History

Friday, December 29, 2006 4:48 AM CST

Reveille

Will,

Outstanding send-off!

Wow. All I can say is that I want to join the RCMP before I die. And what Ray did on the Saxophone and what Mikey and Sarah did with music and slides, unbelievable.

But the Eulogy Will, that one almost didn't make it. I have to share the story with you because you would have appreciated it.

7:45 this morning the phone rings. We're still asleep and I hear Tracey say "Oh um, yes one moment please" and she handed the phone to me. It was Chaplain Turner from the RCMP. Will, the police never call me at 7:45 in the morning. The clergy never call me. But to have them both unified in one voice, you can bet I was out of bed and on my feet in a moment.

He wanted to chat about the eulogy. Asked me how long it was. I told him it was 25 minutes - I read it to the boys last night and Foster timed it. In Chaplain Turner's experience 25 minutes turns into 35 by the time you factor in the emotion and pretty soon you've lost the group and driven ceremonies over an hour, did I have a copy handy to discuss some edits for consideration?

Will, I'm buck naked standing in the dark in my bedroom. "Why yes of course, just a moment." I grabbed what I thought was underwear and ran downstairs and in no time I'm sitting in my office with your eulogy in front of me a pair socks in my hand talking to Chaplain Turner on the phone completely naked.

So we made a few cuts. Forgive me Will. Sachamo and Boston didn't make it, but all of this happened before I had any coffee.

But none of this put your eulogy at risk. It was the piper that undid me. I was doing great until the piper. Sarah said yes to the piper because you would have loved it. Then the piper made my tears flow. And there I sat wondering if I would ever be able to get up and speak.

But I did and I think we got it about right. I discussed targets with Ray and he was looking for about a 50/50 laughter tears ratio and think we nailed it. And I've never had a hundred guys in red uniforms shake my hand before so it must have been OK. I think you would have liked it.

Hope you're well.

Take care,

Steve

Friday, December 22, 2006 1:40 PM CST

A Christmas Story

When I was a kid, I don’t think I ever had my heart set exactly on a genuine Red Ryder carbine action two hundred shot lightning loader range model air rifle with a compass in the stock, but I know where Ralphie was coming from. Every other year, there was something I just had to have. We’ve asked Spencer and Foster if they would like a Red Ryder BB gun for Christmas. That’s not where their hearts are at, but there is some incredible passion around a Nintendo Wii with motion sensor controller, extra remote and Nunchuck with Need for Speed Carbon and the Legend of Zelda.

“You’ll turn your brains to mush,” I tell them. It’s the classic parent foil.

Some things never change.

And like Ralphie, Spencer and Foster are scoffers. They would never openly challenge the existence of Santa Clause because well, they wouldn’t want to take away the magic for me and Tracey, but it’s been a few years since anyone has agreed to have their picture taken sitting on anybody’s knee in a shopping mall. I was in the same place when I was somewhere around their ages. In fact, I think my brother pretty much extinguished even the faint hope of the existence of the jolly elf.

Some things do change.

As the years pass, I relate less and less to Ralphie and more and more to his dad. Of course I am no fierce furnace fighter, nor do I work in profanity like other artists work in oils or clay, but I do have my leg lamps that I put in the front window from time to time. So my perspective has changed. And a year or two ago, if questioned about Santa Clause, I would have given some slippery answer about the spirit and joy of Christmas and Santa Clause being all around us and working in mysterious ways. Some inspired transitional lie bridging joyous wonder to the vacuous teenage years.

But I don’t actually believe in that anymore. Don’t get me wrong. I’m not suggesting a more abrupt transition. I’m suggesting no transition. I did three decades of skepticism and disbelief, and now I know I was wrong.

There is a Santa Clause.

He is as real as anything else around me. No I can’t touch him or see him. Nobody can. We only see his likeness in the shopping mall. But I have seen proof. I’ve been touched by his work many times over and I have irrefutable evidence of his existence. I’m sworn to secrecy, but if you knew what I knew…

And I find a great deal of comfort knowing that there are others like me who know the real truth and haven’t been swayed by the arguments the non-believers and the skeptics. Pharcellus had it right when he wrote to Virginia. “He lives, and he lives forever. A thousand years from now, nay, ten times ten thousand years from now, he will continue to make glad the heart of childhood.”

