YNWA RITH.

🙏🙏🙏

Hi all, it helps to put my thoughts updates and gripes here. Kind of therapeutic..

Jnr had his second inpatient treatment, just finished. Was in from thursday night - more about that in a sec, and finished today. Has a top up of chemo on Friday.

I stop with him in the nights while his mum does the day stuff.. it is tough. Not least because the pumps infusing the stuff have these pre-set alarms that tell the staff that they need to change the drips etc but also any sliggt thing sets them off. Jnrs lumen lines had a habit of getting folded restricting the pressure and off the alarm popped every half hour.
Plus all the fluids going through him meant he has to pee every two hours.

Facking top man him, wheels his drip rack alongside him into the bathroom and does his stuff.. in a bottle which has to be labelled, dated, timed and weighed to ensure he is passing enough fluids. I gotta do that, nurses could do it but i rather they did the real stuff rather than waste time doing jnrs pee stuff. At least then I know what he's doing too.

Only time its bad is when that sluice room is running behind.. never washed my hands so much, at least 8 times per night - real good too.

Jnr has this Gaems Vanguard system with a PS4 so he was enjoying that and I with him first couple of days. He got employed by Stoke City on Fifa career mode, won the quadruple with a forward line of Vinicius Junior, Mbappe and Dembele in 2021! Good laugh that.
Though after a couple of days of chemo the sickness and the lack of sleep really knocks him and he cant be asked to play, which would take a lot.

Had my car stolen on the Thursday night opposite the hospital. Must have been watched with all the visits to the hospital and targetted. Cops said stolen to order probably.. gave me a crime number and havent called me since. Went out to the car at 1am and it wasnt there. Tracked it to some estate, cops went didnt find it. Tracker said it had travelled 26000 miles.. something dodge there.

However all of that is put into context, theres a lad a year older than jnr having treatment. He has osteosarcoma (bone cancer) and after some treatment the cancer cracked the bone. He had rods etc put in but 5 weeks later he got an infection which meant he had to have his leg amputated. A facking insured lump of metal means fack all. That poor lad, facking hell. Loved his football too and its not because of some silliness or horseplay that resulted in that.. fack cancer.

Got jnr here trying to make him sleep as its the best thing for him just now, well, that and eating stuff as he has severe loss of appetite.

The consultant said all going according to plan just now, so hope it continues on that way. We are all geared up for blood types and platelets etc for transfusions and im going to donate blood every couple of weeks if i can help it.

Pretty much the dark side this week of a few things, just 30% of the way through one hopes.

Hope everyone had had a safe summer out there, jnr wasnt impressed when a couple of teachers rocked up this week. He had bedside science and maths lessons, but then found out that he could say "i think I'll give it a miss as im tired"! Well at least he did two lessons.

Thanks for all your well wishes all the best folks.

comment by Redinthehead - FreeGaza - فلسطين (U1860)
posted 9 minutes ago
Hi all, it helps to put my thoughts updates and gripes here. Kind of therapeutic..

Jnr had his second inpatient treatment, just finished. Was in from thursday night - more about that in a sec, and finished today. Has a top up of chemo on Friday.

I stop with him in the nights while his mum does the day stuff.. it is tough. Not least because the pumps infusing the stuff have these pre-set alarms that tell the staff that they need to change the drips etc but also any sliggt thing sets them off. Jnrs lumen lines had a habit of getting folded restricting the pressure and off the alarm popped every half hour.
Plus all the fluids going through him meant he has to pee every two hours.

Facking top man him, wheels his drip rack alongside him into the bathroom and does his stuff.. in a bottle which has to be labelled, dated, timed and weighed to ensure he is passing enough fluids. I gotta do that, nurses could do it but i rather they did the real stuff rather than waste time doing jnrs pee stuff. At least then I know what he's doing too.

Only time its bad is when that sluice room is running behind.. never washed my hands so much, at least 8 times per night - real good too.

Jnr has this Gaems Vanguard system with a PS4 so he was enjoying that and I with him first couple of days. He got employed by Stoke City on Fifa career mode, won the quadruple with a forward line of Vinicius Junior, Mbappe and Dembele in 2021! Good laugh that.
Though after a couple of days of chemo the sickness and the lack of sleep really knocks him and he cant be asked to play, which would take a lot.

