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Mumsnet doesn't verify the qualifications of users. If you have medical concerns, please consult a healthcare professional.

Children's health

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

847 replies

Trazzletoes · 17/09/2013 20:47

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.

OP posts:

Report

barefootcook · 20/09/2013 08:39

No problem at all. Will light a candle for the wee girl.

onedev · 20/09/2013 18:46

There are no words Trazzle for you & all the other poor parents going through similar - your strength amazes me.

As always splodging & wishing you the very best. Here's hoping you get home & get to give that gorgeous DD of yours a big tight squeeze.

Steamedcabbage · 21/09/2013 11:58

Hoping x 1000 that you both got home this weekend Trazzles

Praying for the little girl too ...

SPBisResisting · 21/09/2013 13:24

Joining this thread, hopefully for the last time.
Praying for the little girl

northernlurker · 21/09/2013 13:28

Will be praying for the little girl and for your boy Trazzles.

Trazzletoes · 21/09/2013 14:56

Yup we got home yesterday afternoon, 90 minutes later Joe got a fever. Called the hospital and they said if it was still over 38 an hour later we were to come in.

It was.

We did.

Thank God the day staff were still there and we were dealt with by a very lovely nurse who knows his stuff and was politely telling the SHO what was and was not necessary. We were out again after half an hour with no extra distress and a promise we could stay home for the rest of the weekend despite temps provided he didn't become very unwell and his blood didn't grow and y nasties in the lab.

Got home and got Joe in to bed for 8pm. He slept through til 7am!!! I got 8 hours sleep uninterrupted! No sickness, no dirty nappies... Top lad.

No word on the little girl. Poor thing.

OP posts:

SPBisResisting · 21/09/2013 15:01

Glad he is OK now
Yay to sleep too - how long has it been?

ToffeeWhirl · 21/09/2013 15:05

Thank goodness you and Joe managed to get some sleep after all that. It must be lovely to be back with you DD too.

Thinking of the little girl and her parents. It's too awful.

northernlurker · 21/09/2013 17:08

Thank goodness for competent nurses. I bet the SHO was pleased to have her there too. It's rather scary for them at this time of year - just moved to new jobs and big decisions to make. The ones who listen to the nurses are the ones you want treating you and yours.

ancientbuchanan · 21/09/2013 18:02

Well done.

At the other end of the age range I am having similar struggles with the health people and my DM who is in hospital. Intensive, exhausting, and so often tbh one knows better than them because one has seen one's parent or child gp through it before.

Hope you are about to enjoy dd

onedev · 21/09/2013 18:53

So pleased for you guys & pleased you got some sleep!

Thinking of that little girl.

Quangle · 21/09/2013 20:36

Thoughts with you, Joe and the little girl. Thinking of you all and all the other families going through these trials tonight.

LatinForTelly · 21/09/2013 20:56

Glad you got home again and got a good night's sleep, Trazzle. Is it too much to hope that you'll all have another peaceful one tonight?

I will think every positive thought for the little girl you spoke about.

Steamedcabbage · 22/09/2013 19:04

So glad you got home eventually Trazzles and yay for uninterrupted sleep!

Still sending positive thoughts and prayers for you all and for little girl x

TeaMakesItAllPossible · 23/09/2013 21:02

Splodging away still for Joe and the wee girl

goygoy · 23/09/2013 21:11

Still lurking, following your updates and splodging xx

NorksAreMessy · 23/09/2013 21:42

Aha! Here you all are.
Just popping in to send love to Teamtrazzles and Joe-over-and-out
X

Trazzletoes · 23/09/2013 21:50

Joe is back in hospital for his antibodies and unsettled due to pain, but asleep and on lower pain meds than before when they still haven't been enough.

Oh God, I don't even know how to type this. The little girl was too poorly and the medicines didn't do enough.

It is so utterly horrendous that there are children dying because of the treatment they are given. We have no choice at all. If you don't treat your child, they will die. If you do, the medicine we give them might just make it quicker.

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NomDeClavier · 23/09/2013 22:10

Oh trazzle the poor little girl and her poor family :(

northernlurker · 23/09/2013 22:21

The treatment is brutal, the illness is worse. You make the best choices you can for your child. That's all you can do. That's what the little girl's parents did. You have to try to save them. I think any of us would make the same choice they did Trazzles, the same choice you have made. You're right, it's not a choice. It's what has to be.

May she rest in peace. Will be praying for her parents tonight and for you. Joe got prayed for this morning It's your turn now.

GoingGoingGoth · 23/09/2013 22:24

Thinking of you Trazzle, you're doing what you have to.

CoteDAzur · 23/09/2013 22:28

You do what you have to do, Trazzle. Be kind to yourself. The treatment is Joe's best chance and it will work for him.

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Steamedcabbage · 23/09/2013 22:36

Yes it's no choice at all. Thinking of you Trazzles
And still praying x

Trazzletoes · 23/09/2013 23:25

I know, I know we've done the best we can for him. And this little girl was behind us in the treatment plan so its from a bit Joseph has already had. It's just so bloody unfair for her family. Why her? I just don't want another family to ever have to live with this. It's just utterly utterly shit.

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ancientbuchanan · 23/09/2013 23:55

Trazzle, it's shit. My thoughts and prayers for her family, also those and my special splodges for Joe, you and your family.

Focus on the love you have, if you can, the rest us unbearable.

Flip

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