Ah but I rant. Believe or not as you like. But don’t miss the important lesson of Christmas. As Scupper drags his butt on your carpet or the Bumphis’ hounds eat your Turkey, remember the spirit of Christmas is still inside you and you need only chop off the smiling head to find the joy of Chinese turkey.

Fa ra ra ra ra, ra ra ra ra.

Merry Christmas,

Steve, Tracey, Foster, Spencer & Scupper

Thursday, December 21, 2006 7:18 PM CST

Please have Will and Sarah and family in your thoughts and prayers today.

Wednesday, December 20, 2006 0:44 AM CST

We’re not very good liars, but we did our best. Spencer was skeptical.

We told the boys that we we’re going to a Christmas party down in Yaletown near GM Place. “You know, dad’s friends from work – where we went to a party a couple of years ago.” It wasn’t perfect, but it was good enough.

Unfortunately, when we arrived in Yaletown, there was a hockey game going on, so street parking was impossible. We had to park in the lot for GM place and pay the big bucks.

Then, I pulled our Canucks jerseys out of a bag and shared the disappointing news. There would be no party. We were going to the hockey game. Strange, but there didn’t seem to be any tears.

Spencer wanted to see the tickets. I didn’t have any tickets. There were no tickets. The instructions were to go to Gate 9. “Where are the seats, Dad?”

“Don’t get excited, they’re up in the nosebleeds,” strictly speaking I wasn’t lying.

When we arrived at Gate 9, we were ushered in to the media table. No tickets. Just VIP passes. Then it was up the elevator to Level 5 and in no time at all we were in the press box being directed to the free soft drinks, popcorn and our seats overlooking the ice. There are no programs in the press box. Instead you get the game notes -a document full of all the stats that the broadcasters use when they call the game. It was pretty cool.

At this point it seemed that a little explanation was required. We told the boys that the Canucks had seen Spencer’s slideshow and invited it us to the game. It was only a minute or two later when the people from Canucks TV dropped by to explain that they would come and get us after the first period and they would interview Foster and Spencer and then mom and dad and we would be back in time for the second period. And then they would shoot a bit of us watching the game and when it was over, we would go downstairs to meet the goalie. The cat was out of the bag.

We tried to convince Spencer that they probably meant the Minnesota goalie or maybe the Canucks backup Danny Savorin. At this point there was very little we could say that the boys actually believed.

The game was good. A close fought match. It was a low scoring game. Roberto Luongo managed to stop all but one of the shots. The interviews went well. Spencer seems to be used to being in front of a camera by now.

After the game the camera followed us downstairs. We were issued media passes to enter the player’s dressing room. Unfortunately, Tracey wasn’t allowed, but we boys went in.

The main room where the equipment hangs was pretty much empty. Only a couple of players and some media cameras setting up. A trainer gave the boys each a puck still cold from the ice. Roberto Luongo was busy doing a radio interview. When he finished he came over to say hello. He had to go and do his cool down workout, would it be OK if we just hung out for about 15 minutes or so? The boys seemed to be OK with that.

So as we waited around, various players started wandering through. Marcus Naslund stopped by for pictures and autographs on the boys’ jerseys. Matt Cooke dropped by to say hello. He complained to Foster that Fin the mascot had signed the jersey so large that there was no room left to write. As it turned there was still plenty of room. Daniel and Henrik Sedin found space. As did Matius Ohlund and Rory Fitzpatrick. Kevin Bieksa and Taylor Pyatt were only wearing towels – Tracey liked those pictures. Brendan Morrison dropped by. Spencer took his hat off to pose next to the bald Jan Bulis. Every one of the players was very gracious and generous with their time. We saw Sami Salo and even one or two players that the boys didn’t recognize. The boys didn’t seem to mind hanging out and waiting for Roberto in the least!

When Roberto came back, his mission was to take us on a tour. We wandered back in to an equipment room where they work on sticks. Roberto claimed not to really know what they do there, but he did show us a rack where he keeps his sticks. He pulled a couple out of the racks and tore off the loose tape and personally signed them for Spencer and Foster. We went out the same passage that the players go to get on the ice and we were locked out for a minute or two. All the while the TV camera followed us around. We saw the player’s lounge where they kick back and relax. Poor Alex Burrow’s had his foot up on the table with an ice bag taped on it. He waved and said hello.