Had my car stolen on the Thursday night opposite the hospital. Must have been watched with all the visits to the hospital and targetted. Cops said stolen to order probably.. gave me a crime number and havent called me since. Went out to the car at 1am and it wasnt there. Tracked it to some estate, cops went didnt find it. Tracker said it had travelled 26000 miles.. something dodge there.

However all of that is put into context, theres a lad a year older than jnr having treatment. He has osteosarcoma (bone cancer) and after some treatment the cancer cracked the bone. He had rods etc put in but 5 weeks later he got an infection which meant he had to have his leg amputated. A facking insured lump of metal means fack all. That poor lad, facking hell. Loved his football too and its not because of some silliness or horseplay that resulted in that.. fack cancer.

Got jnr here trying to make him sleep as its the best thing for him just now, well, that and eating stuff as he has severe loss of appetite.

The consultant said all going according to plan just now, so hope it continues on that way. We are all geared up for blood types and platelets etc for transfusions and im going to donate blood every couple of weeks if i can help it.

Pretty much the dark side this week of a few things, just 30% of the way through one hopes.

Hope everyone had had a safe summer out there, jnr wasnt impressed when a couple of teachers rocked up this week. He had bedside science and maths lessons, but then found out that he could say "i think I'll give it a miss as im tired"! Well at least he did two lessons.

Thanks for all your well wishes all the best folks.
----------------------------------------------------------------------
Thieving cants

Keep your chin up red, and best wishes to your boy.

Yeah, Fack cancer indeed. Must be tough just now red, keep your spirits up for Jnr, so he can complete the treatment and kick its facking arsse. No kid should ever have to deal with what he is, and it sounds like he’s facing up to the harshness of treatment really well.

That really sucks about your car. What a bunch of utter caaants..bad enough normally, but not when your kid is going through this, you have to wonder about the sort of person that would do that if what you say about being watched was what they did.

Best to jnr, sounds like a great little dude.

comment by Redinthehead - FreeGaza - فلسطين (U1860)
posted 19 minutes ago
Hi all, it helps to put my thoughts updates and gripes here. Kind of therapeutic..

Jnr had his second inpatient treatment, just finished. Was in from thursday night - more about that in a sec, and finished today. Has a top up of chemo on Friday.

I stop with him in the nights while his mum does the day stuff.. it is tough. Not least because the pumps infusing the stuff have these pre-set alarms that tell the staff that they need to change the drips etc but also any sliggt thing sets them off. Jnrs lumen lines had a habit of getting folded restricting the pressure and off the alarm popped every half hour.
Plus all the fluids going through him meant he has to pee every two hours.

Facking top man him, wheels his drip rack alongside him into the bathroom and does his stuff.. in a bottle which has to be labelled, dated, timed and weighed to ensure he is passing enough fluids. I gotta do that, nurses could do it but i rather they did the real stuff rather than waste time doing jnrs pee stuff. At least then I know what he's doing too.

Only time its bad is when that sluice room is running behind.. never washed my hands so much, at least 8 times per night - real good too.

Jnr has this Gaems Vanguard system with a PS4 so he was enjoying that and I with him first couple of days. He got employed by Stoke City on Fifa career mode, won the quadruple with a forward line of Vinicius Junior, Mbappe and Dembele in 2021! Good laugh that.
Though after a couple of days of chemo the sickness and the lack of sleep really knocks him and he cant be asked to play, which would take a lot.

Had my car stolen on the Thursday night opposite the hospital. Must have been watched with all the visits to the hospital and targetted. Cops said stolen to order probably.. gave me a crime number and havent called me since. Went out to the car at 1am and it wasnt there. Tracked it to some estate, cops went didnt find it. Tracker said it had travelled 26000 miles.. something dodge there.

However all of that is put into context, theres a lad a year older than jnr having treatment. He has osteosarcoma (bone cancer) and after some treatment the cancer cracked the bone. He had rods etc put in but 5 weeks later he got an infection which meant he had to have his leg amputated. A facking insured lump of metal means fack all. That poor lad, facking hell. Loved his football too and its not because of some silliness or horseplay that resulted in that.. fack cancer.

Got jnr here trying to make him sleep as its the best thing for him just now, well, that and eating stuff as he has severe loss of appetite.

The consultant said all going according to plan just now, so hope it continues on that way. We are all geared up for blood types and platelets etc for transfusions and im going to donate blood every couple of weeks if i can help it.

Pretty much the dark side this week of a few things, just 30% of the way through one hopes.

