[Luke and Margaret]

Kathy
Please accept my deepest condolences. Grieving is very hard work, especially once the shock starts to lift. I wish for you the support of kind and understanding friends and family, and many warm and comforting memories of your dad’s physical time with you. His spirit will be with you always, that I know with a great certainty.
Margaret

[Luke and Margaret]

Hi Karen
Luke thanked his doc on his last day for being forthright and telling himexactly what was going to happen. He told the doc that it gave him a chance to prepare himself, and to spend time with his family.

My knowing what was going to happen allwed me the same chance.

Each person is different, and each person probably has a different need at this time, but it might be helpful to know how others dealt with this. I do think that a part of Luke gave up the fight once he knew, but he gave it up on his own terms and put his house in order. The end, when it came, was therefore gentle.

Good luck, Karen. I know exactly what you are feeling, and it really is hard. (((Karen)))
Margaret

[Luke and Margaret]

Karen
I’m so glad peace was made. What your family does now, will be with them forever.

I just have one tiny note of caution, from bitter experience over the last few days. Dysfunctional families seem to get way worse during this kind of crisis. Take really good care of you, and focus on what matters in your own relationship with your dad. Sometimes caregivers get trampled once the crisis deepens, and it is critical to your own well being not to invest so much that, once the ups and downs of wacky relationships start to reassert themselves, you don’t end up feeling needessly hurt.

Feel at peace that you did what you needed to do for your own reasons, not anyone else’s. It will see you through in the days ahead.

I know the burden of making the DNR decision. It is very difficult. My thoughts and prayers are with you.
M

[Luke and Margaret]

Go Hans Go!

Margaret (and Luke too, somewhere out there)

[Luke and Margaret]

Barbara
Please accept my deepest condolences. I’m sure its been a rough week, and that you are very much in the grip of grief. I wish you strength, serenity and peace in the days ahead.
Margaret

[Luke and Margaret]

Wow. Did these posts ever buck me up! You;re right…. it ain’t over till its over. I hope this tide of good news is catching!
M

[Luke and Margaret]

Patti
No it is NOT trivial! From your post *I* am feeling jerked around, so I can imagine how you are feeling!

I don’t know if clarity is going to make difference re: treatment or prognosis, but it sure would help you to know what to plan for. More importantly, it will help you to begin the difficult struggle towards acceptance. How the hell are you supposed to achieve any form of acceptance and serenity about all of this if its a moving target?

I don’t know whether AML is so aggressive that things will go critical in a matter of days, but I *do* know that unless you feel you have done everything you possibly can (whether it works or not!) it won’t it right in the long run. The new doc has stirred up a lot. I’m totally for fast tracking his review process and getting him to nail things down for you, now that everything is up in the air the way it is.

I’m so sorry you are going through this. This stuff is difficult enough without the chaos and confusion of unclear diagnosis and prognosis.
Margaret

[Luke and Margaret]

Update – Eve, you were right on the money. They ran a fast drip, way too fast. Gave fluid to resolve failing kidneys without consulting a cardiologist. The result was that his poor heart could not keep up, and was unable to pump away all of the extra fluid. He had a major episode last night, and this morning tests revealed fluid around the heart and lungs. We don’t know exactly how much damage was done, but enough.

The oncologist phoned me this morning to let me know we;re in the last phase now. No treatment of any sort is possible because of the heart issue. I also spoke with his cardiologist, who is very upset. No one called him. If they had, this might not have happened.

We’re planning to bring him home with a full palliative care plan. We have a meeting with the oncologist, the social worker, and Luke to let him know what is happening. However, he knows in his heart of hearts what happened, and what it means.

He’s experiencing a lot of anxiety right now and that isn’t heling anything. He’s continued with the morphine today, mainly to allow him to breathe better and get some rest. Tomorrow I start helping him to find a way to cope, to find hope for improvement and more good days, and to assure him that he’ll be comfortable and well cared for at home. A good antianxyllic would probably be a good idea right about now, and I’ll ask about that too.

I’m exhausted, have had a few good cries today. There have been so many small errors in this whole fiasco, and they all added up too quickly. I try to remember that his case was incredibly complicated, that it was all too easy for errors to occur, and that people tried their best within the time and resources they had available.

I know how hard it is – when they were giving the IVs I kept looking at the pole thinking “how is this going to affect his heart”. I may even have mentioned the fluid restrictions problem, But it was late at night after a long haul, I was tired, and I didn’t puzzle it out well enough. I thought “call the cardiologist” but I didn’t say so. So they are no more to blame than I am. We were all working under difficult circumstances.