Strangely, we never had a chance to say hello to Trevor Linden, one of the nicest Canucks of all time. It might be because he scored a big goal and was tied up with the media, but I think more likely it was because Spencer had insulted his singing and Trevor was avoiding him.

Eventually, we ended up back in the main dressing room where Roberto signed pucks and jerseys and posed for pictures with Spencer and Foster. It was quite amazing.

Then our camera crew interviewed Roberto on what it was like to meet Spencer. He had some nice words to say. Then they interviewed Spencer asking him what it was like to meet Roberto.

It was close to stunned silence. My chatty boys were in a state of silent shock. I was worried that they might be permanently damaged. We wandered back out to meet up with Tracey. Willie Mitchell was in our way so we gave him Sharpies to get him around the back of the boys.

I shouldn’t really have worried so much about the boys being permanently stunned. In the car on the way home, it was pretty much a cacophony. Whatever Tracey missed, she was fully briefed by the time we got home.

It was a special night. Many thanks to Roberto and the rest of the Canucks players and staff who seem to be universally nice people with hearts three sizes larger than normal!

Monday, December 18, 2006 1:31 AM CST

The short story (Spencer's version):

"One day I want to meet Roberto Luongo... apart from my cancer, you can see that I have a fantastic life."

(I had to recycle from his last story because, he is still kind of speechless.)

The long story (Steve's version) is really, really cool, but I'll have to write it another time because it's way past bedtime.

Monday, December 4, 2006 11:44 PM CST

It's My Life

If you don’t know me well, you might think that I don’t have a good life. My name is Spencer Dolling. When I was 6 years old, I was diagnosed with cancer. The cancer is called stage 4 Neuroblastoma. It is a solid tumor cancer that usually spreads to bones. It is a rare cancer. In BC, 130 kids are diagnosed with cancer each year. Only 5 kids will have stage 4 Neuroblastoma. Because it isn’t too common, not much research money goes to finding better medicines for this type of cancer.

Right now most people don’t think that my life is very good. If you were me, you would think otherwise. My life is great because I have three of the best friends in the world. My friends are Jared, Keaton and Michael and I’ve known them almost all of my life. My friends are the best because they don’t care whether I’m sick or not. They will come play hockey, video game or just chat. I go to school with Jared and Keaton at Pitt River Middle School in early French immersion. My family is also the best. I have my dad Steve, my mom Tracey, my brother Foster and Scupper my dog that is hyper. My family is the best because they all love me. Foster will never admit it, same with Scupper except he can’t talk he just barks and woofs.

I started learning bass guitar this year. Sometimes I play bass guitar with Michael. Michael plays the electric guitar and we have the same teacher. Our teacher teaches us the music we like. Me and Michael like the same music. One of my favorite groups is All American Rejects.

I have met a lot of the Vancouver Canucks. Trevor Linden and Dan Cloutier sang “Happy Birthday” to me on my 9th birthday. They aren’t the best singers, but they are great hockey players. Sometimes I get hockey tickets from the hospital. One day I want to meet Roberto Luongo.

My family has a sailboat. During the summer we go sailing. It is very fun. When we go on our boat we fish, swim and beach comb. Sometimes my dad lets us go out on the dingy to cruise around sailing or motoring. Sometimes we meet up with my friend Hadley on their boat.

I have an electric Go-Kart which is very fun. When I was first diagnosed, my uncles, John, John, and Ron (also known as the “Ohns”), built the Go-kart for me and my brother. It has cannon which shoots tennis balls. Scupper, my dog, loves to fetch balls that shoot out of the cannon. Sometimes they shoot too far, and then Scupper can’t find them, then we send Foster running down the hill to help Scupper. Sometimes, Foster, Scupper and me have races to see who can find the ball first. At one time we had water on the Go-Kart so we could shoot a water rocket or give the dog a drink .

At the hospital, I have lots of treatments. I have chemotherapy, blood transfusion, and lots of tests and scans of my body. There are great doctors, nurses and child-life specialists at the hospital. The funniest thing that happened at the hospital was when my nurse Allan, blew up a glove over his head, had medicine cups sitting on his eye sockets and was acting like a chicken.

