Okay, So it Turns Out I'm not a Great Blogger!

I know, I know.  I said I would keep this blog updated regularly and I haven't.  In fact, I have written nothing since last Wednesday evening when I wrote "more later."

Time flies when you're having chemo.


Well, not really.

We finished the "induction" period on August 18th.  The preliminary results from Alex's bone marrow biopsy that day were quite good which I mentioned briefly on a previous post.  The more sophisticated testing (which was actually done at the University of Washington, not in Texas, apologies all around)  for what is termed "Minimum Residual Disease" or "MRD" was negative i.e. there wasn't any.  That was extremely good.  The presence of even  a fractional amount of MRD is not good news.  It's not a show stopper, but outcomes are significantly worse when MRD is present, particularly in Alex's age group.  It's what we expected, hoped for and wanted, -and doesn't change his treatment - but was so reassuring nonetheless.

Last Wednesday marked the beginning of the approximate two month "consolidation" phase.  Stock market technicians know what a period of consolidation is, for the rest of us ... it's just a period of consolidation.

It was a long day because Alex was getting a drug called cyclophosphamide.  This is a particularly nasty one (and, like many drugs commonly used today, developed in the 1950s, more on that in another blog entry I think) and it is especially hard on the kidneys.  So, over the last 60 years or so (amazing, isn't it?) we have learned to minimize the potential damage by pumping huge volumes of liquid through the patient intravenously to flush it through.  We got to the hospital a little after eight.  Alex got "hooked up" and had two hours of "prehydration."  During that time, they wheeled him off for another LP as they call it there - aka a "lumbar puncture" aka a spinal tap.  This involves a needle being inserted into your spinal column and they inject a bit of a drug called methotrexate.  (This drug was first shown to help childhood leukemia in 1947.  I don't think it occurred to anyone to inject it into the spine back then but I'll get back to you on that.)


The wonderful doctors at BCCH seem to have the LP down to an art form.  This used to be an agonizing procedure but with advances in, I guess, sedatives, (not anaesthetics) it has been a piece of cake for  Alex.   Like any surgical procedure, one can't eat or  drink for the previous six hours so when it was over, Alex was actually quite hungry.


At the behest of his craving, Cynthia set out to find sausage and egg McMuffins  (we were told kids crave junk food during chemo, when they can eat, and so it seems to be) but by this time Mickey D had stopped serving breakfast so we settled for the Starbucks version which Alex gobbled down.  Please sir, may I have another.  Seriously?


The cyclophosphamide takes about 30 minutes to infuse.  Two hours of pre-hydration, thirty minutes of the nasty and then four hours of post-hydration.  "We make you pee!" cackle the nurses. You don't get the chemo until you have achieved a certain level of hydration, and you don't get to leave until you have peed - this much.  At some point after getting this stuff, one should start to feel a bit queasy.  Alex ate through the whole thing and watched two Jackie Chan (Rush Hour?) movies.  He had two or three sandwiches, some chicken fingers and we were questioning the wisdom of giving him any more food but figured ... eat when you can.  Got home about 5 or 5:30 and Alex had a big supper and went to bed.


Wow.  Could it be this easy?  I was thrilled heading to bed after another unsuccessful attempt to tan my white head.  Thrilled.  I should have known better.


Thursday.  We were scheduled to be at BCCH at 1:30 for a shot of a drug called Ara-C aka cytarabine.  (This is a relatively new drug developed in Europe in the early 1960s and approved by the FDA in the U.S. in 1969.)


Alex was quiet that morning, stayed in bed, watching the clock crawl around until we set off.  Unfortunately he was quite sick in the car just before we got there, while we were there, and then we made it all the way close to home but had to stop at Cypress Mountain for him to puke again.  Straight to bed when we got home.  He surfaced for an hour or so in the evening and ate a bit then back to bed.  Where he remained for the next 18 hours or so until we set out for the hospital again on Friday for a 1:30 shot of Ara-C.  He didn't get sick this time on the way there, seemed quite fine.  On the way home though, he fought it off all the way, managed not to throw up but I could tell he was fighting it hard.  Boom, back to bed.  I think he was curled up in that bed for 44 of 48 hours on Thursday and Friday, sleeping sometimes but just lying there, coping, I guess.  My hero.  And we felt so impotent in trying to help.


Saturday morning.  Hey - we have to go back again for the fourth day in a row!  This should be fun.  On Friday night, though Alex had perked up a lot, he was up, engaged and eating again - Hurray! - and we knew once we had this done, we had three days off until Wednesday.  Saturday was easy peasy.  Drove in, laughed at some good stuff on a CBC Radio comedy show (really!) quick shot, drove home and hey, what's for lunch?


I'll fill in the rest later.  It's late.  If you like these blogs, let us know.  I know I get grief if I don't post!