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Joseph's ongoing journey with Neuroblastoma(998 Posts)
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.
Right, no one post, I'm going to set up another thread straight after this... Just one more moan!!!
Basically Joe started his injections yesterday as expected. He was such a good boy for his pre-injection tests. Last time he had his ECG he had to be admitted to the ward and sedated. This time DH has gone away this week with work and wanted to see J last night before he went. Joe was so brave and calm so that he could get home. Bless his heart.
A problem with Joe's blood test meant we were delayed by a couple of hours ( its already a day-long effort) but got J an hour with DH before bedtime. Lovely.
Then his temp started to rise, as expected. At midnight he had a fever so called the ward knowing I would need to bring him in because he needs to have the blood from his Hickman line cultured.
Normally you have to also have a blood test to make sure he's not neutropenic. He'd had his blood run 8 hours before - that's always been fine in the past so all good - shouldn't have to wait 1-2 hours to get those results back as he was miles from neutropenic... Oh no, not last night, need to run it again because apparently his levels could have crashed. Since been confirmed to me that its extremely extremely unlikely on his current treatment in that level of time but at 2am that has already put me in a bad mood.
They also need to take a blood sample from Joe's hand. I understand this is their policy but when your child is being pinned to the bed and begging you to protect them, it's pretty hard going. The nurse told me I could leave if I wanted. I'm not sure what good that would have done Joe so I didn't go, of course. It meant that he's screamed whenever anyone has gone anywhere near his arms today though...
Then the Doctor told me he had to stay in because he has a chest infection.
He does not have a chest infection.
He had been checked over by his consultant earlier and had had a clear x ray. No concerns at all. Night Dr decided that everything could have changed by then and that he needed antibiotics because he had a temperature. The injection gives him a temperature!!!!!!!!!!!!!!!!!! I'm all for antibiotics when necessary but they just aren't right now!
So I agreed to one dose (they give a standard one dose within an hour of arriving). I made it clear they weren't to give him anymore antibiotics without discussing with me first (he was dehydrated so had to be admitted for fluids anyway). This morning I wake up to find he's on regular Iv antibiotics. I am absolutely fuming that my clear wishes have been ignored. I wasn't even refusing treatment! Just asking for discussion first so I could make a decision. Taken out of my hands.
I spent most of the night and morning crying with frustration. Saw one of the consultants this morning who is lovely. She said she would have had J on antibiotics too due to high heart rate and low blood pressure (which was normal for Joe but last nights Dr ignored my comments and refused to verify that for herself) and concerns he may have an infection in his line, although unlikely it could make him extremely ill pretty fast. I get that, a clear explanation. And completely different kind of infection from the ones the Drs were banging on about last night anyway.
Joe's consultant came along later as well and was also lovely. He agreed it was ridiculous to suggest J had a chest infection and to ignore the earlier neutrophil count. He would also have had him on antibiotics.
I'm just raging that this couldn't be discussed with me first. I have never refused any treatment for Joseph. I have his best interests at heart and being completely dismissed all round was so disheartening. It was good to know the consultants were supportive of me though.
The thing is, the way we were treated last night makes me not want to phone in next time he gets a temperature from the injection and that's not good for anyone.
Gah. I'm calmer now, anyway, and off to start a new thread.
That's crap. Sorry you're having to fight so hard for something you'd expect them to do naturally (ie listen to you). xx
God Trazzles, I was reduced to raging tears in a consultant's office when I arguing for my son to have grommets...it's literally the smallest operation it's possible to have and I was in tears of frustration and anger at not being listened to. How you keep any sense of equanimity at all in your circs is beyond me and if you have to shout and scream, that's what you must do.
It takes it out of you though...hope Joe is feeling better soon.
Agree with MrsShrek - you need your hard hat. It all sounds really frustrating. I hope Joe feels better today.
<grabs Trazzles and squeezes>
You bring to mind a lioness roaring to protect your cub. You are a doing a brilliant job and I wish for a better day today for you all.
