Grinding It Out

As noted earlier, last Tuesday was expected to be, and was, a very long day.  We got home about quarter to seven that night, about an eleven hour stint.

We went back on Wednesday for more "Ara-C", which is a nasty one.  We went back Thursday for more.  And we went back Friday for more.  Grind, grind, grind. In between trips, Alex has been in bed pretty much the whole time.

Wednesday and a good chunk of Thursday were pretty tough for Alex.  He didn't really eat or drink for 24 or 36 hours. Miserable.  This would have been due the cyclophosphamide and Ara-C combined.   Fortunately, he wasn't throwing up and didn't get dehydrated.  He felt sick and pretty beaten up, not a lot of fun.  On Thursday afternoon he started to improve a little and ate and drank a bit.  On Friday, we were in a bit earlier in the morning and glad to be finished fairly quickly.  Alex drank very well that day and ate sparingly.  His mood was a lot brighter though and he continued to improve over the weekend and was up and downstairs eating tacos last night and in good spirits.

Oh, you're feeling better?  Let's whack you again!  Our appointment today was at 10:00 a.m. but things were a little backed up and nothing really happened until 11:30.  Then Alex had another lumbar puncture to receive methotrexate in the spine.  The kids often like the sedative that goes with this and can be a bit giddy afterwards but today Alex was a bit more subdued than usual.  One needs to lie flat for at least an hour after an LP and then he had another dose of the Ara-C.  We got home about 2:30.

Alex's blood counts have been declining through this, his haemoglobin was down to 90 today and the white blood cells and platelets are also well below the low end of a "normal" range.  This is to be expected but it makes you feel pretty crummy.

We go back tomorrow and Wednesday for shots of Ara-C (in theory these should be quick in-and-out visits but that happens maybe a third or half the time - that's not a complaint, my BCCH friends! It just is reality.)

On Thursday, Alex's blood will be tested again then  he'll have a final shot of Ara-C (Hurray!) but we'll have to hang around and wait for the bloodwork to come back to see if he needs a blood transfusion.  Chances are pretty good he will, in which case it will be another fairly long day.  A grind.

Alex is in pretty good spirits tonight, all things considered.  This week might be a little easier than last week as he didn't have the cyclophosphamide.  Offsetting that is that he's a lot more beaten up than last week so we'll see how these next few days go.

In the meantime it's one day at a time.

Grinding it out.

Christian Meier, Professional Cyclist, Rides for Alex This Month

Christian is a professional cyclist with UnitedHealthcare Pro Cycling and was the 2008 Canadian National Road Champion.  You can read about Christian at www.uhcprocycling.com/team/christian-meier 

You can read what Christian says about Alex here: bikingbros.com/i-am-riding-for

Thank you, Christian, an honour for Alex!

Back At It and the Power of Doritos

Alex has had a bit of a break since the last round of heavy duty chemo on January 31st.  It usually takes two to three weeks (mostly three) for a patient's white blood cell count to recover before the next batch of treatments begin.  Alex of course also had three days in the hospital due to the onset of some incredibly severe pain back on February 6th that was likely caused by the heavy doses of steroids he took as part of the treatment and some pancreatitis.  Fortunately the painful part was "only" a few hours long and the next two and half days consisted of sitting around.

We checked Alex's blood last Wednesday but his neutrophil count while having rebounded from basically zero, was too low at 0.50, a count of 0.75 is needed to begin the next stage.  Yesterday it was 1.1 (pretty close to normal really, all his counts were very good) and so today he has begun again.  Feeling better?  Great, let's whack you again!

The last few days have been particularly good.  Alex has been quite active, the steroid "blues" are behind us, things have almost been normal.

Today is a big long day.  We arrived at quarter to eight this morning and I think we might get out by 6 p.m. tonight.  Alex had a lumbar puncture this morning to have methotrexate injected in his spine.  That's not as bad as it probably sounds.  Actually, the kids kind of like it because the sedative/anaesthetic they get makes them quite loopy!

