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BayouGir1 09-25-2011 08:13 PM

New here... Dad (78) has AML
A week ago we brought my Dad to the ER for extreme fatigue. To our shock, he was diagnosed with acute myeloid leukemia. He spent 8 days in the hospital, and honestly I thought the end was near he was just *so* weak and frail. Even he was telling me his last wishes and what he wanted at his funeral. Just two weeks ago he was riding his bike, cutting grass, completely independent, etc.

The oncologist does not recommend the "big" chemo for him due to his age and the high mortality rate in the elderly. Instead, she gave him very high doses of hydroxyurea to get his white cell count down and 3 pints of blood to increase the red cell count. To me, it is a small miracle as he is "back" and we came home from the hospital today. Still tired and short of breath, but no where near the death's door he seemed three-four days ago.

We know this is pallative care and not a cure. I have no idea how long this magic dose of meds will work or how often he will receive treatments yet. Or how long it will be before his decline. (seems to be anywhere from 5-8 months, to a year?) Dad has moved in with me and my family and we will do what it takes to care for him.

This is just all so new and life changing for all of us... I'm so overwhelmed.

slenderella 10-01-2011 02:59 PM

Re: New here... Dad (78) has AML
Every patient is different, of course, and my hope is that your father still has a long time ahead. My Dad was diagnosed with AML, also age 78, and I'm sorry to say that he died within a month's time. I'll be praying for all of you, and God bless you for taking him in, it's not easy..


BayouGir1 10-01-2011 06:02 PM

Re: New here... Dad (78) has AML
I'm very sorry to hear your Dad passed so quickly. It must have been quite a shock to learn he was ill and to have him gone so fast.

My Dad is doing "ok" so far. We have him completely moved in with us now. Home Health comes a few times a week to draw blood for a CBC. He went for a transfusion last week - 2 units of blood and 2 units of platelets. He has been feeling fairly good since then, except for being tired after doing simple tasks. For now, all we can hope is for more good days than bad. I hear a lot of similar stories that many do not survive very long after initial diagnosis.

slenderella 10-01-2011 07:18 PM

Re: New here... Dad (78) has AML
Well it sounds as if your father is doing very well so far. One thing I'd like to say to you, from one daughter to will not regret this time you are spending with your Dad. As you say, mine died so quickly that I had little time to be with him and I regret that. Please stay in touch....I care.

blessings, Sue

BayouGir1 10-02-2011 09:29 AM

Re: New here... Dad (78) has AML
Thank you... appreciate the kind words. I know just what you mean. I was surprised that my Dad didn't protest a bit when we insisted he move in with us. I'm glad he is here to spend time with us and my daughters adore him. Sadly, I have already gone down this road. My Mom has been gone 3 years and her story is similar. She was diagnosed with cancer and sent home with hospice. In just over two weeks she was in a coma and she passed 3 weeks later. I can't believe I'm doing this again - bringing another parent home to watch him fade away.

slenderella 10-02-2011 09:37 AM

Re: New here... Dad (78) has AML
How very sad for you, BayouGirl. To have that heartache once is horrible, but to have to go through dealing with a parent with a serious illness again.... it's just plain unfair. Just know that you are not alone, and any time you need to talk....I will be here, as well as the thousands of others who are reading along and can offer their support and understanding. I "met" someone on the grief boards several months ago, and we have become good friends.
Keep an eye on your father's temperature. They are so prone to infection now. Also, if need be and you feel your Dad should go to the hospital, just call 911. That is what they are there for. You can't handle a weak, grown man all by yourself....


BayouGir1 10-02-2011 09:50 AM

Re: New here... Dad (78) has AML
We do have home health coming at least twice a week for now. We can transition into hospice when the time comes. Just having someone else come to check on him is a big help.

I used to visit the grief boards after my Mom passed... it was a big help to know I wasn't alone. I know everyone's time come eventually, but that doesn't make it any easier.

BayouGir1 10-09-2011 11:38 AM

Re: New here... Dad (78) has AML
Well, Dad is back in the hospital. Around 4:45am last Thursday he woke me up banging on the wall. He had been up with the 'shakes' for hours and now was burning up with a 103 fever. Got my kids situated (not easy at 5am!!) and headed to the E.R. upon the advice of home health.

WBC was 103,000, which was more than double what it was 2 days earler. They've had him on antibiotics and Hydrea for a few days now. He's not eating much. BP is low (was 91/57 a little while ago.) He's [B]very [/B]weak and seems to be struggling. His dr has told him it's all about quality of life now, only he can decide when it's deteriorated enough to stop the comfort care. She says when he's ready, to let her know and she will send him home with hospice.

BayouGir1 10-17-2011 01:14 PM

Re: New here... Dad (78) has AML
We are finally home after 9 days in the hospital. Dad has been admitted into hospice, and the nurses will come 2-4 times a week. He has gotten much to weak to tolerate the doctor visits and outpatient procedures. There doesn't seem to be much info on untreated AML, but I would guess he doesn't have much time left.

slenderella 10-19-2011 08:55 AM

Re: New here... Dad (78) has AML
I'm so, so sorry, honey. It's so hard, I know....praying for all of you.

hugs, Sue

slenderella 12-06-2011 04:57 AM

Re: New here... Dad (78) has AML
Bayougirl, how are you and Dad doing these days?

blessings, Sue

BayouGir1 12-06-2011 05:42 AM

Re: New here... Dad (78) has AML
Hi Sue, thanks for thinking of me... I am sad to say Dad passed away on October 22, just 34 days after he was diagnosed. I miss him terribly, but he was pretty bad off at the end so at least he is no longer struggling.

slenderella 12-06-2011 10:51 AM

Re: New here... Dad (78) has AML
I'm so sorry for your loss. My Dad only had less than a month also. I can't believe he's been gone over three months now. Lots of "firsts" that are tough.

Hang in there, honey.


BayouGir1 12-06-2011 11:07 AM

Re: New here... Dad (78) has AML
Thanks... the holidays will be hard for both of us, won't they? It sure is different having no parents around. I never thought I would have no parents alive at only 39.

My daughters have no grandparents at all, which makes me so sad for them. :(

I know it will be ok in time...

At some point I have to deal with the legal issues. And clean out his house. Not looking forward to any of that.

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