BradC
6th June 2021, 12:14 PM
My lad had his last bag of platelets on Thursday and took his final breath last night.
I can't put into words how grateful we are to those of you who have or do donate blood products. All I can do is reiterate my offer of alcohol.
G'day all,
After posting in the blood donor thread, I didn't really consider the consequences for the thread. I've asked the mod team to move the condolence posts here, and I've reserved a post for a brief summary of his journey. Mainly to reinforce the need for blood donors, but also to give an insight into our last couple of years.
This is just a bit of backstory for those interested.
Callum was diagnosed with ITP in Jan 2019. The ED nurse said "Don't worry, it's nothing dodgy and definitely not Cancer". Lots of hospital/doctor visits later, on the Tuesday after Easter when we'd taken him in on the Monday for a blood test because there "was something dodgy" we get the call "Are you the father of... can you bring him in? Yes, I am and can you give me anything to go on? No I cant, bring him in now and we'll fill you in".
Rock into the hospital to meet the hematologists (It's ITP after all), and they say "We've found "some odd cells" in his blood and we want to hand you over to another team". Cool, they wheel us out and down to this corridor with a sign that says "Oncology". I say, "not to worry he's just got a strange blood condition". Daddy in denial (apparently it's not just a river).
A quick bone marrow aspirate says "it's Cancer. We don't know what Cancer, but looks like a Cancer of the blood". flapping yay (you already know what I typed to get 'flap'). 7 weeks and another 6 bone marrow samples later (both aspirate and traphine) we get "acute megakaryoblastic leukemia". Apparently common in kids with downs, and not at all common in kids without (like mine). The Oncologist tells me 7 BMAs to get a leukemia diagnosis is a new hospital record (by a lot). Whoopee!.
AMKL is a subtype of AML, so the Chemo is hard and targeted at wiping out as much of the bone marrow as possible, while leaving just enough for it to re-grow itself. 4 rounds of that and we get out 2 days before Christmas 2019. Each round was between 50 and 28 days in a "flow" room. Basically in total isolation. He's not allowed out. Nice place to be when you're three.
January 2020 we get the final BMA results and the "goodbye meeting". "You are no longer the parent of a cancer patient, he's all good, go and have a nice life". What they failed to tell us is the relapse for AMKL is about 60%. So 27 days later when we get the routine blood result back showing his platelet levels have tanked we get the "Oh, this doesn't look good, I'll book a BMA for next week". Relapse number 1. On the other hand, in those 27 days we had a great birthday party for him. "Happy birthday, you're now 4 and in remission". Not for long son.
So, the only option now is a allogeneic stem cell transplant, or "bone marrow transplant". Yay, Perth has a transplant team and does transplants. So we head straight back into 2 rounds of "normal" AML chemo with the aim of getting it into remission and heading to transplant.
Enter COVID. flapping COVID. So we get to the end of round 2, to find that Perths only transplant physician is on maternity leave outside of Australia, and when the Australian Govt put the call for all permanent residents and citizens to come home, she didn't. So we're told 14 days before we had to leave that we had to go to Melbourne. Cue mad preparation and on 17th June we get on a little Lear and shoot across for a "bed to bed" hospital transfer. There's lots of complex transplanty stuff that happened in there that I've glossed over because it's, well complex. This is going to be long enough already.
We knew heading for transplant that the prognosis over 5 years was 1 in 3 if he reached day 100 post transplant. The risk meeting pre-transplant had some pretty damn confronting risks that somewhat dulled our hope that we'd even reach day 100, but what the hell, it's not like we had an option. We had rented a 3 bed town-house down the road from the hospital and off we went. Right about then we hit the Victorian second wave and **** got real fast. So we were in hell (oops, I mean Victoria) for 174 days, of which some 111 were in Stage 4 lockdown. Right at the start was our transplant. We did get some amusement and zero comfort from "dodgy Dan's daily presser" however.
Transplant went off like clockwork (can't rate the clinical care at RCH highly enough, but some of the arrogance encountered from the hospital would be rated equally highly, but frankly they can afford a degree of arrogance, it's earned.). At about day 80 he developed a cough. That took some working with, which meant that rather than winging out of Victoria on day 101, we didn't get home until the 8th of Dec (from memory that's about 174 days). That was the first flight on the ground after "Mullet McGowan" removed the quarantine requirements for anyone who'd been in Hookturnistan. Flew home Qantas, and despite their persistent lack of doing anything right or actually giving a damn for the last 27 years I've been flying with them, they were awesome from start to finish.
It took a couple of weeks to get the cough and stuff sorted, so in mid-Jan we started to have a normal 4 year old again. He turned 5 in Feb, started School and was off and running. We did Easter and went camping over the holidays, and his March 30th BMA was "completely clear". Over April, we went to the funerals of 2 5 year olds who "weren't as fortunate as us". Nobody should every have to write a eulogy for their 5 year old.
