Welcome

This blog is my record of my journey with my son who had a rare, and eventually fatal metabolic illness. It is the story of the last year and a half of his life, his death, and after. I have shared this journey this in the hopes that is will not only help me come to terms with the realities, but also that someone along the way may find it helpful, as they face a similar journey.







This is my place to comment on events, blow off steam, encourage myself (and maybe you), share frustrations, show my love, grieve my losses, express my hopes, and if I am lucky, maybe figure out some of this crazy place we call life on earth.





The content might sometimes get a little heavy. As an understatement..







WARNING:







People who are grieving may write sad or difficult things and bring you down. This blog may not be for the faint of stomach or of heart. Read with caution and at your own risk.





If you are new to this blog, I suggest reading it from oldest to newest. It isn't necessary, as what I write is complete in itself. But this blog is sort of the result of the "journey" I'm going on, and I think it sort of "flows" better from oldest to newest.



I do hope that in the end you will find, in spite of all the difficult and heartbreaking things, things that are worth contemplating.





Welcome along!





Thursday, June 23, 2011

Update on my Dad

Ok, there is no good way to say this.  So here it goes.  My Dad has not been doing well.  Chest X-rays revealed that the reason he is coughing and struggling to breathe is that one of two things (or both of them) is happening.  Either my Dad has pneumonia, or the leukemia has moved into his lungs...  Remember the first bout with leukemia, it was not only in his blood, but had started to localize on a spot on his neck?  Well, the doctors believe that this might be what is happening in his lungs...

The antibiotics targeted at pneumonia did not seem to help, so if it is pneumonia, it is likely a very resistant strain.  They have upped my Dad's chemo meds DRASTICALLY because on the low dose chemo his WBC had jumped from about 16 to something like 27 overnight.  They have upped the chemo meds drastically, not in an attempt to "cure" my Dad, but because a WBC of 27 means a lot of discomfort for my Dad.  Yes, it is chemo, but it is really for comfort's sake.  That is one way that leukemia is a bit different from other cancers.  It's chemo, but it is more in a palliative role, just to try and keep him comfy.

The doctors who spoke to my Mom this morning told her to phone family and let them know.  Of course, they can't really predict much, but they estimated that my Dad likely had about 3 or so days of life left, the way things were going...

It's been a tough week.  I know I keep saying this, but that is because I keep having to see it: it is very hard to watch someone you love feel so miserable.  My Dad tries so hard to be brave, but I can clearly see that even with all the meds, he still feels about the way you and I do when we lie aching in bed with a really bad flu, unable to get really comfortable enough to sleep properly.  You know, that really bad flu where you start to wonder "Do I need to make any last minute changes to my will?"  Then add in that he was on 10 l. of O2 and he was still gasping and working so hard to breathe...

My Mom said that he was breathing a bit easier by evening.  Don't know if it's just because evenings are usually better for him, or if the chemo meds were able to clear out his lungs a bit.  Don't know.  I don't even care, really.  I just want my Dad to feel comfortable...

Tonight I went to see Joel's grave.  Maybe this seems oddly morbid, but really, when you are told your Dad has days to live, maybe it is appropriately morbid.  I saw Joel's grave, and it still looks lovely.  Being as it is out in nature, some flowers continue to be chewed on.  For sure, it's not as nice as the ones growing in my flower beds here.  But there were still lots of pretty flowers, and some of them have been growing so nicely.

And right beside it, the place my Dad will be.  I just wanted to walk around and think, and also to not think.  Think about how pretty and peaceful and nice it was.  Think about how the graves would be side by side.  Think about how property values on my Dad's grave would go up, because he was next to the nicest place on the block!

And not think about hospitals, or medications.  How my son would not really be able to remember his Grandpa.  Or how my Mom would cope.  Or any of the other implications.

But I will ask you to keep praying.  Please pray for my Dad's comfort.  Please pray for that especially.  And then please pray for my Mom, and for wisdom in how to support her.  I've known her all my life, but I still feel a bit at a loss at how to help her through this...  So please pray.

Thanks you.  Very much.

5 comments:

  1. Saying prayers for your father's comfort and for you and your mom. I have been here with my own mother several years ago. It is a tough spot to be in. For me, it was wondering how to comfort my grandmother who was losing her 2nd child before her but at the same time also losing someone close. It has been a tough time for you Karen...too much loss. My heart is heavy for you but full of prayer to help you through.

    kd

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  2. So sorry. :'^( Still praying.

    Tracy
    'Angel' Graham's Momma

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  3. So sorry to hear whats going on. If you need any help with Caeden or anything else don't hesitate to call.
    Melanie

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  4. I am so terribly sorry to hear this. I can't imagine what you are going through, losing your precious Joel only a few months ago and now having to say goodbye to your Dad. I am praying for your Dad's comfort and for you all to have strength from the Lord during this time.
    1 Peter 5:7 Cast all your anxiety on him because he cares for you.

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