The Callum thread

[Don 130]

I'm very sorry to hear that Brad. I can't fix it, but wish you all the best.
Don.

[Tins]

Yesterday Jan would have been 78. Not the same thing, I know. My sisters remember my brother, who would have been 86 next month, but he died 77 years ago.

Scabs are supposed to bleed, Brad. Eventually they heal over, but a cut so deep will leave a scar only you can see, but you will see it always.

I know you know this, but grief is a journey that never ends; the view just changes.

[BradC]

I know you know this, but grief is a journey that never ends; the view just changes.

I know you know this, but it's pretty **** isn't it?

Dad did his "cadetship" with 6 guys. 4 are dead. "Cancer". All came in every morning to blow the asbestos off their drafting boards because the entire building was 'lagged with asbestos'. Out of the 2 remaining, only one doesn't need daily dialysis. So from 6 there's one.

As for Callum, there's a "shrug of the shoulders". Never exposed to bastardry, just was in the wrong place in the wrong time when the finger came down. You know I'd trade places with him in a minute.

[BradC]

The day my wife broke Telethon.

Telethon 2026: Brave and bereaved Perth mum whose poem had Telethon Giving Celebration audience in tears | PerthNow

This came from a chance conversation last year that happened to make it up the chain about how we could no longer watch Telethon because there was never any acknowledgement of the things that didn't work out. It was all sunshine, lollipops and unicorn farts, whereas treatment is hard and not all kids make it. That triggered change and Telethon last year was different. With increased awareness we hope to see additional support services for those families that leave their child behind and walk out those doors for the last time, because right now there's nothing.

I just imagine being the dad called in at 2am on a Sunday morning to be told your kid got hit by a bus, and there's not even a volunteer there to offer them a cup of tea before they're walked back outside and into the night.

The poem came from a talk we gave to a cohort of pediatric palliative care nurses about where we see issues from a parents perspective. I spent weeks writing a 50 minute presentation for these amazing people, and at the end my wife walked in with a poem she came up with the night before and blew up the room. She does it better than I do, and she's more presentable because she wasn't going to tell the premier what she thought of him whereas apparently I can't be trusted in polite company.

This wasn't about a memorial to Callum however we were advised it'd have better impact to make it personal. There were 750 people in that room and I know at least 8 families there that were missing an element.

Big day. No wonder I can't sleep.

[scarry]

You know I'd trade places with him in a minute.

This sure is a great thread,

I say that to my Son,who has CML,and he says i am a fool.

But i certainly would.He has now had 41 yrs,25 with CML,so very lucky.
Has a normal life,apart from numerous regular blood tests,taking lots of tablets,and fatigue at times.

Edit:And to add,he was one of the very first,and the youngest in Qld, to use drugs instead of having a Bone Marrow transplant,so that was a bit of luck as well.
Although at the time they didn't really know the long term affects of the drugs.
The drugs have now changed over the years,and so has the blood screening,it is much finer,so a blood count that was fine 10 years ago,might not be fine today.
They can then adjust the medication better to suit the blood counts.

[BradC]

This sure is a great thread,

I say that to my Son,who has CML,and he says i am a fool.

Thanks, it's a delicate balance between pouring out drunken misery and judiciously posting stuff that I think is important. Sometimes the line blurs.

When Callum died people asked us if we were going to start a charity / foundation to support research into his disease. I know of 3 diagnosis in WA across 7 years. All are in a box somewhere. Other cancers might get 100's of new diagnosis a year, so we support the foundations that provide research funding into those, because they will do the most good. Bits of Callum are in fridges around the world to support ongoing research. That's enough.

Cancer is an interesting beast. Like most medicine, doctors like to pretend they understand it but in reality it's still highly educated guesswork. The improvement in drugs and treatments march on, and that provides better outcomes for a considerable body of the cancer population. We've researched Callums subtype (AML-M7) and found records of one survivor in Canada. It's rare and usually fatal unless the child has Downs Syndrome (in which case it's usually a textbook walk in the park). I wish they'd told us that to start with. It wouldn't have changed what we did or how we did it, but it might have helped soften the inevitable blow.