Late April we started to notice a few "extra" bruises, so we pulled forward a routine blood test and it showed platelets had tanked. "Oh crap, but we had trouble with the sample, come back tomorrow and we'll try again". Lower the next day, lower the next day and then "let's book a BMA for next week". Early May, second relapse diagnosis with a prognosis in the "high single digit percentages". We were given 3 options :
Conventional Chemo with 6 weeks in the room. Probability of controlling the disease 26-28%. No further options. (The Sledgehammer)
A new Chemo that was 7 days of infusion in parallel with 4 weeks of oral tables. Can be managed as day-patient and then at home. Probability of controlling the disease 24-26%. Further option of moving to option 1 if it fails. (The Scalpel)
Do nothing. (The Scythe)
We chose the middle option. The Chemo is and has been used commonly in geriatrics for years, but is relatively new in paeds. Only the second time it has been used in WA and we went to the funeral of the first patient (but he had a different subtype of AML and had additional contributors).
The deal was we'll do 3 weeks and do a BMA to see where we're at. 2.5 weeks in we get a fever, so as he's got a PICC in we trundle off to ED and eventually get shunted up to the ward (took 6 hours longer than it should, but given the woefully under-funded WA public health system I should be thankful he survived ED I suppose. I might bitch about the Victorians, but at least they staff their hospital). We get to the Monday (BMA was scheduled on the Tuesday) and they are still seeing blasts in his blood which indicate the Chemo hasn't really done the trick yet. Mean time to effectiveness on this chemo is 4 weeks, so we push the BMA back.
He's a normal, healthy (albiet with Cancer and some form of infection they can't peg) kid who is still riding the ward pedal-tractor and trying to run over the nurses. Come Saturday he takes a serious nose dive. Cue X-ray and "Oh that looks for all intents and purposes like a pneumonia on his left lung". We throw all the normal anti-biotics and anti-fungals at it and it's rampaging. Further X-rays show it's laughing at the drugs. So we get to Tuesday (2nd June) where he goes under a GA and has, chest CT, bilateral BMA, chest drain inserted, additional cannula (for continuous IV Ketamine), Naso-Gastric tube insertion, PICC dressing change.
The kid was not happy when he came around, and a "bit sore" in parts. The team were awesome and all hung around until the hematologists had a look at the slide and at 6pm we had our meeting. "Disease load was 30%, now 80%. Pneumonia was rampaging and has formed a 38mm abscess in the left lung. We're snookered. To fight the disease we need another chemo. To fight the infection we need an immune system (so no chemo).
We've lost. He's on the downward spiral and on enough narcs to keep a commune of junkies well fed, but as he's human we have to put him through this. If he was a dog the RSPCA would prosecute us for doing this.
We remained in the hospital because his care is difficult and he's on a lot of oxygen and "fun drugs". Also, this ward has been his second home for about half of his life, and the team here are his second family. You can't choose your family, and given the choice I'd really like to never have met them. Cancer doesn't seem to give you choices, so I've met them and we love all of them. They adore him and look after him (and us). The day we drove out of the hospital for the "final time" was awful, but it's also the day from when he no longer has to undergo frequent routine procedures that torture him, suffer cold baths and showers due to CAHS braindead policies and just won't be suffering anymore.
6.20 Saturday 5th of June he took his last breath.
Everything we've done, I'd do again. And I'd do another 174 days in Melbourne during stage 4 lockdown if it'd buy us another 4 months like we had at the start of this year.
20 years ago, he'd not have made July 2019, so I have to be grateful for the extra time we've had, even if a lot of it wasn't particularly pleasant. The good outweighs the bad.
That was the overview. There's lots of detail skipped or glossed over because it's complicated, detailed and probably mostly boring unless you have or are living it. I'd be happy to elaborate on any of it if it helps anyone however. I've been told that navigating oncology is hard. Navigating oncology for your kid is a different kettle of fish altogether.
https://www.aulro.com/afvb/attachments/general-chat/171537d1623593367t-callum-thread-img_6578-photo.jpg (https://www.aulro.com/afvb/attachments/general-chat/171537d1623593367-callum-thread-img_6578-photo.jpg)https://www.aulro.com/afvb/attachments/general-chat/171538d1623593440t-callum-thread-61917579525__66abfe80-7e29-4c4d-a795-0605ce7dd1ab.jpg (https://www.aulro.com/afvb/attachments/general-chat/171538d1623593440-callum-thread-61917579525__66abfe80-7e29-4c4d-a795-0605ce7dd1ab.jpg)
It has been my experience that dads don't talk about this stuff, so if anyone ever does have to walk this path, reach out.