Hope everyone had had a safe summer out there, jnr wasnt impressed when a couple of teachers rocked up this week. He had bedside science and maths lessons, but then found out that he could say "i think I'll give it a miss as im tired"! Well at least he did two lessons.

Thanks for all your well wishes all the best folks.
----------------------------------------------------------------------
Red.

I know like me you love your family and cars, and this is just pathetic that you get a car taken with a sick child.

Keep the head up and there are still good people about.

God bless

Glad to hear everything is going as well as it can with your lad. Hope you didn't bore him with too many "cold rainy nights in Stoke" jokes in his Fifa game.

And don't fret too much about the car - the new owner says its very comfortable and you had excellent taste.

Still thinking of you and yours

comment by Redinthehead - FreeGaza - فلسطين (U1860)
posted 2 hours, 5 minutes ago
Hi all, it helps to put my thoughts updates and gripes here. Kind of therapeutic..

Jnr had his second inpatient treatment, just finished. Was in from thursday night - more about that in a sec, and finished today. Has a top up of chemo on Friday.

I stop with him in the nights while his mum does the day stuff.. it is tough. Not least because the pumps infusing the stuff have these pre-set alarms that tell the staff that they need to change the drips etc but also any sliggt thing sets them off. Jnrs lumen lines had a habit of getting folded restricting the pressure and off the alarm popped every half hour.
Plus all the fluids going through him meant he has to pee every two hours.

Facking top man him, wheels his drip rack alongside him into the bathroom and does his stuff.. in a bottle which has to be labelled, dated, timed and weighed to ensure he is passing enough fluids. I gotta do that, nurses could do it but i rather they did the real stuff rather than waste time doing jnrs pee stuff. At least then I know what he's doing too.

Only time its bad is when that sluice room is running behind.. never washed my hands so much, at least 8 times per night - real good too.

Jnr has this Gaems Vanguard system with a PS4 so he was enjoying that and I with him first couple of days. He got employed by Stoke City on Fifa career mode, won the quadruple with a forward line of Vinicius Junior, Mbappe and Dembele in 2021! Good laugh that.
Though after a couple of days of chemo the sickness and the lack of sleep really knocks him and he cant be asked to play, which would take a lot.

Had my car stolen on the Thursday night opposite the hospital. Must have been watched with all the visits to the hospital and targetted. Cops said stolen to order probably.. gave me a crime number and havent called me since. Went out to the car at 1am and it wasnt there. Tracked it to some estate, cops went didnt find it. Tracker said it had travelled 26000 miles.. something dodge there.

However all of that is put into context, theres a lad a year older than jnr having treatment. He has osteosarcoma (bone cancer) and after some treatment the cancer cracked the bone. He had rods etc put in but 5 weeks later he got an infection which meant he had to have his leg amputated. A facking insured lump of metal means fack all. That poor lad, facking hell. Loved his football too and its not because of some silliness or horseplay that resulted in that.. fack cancer.

Got jnr here trying to make him sleep as its the best thing for him just now, well, that and eating stuff as he has severe loss of appetite.

The consultant said all going according to plan just now, so hope it continues on that way. We are all geared up for blood types and platelets etc for transfusions and im going to donate blood every couple of weeks if i can help it.

Pretty much the dark side this week of a few things, just 30% of the way through one hopes.

Hope everyone had had a safe summer out there, jnr wasnt impressed when a couple of teachers rocked up this week. He had bedside science and maths lessons, but then found out that he could say "i think I'll give it a miss as im tired"! Well at least he did two lessons.

Thanks for all your well wishes all the best folks.
----------------------------------------------------------------------

Glad things seem to be going as well as they can, mate. My thoughts and best wishes are with your boy and everyone concerned.

Fack those thieving Cassandra btw.

Caaants* autocorrect

You're a great man and father Redinthehead. I wish you and Jnr all the very best.

Keep on posting the updates if it helps you. Lots of us here hoping all continues to go well.

Big hugs mate

What kind of facking pond life scuuuum steals a car parked outside a hospital ffs

All sounds seriously hardcore mate, and I’m sure it’s very often a serious struggle.

But the most important thing is the messages coming from the consultants, and if they’re positive about how things are progressing, that’s certainly something to focus on.

For what it’s worth, my boss is recovering from prostate cancer atm. Before his ops and treatment he was really struggling psychologically, as he was throughout his treatment. He’s been given the all clear finally now, and I’ve never seen him happier, more excited about and more committed in life in the five years I’ve known him.