One thing the general population are blissfully unaware of is the severity of treatment. Sure, kids survive and in a lot of cases thrive, but they've been to hell and back and that leaves both metaphorical and physical scars. I'm so pleased your son is still doing well, but I'm also gutted he has to continue the sharps and drugs. People underestimate the toll that takes (or don't even know about it because people are so damn good at brushing it off, both parents and kids).

We are so fortunate to have Telethon in WA. It provides funding for incredible ancillary support services that improve the lives of these kids. I wish they'd fund some of the riskier research, but I can also understand only wanting to be tied to success stories.

[scarry]

One thing the general population are blissfully unaware of is the severity of treatment. Sure, kids survive and in a lot of cases thrive, but they've been to hell and back and that leaves both metaphorical and physical scars. I'm so pleased your son is still doing well, but I'm also gutted he has to continue the sharps and drugs. People underestimate the toll that takes (or don't even know about it because people are so damn good at brushing it off, both parents and kids).
.

Thanks,yes it is extremely tough on everyone involved.

Unfortunately you have been through worse,talking on here about it all no doubt helps and lets others know as well.


Anyway,be kind,and look after friends and family,you never know what is just around the corner.

A great mate i have known since he was an ankle biter came home from work a few weeks ago, to find his wife had died in bed,she was just over 40yrs old.
To say we were absolutely shattered is an understatement.
She had no medical issues that we knew of,we don't know the exact cause,may never find out.

[Slunnie]

One thing the general population are blissfully unaware of is the severity of treatment. Sure, kids survive and in a lot of cases thrive, but they've been to hell and back and that leaves both metaphorical and physical scars. I'm so pleased your son is still doing well, but I'm also gutted he has to continue the sharps and drugs. People underestimate the toll that takes (or don't even know about it because people are so damn good at brushing it off, both parents and kids).

You nailed it, I hear you. I had AML Inv-16. The Doctors words were "we're going to take you to the pearly gates and bring you back". We called the treatment early because I couldn't take it any more. It guts me just writing this. I was blessed with a happy story to tell, but I've known enough that didn't. I feel the hurt when I talk to people undergoing treatment, I'm gutted for them having to take such a journey they never wanted, people say they're so brave, but they had no choice. And you're right, its also the people around them that do it just as tough. My parents were in the hospital every day with me, it was crazy tough on them, and they also had to make sure they didn't get sick either as there is very little coming back from that also, so in some respects they were equally as isolated. Sorry.. rambling.

[JDNSW]

Not the same loss, but in a little over a month, my fourth grandchild would have been eighteen. If she had lived more than four days.

But if she had survived, her sister, who is arriving here for the school holidays the day after tomorrow, and whose 16th birthday is on Tuesday, probably would not have existed.

Something we tend to forget these days is that in Australia while the number of under fives who die is today around four out of every thousand, this rate is about a quarter of what it was in 1980 it was about fifteen, and when I was was born it was over fifty. And in 1900, it was over 170. (And if you go back further it gets much worse!)

In other words, the idea that almost all children survive to start school is quite a modern idea, and is largely the result of initially the acceptance of the germ theory of disease (now being abandoned by the US government) in the late nineteenth century, and the resultant development of water and sewerage systems in cities, and education of mothers in particular about hygiene in the early twentieth century. Starting in the 1920s but mainly post WW2, vaccines are the really major advance (again being abandoned by the US), with major improvements since then being improved neonatal care and introduction of oral rehydration.

https://www.statista.com/statistics/...ortality-rate/

[scarry]

You nailed it, I hear you. I had AML Inv-16. The Doctors words were "we're going to take you to the pearly gates and bring you back". We

One of the local self employed mechanics i have used for decades,had something similar,sorry i can't remember what it was.

Anyway,he had the bone marrow transplant,this was around 18yrs ago.He would have been around 52,as he recently turned 70yrs old.

He has always said, if it came back,he would never go through it again,it was so traumatic.