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.

[onedev]

It truly is shit. I don't know what else to say. Thinking of you.

[ChickenLickenSticken]

Oh trazzle. That poor little girl and her family. And you guys - it must be horrifically too close to home for you. It is SO shit but you are all doing the best you can, and these aren't real choices.

Wishing you and joe a calm and comfortable day ahead.

[BuffyFairy]

Oh Trazzle, so sorry to read that. My heart goes out to that little girl and her family. I will ask my church to pray for her.

There was no choice, you have to try.

[SPBisResisting]

Yes it is Shit. No family shoulf have to go through it.

[ClockWatchingLady]

Trazzle, so sorry to hear about the little girl.

Hope you're going OK.

[ClockWatchingLady]

(doing OK)

[minmooch]

Oh Trazzles that's very sad news my thoughts are with the little girl and her family.

I hope Joe is more comfortable.

Much love always xxxx

[Trazzletoes]

I know we had no choice. Her family had no choice either. You can't do nothing. Not when there's a chance of clearing it completely. You know they may not survive the treatment. But you kind of put it to the back of your mind. It just brings home how very lucky Joseph is to have got this far.

He was in a bit of pain yesterday but his pain relief didn't have to go as high as last time and he was still more settled though still uncomfortable.

He's been fine on slightly lower pain relief today. He's done a lot of sleeping but has been really cheery this week.

I've just realised I didn't tell you what happened over the weekend!!! This weekend in the last cycle we got an extra day's break because of the bank holiday and Joseph so needed it. He was quite unwell so we weren't expecting much this weekend especially after he had been poorly with the antibiotics.

Saturday morning he asked to go to the park! We agreed to take him on Sunday and went to our local stately home. He had said he wanted to go on the slide and the swings and I was, like, yeah yeah yeah, I've heard that before... He went down the slide 5 times!!! He needed help to climb the steps but he did it!

Saturday morning he had also asked for a roast dinner for lunch. Again we agreed o. Sunday. I cooked my first ever roast (DH cooks at our house but wanted to watch the football...) and Joe ate some chicken. Finished the chicken on his plate and asked for more!! It was so lovely to share a meal with him. I can't remember when he last actually took pleasure in eating - I think it may have been January. I may have cried a little. Tiny steps at the moment but, although progress is slow, it is there.

[SPBisResisting]

not surprised. seeing him eat a good meal and demand more must have been amazing

[northernlurker]

Ok first time that a child on a slide and a roast chicken have made me cry. What a star he is!

[ClockWatchingLady]

That's brilliant Trazzles
Slide x5 AND chicken - not surprised there were tears.

[HeartsTrumpDiamonds]

Trazzle, what a lovely gorgeous weekend! DH is the roast cooker in our house too we tend to do them on the BBQ and I'm so happy that Joseph got to do something so enjoyable and kid-like going on the slide.

That poor little girl. Unutterably sad and so unfair.

[Incapinka]

More splodges from Dorset. Tears brought to eyes by Joe on a slide and having more roast chicken. There are so many of us willing him on his quest and it is fabulous to hear these steps that he is taking.

And am so sorry for the poor girl. I hate the disease and its many disguises and just wish that something can be done to make the treatment kinder with even higher success rates. Thoughts are with their family and to everyone who is affected one way or another by cancer
Big splodges and crossed gingers

[Steamedcabbage]

Oh that's so great that Joe's regaining his appetite for food and play Trazzles! What a trooper.

[GoingGoingGoth]

Brilliant news Trazzles

[ancientbuchanan]

Lovely chicken slide news.

[onedev]

Tears here too at the slide & chicken! Go Joe - he really is a little star.

[barefootcook]

Lovely news about the slide and the chook. He must be feeling quite well.

[ChickenLickenSticken]

Brilliant strong joe, fab images of him whizzing down the slide and tucking into mummy's dinner :-)

[ThermoLobster]

Don't always post but try and keep up with Joe's journey. Love to you all. Poor little girl. So unfair.

[NomDeClavier]

What progress! And well done you on cooking such yummy roast chicken :)

[bobkate]

So very sorry to read about the little girl - her poor family. Such a waste of a little life .
Delighted, though, to read about Joe's pleasure from sliding and roast chicken. Still splodging away for you all x

[Trazzletoes]

Thanks. J has had another good day today. His pain relief was reduced but he still coped well with it. He's been relatively bright, even sitting on his own for half an hour while I took the car in for its MOT.

Everyone seems pleased with his progress and his Social Worker has arranged for us to have a CLIC Sargent volunteer to come and play with the kids for a couple of hours a week so I can get a bit of a break. Hopefully they will take to her.

DH called earlier to say that there was a large lump in Joe's abdomen. The Doctors haven't managed to have a proper feel but hoping its just his tummy muscles and trying to convince myself that's the rational explanation. I hate this. I hate that every twinge, every ache is going to drive us crazy.

[janey68]

Haven't posted before but have followed your thread.
Worrying but totally natural that every lump and bump will cause you anxiety... I think anyone who goes through a traumatic journey as you're doing will always live with some degree of underlying fears.
So pleased that Joseph is feeling brighter and stronger- all good signs; what a little star you have