Dad has acute myeloid leukaemia

[ilovearcticroll]

It's not a good prognosis for someone his age-no treatment unless he gets on a trial. Kind of expected him to get to his nineties like my grandparents and certainly outlive my mother who has numerous health problems.

Does anyone have experience of this and what it's like? Diagnosed yesterday. He had a blood transfusion today which should make him feel better (haemoglobin was 8 and should be nearly double that). Will hear about trial after they discuss his case, but otherwise this is an aggressive, fast moving leukemia.

Even though there's been lots wrong with our relationship, l feel sad. He loves us and is kind and supportive, even if not always in the way you'd hope!

☹️dad not feeling great today (didn't shave-unheard of-and went back to bed just after getting up. Friend took him to hospital and he had more blood because haemoglobin right down. Only a week since last one.
Am I right to think once he starts going downhill he probably won't go back up again? Or could it be a blip?

I'm sorry to read this, I hope that the blood transfusion helped him feel a bit more like himself?

Unfortunately, he's really unwell with an infection and has gone into hospital. Doc says this weekend is critical. Sepsis has been mentioned. Antibiotics and IV paracetamol are making a difference, but breathing not good and falling asleep a lot. I think this might be it.

And thanks, Jackrussels, I really appreciate you connecting 🙂

I'm very sorry to read this. Your dad is in the right place for treatment. They'll take good care of him and give him medication to fight the infection. Hopefully his neutrophil count will rise and he'll feel better.

My Dad died of this. My advice would be don’t take any heroic measures. We managed to keep h from the brink a few times medically and I regret it now; he just got iller and more miserable.

So sorry xx

Thank you both. Spickle, he's on heavy duty antibiotics and IV paracetamol. I think it's the right thing for now. But I also know you are right, Wilma. I am not in favour of prolonging his fear, discomfort and general mental and physical discomfort.
Throw in a very complicated family dynamic and a member of the family turning up today that I've never met and wouldn't have chosen to and this is all very difficult.

I'm just praying that those of us who have to make choices for him are on the same page.

I lost my dad to leukaemia and know how hard it is. He went very quickly at home and deteriorated so fast it was unreal. From ok to dying in a week but now that gives me comfort knowing he wasn’t in pain or discomfort.
Your dad is lucky having you there. I’m just sorry you and so many of us have been through this.

I lost my dad to this on 6th Jan, just six weeks after diagnosis. The end was quick and he wasn't in any pain.

So sorry for your loss, CrankyHousewife and Polkadot.

I don't think it is mean or cruel to say that I hope this bit isn't prolonged. He is scared. He is unwell. He isn't going to get better.

We also had difficult family members coming out of the woodwork after years and throwing their weight around. It was despicable.

So sorry you’re going through this.

It's so tricky. No one is being difficult or horrible, and dad wants this person here. I need the opposite, but can't have it. And quite rightly, dad's needs come first. But still. It's hard anyway-this is another level.

I'm sorry to read this Ilovearticroll must be hard enough to know your dad is so ill without complicated family dynamics I hope that things go as well as they can, thinking about you

Thanks JackRussellsAreCute. I know this sounds awful but I am relieved that the "complicated family dynamic" has gone home 😉Just my dad dying to deal with now...that's said with ironic humour, but actually it does feel easier...

I hope that things are peaceful for your dad and that your have some support

You not your!!

Bless you, thanks. Yes, my sister is here and we're a pretty good team. The things she finds hard I'm okay at and vice versa. Because they've managed to treat this sepsis, he's had a chance to talk to all the people he wants to and that has helped him. He now won't have further antibiotics if (probably when) he gets another infection and will die soon, but he is more ready than he was. And I feel calm and a bit more ready too if there is such a thing.
Only thing is that the "complicated" person wants to come back if dad takes a downturn but I have no control over that and it'll be what it'll be.

Dad going to a hospice tomorrow. This is a plan he's happy with (obviously all relative) and although the AML progressing and white counts up, his infection has gone and he feels well. We all know that another critical event is likely to be round the corner but are grateful he is breathing well and feeling much better.

When my auntie passed away from this the hospice were amazing, hope that your and your family have a similar experience. You're in my thoughts

Thank you, JackRusselsarecute. I feel strangely relaxed about it. He has survived a crisis so been able to see and talk to everyone he needs to, and is going to a lovely place with great warmth and care, where the whole family will be included in the category of people to be looked after. Another critical event like an infection will come and come soon, but I think he is at peace with it as much as he can be.

Well, I think the lovely lady at the hospice is now aware of how well I'm coping with all this. Had to ring back twice before I could spit out that I couldn't picture Dad's room and could she tell me what it's like! I think it's just the business of being home, which is lovely, but feeling a bit distant. I could picture him in the hospital but didn't know what things looked like at the hospice.

Is he there now OP? When will you be able to go?

We missed the window with Dad; he became too unstable to transfer and I wish we’d been able to. Everyone says what lovely places they are.

Wilmalovescake-so sorry about your dad.

Yes, my dad transferred this morning. He's been fortunate to have this period of enough calm to get to the hospice-could easily have been different if the antibiotics hadn't had their effect on the sepsis. It certainly won't be hugely long before he's very unwell again, but for now he's there and planning things like his funeral. Funny that that should be such a blessing.
Equally, his head does seem very busy and he was almost more restful when he thought he was nearer to dying.