He says he won’t be wasting a second of his remaining, thankfully longer than he’d expected, days.

Comment deleted by Site Moderator

Unbelievable Red.

Best wishes to Jnr, you and family.

Appreciate probably not high on your list of priorities at present but if you're speaking to police, ask them if car has been placed on the NAVCIS Alert Register.

May have a better chance of getting it back

https://navcis.police.uk/

You can be very proud of your boy.

Send you and your family good vibes and keep the fingers crossed that your boy recover well and quickly.

Stay strong

I think Gunnerthru has nailed it there: without doubt you can be a very, very proud dad.

The lad sounds like an absolute champion

Keep fighting RITH junior

RITH junior the warrior

Comment deleted by Site Moderator

Hope things are going well for your boy mate.

Hi All,

Thought I'd give an update and some decent news (bad news at the end) - after months of treatment, that took a mental and physical toll
on all connected, jnr will have his lumen lines taken out following a conclusive CT scan that revealed the malignancy has been stopped.
There are no new growths and while some lymph nodes show as being affected by the cancer, they won't be cleared by the chemotherapy, so might be additional surgery.

The NHS were it not supplemented by charitable trusts would have collapsed by now, leaving no hope for kids like jnr. I'm getting on my soapbox now and i'd like you to hear me out.
Having your child affected by cancer is one of the scariest facking things to be faced with. You effectively have to forget about everything for months, sometimes even years.
Cope with the hospital visits every week
Cope with the overnight stays with them
Cope with seeing them physically deteriorate, hair, skin, nails. Looking gaunt through extreme weight loss.
Its horrible to go through, you get happy when they manage to eat a bowl of cereal, and pray they don't throw it up.

The overnight stays are tough. Jnr connected to 4 pumps that are pushing through chemo drugs and saline fluid which all have to be refreshed and recalibrated constantly. The alarms go off each time when its time to do so.
Really difficult for them to get any rest, you're sitting there pressing mute and calling the nurses. At no time was the cancer unit not full.. yet the staffing levels go down through the week.
Usually the unit has to operate on a Mon - Saturday AM cycle with most staff around then with Saturday PM - Monday AM being a skeleton staff. You only go in for treatment once your neutrophil levels are at a certain level.
There's no pattern to it, they could take bloods (at home) analyse and say sorry you can't go as you're too vulnerable, we will check again.
All this pulls the pattern out of sync. There isn't enough staff at times to cope.

With the fluids going in, the fluids come back out again, and so there are continuous toilet visits output has to be measured. The calibration of the machines and drugs is the most important thing so I and other parents decided to sort out the pee.
Taking it, labelling it, weighing it (minus 36gram for the bottle weight) and recording it. We could do this, as its not a technical task, we had to as the cancer nurses needed to focus on getting the right medicines in place.
There is a shortage of staff, and where a disease is risking the life of your child you will doing whatever you can.
You arrive at the hospital sometimes and are waiting for them to send another child home so that they can have a bed free. They don't have enough doctors to make the clinical decisions as they go around the wards - those are enormously anxious times.
You end up having to harangue, plead and even harass to get what your child needs, even when it could mean they pay less attention to someone else. You have to fight, and you feel utterly crap for doing so, but you have to - its your child.

It is then that you realise what is important, what matters and what doesn't. All the parents you lock eyes with are in the same position. - some with kids having limbs amputated, some having to stop treatment and be classed as terminal - what would faster treatment have done you wonder?
As I said were it not for charitable trusts, or good people doing what is possible, the NHS would pretty much collapse - it is chronically short changed.
Could I have afforded to pay for jnr if I had to pay privately? No - but somehow I would have made it possible beg borrow or (yes) steal.

The bad news, some of you may know that I was a jnr football coach for u6's right the way though to u12's (until jnr gave up playing) One of my lads same age as jnr has also been diagnosed with cancer.
For all of you who are parents and have aspirations to be parents, having the health and access to health services that children can rely on is an A1 priority.
For all the jnr's and jnr's team mates in this country,
Tomorrow when you vote, vote for the NHS to be there for us all when we need it.

I would not, ever, having been through this, ever lend the Tories my vote. Jnr is getting better, yet there are thousands of people who when you really empathise with, a few quid doesn't matter at all.

Thanks for your words of support through this, one thing that has kept Jnr's spirits up has been the way Liverpool have been getting the results, hopefully in the new year we will go to some matches as thats on his wish list.