I can't put into words how grateful we are to those of you who have or do donate blood products. All I can do is reiterate my offer of alcohol.
G'day all,
After posting in the blood donor thread, I didn't really consider the consequences for the thread. I've asked the mod team to move the condolence posts here, and I've reserved a post for a brief summary of his journey. Mainly to reinforce the need for blood donors, but also to give an insight into our last couple of years.
This is just a bit of backstory for those interested.
Callum was diagnosed with ITP in Jan 2019. The ED nurse said "Don't worry, it's nothing dodgy and definitely not Cancer". Lots of hospital/doctor visits later, on the Tuesday after Easter when we'd taken him in on the Monday for a blood test because there "was something dodgy" we get the call "Are you the father of... can you bring him in? Yes, I am and can you give me anything to go on? No I cant, bring him in now and we'll fill you in".
Rock into the hospital to meet the hematologists (It's ITP after all), and they say "We've found "some odd cells" in his blood and we want to hand you over to another team". Cool, they wheel us out and down to this corridor with a sign that says "Oncology". I say, "not to worry he's just got a strange blood condition". Daddy in denial (apparently it's not just a river).
A quick bone marrow aspirate says "it's Cancer. We don't know what Cancer, but looks like a Cancer of the blood". flapping yay (you already know what I typed to get 'flap'). 7 weeks and another 6 bone marrow samples later (both aspirate and traphine) we get "acute megakaryoblastic leukemia". Apparently common in kids with downs, and not at all common in kids without (like mine). The Oncologist tells me 7 BMAs to get a leukemia diagnosis is a new hospital record (by a lot). Whoopee!.
AMKL is a subtype of AML, so the Chemo is hard and targeted at wiping out as much of the bone marrow as possible, while leaving just enough for it to re-grow itself. 4 rounds of that and we get out 2 days before Christmas 2019. Each round was between 50 and 28 days in a "flow" room. Basically in total isolation. He's not allowed out. Nice place to be when you're three.
January 2020 we get the final BMA results and the "goodbye meeting". "You are no longer the parent of a cancer patient, he's all good, go and have a nice life". What they failed to tell us is the relapse for AMKL is about 60%. So 27 days later when we get the routine blood result back showing his platelet levels have tanked we get the "Oh, this doesn't look good, I'll book a BMA for next week". Relapse number 1. On the other hand, in those 27 days we had a great birthday party for him. "Happy birthday, you're now 4 and in remission". Not for long son.
So, the only option now is a allogeneic stem cell transplant, or "bone marrow transplant". Yay, Perth has a transplant team and does transplants. So we head straight back into 2 rounds of "normal" AML chemo with the aim of getting it into remission and heading to transplant.
Enter COVID. flapping COVID. So we get to the end of round 2, to find that Perths only transplant physician is on maternity leave outside of Australia, and when the Australian Govt put the call for all permanent residents and citizens to come home, she didn't. So we're told 14 days before we had to leave that we had to go to Melbourne. Cue mad preparation and on 17th June we get on a little Lear and shoot across for a "bed to bed" hospital transfer. There's lots of complex transplanty stuff that happened in there that I've glossed over because it's, well complex. This is going to be long enough already.
We knew heading for transplant that the prognosis over 5 years was 1 in 3 if he reached day 100 post transplant. The risk meeting pre-transplant had some pretty damn confronting risks that somewhat dulled our hope that we'd even reach day 100, but what the hell, it's not like we had an option. We had rented a 3 bed town-house down the road from the hospital and off we went. Right about then we hit the Victorian second wave and **** got real fast. So we were in hell (oops, I mean Victoria) for 174 days, of which some 111 were in Stage 4 lockdown. Right at the start was our transplant. We did get some amusement and zero comfort from "dodgy Dan's daily presser" however.
Transplant went off like clockwork (can't rate the clinical care at RCH highly enough, but some of the arrogance encountered from the hospital would be rated equally highly, but frankly they can afford a degree of arrogance, it's earned.). At about day 80 he developed a cough. That took some working with, which meant that rather than winging out of Victoria on day 101, we didn't get home until the 8th of Dec (from memory that's about 174 days). That was the first flight on the ground after "Mullet McGowan" removed the quarantine requirements for anyone who'd been in Hookturnistan. Flew home Qantas, and despite their persistent lack of doing anything right or actually giving a damn for the last 27 years I've been flying with them, they were awesome from start to finish.
It took a couple of weeks to get the cough and stuff sorted, so in mid-Jan we started to have a normal 4 year old again. He turned 5 in Feb, started School and was off and running. We did Easter and went camping over the holidays, and his March 30th BMA was "completely clear". Over April, we went to the funerals of 2 5 year olds who "weren't as fortunate as us". Nobody should every have to write a eulogy for their 5 year old.
