becoming the world's expert on fever. It is so wearing.

A little party would be fun. He will enjoy it even if it is the littlest party of them all.

Hope he enjoys stickers. Perhaps they will introduce them having seen yours.

Another wishing you strength - it sounds like another tough week & only wish we could do more.

It does sound like an epic battle but Joe has an amazing army on his side & you can't ask for more than that.

As always, wishing you all the very best. Splodging & gingers very firmly crossed.

Just popping in to let you know you are all still in our thoughts and to send some love x

Oh Trazzles, I hope you're either in having the transfusion or home after it.

I was in the other week having stitches after a fall and they said I might need a transfusion. I told them I wasn't having one, as then I'd be unable to give blood and the Consultant didn't know this...

Anyhow, I hadn't lost that much and so I will be able to give in six months. I will ensure I am there, once again, in the hope that the little I can do is enough to tip the scales for Joe and his peers.

Wishing you all strength for the challenging week ahead. I'm stilling thinking of you, and beautiful Joe, daily when I light our candles even though I've not posted much recently.

Your description of Joe's body as a battlefield is very evocative - it makes me think of the scars in the French landscape following the trench warfare and how they are still beautiful because nature finds a way to make it so despite all the battles fought there. Joe's equivalent of lush grass, wild flowers and regeneration will happen. A very touching post Trazzles that has really moved me.

I was thinking of Northern France Tea its good to know they can regenerate. Thank you.

Well, this morning Joe was pale as a ghost so we headed off to hospital. They ran his bloods while we went for lunch and then round an Anthony Browne exhibition at a local museum - called the ward and his blood was fine so no need for the transfusion after all. Totally shocked! Though pleased as it meant we could visit some fab friends who we haven't seen in ages instead.

Joe has had a good day, much less nauseous, much more playing.

Its hard as he has to be connected to his feed most of the time which is in a rucksack. He could (like all the other children) pick up the rucksack on his back and be mobile but he refuses to do that and won't move until he's been disconnected. It's a difficult line between ensuring he gets enough nutrition and also making sure he has something of a life at home. No such worries next week when he won't get out of bed due to feeling poorly anyway, eh.

It's still very beautiful in northern France Trazzle despite the battles. And some of those new landmarks have provided the veterans of the battles, and their loved ones, with reminders of the battles, the desperate times and the good bits in between. And so it will be with your beautiful and brave Joe. A slightly different topography but still the same place.

Dead chuffed about the transfusion

But my, next week sounds like a tough un.

Now about Captain Barnacle. Is he as fastidious in RL as he seems on the telly?

Good news indeed about the transfusion.

Pain about the rucksack! What a determined boy he is..

Well today has been bloody awful.

J started his antibodies at 3.15 and managed an hour where he was bright and cheerful and I thought he might make it through ok.

One minute he was dancing and singing along to Tree Fu Tom (while sat in bed, obvs) then he mentioned his leg hurt and within a couple of minutes he was screaming in agony.

That lasted a couple of hours and since then he's "just" been whimpering with the pain. He's in a very light sleep now so wakes up every couple of minutes and is chatting half-delirious and half in his sleep so I've been berated for having the sound turned down on the tv and for the fact he doesn't have a camera with him

When he's in pain he won't let me comfort him. He yelled at me to sit down and watch TV rather than looking at him/ holding his hand/ striking his hair/ talking to him that in the end that's what I did. I think everyone who has come in must think me a right bitch to be watching TV while my son is screaming in pain next to me. It upsets me to even type that.

He's still in pain but they are wary of increasing his pain meds as they interfere with his breathing. His oxygen level dropped like a stone earlier to 72% (below 92 is a concern). It went straight back up again but I was told off for not pulling the emergency cord as I just pulled the normal call nurse button. I knew it was a problem but ( it sounds stupid) I didn't realise it was an emergency. I thought the emergency button was for like CPR only.

Anyway I know better now.

He keeps asking what's wrong with him. I haven't the heart to tell him the medicine is making him this poorly and that I'm letting the doctors do this. What kind of mother am I to let someone put my child through so much pain. What kind of mother would I be if I refused treatment for him? I can't win.

Oh *Trazzles.... you poor poor thing, it must be horrendous . I am so sorry you and Joe are going through this. You said it yourself, you can't win. You can only do exactly as you have been and be there for him every step of the way.... even if he doesn't particularly appreciate it at the moment! I really hope they can get the pain under control and that you both manage to get some rest.

(FWIW I would have pulled the normal call button too)

Thanks nocake xxx

Joe even made his consultant cry today he came in and was said to Joe (who was screaming): oh I'm so sorry that we're making you feel so rubbish.

To which (sweet, lovely) Joseph replied (between screams): oh it's ok that you're making me feel rubbish.

Cue red eyes.

Bless Joe. He doesn't like it when other people feel bad

How's your little dude nocake ?

Just been catching up with Joe's journey. I am in awe of you Trazzle. You are being so strong for your boy.

Peaceful healing thoughts and prayers from me and my just 4yo DS. Boys this age are just fab.

I'm so sorry today's been awful - and never mind the consultant, I may have been a bit red eyed at what what Joe said; he's such a great boy, isn't he? Everything you write about him tells us that. Again, I'm in awe of your strength.

Bless your dear little boy.

Thinking of you both tonight, and hoping Joe's pain lifts. So very, very hard for you x

((((((Joe))))))

Praying Joe's pain lifts. Poor little lamb. It's awful but you've always made good choices for him Trazzles.

Oh bless him....what a little darling. What a lovely nature he has. I'm pretty sure DS would have been screaming "get off me" or something similar

He's doing really well at the moment thanks Trazzles - apart from his gorgeous little bald head you wouldn't know there was anything wrong with him. Poor little thing has no idea what's happening next week - if we told him now he would just worry and panic about it for the next 5 days so we're leaving it until nearer the time.

Praying very very hard that he has a pain free night. If I could take on some of that pain I would. And I think you're an amazing mum trazzle

So awful for him - poor thing - and terrible for you too to watch. You are all amazing.

What an aweful time you are both having. Joe is such a sweet heart. I hope he gets some respite from the pain soon. You are a fantastic mother Trazzle- an inspiartion to us all. You may not want to hear that but it's the truth. I hope I haven't offened you. I have lit several candles for you you recently and will continue to do so.