Sounds shit trazzle, I'm sorry it's left to you to fight his battles, and that there isn't any room for flexibility. I suppose you can see their point as it's probably tried and tested, but they should also take first hand experience and the fact that every child is different into account.
Thinking of you all and hoping you catch up with some much needed rest soon.
time to don that hard hat again... hope Joe is doing well atm
Ugh. Today has been utterly shit. I've just had a row with 2 Doctors and 2 Nurses. They're not listening to me at all. I'm so bloody frustrated with everything.
Poor Joe is in a right state because of their stupid protocols that have no flexibility in them whatsoever. They are giving him a completely pointless antibiotic when there is nothing bloody wrong with him at the moment. It is utterly utterly stupid. I'm sodding exhausted and thoroughly pissed off.
And to be honest in a good mind not to bother ringing the hospital next time Joe gets a temp from his medicine if we have to go through this ridiculous palaver every sodding time.
Just checking in and hoping all going ok. Wanted to let you know that DH and I gave our pint of the red stuff on Weds. Not saying for a pat on the back, but more to say I was gobsmacked by how heaving the place was!
My DH went in the afternoon ( for the first time so v proud of him ) and said it was heaving then too. There were young and old there, men and women. It was really quite brilliant to see. I used to give blood regularly but fell out of the habit after having the girls. It was good to get that 'feel good' factor. I hate, hate, hate needles but I can honestly say that as she was just about to do it I was thinking of Joe, and if he can manage all the shit that's been thrown his way, then I can put up with a needle in my arm. So thanks Joe for making me brave for a few minutes x
Hope things are going well this week, Trazzles, and that you can bask in the successful party achievements.
another one grinning at 'over and out' he sounds like a fantastic little boy! you should be so proud of yourself for organising a party in the midst of everything, I cant begin to imagine how bittersweet it must feel, but it sounds like he had a lovely time xx
Hehehe. Over and out. A very funny boy
Well done Trazzle- it sounds like a fantastic party. It must have been wonderful watching Joe enjoy himself.
Our vicar ( with a whole lot of English vicars) is going on a pilgrimage in Spain later this month. He is walking the last 210km of the Camino de Santiago. He has asked for specific prayer requests so I suggested that they pray for a full recovery for Joseph. I hope you don't mind. He said the place has literally been soaked in prayer for over 1000 years and amazing things have happened.
He has such a fab sense of humour!
My boy has just had 8 clear days of no vomiting - the first clear week in nearly 2 years!!! Chemo tonight shall put paid to that and I will go back to worrying whether its the chemo or tumour causing the sickness as that's how DS symptoms started. He has his 18th birthday in 2 months time - the what should have beens and what ifs are terribly, terribly hard.
Much love as always xxxx
Oh little Joe that has brightened my morning xx
Ha, bless him, I love it.
Glad he had a good Birthday, take care.
Over and out.
Thanks all, yes there has been much due to Joe's insistence on certain cakes for certain occasions, despite him not really eating any of them... Ah well, someone had to
Had to be Fireman Sam for his actual birthday and Peppa Pig for his (pirate) party.
I counted this morning and if everything goes to plan (which is highly unlikely as he's still a long way from recovered from his last dose of treatment) then we have 90 days of treatment left.
I know its the treatment that is making him feel rough but its so hard when he has a tummy ache every day and we know that's how it all started.
He's just called over the monitor for me to change his nappy "mummy, my nappy needs changing, over and out"
taking my hat off to you Trazzles, for giving him a lovely party and to Joe for having a lovely time, despite the awful worry you have in your heart all the time. x
Good on you Trazzles..thinking about you all and wishing you well x
Happy Belated Birthday Joe! I can well understand your mixed emotions, but well done for getting through the party, Trazzle.
I'm so glad he had such a happy time - and you should be bloody proud of yourself for creating such a happy time.
The bittersweet thing - it sucks, so so much.
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