Late April we started to notice a few "extra" bruises, so we pulled forward a routine blood test and it showed platelets had tanked. "Oh crap, but we had trouble with the sample, come back tomorrow and we'll try again". Lower the next day, lower the next day and then "let's book a BMA for next week". Early May, second relapse diagnosis with a prognosis in the "high single digit percentages". We were given 3 options :
Conventional Chemo with 6 weeks in the room. Probability of controlling the disease 26-28%. No further options. (The Sledgehammer)
A new Chemo that was 7 days of infusion in parallel with 4 weeks of oral tables. Can be managed as day-patient and then at home. Probability of controlling the disease 24-26%. Further option of moving to option 1 if it fails. (The Scalpel)
Do nothing. (The Scythe)
We chose the middle option. The Chemo is and has been used commonly in geriatrics for years, but is relatively new in paeds. Only the second time it has been used in WA and we went to the funeral of the first patient (but he had a different subtype of AML and had additional contributors).
The deal was we'll do 3 weeks and do a BMA to see where we're at. 2.5 weeks in we get a fever, so as he's got a PICC in we trundle off to ED and eventually get shunted up to the ward (took 6 hours longer than it should, but given the woefully under-funded WA public health system I should be thankful he survived ED I suppose. I might bitch about the Victorians, but at least they staff their hospital). We get to the Monday (BMA was scheduled on the Tuesday) and they are still seeing blasts in his blood which indicate the Chemo hasn't really done the trick yet. Mean time to effectiveness on this chemo is 4 weeks, so we push the BMA back.
He's a normal, healthy (albiet with Cancer and some form of infection they can't peg) kid who is still riding the ward pedal-tractor and trying to run over the nurses. Come Saturday he takes a serious nose dive. Cue X-ray and "Oh that looks for all intents and purposes like a pneumonia on his left lung". We throw all the normal anti-biotics and anti-fungals at it and it's rampaging. Further X-rays show it's laughing at the drugs. So we get to Tuesday (2nd June) where he goes under a GA and has, chest CT, bilateral BMA, chest drain inserted, additional cannula (for continuous IV Ketamine), Naso-Gastric tube insertion, PICC dressing change.
The kid was not happy when he came around, and a "bit sore" in parts. The team were awesome and all hung around until the hematologists had a look at the slide and at 6pm we had our meeting. "Disease load was 30%, now 80%. Pneumonia was rampaging and has formed a 38mm abscess in the left lung. We're snookered. To fight the disease we need another chemo. To fight the infection we need an immune system (so no chemo).
We've lost. He's on the downward spiral and on enough narcs to keep a commune of junkies well fed, but as he's human we have to put him through this. If he was a dog the RSPCA would prosecute us for doing this.
We remained in the hospital because his care is difficult and he's on a lot of oxygen and "fun drugs". Also, this ward has been his second home for about half of his life, and the team here are his second family. You can't choose your family, and given the choice I'd really like to never have met them. Cancer doesn't seem to give you choices, so I've met them and we love all of them. They adore him and look after him (and us). The day we drove out of the hospital for the "final time" was awful, but it's also the day from when he no longer has to undergo frequent routine procedures that torture him, suffer cold baths and showers due to CAHS braindead policies and just won't be suffering anymore.
6.20 Saturday 5th of June he took his last breath.
Everything we've done, I'd do again. And I'd do another 174 days in Melbourne during stage 4 lockdown if it'd buy us another 4 months like we had at the start of this year.
20 years ago, he'd not have made July 2019, so I have to be grateful for the extra time we've had, even if a lot of it wasn't particularly pleasant. The good outweighs the bad.
That was the overview. There's lots of detail skipped or glossed over because it's complicated, detailed and probably mostly boring unless you have or are living it. I'd be happy to elaborate on any of it if it helps anyone however. I've been told that navigating oncology is hard. Navigating oncology for your kid is a different kettle of fish altogether.
https://www.aulro.com/afvb/attachments/general-chat/171537d1623593367t-callum-thread-img_6578-photo.jpg (https://www.aulro.com/afvb/attachments/general-chat/171537d1623593367-callum-thread-img_6578-photo.jpg)https://www.aulro.com/afvb/attachments/general-chat/171538d1623593440t-callum-thread-61917579525__66abfe80-7e29-4c4d-a795-0605ce7dd1ab.jpg (https://www.aulro.com/afvb/attachments/general-chat/171538d1623593440-callum-thread-61917579525__66abfe80-7e29-4c4d-a795-0605ce7dd1ab.jpg)
It has been my experience that dads don't talk about this stuff, so if anyone ever does have to walk this path, reach out.