Apart from my cancer, you can see that I have a fantastic life.

(As printed in the Globe and Mail Dec 2 - click on the link below to see John Lehmann's photo essay and hear Spencer's voice.)

Thursday, November 30, 2006 0:21 AM CST

Sucking All The Fun Out of Disneyland

Somehow we got it in our minds that we might have to vacate our house if the restoration people had to open up walls and there was any chance that Spencer might get exposed to mould. Being forced out of your family home and into a hotel is not a terribly good feeling.

We don’t like being victims.

Now if you leave the country and stay at hotel adjacent to Disneyland, you’re in control of your life and not a victim, right? That was our thinking. And pretty soon the focus was all about Disneyland and when would be the best timing between chemo rounds and one thing lead to another and schedules were guided more by child life experts and oncologists than restoration contractors. We found ourselves on a plane to California.

For Spencer, Foster, and Tracey the whole thing was pretty much pure fun. For me it came with an element of terror. Not the airplane. I’m comfortable flying around in metal objects weighing hundreds of tons travelling at 800 km/h. I once woke up on an airplane staring out the window at the strange moon-like terrain far below me wondering where we could possibly be. It took me at least two minutes to figure out that the plane had not left the ramp yet and I was staring at the concrete. I’m completely comfortable on airplanes. For me, amusement park rides are pure terror.

I survived the first day. With encouragement from Spencer and Foster I braved Space Mountain, Big Thunder Railroad, and any other ride in Disneyland that had a long line up in front of it that we could bypass with Spencer’s Guest Assistance Pass. Unfortunately, the big Swiss mountain thingy was closed for seasonal repairs. What a shame.

It was day two that held the potential for real terror. Day two was the California Adventure. Day two was the Tower of Terror and California Screamin. I thought the Tower of Terror was a haunted house. I willingly walked into the Tower of Terror. I had no idea. But California Screamin is billed as a high speed roller coaster. It has a damn loop and you go upside down. They tried to convince me to go on.

Tracey whispered something in Spencer’s ear. Soon I heard the words, “Dad, if you really love me, you’ll come on this ride.” It was unfair. But I had to go. Then I saw how the thing launched. No clickety clack chain dragging up the hill. It’s a linear induction straight shot to hell. There was no way I was going to go on that ride.

The shoulder restraints kept me from jumping out. My screams weren’t loud enough to get them to stop the car as we rolled out of the loading area.

The only problem with California Screamin was the pictures. Spencer was in the back seat and we couldn’t see his face. So we went again. Tracey had her eyes closed in the next run. So we went again. Pretty soon I was immune. Finally, we got the good picture. But they couldn’t get me to go on Maliboomer. It was strictly a matter of policy. I don’t do rides with built in barf shields. Tracey, Spencer and Foster went at least three times.

Day 3 was a relaxation day. We went to a Ducks game. You must be in Disneyland if you can get tickets the day of the game to watch the best team in the league play for less money than it costs to park at a Canucks game. Day 4 was the San Diego zoo. Day 5 was Universal Studios. Thankfully, they didn’t have any scary rides at Universal Studios. Perhaps I was truly immune by that point.

We tried to fly home on Monday. But there was a small weather problem in Vancouver. The precipitation was frozen into flakes. No planes were landing. But yesterday we made it. Spencer and Tracey rode in a fellow traveller’s limousine straight to Children’s hospital. Chemo was overdue. Jack drove me and Foster home, squealing all the way at the prospect of 6 inches of untouched snow in the yard. Foster, not me or Jack. And good people had shovelled our driveway. And others looked after Scupper. Even claiming that he hadn’t eaten anything he wasn’t supposed to. Everybody looked after us.

And the restoration people had completed six days of work at our house. They had placed exactly two pieces of green tape on a piece of crown moulding to flag it for removal.

Everybody had a great time and it was a perfect break from the rain and the hospital and dehumidifying extraction fans. I have no idea how the boys came up with the expression, “Oh Dad, that fart could suck all the fun out of Disneyland!”

Saturday, November 4, 2006 1:21 PM CST

From Russia With Love

I missed Halloween. In Yaroslavl, they don’t celebrate it. I never know when is a good time to travel so sometimes all I can do is make my best guess that things will be OK at home and go.

