I lay in this hospital bed, watching the sun cast long shadows over the buildings outside and I am again struck with a rush of perspective. It happens now and again, and usually I'm good at pushing it aside, ignoring it, but tonight my defenses are down. Generally it's a "what the hell happened to our life" kind of moment. And not in the "hey we won the lottery!" Way.

My body has spent the past 2 months slowly shutting down. Antibodies building up in my bloodstream have been attacking the nerves that make a human body function at the most basic level. Nerves that make my heart beat, digestive system digest, my eyes respond to light, and a whole whack of other basic things that one does not "think" about. The stuff the rest of the world takes for granted.

Tonight I lay here, while my family lives out their daily life 100km away from me. My only link is the phone, which is hard when your child cannot talk. I lay here listening to the IV pumps (yes pumpS) pushing IV nutrition into a line that sits in my heart, keeping my body nourished until my digestive system is able to pick up the slack again. I lay here and think about tomorrow morning, when they plan to put a second line in my heart, a bigger line that will come out the side of my neck. I wonder how many 'lines' they can thread into a person's heart before it starts to get cranky from all the action. I contemplate the 'treatment' they are trying tomorrow once the new line is in place and working. Like something out of a movie, they plan ro remove my blood through one section, run it through a machine that removes the plasma (liquid part of your blood) and replace it all with someone elses plasma. I will, once done, have blood made up of many other people. For hours I will sit in the ICU as they do this and watch me to see how I respond.

The theory is that since the antibodies that are wreaking havoc on my body reside in the plasma, by replacinf mine, they will stop the process.

I contemplate the drugs that they have to put me on afterwards, to keep the antibodies from coming back. Harsh drugs. Cancer drugs. The kind of drugs that make people really sick and sometimes bald. The kind of drugs with warnings on the lables about bone marrow damage and cancer as a side effect (I am struck by the fact that most cancer drugs do indeed have Cancer listed as a side effect). And yet all I can focus on is the fleeting chance that these monster drugs might actually give me some time to feel normal, and healthy. Time to go home and squeeze in as much 'life" as I can with my family before the drugs stop working again and I find myself right back here, broken and exhausted all over again.

I think about all this and know it's the right path. I know this is the best chance I have, we have, of a little bit of 'normal' (or as close to normal as we get in these parts).

I am scared. Not of the lines, or the treatment, or the drugs though. The only thing that scares me is that it might not work. Nobody knows.

Or worse - that it will work for a very fleeting period of time. I don't know what's worse, the get better and get very sick all over again, or just stay sick and find ways to manage it.

Tonight I am trying not to think about it all, but with so much riding on tomorrow... It's hard to quiet the mind.

I'll try to update tomorrow when I have a chance. Wish us luck.


  1. Gosh I was reading blog then skipped a few days and ....well, I thought of your rhinocerous lurking around the corner photo! Unexpected words to read.
    I sure hope plasmapheresis gets out them bad antibodies and you can bounce back in a few days!

    SO on a positive - well warped positive - we got our Complex I for kiddos.6+ years.

    Can I send anything for boys? or you to pass time? HUGS!!!!


  2. Oh Keely,I am so sorry. I was thinking of you earlier today and hoping you were feeling ok. I do hope this works for you. And I hope you get to be home with your boys as soon as you can.

    Hang in there as best you can. And if there is anything I may be able to do for you, please reach out and let me know.

    I'll continue to send my get well vibes.

    Take Care,



  3. (((Keely))) I wish your family could be with you right now, I can only imagine how hard this is to be away from your boys. Thinking about you tonight as you head into this procedure tomorrow. LOTS of prayers and hugs coming your way-
    Heidi & Jack.


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