A Week Off

It's Wednesday and normally that would mean we would be at the hospital.

Yesterday, we got Alex's bloodwork done at a local lab in anticipation of today's appointment.  His white blood cell counts are too low to have today's treatment and successive treatments over the following three days so everything has been pushed back a week.

This is a pretty normal occurrence at this stage and Alex is quite happy about having a full week off!  

He had a quiet birthday Friday and didn't feel great on Saturday and Sunday.  Monday was  better and yesterday was great, lots of talking and laughter.

Fantastic to have my mom and dad out here, too.

I have been a bad blogger again.  I'll try and do better!

HAPPY BIRTHDAY, ALEX!

Things we are Looking Forward to

• No treatments until next Wednesday!

• It's Alex's birthday tomorrow, he will turn 13

• My parents are arriving later today (- this means sausage rolls! and other happy things)

and we always enjoy hearing from you.

If This is Wednesday, This Must be BCCH

(Well, it's Thursday, I know, but I didn't get this posted last night but I wrote the bulk of it then.)

We were at the hospital bright and early.  Too bright and early as it turned out.  I had the appointment down for 7:15 a.m., they had it down as 8:30.  The evidence, they say,  points convincingly that this was completely my error, not theirs.  A key point to their flimsy and spurious argument is that the nurses don't even start work until 8:00 and that they never book appointments before 8.  I remain unconvinced and continue to research my defense and search for the real killer.

Alex was not impressed.

So we waited around for a while and things got underway around 8, vitals, weight, height, blood work. 

Then we waited some more and it was not until about 10:15 when Alex got his lumbar punture followed by a shot of vincristine.  Yum.

Then we waited for the  Respiratory Technician to answer his page.  Once a month Alex gets a drug called Pentamidine.  This is used as a prophylactic in chemotherapy patients to prevent them from getting a particularly nasty type of pneumonia called pneumocyctis pneumonia or PCP.  You don't want to get that.  The drug is inhaled.  They hook up a ventilator type thing, I don't know much about bongs but same principal I guess, and you breathe the stuff in through a tube, takes fifteen or twenty minutes, depending on how fast you breathe I guess and on how often you stop.  It apparently has a nasty taste.  Alex had been looking forward to this for days.  Not!

Turns out the RT's pager was broken and he didn't realize it.  Just thought he was having a quiet day.  Anyway he got there eventually, nice guy, they are all so good at BCCH, and Alex inhaled his way through the stuff.  Done for another month.

I think we were home by 1:30 or so.  Another day at the office.  

Alex ate a bit and drank a bit and was happy to be home.

Congratulations Miles!

Miles passed his drivers test yesterday - well done!

The rest of us might be staying off the roads for a bit ...  kidding

Thank You Blood & Platelet Donors!

Our friend Neil sent this photo along.  Thank you Neil and thanks to those of you have donated blood or platelets.

Grandma P has been hard at work recruiting donors in the Kingston area - thank you all.

All leukemia patients need blood transfusions during treatment, and often platelets which are harder to come by, so this  really a great way to help.

"This smile and donation is for Alex!"  - Neil

HAPPY BIRTHDAY CYNTHIA!

Couldn't do this without you.

I Fell Asleep on the Couch Again

But by the fire and with Emmylou Harris and some Beringer Knights Valley so it was pretty nice actually, especially after a long, tough week.

Alex got better and better as the afternoon went on.  Cynthia arrived with shopping bags and a feast of beef tenderloin, mushrooms, mashed potatoes, Yorkshire pudding (a late request by Sir Alex) gravy, asparagus and peas was soon (despite my avid participation) concocted  followed by strawberries dipped in chocolate that Samantha made.   Alex was up by then and ate pretty well!  I guess one works up an appetite after not eating for a week or so. 

Then Scrabble by the fire which the ladies team won.  At a pivotal moment, the girls persevered, didn't panic and suddenly "digital" emerged out of nothing on a double or triple word score or something. The boys had led early but got cocky and hung on to hopes of forming "quagmire" a little too long, eventually settling for "qualms". Springsteen's "Magic" and then "The Rising" in the background.

