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 9, 2011

Mist

Today my new health card came in the mail.  The one that had only three people on it, instead of four.  It was hard to see it, like a knee in the guts.  To see that officially we are a family of three, and that from now on, government documents, no matter what I personally feel about it, will only list three names for our family.

And before I forget, thanks everyone for the support and encouragement in comments, email, and phone calls.  Christina, I'm so sorry, somehow I hit delete instead of approve on your comment.  I really didn't mean to, it was a "I'm a bit nutso and distracted" sort of brain blip.  But thanks for your comment.

My dad went in to the hospital today to let them know he has opted for low dose chemo.  He had a transfusion and was sent home with Hydroxiarea tablets.  Yup, most likely I butchered the spelling there, but if you have ever had cancer, you likely know what I meant. 

These are a step in the chemo process.  It starts to kill the bad cells, but not too much at once.  Because your body has to get rid of the bad cells, through your kidneys (yup, you end up peeing them out) which means that hydration is important, and that you don't want to kill too many at once or your body can't handle it.

He gets blood work tomorrow to see if he'll need another transfusion on Saturday, and also it might show that the Hydroxiarhea has started to work.  Hopefully.

On Monday he will move from the pills to injectable chemo meds.  The good news is that this low dose treatment does NOT have to go slowly through an IV, and he can be trained to give himself the shots, one morning and one night-time.  So he can be AT HOME.  As long as his health is stable.  He can be at home, and he just goes in twice a week for blood work.

So now we know the plan.  I can tell you the plan.  But we don't know what the results will be.  I wish I could tell you, because I'd sure like to know myself.  But no one can say when chemo will work or won't, or how well it will work, or how any one persons body will handle chemo, etc, etc.  Oh, yes, there are parameters.  But they are pretty wide.

So the low dose chemo MIGHT give my dad a remission.  Not likely, to be honest, but it is possible.  Or the low dose chemo might do very little to slow down the leukemia.  Sometimes even high dose chemo does not result in a remission.  My dad was fortunate both previous times.  He went into remission with just one course.  Some people have all three courses and don't get a remission.  So it is really hard to say what this low dose chemo can do for him.  His oncologist warned him that while he can try to do this all from home, there is no guarantee to when/if he has to be admitted to hospital...

I really can't look to far ahead.  It's just all foggy up there and I can't find my way.  Only God knows the path through that fog.  And I just have to hold His hand and keep stepping after Him.

I'm hoping that the low dose chemo will be a balance between side effects and leukemia that will allow my dad to enjoy a beautiful summer of mini golf (yes, my dad likes mini-golf) and picnics and BBQs, helping my mom with her ceaseless garden improvements, and reading stories to his grand kids and drinking lots of tea with his children.  I'm hoping that he manages to avoid pneumonia or infections, or platelets too low to maintain with transfusions, etc, etc, etc.  That is all I got right now.

So.  Here a stone and step.  There a stone and step again.  Deeper and deeper into the fog, stone by stone...



Here is my Dad and Joel, at Christmas just over a year ago.  My Dad is sporting a new growth of hair after his first bout of leukemia/chemo.  Joel is sporting a new Christmas outfit, this was a good time with lots of happiness for him.


And this is my Dad, sporting a new growth of hair, and suspenders, after his second bout of leukemia/chemo and a colostomy (hence the suspenders.  I won't go too much into details, but colostomies and suspenders go hand in hand.  What do women do?).  And here is Joel, sporting a lovely bandage from his very last hospital admission, where he developed a lovely pressure sore.  (hence the bandage, if you didn't already connect that).  This is my favorite picture of them, both in their plaid shirts.  This was our last really happy, good period with Joel.  You can't see it in this picture, but there were still lots of laughs and smiles.

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