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!





Wednesday, June 8, 2011

Phone Call

I got a surprise phone call this afternoon.  Not the good kind of surprise.

The kind of surprise where your dad says "How are you today?" with a strange sort of inflection that makes you wonder, "Does my dad think today is a bad day for me for some reason?"  So you say that you are doing ok, and wonder why, exactly, your dad thinks it might be a bad day for you.  Does he know you are coming down with a cold?  Is this some sort of "Joel-versary" that you have forgotten about?

Then your dad goes on to say the words "I'm calling you from the hospital.  I just had blood work done...."

And that is when your heart slowly sinks as you realize that it is going to be THAT phone call.  That phone call that you have been expecting and ignoring the expectation of, for awhile.  But now, again, the day has come.  Again, the day has come, and there is no more time for you.

And you listen quietly as your dad tells you that his leukemia is back, for the third time.

It would be so easy to fall into self-pity.  It would be so easy to say "Why can't I get a BREAK??   Why can't I get more than a few months in between all the bad news?"  And more significantly "What is God DOING to me?"

Or to feel, more subtly, that no one has it as bad as you do.  You win the bad year award, hands down.  What, exactly, that gets you, I don't know.  Maybe at least a plaque?

The truth is, though, that this last year was clearly a gift from God.  It was a miracle that my dad recovered last year, from his almost death due to a combination of leukemia and chemotherapy complications.  It was amazing that he recovered, that he recovered so well, and that he remained around for Joel's decline and death and funeral.  That was what I asked God for last year, when my dad was so sick.  I said "Please don't make me bury my son with out my dad there to support me."

Of course, maybe I should have asked for a bit more!  I got an (almost) extra year with my dad in good health, perhaps I should have asked for at least two.  I say that tongue in cheek.  I really feel a lot of gratitude for the unexpected gift I got in having another year.

Hearing that my dad's leukemia had return, in fact, knocked the legs out from me a bit.  I know I am having a hard time grasping how serious this is.  I just don't want to believe for a second that by this time next year I will be planting flowers at two graves, side by side.  Or maybe even that in just a few months I will be attending another funeral, right beside where my son's body lies.  It doesn't seem real.  How can I believe something so heart rending?

There are three choices my dad can make.  He can refuse treatment.  This means his life will be measured in weeks.  This leukemia moves that fast. 

He can go for high dose chemo.  The last time he did high dose chemo he came away with heart damage and almost died, it took so long for his body to recover enough to make platelets and neutrophils.  His doctor said he has about a 35% chance of surviving the chemo.  If he doesn't survive it, it could mean he goes into hospital tomorrow, and never comes back out...  And then, who knows if or how long it will work, as this is the second time, after treatment, it has returned.

And he can go for low dose chemo.  This chemo would not make him as sick.  He could be an out patient and be at home most of the time.  There is a very small chance he could get a remission from this low dose chemo treatment.  It's a pretty small chance, as even with two high dose treatments, the leukemia still keeps coming back... I don't think anyone feels to hopeful about that.  But the low dose chemo would keep give him more time, and more importantly, it would give him more of the better time, before eventually, the leukemia really takes hold of him.

Frankly, none of the options look that great, though I think he's going to opt for the low dose chemo.  I don't want my dad to die, and if he has to, then I'm not that crazy about the leukemia part.  There really are not that many "nice" ways to die...  At home, in your sleep, at the ripe old age of 95, is generally preferred.  But lots of people don't get that.

I really wish my dad could have had that.  My memories of how sick he really was last time have dimmed very little.  My memories of watching my son slowly die over a few days have not dimmed at all, but they are hard to think of.  And thinking of my father slowly dying this way is not pleasant.  So please pray for us...

I want my son.  I can not have him right now.  I want my dad.  It seems that I can not have him much longer either.  I want my God.  I am glad, that Him I can have, and no one can take that away from me.

4 comments:

  1. So sorry to hear this, Karen. We will be praying for your family.

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  2. Oh Karen...so, so, sorry. :'^( Of course we will be praying for you and your dad. This is one stage in life that I do not look forward to. My dad has had a few scares with a heart attack, a stomach anurism (sp?), and a brain bleed...but has come thru all very well. Just as hard as it was to imagine my life without my son...it is similiarly as hard to imagine it without my parents. They are such a part of my every day life and things would be just so different.

    I know that you know that "different" feeling as we both must now live without one of our children. But when faced with the loss of a parent...it is almost like life is saying that you really have to grow up now. You really are the parent once and for all cuz those people who raised you, and whom you still turn for advice and help, and all that...won't be physically there anymore.

    I am so sorry that you are faced with this pain once again and I will pray for strength and miracle healing. But if his time is soon...oh what a Blessing it will be to have both of your Father's caring in Heaven for your sweet Joel. I know that won't take the pain away, but just maybe that beautiful thought will be the bandaid your heart will need to get you through.

    But...I am not giving up hope yet! We know what miracles our Father is capable of and we will be praying for one of them.

    Take care and Gob Bless!

    Tracy
    'Angel' Graham's Momma

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  3. Oh Karen. I'm so very sorry. I know that call...I have gotten it. I will definitely be praying for you and your dad. Many hugs.
    Karaleen

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  4. Ok...too funny. "Gob Bless"...guess I should have really double checked the spelling on that one. Of course I meant God Bless!

    Tracy
    'Angel' Graham's Momma

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