So…. the final stage of this has begun, and we will do the very best we can to make this stage work well for Luke as long as we possibly can. I am still not adverse to a miracle, if anyone upstairs is listening?

Thank you for your prayers. We continue to be very much in need of them.
Margaret

[Luke and Margaret]

Jules, I could just hug you!

Luke was readmitted tonight. There’s some kind of puzzle. There may never have been kidney stones. There may, though, be a spleen change. Luke’s platelets have dropped to 17.

Seeing the oncologist first thing in the morning. We need an action plan very quickly. I’m putting the Vidaza in the trunk of my car now.
M

[Luke and Margaret]

LOL! I’m Dutch. We tend to find the ridiculous in everything! And if we can’t find it, we make it. However, I do know what you mean. Luke’s dad tends to high drama, and while Luke is Canadianized, he sure did get the angst gene.

The weather in Toronto is actually pretty darned nice today. I drove to Barrie last night in a rain storm, and it wasn’t too bad. I went to a wonderful Christmas program. In the first five minutes I felt emotion absolutely overwhelm me – if I had let it flow I’m sure I would have had to leave, so stepped on all of that REALLY hard. Christmas is going to be a very difficult season this year, I think.

If you have snow, you keep it there. We had ours last week.

Well, we’re off to the hospital again. This time they want to give him intravenous fluids. Which means more sedentary time, less liklihood of passing those stones. I may rip my hair out.

Then again, it is falling out of its own accord, so may not need to invest the energy.
Margaret

[Luke and Margaret]

Hi Esme
I’ve read what you said very carefully, and am thinking about it.

I keep thinking though, that it is early days here in many ways. There is a lot of distance to be covered in terms of progression of the disease, treatment side effects if we can ever get that far, etc.

Right now he has been waylaid by kidney stones which are not causing him pain, and (I blush to write it) constipation. The two things together are causing the nausea. The remedy is fairly straight forward, and once this is resolved I know he’ll feel a lot better.

I get frantic when the pit falls and side lines of his illness become such overwhelming stumbling blocks. What on earth will he do when the slogging gets really hard??

Its a constant struggle for me to know when to push, when to back off. Its actually easier when he is in hospital. There, the doctors and nurses provide lots of encouragement for my efforts to get him moving. He’s also motivated because he hates the hospital. Once we’re home, the motivation lags.

My sister said something interesting tonight – “he just doesn’t want it.” The psychologist we see pointed out that he talks as if he has “one foot in the grave”. He says it is his Germanic gloom and doom showing, but I’m not sure its a cultural thing at all.

I’m not sure what the role of a caregiver is under these circumstances. Its time for another appointment with the psychologist. We both need something, and that’s a good place to begin. We may not both need the same thing, I’m beginning to see.

Nothing easy about this, is there?
Margaret

[Luke and Margaret]

Hello Hope
The learning curve to understand this didease is a very sharp one – when I first started learning, it felt like I would never understand it all. But you will.

There are two reports that you are going to want to learn how to read and understand:
Blood lab reports
Bone Marrow reports

I found the tutorials at this web site to be incredibly helpful. The topic area is a specific form of leukemia, so not everything will apply to you. However, the tutorials about blood cells and monitoring in the resources section may fit for you.
http://www.cmlmedicalmonitor.com/home_cmlmedicalmonitor.asp

Welcome. I think you will find this forum an incredibly helpful source of support and information.
Margaret

Other Resources:
http://www.hematology.org/
http://www.aamds.org/aplastic/
http://web2.airmail.net/uthman/blood_cells.html

[Luke and Margaret]

Oh Karen (((hugs))) I do so understand!

I’m glad your husband and kids did the thing you needed most. One of the things that keeps running through my head these days is “I’m alive!” I am trying like crazy to connect up with other alive people and get my motors gassed up with whatever essence it is that brings zest to our lives. Caregiving really sucks that zest up fast.

I hope you hug your husband and children a LOT, and let them help you. That isn’t my advice – it’s my 23 year old son’s; he gave it to me today and it seems good enough to pass on.
Margaret

[Luke and Margaret]

I know exactly what you mean. BIG hugs. Here’s hoping today is better, and you all recover quickly from yesterday’s ordeal.
Margaret

[Luke and Margaret]

I am so very sorry. My heart goes out to you, and to your children. God be with you in the days ahead as you and your loved ones rebuild your lives, and may your rich memories sustain you always.
Margaret

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