Monday night, Tuesday morning where I was, I received a disturbing email. Tracey meant to send it to Spencer’s teachers, but missed by one entry on the address list and it came to me:

“Serge and Stephanie,

Spencer had to start his chemo treatment today as he started experiencing quite severe pains in his legs and back last night. He asked to go to the hospital this morning and they have been able to manage his pain with morphine. Hopefully the chemo will start doing its job soon and the pain meds won’t be needed. Needless to say, he won’t be at school tomorrow or the rest of the week.

Tracey”

This wasn’t the way the week was supposed to turn out, but you make the best of it. For Spencer that meant a call to his photographer. John from the Globe and Mail is doing a photo essay on Spencer as part of a huge national feature on cancer. The plan for the day was for photos at the school in Halloween costume, instead it was photos in the clinic with IV pole. Either way is part of the real daily life of a kid with cancer.

By Tuesday afternoon, Spencer was ready for trick or treating. They cheated a little bit and Spencer had some Tylenol to knock down a fever so he could leave the clinic rather than being admitted for IV antibiotics. So it was off home where good neighbors had delivered and carved a 300 pound pumpkin. Onward to terrorize the neighborhood in full pirate regalia demanding candy.

Meanwhile back in Yaroslavl, I did what I do best. That is I pretend everything is OK and press ahead. I had business meetings. And they went well. Very well. Maybe as good as business meetings ever go. And we went out for dinner and celebration. And we drank vodka and toasted Canada’s victory over the Soviet Union in the 1972 series. And we toasted Russia’s victories over Canada in other years which I claim not to remember. And we went out and played billiards, a familiar game of eight ball and a Russian game on a larger table with all white balls and narrow pockets. And a final toast for the evening and I said goodbye to Sergei, Alexey, Roman, and Maxim, and I was alone at my hotel.

And the world was spinning a little bit. So I went out for a walk in the cold night air to clear my head. And a police car came around the corner and stopped as I crossed the street behind it. I heard words behind me in Russian which I did not understand so I kept walking.

This was a mistake.

Soon I heard very loud words behind me and I turned to see the police coming toward me with their guns. I thought it would be good to show them some identification since I could not communicate with them and went to reach for my passport.

This was a bigger mistake.

Now I had a pistol and machine gun pointed directly at me and the language was very loud. I turned around and put my hands on the railing.

This was the right thing to do.

They searched me and found my wallet and spent a fair amount of time looking through it. They asked me many questions, none of which I understood. And after five or ten minutes, there was one question which I did get, “Canada?”

“Yes, I am from Canada” I said. And they asked some other question and pointed at the hotel. “Yes, I am staying at the hotel” I said. And the language became quieter and they got back in their car.

Apparently, my haircut is a little unusual in Russia. It is more in the style of the once popular Russian mafia. So as I wander the streets alone in the early hours of the morning, I look a little more like a dangerous threat to society than a visiting foreign business man. Next time, I will wear a hat.

So Halloween had a little excitement after all. The disturbing part was that it wasn’t really disturbing. People point guns at me and shout in a language I don’t understand and it is not on the top of the list of things that I find scary.

Spencer finished off Halloween by checking into Children’s. I finished off two more days of meetings in Moscow and I said goodbye to some great people and a great country and took an early flight home.

And only 27 hours after leaving my hotel, I am here in a cot next to Spencer on the ward in 3B. It is good to be home.

Tuesday, October 24, 2006 1:03 AM CDT

Lawn Mower Update

Tracey called today wondering rhetorically if we had a spare gas cap for a lawnmower, you know, because one of the neighbours might have happened to run over their gas cap with a mower. We didn’t, but I suggested they could get by with a couple of layers of tinfoil and some rubber bands in a pinch. I haven’t looked, but Tracey is the kind of person who would give her own gas cap to a neighbour in need without a thought, and I wouldn’t be the least bit surprised to find tinfoil and rubber bands on ours.