 A very pleasant night.  Everyone had the sense to got to bed but your scribe thought another log, another glass and "Red Dirt Girl" were in order.  I'm sure he made it through the first song.

Bizarre how we go from one extreme to the other.  I like this one a lot better.

Friday

Alex was in bed not eating nor drinking for about 36 hours before we left for the hospital early this morning.  He got some fluids intraevenously while we waited for the blood work results.  Turned out his haemoglobin was ok at 101.  That would be a bit low for you or me but is pretty good for him.

So why was he so down and out?  Medicine is often a process of elimination, we eliminated a number of things but didn't come up with a firm answer.  Sometimes it's just that way, a combination of a lot of things.  Makes you feel a bit useless.  And it's funny how three or four hours at the hospital seems almost normal!   

He's a bit better now, a little brighter, but still hasn't eaten anything.  Certainly the fluid probably made him feel a bit better.   Tough sledding right now but this is all part of the process.

Hope you all have a good weekend.

Good luck to those riding in the Gran Fondo tomorrow.  Carb up!

Oh, if you want to join our NFL pool (it's $105 for the year, last season weekly prizes were about $400 and the first place season prize was about $1400), drop me an email.

Brenda Vince

Brenda Vince passed away from cancer yesterday.    I didn't get the chance to know Brenda closely but I really liked her and she made an incredible contribution to our company.  The obituary in today's Globe lists her many accomplishments.  Brenda had to stop work a while back and I was quite touched weeks later to receive a lengthy, handwritten card from her congratulating us on the Ride to Conquer Cancer.  She was 54.  Too young.

Drag City

Yesterday was a long hospital day -  eleven hours door to door.  Alex was better in the afternoon from the transfusion and, while he didn't eat much, had a pretty good evening.

Today was supposed to be a better day.  But it wasn't.  Alex woke up at 6 and was sick and again a little later.  He has been in bed all day, a lot like Tuesday.  No interest in food or drink or getting up or ... anything.

So back to Children s we will go in the morning for some more bloodwork and possibly another transfusion - low haemoglobin is the most likely culprit at this point.

Drag.

Live from BCCH

Another long Wednesday at BC Children's Hospital.  As I write this, Alex is getting his second of two bags of a blood transfusion. 

Alex had a pretty good Sunday, didn't do  much of course, but a good relaxing day.  Cynthia and I went out for a quick dinner and Miles hung with the kids and they all ate a pile of delivered Chinese food.  We got back home early and the kids both went to bed early.  I sat up by the fire and was in a pretty reflective mood.  There was a big party across the street that night.  If you were there, you should have come in to say hello!

Monday was our friend Rob's 50th birthday and we are all keen to head to their house for the party.  Alex went to bed about three in the afternoon to have a nap in preparation.  But stayed there the rest of the day and couldn't get up for it.  And stayed there all day yesterday, until this morning,   During that time he didn't eat, didn't drink and just felt all around lousy.

We were up early this morning to head down here.  The first thing they do here is take a blood sample and Alex's haemoglobin was down to 66.  That's maybe 50% of the low end of normal and explains why he was so wiped out.  Nothing particularly alarming about this, the chemo knocks your haemoglobin down and at this stage most patients need some blood.  Kind of a drag though.

Alex had a lumbar puncture again this morning for a shot of methotrexate and then, what a lot of kids here dread,  "The Peg".  The Peg is a double shot of a drug called asparaginese.  They have two nurses administer a large needle into the thigh muscle of each leg at the same time.  (I didn't ask but I assume they do it this way because if you had them one at a time, you might not let them do the second one!)  But the dude took it in stride.

After receiving asparaginese one has to wait three hours to see if there is any adverse reaction.  And then one can start the blood transfusion.  Which takes another three hours.

But after an hour of blood, Alex looked so much better and is more like himself again,ate some hot chicken wings - it's great.  His temperature is up a bit, so we're watching that.

In The Tunnel

THE TUNNEL is a concept that my friend Dave P., a former colleague and long time friend told me about.  This was many years ago.