Sobering words and thought, RITH.

I'm really happy to hear jnr seems to be doing well. Fingers crossed that he continues to make progress.

Afraid I won't be able to heed your call for tomorrow, but I'd never dream of giving the Tories my vote and never dream of given their equivalent parties here in Spain my support either.

All my admiration for all the effort and sacrifices I'm sure you are more than happily making, and all the best!

Comment deleted by Site Moderator

comment by Redinthehead - FreeGaza - فلسطين (U1860)
posted 5 minutes ago
Hi All,

Thought I'd give an update and some decent news (bad news at the end) - after months of treatment, that took a mental and physical toll
on all connected, jnr will have his lumen lines taken out following a conclusive CT scan that revealed the malignancy has been stopped.
There are no new growths and while some lymph nodes show as being affected by the cancer, they won't be cleared by the chemotherapy, so might be additional surgery.

The NHS were it not supplemented by charitable trusts would have collapsed by now, leaving no hope for kids like jnr. I'm getting on my soapbox now and i'd like you to hear me out.
Having your child affected by cancer is one of the scariest facking things to be faced with. You effectively have to forget about everything for months, sometimes even years.
Cope with the hospital visits every week
Cope with the overnight stays with them
Cope with seeing them physically deteriorate, hair, skin, nails. Looking gaunt through extreme weight loss.
Its horrible to go through, you get happy when they manage to eat a bowl of cereal, and pray they don't throw it up.

The overnight stays are tough. Jnr connected to 4 pumps that are pushing through chemo drugs and saline fluid which all have to be refreshed and recalibrated constantly. The alarms go off each time when its time to do so.
Really difficult for them to get any rest, you're sitting there pressing mute and calling the nurses. At no time was the cancer unit not full.. yet the staffing levels go down through the week.
Usually the unit has to operate on a Mon - Saturday AM cycle with most staff around then with Saturday PM - Monday AM being a skeleton staff. You only go in for treatment once your neutrophil levels are at a certain level.
There's no pattern to it, they could take bloods (at home) analyse and say sorry you can't go as you're too vulnerable, we will check again.
All this pulls the pattern out of sync. There isn't enough staff at times to cope.

With the fluids going in, the fluids come back out again, and so there are continuous toilet visits output has to be measured. The calibration of the machines and drugs is the most important thing so I and other parents decided to sort out the pee.
Taking it, labelling it, weighing it (minus 36gram for the bottle weight) and recording it. We could do this, as its not a technical task, we had to as the cancer nurses needed to focus on getting the right medicines in place.
There is a shortage of staff, and where a disease is risking the life of your child you will doing whatever you can.
You arrive at the hospital sometimes and are waiting for them to send another child home so that they can have a bed free. They don't have enough doctors to make the clinical decisions as they go around the wards - those are enormously anxious times.
You end up having to harangue, plead and even harass to get what your child needs, even when it could mean they pay less attention to someone else. You have to fight, and you feel utterly crap for doing so, but you have to - its your child.

It is then that you realise what is important, what matters and what doesn't. All the parents you lock eyes with are in the same position. - some with kids having limbs amputated, some having to stop treatment and be classed as terminal - what would faster treatment have done you wonder?
As I said were it not for charitable trusts, or good people doing what is possible, the NHS would pretty much collapse - it is chronically short changed.
Could I have afforded to pay for jnr if I had to pay privately? No - but somehow I would have made it possible beg borrow or (yes) steal.

The bad news, some of you may know that I was a jnr football coach for u6's right the way though to u12's (until jnr gave up playing) One of my lads same age as jnr has also been diagnosed with cancer.
For all of you who are parents and have aspirations to be parents, having the health and access to health services that children can rely on is an A1 priority.
For all the jnr's and jnr's team mates in this country,
Tomorrow when you vote, vote for the NHS to be there for us all when we need it.

I would not, ever, having been through this, ever lend the Tories my vote. Jnr is getting better, yet there are thousands of people who when you really empathise with, a few quid doesn't matter at all.

Thanks for your words of support through this, one thing that has kept Jnr's spirits up has been the way Liverpool have been getting the results, hopefully in the new year we will go to some matches as thats on his wish list.
----------------------------------------------------------------------
Thanks for sharing Red. Was hard to read without getting a lump in the throat.

Can only imagine the hell you have been going through. Junior will be in my thoughts, and best wishes.