Bone marrow biopsies really suck when the phentenol that worked so well the last time doesn’t do its job. “It isn’t working, Dad” as new holes are drilled in his hips. This one really needed some parental medication too. I do not recommend MIBG scans when you have had a bad trip. The good news is that Spencer has forgiven and hasn’t used the terms “Dr. Lucy” and “Dr. Evil” interchangeably for at least 3 days. My lawyer called today to let me know that Spencer has also dropped his suit against me for conspiracy to commit torture.

The good people at EA Sports lightened the load somewhat. Actually a lot. I do recommend day two MIBG scans when they are followed by tours of video game production studios. They have an absolute ton of really cool stuff. Recording studios, motion capture studios, sports fields, gyms, exercise equipment, coffee bars, pool tables, all the video games you could ever want to play, and really cool free stuff for kids who come to tour. Foster, Spencer, and his buddy Keaton had a blast. Spencer particularly liked the hockey stick that was signed by Marcus Naslund. Both the boys want to work there when they are older. Thanks Wendell!

Al, Sue and Hadley came up from Seattle for a visit. We had a great time. Somehow we managed to find a farm with pumpkins and a massive air cannon that shoots pumpkins at a minivan several hundred yards away. And it was nice not to have to open the bottle of ice wine with a big syringe.

And Hadley’s Gameboy was the new “DS light” version which of course was way more cool than Spencer and Foster’s ancient old style DS games. So by Sunday Spencer was busy posting for sale listings on Craigslist so he could sell the old Gameboy DS and SP versions so he could afford the latest and greatest. Foster, of course, had enough cash that he could buy it outright. I was impressed with the effort and believe in highly accelerated living so I made a cash offer so I could have a Gameboy of my own. They traded three other ones in for cash at Mostly Music and bought two ones. Now all three of us can race together on Mariokart. Sorry Hadley, the one time you were able to achieve game system superiority, it was short lived.

Friday we rushed out for family portraits by Wolfgang. I’d like to say Scupper was particularly well behaved. I’d also like to say that the bone marrow biopsies were negative and that Spencer’s scans have improved. And I would like to say that I believe that the gas cap from our mower is screwed tightly on to neighbour John’s mower.

But John has a manual push reel mower.

At least there are good furnace people out there who aren’t named Mario.

Tuesday, October 17, 2006 0:50 AM CDT

Some Projects are Bigger Than Others

Ours never started working this fall. I did my manly things and removed the panels on the front, checked the pilot light, and changed the batteries on the thermostat. For extra effect, I pulled out my multimeter put it on the continuity check setting and made some impressive beeping noises. It was all show. I don’t understand furnaces. I’m really hoping that with global warming we won’t need a furnace. Or maybe I can find a furnace guy named Mario.

The garage door needed service last week – a frayed cable. I do understand garage doors. It’s one of the few do-it-yourself jobs where you actually have a chance of killing yourself. So we have two new cables, a new set of rollers, and as an extra bonus they serviced the opener for half price. I just wanted one cable done. Three hundred and forty-seven dollars and fifteen cents. There is no name on the invoice, but I am pretty sure the guy wasn’t named Mario.

As for Mario, he finished the stonework on the bottom of our chimney. It’s a beautiful job. I don’t even know Mario’s last name or his company name, I have no written contract, have yet to see an invoice, and haven’t even paid a dime for deposit. And I have absolute confidence that we won’t go a dime over the quote. It’s just one of those trust things.

As for Spencer, he finished his PET scan, CT scan, and bone scan. Things have not improved. They are moving in the other direction. This week we follow up with a bone marrow biopsy and MIBG scans. I haven’t seen the quote yet, but it always seems to be no charge – at least in ordinary units of currency. But still we have to go back and back for rework. It’s definitely not a do-it-yourself job, but it’s otherwise a lot like garage doors.

Spencer thinks it may be a do-it-yourself job, or at least it has a heavy do-it-yourself component.

Foster was struggling with his homework the other night. “I can’t do it. I can’t do it!”

Spencer jumped in, “Yes you can. You can do anything you want. If you say you can’t, you won’t. But if you think you can, you’ll be amazed at what you can do.”

Foster thought about it for a while, “How come you haven’t cured your cancer then?”

“It’s not like that, Foster,” Spencer replied. “It’s a big project and it takes a long time.”

We’ve never met an oncologist named Mario. I think Spencer might have the right idea.