Following the "LP" Alex had Pentamadine, a drug that prevents a particularly nasty type of pneumonia.  This is inhaled through a ventilator over a fifteen to twenty minute period and tastes horrible.  He doesn't like it but has to have it every four weeks.  (In between he ate a sausage,egg and cheese breakfast sandwich concoction.)

He has been receiving a lot of fluid intravenously to "pre-hydrate" him for the next item on today's menu, good old Cyclophosphamide (old being the operative word, this drug's origins date back to the fifties) which can be quite hard on one's kidneys.  The pre-hydration takes two to three hours, the "cyclo" as the nurses call it, takes about 30 minutes to administer, following which he will receive post-hydration for another three or four hours.  After that, dessert is a dose of Ara-C, shorthand for a drug called Cytarabine, which is pretty quick to administer.

And then we can go home.

Alex will take another chemotherapy drug called Thioguanine orally every day for the next two weeks.

He comes back tomorrow and the next two days in a row for a shot of Ara-C each day.  He has the weekend off and then back Monday for another lumbar puncture, more Ara-C and then three more consecutive days of Ara-C.  If that all sounds pretty intense, it is.  Eight out of ten days at the hospital.  By the time he is finished all that his blood counts will be very, very low.

The great news today was his weight, checking in at 47.8 kilograms.  That's an increase of about (a much needed) 5.5 kilos in just a couple of weeks ! The nurses asked him how he did it.

Grinning ear to ear he said, "Doritos!"

Paul Attacked by Rabid Dog!

Minding my own business at the Heritage Classic hockey game in Calgary on Sunday when the beast was upon me.

I fought back and when I had hold of the brute's tongue I said "Craig McTavish says hello!" 

(At the time head coach of the Edmonton Oilers, McTavish pulled Harvey's tongue out when he felt the mascot had gone a little too far.)

HAPPY BIRTHDAY KAISEY!

For B.C. Residents:

I didn't actually find this easy, I found it a bit of a pain actually, but it is something we should all do.  It was much easier when one just signed one's driver's license.  Have your CareCard ready. (Thanks to MH for prompting me.)

From: BC Transplant [mailto:info@transplant.bc.ca]
Sent: Monday, February 14, 2011 6:43 AM
To: Paul Balfour
Subject: Organ Donor Registry Confirmation

Thank you for registering on BC's Organ Donor Registry! If there are any issues with your registration, someone from BC Transplant will contact you.  Forward this e-mail to let your friends and family know just how easy it is to register their decision on organ donation at: https://www.transplant.bc.ca/onlinereg/bcts.asp

Thank you for taking the time to make this important decision.

BC Transplant
an agency of the Provincial Health Services Authority  
1-800-663-6189 or 604-877-2240

Neil Donates Again!

For the third time since Alex was diagnosed.

Thank you, Neil!

Jail Break

We're blowing this popsicle stand.

Chowing Down ... sort of

We were finished the ultrasound yesterday at 11 a.m. and as noted it looked normal.  Alex seemed fine, a little wary that the pain might return, but his main complaint was being hungry.  His status had been changed from "NPO" to clear fluids only but a cup of chicken broth isn't very satisfying when you're starving. 

The oncology people said they wanted the surgery people to advise on whether Alex could eat or not.  They have more experience with pancreatitis as they deal with gallstones and other gall bladder conditions that can result in pancreatitis.  So we waited for one of the surgeons to come by.

And waited.

And waited.

And waited some more.

Finally at about 7 p.m. a surgeon came by.  We were by this point pretty much resigned to the fact that Alex would be on clear fluids until the morning, this would be fairly standard procedure for pancreatitis - except this didn't seem to be normal pancreatitis, Alex seemed just fine.

Happily the surgeon thought so too and advised that Alex could eat solids but to go with a low fat approach - the enzymes one's pancreas emits are in aid of breaking down and digesting fat.  This, she said was the conventional wisdom in treating pancreatitis, but that actually there was very little evidence to support it.  Really!  Low fat or not, this was great news and, after a run to Earls for some takeout, we were soon munching happily away in front of the Canucks game, some of us drinking Peroni  in a coffee cup - the Pilsner Urquell drought continues at the local shop.

We were pretty tired and shut 'er down right after the game.

This morning Alex's bloodwork came back and showed a dramatic difference in his amylase level.  "Normal" is considered to be 30 to 100 somethings per something.  Alex's was 26 when we got to Emerg on Sunday night but on Monday morning it had jumped to 200.  That isn't actually wildly high, for pancreatitis apparently, but it was a big change.  This morning it was back down to 18.  Weird, I know. (And 18, although quite below 30 according to my math, is not a concern apparently.)

The theory is that it was the Asparaginase  ("the peg") that caused the amylase level to increase, it's a known side effect albeit that he had the peg two weeks earlier.  The pain may have been due to the high level of steroids - after a while this can happen in adolescents.  Usually pain from steroids is in the joints and only after long term use.

Alex was just fine, he had handled the food very well, was still pain free and I was pretty optimistic we would be going home today.

Wrong.  They want us to stay another night.  Seems like a very cautious approach to me but ...

So, another night here.  Oh well.

I wouldn't one reading this to get the wrong impression and think we were unhappy with the care here.  We aren't.  Waiting eight hours to see a surgeon is frustrating (especially when you're hungry!)  but surgeons are busy doing ... surgery.  "What's that? Consult on possible pancreatitis? Sure.  Is he in much pain? No pain for the last twelve hours?  With no painkillers?  The ultrasound was clear?  No temperature and he seems perfectly fine?  Quite hungry, you say?  Sure, we'll put that at the top of our list and get right on it and we'll do this kidney transplant later on."

I mean, we get it.  And we get it that not everything can be explained perfectly, it comes with the territory. And we get being cautious. 

We have received great care here.  These are outstanding professionals.

But we really would just like to go home.

Head Scratching Continues

It was pushing 3 a.m. when we shut down last night, after the handover from the Emergency staff to the 2B staff was complete, bed made, my Korean War issue cot set up, etc.

Alex found it hard to fall asleep.  A main complaint at 4 a.m. was that he was too hungry to sleep.  Unfortunately, the doctors had declared him "NPO" jargon for nothing by mouth (nil per os for the Latin students, I think.)

The good news is that he was not in any pain.  The last dose of painkillers in fact was around 11:00 p.m..  Mind you he'd probably had enough to numb a horse by then.

More bloodwork early this morning and Alex's level of amylase was elevated from last night.  Amalyse is an enzyme from the pancreas and a high level can indicate pancreatitis.  So that was back on the table and an ultrasound ordered.

The results from the ultrasound appeared to be normal so back to the head scratching - what caused this incredible pain?

Alex has just completed the first 21 days of a 56 day protocol called "Delayed Intensification." It involves very heavy chemotherapy and is quite intense.  Part of it involves being on high doses of Dexamethasone, a steroid, for seven days, then off for seven days and then back on for a final seven days which we have just completed.  The steroids make one very moody, depressed even and generally exaggerate and amplify the range of one's emotions.  Apparently, another side effect, particularly in teens, particularly at the end of the steroids or near the end can be .. pain. One of the doctors had warned us this could happen, the others seem less certain.

But that is the working theory for now.  Or it's mine anyway and we seem to have eliminated just about everything else.

Alex is dozing, still pain free.  Hopefully he will soon be allowed to eat, he hasn't had anything since early yesterday afternoon.

Never a Dull Moment

From: Paul Balfour [mailto:paul.balfour@gmail.com]
Sent: Monday, February 07, 2011 2:11 AM
To: Alex's Doctors
Subject: Alex is in 2B

Room 4.

Not for mucositis. But general pain.

He did develop some sores on one side of his tongue as noted on Friday but it hasn’t seemed to get any worse.  Alex had a great Saturday, was up and quite active (for him) not too much of the dex blues.  Ate well.   Best day of the week.

Today was similar, he was in a decent mood, up and around including watching his sister’s soccer game from the car at noon.

We did some of his physio exercises before noon and Alex said he had some minor pain in his groin.  “Not like a  pulled groin” but different.  It doesn’t seem serious and he doesn’t complain about it again until about 4:30 .  Here’s what happened after that.

4:30, complains that groin is sore and heads up to room from basement where we were watching the football game.

5:00 p.m. I check on him and he seems to be in a fair bit of pain.  The pain is on both sides of the inner groin,  right where the leg meets the torso.  After a while it subsides.  I wonder if it has anything to do with him having been doing more walking than the previous number of days.  He has a hot bath which he says helps.

6:15 p.m..  Pain returns with a vengeance, he is really in huge distress. No temperature, no nausea  Just pain.   I call in and speak with the oncologist on call.  We discuss it a bit and decide that I should give him 5 mg of morphine, and see if that gives relief.  Before I give it to him, in just a few minutes, the pain spreads, first his back hurts, then shoulders then his thighs.  He has the 5 mg of morphine at 6:30. 

7 p.m. -  Morphine seems to have helped a bit but then the pain returns towards 7:20 or so.  I talk to Dr. T again and we decide to monitor things for a bit longer.  But after just a few minutes Alex is in real agony and I  get him in the car and drive to Emerg.  Still no temperature.

8:15 (? approx.) arrive at Emerg and Alex is still in a great deal of pain.  Nurse does an assessment and suddenly there’s about 3 docs and two more nurses  in the room.  Turns out his heart rate was 200 and blood pressure “Low” (I never did get the numbers) and suddenly we’re being zipped into the trauma unit.  Emerg doc M tells me he’s quite sure it’s a septic infection as he examines Alex.  T arrives a little later, not sure who everyone else was.  By the time he’s hooked up to a monitor Alex’s HR is down to 145 and BP more normal.  Still no fever.  He’s accessed and blood taken, bolus and a/b started (Vancomycin) and gets 2 mg morphine. 

9 p.m. Emerg Docs have drifted off.  Gets 4 mg more morphine by IV which seems to help pain a lot.  He looks better.  Blood work appears to all be normal.  WBCs still 0.8 like past Monday, Hgb 105, platelets 160 something, electrolytes okay.  Waiting for other blood results.  Seems like they are thinking pancreatitis.  I talk to  Tanya about the difficulties he’s had with morphine and that while I know it’s only a dose or two, 24 hours can go by pretty quickly and soon it could be 48. She talks to the pain care people about using hydromorphone (sp?) instead which they have started doing.

10 p.m. Abdominal and Chest x-rays done, pain is pretty much under control but after quite a bit (I lost track) of painkillers.  Any pain he does have seems to be primarily in the groin.

11 p.m. Surgeon visits.  X-rays look normal, liver and pancreas enzymes or whatever from the bloodwork look normal.  Prety sure not pancreatitis. She can’t see anything unusual.  Head scratcher to her. T returns and they discuss.  Alex points out pain was always symmetrical, both sides of groin, both sides of lower back, both shoulders, both thighs.

We get to 2b about 1:00 a.m. plan being to keep pain under control and reassess in the morning.

Never a dull moment.

paul

Urgent! The Ride to Conquer Cancer Closes Today!

I know, I have been a very bad, absentee blogger.  More on that tomorrow. 

This has snuck up on us but the annual Ride to Conquer Cancer, a two day bike ride from Vancouver to Seattle to raise money for the BC Cancer Foundation is closing registration at the end of business today.

If you would like to join the PH&N  Friends and Family team or Cynthia's team (name pending) please go to www.conquercancer.ca and follow the registration process.  Sign up as an individual and we'll get you transferred onto one of our teams later.

Here is an internal email I sent out that I think is self explanatory.

I'm back.  Tomorrow's entry will be "Monday is the new Wednesday."  Deep, eh?

---

From: Paul Balfour
To: All PHN Vancouver; All PHN Victoria; All PHN Calgary
Sent: Tue Feb 01 02:33:14 2011
Subject: I need your help ... Today! (We're number 8?)

Today is the last day to register to ride in the third annual Ride to Conquer Cancer, a two day bike ride from Vancouver to Seattle to raise money for research at the BC Cancer Foundation.

It costs 75 bucks to register.  If you’re not sure whether you want to ride, or whether you can ride, (we’ll revisit this point shortly) sign up anyway and if it turns out that you can’t we (me and some like-minded old PH&N Horny Goats) will reimburse your registration fee.  You don’t have a lot of time to think about this.  Don’t think.  Sign up and we’ll figure it out later.  (disclosure: this will be a pretty personal and shameless appeal, if you want to stop reading now, please do.  Seriously.)

The first year this Ride was held, it raised over $6 million for cancer research.  PH&N was the top fundraising team and I had the privilege of being the top individual fundraiser.  Last year I was thrilled that PH&N was only second – thrilled because Team Finn, with well over a hundred riders, compared to our 45,  raised more money than we did and overall, the Ride raised in excess of $9 million dollars for cancer research.  I was third in fundraising, I don’t remember who was first, but our very own Michael Borden was second.  (And we kicked Team Finn’s butt on fundraising per rider!)

I had a front seat on this event in those days and frankly I was a bit cocky.  But life can be pretty humbling sometimes.  (Anyone who invests knows that – and if they don’t, they’re about find out!)   I was on the board of the BC Cancer Foundation, vice chair in fact, I was the top fundraiser and was interviewed on the radio at a live fundraiser at the Lions Pub (now that’s fame).  I was asked to speak at the “Opening Ceremonies” the first year and at the overnight camp festivities the second year.  I felt pretty smug, I think.  I rode in honour of my late wife Pam who died from brain cancer almost six years ago now and my kids were thrilled with the success.  I thought the Board was doing great work (it was).  I was, I think, generous and sincere, in offering advice to people who were recently diagnosed with cancer or had a loved one diagnosed with cancer.  I was industrious in fundraising activities and did what I thought was the best I could to raise money and spread the word. 

I wasn’t really conscious of it at the time but I had this intrinsic belief that I had done my part, this underlying belief that I had paid my dues - and then some – an irrational belief that somehow my family and I were “protected” from cancer, I remember thinking many times, thank the gods I don’t have to do that again, that these efforts somehow afforded me some immunity.

And then, as you know, that belief set (irrational as it was when I think about it) came crashing down around my head when Alex, my son, who lost his mom when he was 7, was diagnosed with acute lymphoblastic leukemia on July 19^th, barely a month after the last year’s Ride.  I was dumbfounded.

You never know when it can happen to you.

It has been a long tough grind for Alex for many months now and he has a long way to go.  I cannot tell you how it has turned our lives upside down.  It has been really hard for him and his new extended family.

It was about noon on a hot sunny Monday in July while I waited in  a tiny foyer of the drop-in clinic I had taken Alex to the afternoon before when the blood test results came in.   I was told to get Alex to BC Children’s Hospital.  Now.  Do not pass Go, get him and take him to Emergency, now.  I had about a five minute drive home to, one, take a deep breath and, two, figure out what to tell him.

Live and learn. Telling my twelve year old son he had leukemia was hard.  So hard.  Was it the hardest thing I’ve had to do?  After Pam’s illness and death, telling the kids, her parents, I stopped playing the game of what’s the hardest thing you’ve ever done,  something worse may be coming.

Those were, and remain, hard things.

I was feeling pretty sorry for myself a while back when Alex and I had been in the hospital for 19 days straight.  The kids are there getting their chemo and a parent sleeps on a cot in the room.  That was hard.  And then I found out that the kids who had acute myeloid leukemia (not lymphoblastic which Alex has) are regularly there for a six month stretch.  You think something’s hard but inevitably something comes along that’s a lot harder.  A great chef in town here  has a daughter, now 11 or 12  I think, that spent pretty much three years in BC Children’s Hospital between the ages of  five to eight being treated for cancer.  It’s all relative I guess, better to witness that than to experience it.  I guess.  But it’s hard.  It is devastating to see what Alex has had to go through, it eats me up.

***********

Okay, you’re through the hard part!

So how hard is it to ride a bike to Seattle?  It’s not that hard.

Here are the excuses.  It’s on Father’s Day weekend and it’s wedding season and it’s summertime and there are a thousand other reasons why we’re too busy to do it, and I don’t know if I can, I’m not sure if I can get a bike, I’m really busy, I think we’re away that weekend and what about the fundraising… and…  And what?

It’s not that hard.

Riding a bike is not that hard compared to what cancer patients go through.

The way I see it, the way we are going to lick this whole cancer thing  is through research and (email me if you don’t believe me or want to know more about this) and the research being done at the BC Cancer Agency is world leading.  Literally.  BC Cancer researchers have been published in the scientific journal Nature, with ground breaking results, three times in the past year and four times in 16 months. (If you want to know if that’s significant, or how hard it is to get published in Nature, please ask my friend and colleague Dr. S B.)  We’re making huge progress here.  Residents of BC enjoy the best outcomes, significantly, in Canada.  Your dollars at work.

But they need money.  Lots of it.  This is where you come in.  As Andrew Sweeney wrote recently, if we can match what we raised last year, PH&N will have raised a million dollars for cancer research over three years.  That’s incredible.  To me, that exemplifies our corporate spirit and humbles me as much as any personal setback ever could.

Here’s the real, not so secret:  it’s fun!  Ask anyone who’s done it.  It’s rewarding, and many of us have discovered a fantastic new sport.

The Goats are highly regarded now in Vancouver cycling circles.  We’re sort of the bad ass yet nice guy cyclists.  We have an edgy name but we raised more money than any other team in the first year and were second last year but with less than half the riders of the top team.  Over two years, and I’d like to think, three, we’re clearly number one.  We have … attitude and people know, they know that PH&N has raised all this money.  And they like that!

Right now and, okay, I know we haven’t started yet (but did I mention that today is the last day to register?!) we’re number eight.  Us? Number eight?

Time doesn’t permit (and I’ll take the blame for this) a lot of campaigning to sign up people.  It’s today.  So, to remove any anxiety, if you’re not sure, sign up and if you can’t make it, we’ll reimburse you.  Worried about not raising the minimum in fund raising?  Don’t be.  Everyone has been surprised at how well this goes given a modest amount of effort.  Not sure if you will have, or can line up a bike?  Sign up anyway, we’ll figure it out, what do you have to lose?!  (Last year, for example, a kind benefactor offered to pay for people’s bike cage fee … this year, who knows?) 

It’s not that hard.

We will help you train.  Andrew S has been unwavering in his support for all riders, the novices and experienced alike.  Bang Bang  and David “The Banana”  (and many others) have always been a big help to all our Goats.  We have a Friends and Family team if your … friends or family want to join us.

Andrew and I are thrilled with all of you have returned again to ride this year or be a member of the “Crew”, the uber-volunteers who really make this happen.  And we are ecstatic (we’re really sensitive guys, you know) to welcome new Goats like Lance B H (who just had a nasty bit of kidney removed) and the brothers Andy and Frank M ( a little cycling joke).  Andrew “call me Alberto and it really was just a bad steak” M and the Badger, Doug C are coming out from Toronto.   Monty's’s sorry ass is out there for scrutiny (no need to look closely, avert your gaze) again – and he’s not busy at all.  You’re too busy?  You’re too busy? Really.

This will be a ton of fun.  Honestly.  Please, please join us if you can, or even if you think you can.

You will make a difference.

Cynthia lost her husband, Bill to cancer.  Her kids also know how hard it is to lose a parent.   Miles, the eldest at 17, now has done the Ride the last two years and Michaela, 16, is a rookie doing it this year.  Alex, Nathanial and Samantha are below the minimum age requirement (and Alex has previous commitments) but they would be on their bikes in a heartbeat if they could. 

We would all consider it a deep and profound personal favour to our family if you could join us.

www.conquercancer.ca   Follow the registration process, “join an existing team” and the password is: removed

Thanks for reading this.  Oh, and if you’re reading this and thinking, is he talking about me?  … yes I am!

paul