We had been living in Vancouver for about a couple of years when Alex was born.  I considered, and still consider, Dave to be an expert on parenting.  (Dave is an expert on many things but for the purposes of this discussion it was about parenting.)  My take on this was no doubt influenced by the fact that at one point we had one child that was (?) a month or three or so old but Dave and his lovely wife S had three children.  And the eldest was three.  He had my attention!

Dave was out on business from Toronto , probably 12 years ago I guess and came to the house for dinner and gave the newbie dad a lot of pointers.  For instance, he showed me a great way to burp Alex which was to prop him up on your knee, place your thumb and index finger under the two armpits  and then lift up to stretch the back, almost lift them up off the knee you stretch them so much.  With the other hand, you pat them on the back.    Guaranteed burping.

Worked like a charm.  (They are very small at this stage, then they grow quickly and you can't do it any more unless you have huge hands.) 

Dave inspected our TV room and pronounced it perfect for early weekend mornings once Alex would be at a crawling stage.  They get up really early, he explained.  Like at 5 or 6 and they're wide awake.  And because you have been "relaxing" at work all week, it's your turn to get up on the weekends.  So he's wide awake and you on the other hand, went to bed at one after maybe a glass too many of red wine.

Here's what you do, he said,  and demonstrated by lying on his side across the width of the doorway, facing in.  You lie here on your side and doze as best you can.  This room is totally baby-proofed so he can come to no harm, sprinkle the toys and things out, turn on Teletubbies, whatever.  The only thing that can go wrong is if he gets out of the room, but you, as the human baby gate, will be woken up by him trying to climb over you.  Pure genius I thought.

Worked like a charm.

Dave also told us three or four years later about "hockey manners".  You see, he explained, we raise these kids to be nice, not to be aggressive and to share - "now let Timmy have a turn with the toy" etc. and then we want them to play hockey and that doesn't work so well.  So, Dave told his kids now you have to have "hockey manners."  Hockey manners are like Backwards Day.  In hockey, you do the opposite of what you normally do.  So if Timmy has the puck, you don't wait until he has had his turn and is finished, no, you go and take the puck away from Timmy.  Hard.  See, that's hockey manners!  At age four this is useful.

But I think Dave's greatest insight into parenting (and he has many good ones) is The Tunnel.  I hope I do this justice but as I recall Dave explains the tunnel along the following lines.  Your first child is born and you descend into this all encompassing, one dimensional tunnel.  You know you are moving forward but the concept of light at the end of the tunnel seems too far off to be real.  You are changing diapers, trying to set a a nap time routine, are on non-stop demand to entertain, clean, feed, water, clean again, feed, clean twice in a row, sleep (what's that?).  Of course when there is a little light, slowly seen in the horizon, you have a second child, start all over again, you're still in the tunnel but now you have two kids to look after and on it goes...

If you have kids, you know exactly what Dave's talking about.  Dave has defined the length of the tunnel as lasting from the first child's birth until the youngest child is just getting out of diapers.  Then, Dave says, you come back out into the light and things get easier.  You notice, years later, these strange two or three year gaps in your knowledge of popular culture.  For the two to three to four years you are in the tunnel (depending on how many kids and how far apart they are born) you have no knowledge of what the top movies or songs or TV shows were or who won the Super Bowl.  You were just too busy, life was one dimensional and if you had any free time, you were going to sleep.

It's very different in a lot of ways (having kids is a good thing for example!) but I think going through treatment for A.L.L. is a series of tunnels.  Sort of like being on a train and going through a mountain range.  Lots of tunnels.  One dimensional and all encompassing.  In this phase of Alex's treatment, we have been going to the hospital on Wednesdays for  treatments (see previous posts) and then back Thursday, Friday and Saturday.  They have been fairly dark days.  Getting out of bed is a drag.  There is little eating or drinking.  We get concerned that it appears nothing has been eaten or drunk in 24 hours, now 36.  There's a lot of nausea.  There's some vomiting.  That all comes with the territory but there's an overriding fear of dehydration setting in.  The days spent on the couch watching endless TV that drove me crazy a few weeks ago, now seem like something to aspire to.

