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!





Friday, June 10, 2011

A bit more optimistic

I feel a bit better about my Dad today.  Apparently the medical staff were quite optimistic about the low dose chemo.  No, it's NOT as effective as high dose chemo.  So most of the time they want people to take high dose chemo.  As long as the chemo itself isn't going to kill them.

But the hydroxiarea had started to take my Dad's WBC down, and his platelets today were ok, and the hospital people seemed to think that he might get a remission with the low dose.  They told him it would take about four months for them to get a good idea of how it was all working.  FOUR MONTHS!  That was actually pretty heartening, to hear that they thought he had four months before they'd get an idea how the battle was going.

They seem to think it very possible that the low dose chemo might not just be measured in weeks or months, but that it might be measured in months or maybe even years.  It sounds like the low dose chemo doesn't really have a "cut off" date, it sounds like they can give it indefinitely...

It was all a relief.  It's hard not to feel so awful about it all, given how bad the last two bouts with leukemia and chemo were.  Yes.  They were not fun...  I'm so glad my Dad can likely be at home, and comfortable, and even doing a few things, maybe for quite awhile yet.

Of course, without a remission, indefinitely would eventually come to an end.  And there are no guarantees.  At any time my father could end up in hospital with an infection or other health problem.  But it sounds like we might have something I really feel like I need right now: TIME.  Yaaaaaay for time!  Here's to more of it.

1 comment: