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..


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!

Tuesday, June 14, 2011


Well, reality sets in.  My Dad is, of course, sick.  It is painful to see that.  I hoped that he'd be feeling better, with the low dose chemo, than he currently is.

Of course, he hasn't started the full dose of chemo until today. 

Still, it was disappointing when he felt sick on Sunday, not due to side effects of hydroxyurea, but with a "leukemia fever."  When he went in to get his blood checked yesterday, his WBC numbers were UP, not down.

So his oncologist immediately doubled his dose of hydroxyurea.  And today my Dad starts on the real deal chemo, just at a low dose.  He'll be giving himself a shot twice a day for ten days, as well as continuing on the hydrox.  Then he is off the shots for 20 days, then back on for 10, etc.

I'm really hoping that now that the shots have started, he'll be able to feel better.  I think my Dad was very discouraged to be feeling so poorly.  He had hoped to go to church.  He had hoped to feel better for his anniversary yesterday, because the last two anniversaries were spent sick in hospital.  He was not in hospital, and he did manage to eat some of the food, but it is difficult for him.  His appetite is a bit low, plus he is supposed to drink a minimum of 2 l. of water a day, and this does hamper your appetite as well.  And of course, it was very discouraging to see that his WBC count was up...  I'm really hoping that he'll be feeling enough better for Father's Day that we can take him out for that mini-golf he's been looking forward to.

My parents looked up the stats yesterday, for this type of leukemia treated with a low dose of chemo.  The average length of time it has given people is 8 months.  Numbers are such a double edged sword.  In a sense, there is hope.  8 months.  That's better than 4.  It's surely better than 2.  And of course, this is an average.

But then it kinda hits you when your mom and dad have their anniversary meal at your house, and your dad is feeling a bit discouraged, and he's low on energy, and his appetite is a bit low and you think, "this is probably the last anniversary they will have together."  It's hard not to feel sad, and even a bit disappointed yourself. 

It is HARD to watch someone you love be SICK AND THEN DIE.

And it is hard, very hard, to do it off and on for three years, not with one, but with TWO people you love very much.

Sometimes the burdens feel too heavy to bear.  That is how I felt this morning.  Like there were too many burdens and not enough hands or a big enough backpack.  But I had a talk with God.  And He gave me His promise "My yoke is easy, and my burden is light."  And so I gave my Dad up to Him, and some of the other stuff too.  I'll just carry the stuff He has for me TODAY, and I'll let Him carry all the stuff from tomorrow onward.

I'm still pretty sad, but I feel lighter.  It is enough for today, to deal with the evil it contains.  It's enough, I don't need any more!  And the Lord is here.  I can "do" today.  Now I'm going out to water some flowers...


  1. Thinking of you and your Dad and praying for all of you.

  2. Karen, we know the pain of watching those you love suffer and die. Just after we lost Makenzie, we learned that James' dad had Myelodysplastic syndrome (a fatal blood disorder). Even though his fight was shorter than your dad's has been, it was still very difficult to watch him get weaker and weaker, until he was eventually suffering in a nursing home. Makenzie died July 2005, and James' dad died the following March, on St. Patrick's day. James also lost a good friend in 1998, then another just a couple years ago. Each death has been so very hard and you do wonder just how much you can handle. Life seems so fragile.

    The numbers are hard. Let's just hope that your Dad blows the average out of the water!