We're in The Tunnel.

You fight it as much as you can and in someways it's fascinating to observe one's own behaviour.  Dan C gave me Dan Ariely's book "Predictably Irrational".  It's a great book and we were interested in it from an investor's and manager's point of view but it's a great read for anyone.  Bottom line is we behave irrationally, even when we should, or even do, know better.  Like you know you're in The Tunnel but you read Ken Bruen novels and stay up late anyway and listen to cheerful songs like Johnny singing Kris Kristofferon's Sunday Morning Coming Down.  I'd like some angst please.   Or maybe it is rational, maybe we cope the way we can.  Is it wallowing?  I like to think not, I'm pretty sure it's not, (it's a lot of work if it is for one thing) but maybe, could be

But tunnels end.  On Saturday, after a rough couple of days, we headed back to the hospital.  Groundhog Day.  (Do groundhogs have tunnels?)    I was wondering whether Alex was a bit dehydrated and might well need some fluids.  He had been whacked hard and mathematically we were also getting to the point where he might need a blood transfusion.  Transfusions take  a long time to administer so we didn't know if this would be a quick trip or an hours long affair.  Alex fights the nausea like hell but riding in a car and knowing you're going back for more of what's making you feel sick doesn't make it any easier.  We had increased and tweaked the anti-nausea medications. Would it make a difference?  We were feeling pretty beaten down Saturday morning but ... a little light?  Alex was green and fighting but wasn't sick on the way in.  The regular clinic is closed on weekends so on Saturdays we go up to the ward where in-patients stay and they give you your chemo there - and take a blood sample.  Getting the chemo takes seconds but then we have to wait for thirty to sixty minutes for the blood work results to see whether a transfusion is needed.  His blood pressure was actually quite good so he`s not very dehydrated, okay, that`s good.

I can feel our mood lightening.  It`s interesting, even though one knows all this ahead of time, the fact that it`s our last day, that we`re done for a few days, one still feels this sense of relief.  Predictably irrational. The blood work comes back and it`s good, quite good actually.  We can go!

We`re climbing out of the tunnel.  Alex say he wants a Slushie.

What?

I think this chemical concoction is abhorrent but I haven`t seen him drink anything in thirty six hours save for a few sips of water to take the endless pills.  We stop at the 7-11 at Oak and Broadway.  What`s the biggest size slushie there is?  Let`s get that.  What's that?  You want some Doritos too?  No problem, Dude.

I'm quite sure that if you had asked me some time ago if  I would let one of my children have a bucket-sized Slushie and a bag of Doritos as their first meal in three days, hell, even let them have a Slushie and Doritos at  any time, I would have laughed at you.   And, unlike the previous three days, when we drove home, after throwing up maybe,  Alex would head immediately to bed, not wanting anything, just curled up feeling like crap, when we got home on Saturday he wanted to be on the couch with the Slushie and the Doritos and the Simpsons.  Two months ago, I would have told you this type of behaviour was leading to the decline of western civilization; on Saturday, I was happy.  And I know that it was silly to feel that way, but I did.

We were climbing out of the tunnel.  We would be going back in soon enough, but on Saturday, things felt good and the next Wednesday seemed comfortably far away.

And again ...

Fourth day in a row going to BCCH for Ara-C.  Tough days, since Wednesday, no highlights and the lowlights aren't worth talking about much.  

May have a blood transfusion today depending on how his counts are. 

We can't wait to get today over with then recover until Wednesday .

Off we go again

Just about to leave for BCCH again.  Another treatment today, one tomorrow and then recovery time until next Wednesday.  Rough afternoon and night yesterday.

Another day ...

Alex rallied as yesterday went on.  He ate a bit and got some liquids in.  We watched an installment of Poirot together (Jacki Chan, it ain't) and then he went to bed.

He was pretty good this morning and ate reasonably well.

And then we went to the hospital.  The goalie made it through the warm-up this time (parking lot) but unfortunately got quite sick in the treatment room.  Handles it like a champ though.  Quick shot of Ara-C and we were back in the car.  Horrible traffic today - for no apparent reason.

Alex went straight to bed when we got home and was asleep in about three minutes.  Still is.  I did some email and then some scheming with Nurse S about tweaking the anti-nausea drugs.

We are trying another drug called Nabilone which is a cannabinoid.  Yes that means what you think it means.  Keeping this one hidden from friends and neighbours

The fact is though that chemo makes you throw up.  It's a drag but it is what it is. 

Speaking of goalies, congratulations are in order to cousin Wil who stopped two out of three shots for the win in a shoot-out last night at an intra-squad Red Deer Rebels game. Well done.

Thanks for the emails.

HAPPY BIRTHDAY NICKY!

Happy 12th Birthday, Nicky!  A great friend to us all.

Quarter past five. Time for some vitamin K, Uncle Chris.

I'm online trying to do some work stuff, answering some emails.  The markets are strong and bonds have actually gone down, I was beginning to think they only went up!  

The drip comes out but they leave the line in Alex's VAD as we will back each of the next three days.  When we return tomorrow, Friday and Saturday they will administer the Ara-C through that line and remove it Saturday.

One of the senior nurses comes in, clocks that we are all finished and heads out to track down the doctor so we can get out of there.  We go into a private office and talk with Dr. P. for about half an hour about this and that, school, moving to London in January, managing nausea and the like.

It's past just past 11 when we finish.  Alex is lying flat - they want you to do that for at least an hour after an LP, but preferably as much as you can over the next 48 hours.  You don't have to but the more you do, the better.  It also reduces the chance of getting an LP headache.  And if you do - the prescription is a glass of Coke.  I kid you not.  They have found that in teenagers the caffeine and sugar in the coke really helps with headaches.  We've tried it, it does.

We can go.  He's not going to say it but I'm pretty sure Alex is worried about gettting sick on the car ride home.  He doesn't.

On to the couch, TV on.  Doesn't want anything.  Says he doesn't feel good.  I take him a glass of Gatorade anyway.

The spinal tap is finished, the chemo injected into the spine.  They wheel Alex out on a gurney into a nearby room.  He is a bit goofy from the sedatives, seeing double which he finds funny  He has to wait for at least an hour, lying flat.  He is allowed to eat and drink now but doesn't want anything.  A nurse transfers the DVD from the procedure room to the room he's in and he picks up where they left off.to the

Cynthia stays with Alex and I duck out  to the on campus Starbucks (they're everywhere aren't they) and grab a fast coffee with a researcher I know here.  She's great and doing some cool work but our chat is brief, I need to get back, don't want to miss seeing the doctor.


Alex's nurse comes back into the room to give Alex his Ara-C.  It takes seconds to administer.  The treatment for the day is all finished now, we could leave but we are waiting to see his primary doctor.  They leave the saline drip going.  Fortunately Avatar is a long movie.  Alex still doesn't want anything to eat or drink.

A nurse gets Alex and does his vitals: blood pressure, temperature, weight.  He weighs 48.7 kilos, down a kilo maybe from last week but up from the lows of 45ish.  The nurse puts an IV line into Alex's "VAD"  This is a "vascular access device" that they surgically implanted in his chest the first week we were here.  It saves you getting poked in the arm every visit.  They can take blood out.  And put chemo in.  He's "hooked up"  as they call it.

He gets some saline fluid dripping in along with an IV of anti-nausea medication and comes back to the waiting room to wait for the LP.  They come and get us after a few minutes.  Alex picks Avatar as movie to watch while they feed a sedative into his arm.  They wait a few minutes for it to take effect and then I have to leave the room.

A Day at BCCH

Arrived at BCCH for our eight o'clock appointment about ten minutes ahead of time.  Alex threw up in the parking lot.  His system should be quite clear of chemo.  Nerves.  Like the goalie before the big game.

Check in at the front desk.  Wristband with ID on, blood requisition forms.  Wait in the waiting room  filled with toys and books, feels like a classroom.  Down the hall, a little girl maybe 4 is crying, then shrieking as they put an IV in her arm.  We wait.

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!