Monday, October 2, 2006 9:52 PM CDT

Who Are You and What Have You Done With Scupper?

For years I’ve been cutting him with scissors. None of the clippers that I’ve tried could penetrate the super fine, super dense woolly mat. But I got my hands on an Andis model AG2: a two speed clipper with a picture of a horse on the box. It’s like bringing a chainsaw to a bonsai trimming party. I couldn’t help myself. I couldn’t stop.

Camp is good. Being a parent volunteer was more than I imagined. I imagined a few days with my son in an idyllic setting on Gambier Island. I failed to imagine that middle school kids don’t really like hanging with their parents. And I never really thought about the 129 other kids that would come to camp. Is it just me or are kids not as smart as they used to be? If you bring stink bombs, aren’t you supposed to set them off in somebody else’s cabin? Oh well. Hug a teacher. They are way underappreciated and have more patience than your average person.

Will had his birthday while I was gone. He missed my party, so I got even. And it was special. He managed to break out of ICU for a half day and went home and hung out in his own living room with Sarah and Boston. I’m sorry I missed it. But I’ve already figured out what I’m getting Will for his birthday: a free haircut for Boston.

It’s that wonderful time of year again. Hockey season has started. We won the draw from the Starlight Children’s Foundation, and Spencer and I went to see one of the Canucks preseason games after chemo last Tuesday. How lucky can you get? Spencer once remarked to a television reporter when asked what it was like living with cancer, “Mostly it sucks, but sometimes you get free hockey tickets.”

And Tracey was right. Our dog was defective. He had a foot infection that went stinky. The vet prescribed a special foot bath twice a day and some ointment. It was like doggie spa around here. We should all be so fortunate to go to the spa twice a day when we are defective. Tracey wasn’t so fortunate. She put her back out and has been having her own visits to physioterrorists. In fact, by the time Spencer and I came home from camp, Foster was the only one in any kind of condition to carry the luggage.

Foster wouldn’t go to school today. He said his back was sore. I think anxiety causes back pain. So he went to clinic with Tracey and Spencer. I dropped in this afternoon to hang out with Spencer during his bone scan while Tracey took Foster home. Tomorrow it’s a PET scan. I know that back pain causes anxiety. At least the kind that Spencer has.

“He looks like a whippet. Kind of a short, fat, Portuguese whippet.” So says Spencer. “You should trim the rest of the hair off of his tail.”

I just look at him and ask, “Who are you and what have you done with Scupper?” I think I’ll get a couple of cucumber slices to put over his eyes and then I’ll have a go with the AG2 on the rest of his tail.

Monday, September 18, 2006 10:42 PM CDT

Mario John and the Mole

First the chimney. Mario came and took all the stones off. He is a good man. Underneath the old stones, bad wood. Mario doesn’t do wood.

So I called brother-in-law John. And my other brother-in-law John. And my neighbour John. Soon three Johns were on my roof installing 6 new sheets of three quarter inch pressure treated plywood. It was a two hour job. It took them all day. But there is enough reinforcing, bracing, and caulking to assure me that I have a 50 year chimney that can withstand two hundred kilometre per hour winds. All I did was supervise and rest my back. John is a good man. If you want to marry one of my sisters, your name better be John.

Then the car. New tires required. Costco made a valiant effort, but the nuts were so tight on the studs that they destroyed the wheel studs removing them and stopped work before the vehicle would need to be towed. They wanted me to take it to a mechanic. Last I checked, when I go to a car dealer it costs me six hundred dollars just to breathe the air in the service center. Repairs are extra. So my friend Thane suggested I call Silva Automotive. Mario answered the phone. I booked an appointment for the next day.

Mario’s place was a dump. Old tires and wrecked cars everywhere. Ten minutes after Mario’s father Joe gave me a death ride to my office, I had a phone call. The wheel studs were replaced. Thirty bucks. Would I like the oil changed? How about the front brakes that are 95% worn? I gave him the go ahead. I didn’t even the ask the price. His name was Mario. By lunch it was all ready. The oil change was cheaper than Mr. Lube and Mario didn’t give me a song and dance about needing new rotors or ABS sensors or wheel calliper overhaul. He just put on a new set of decent ceramic pads. If you’re going to work on my car, your name better be Mario.

Meanwhile the other Mario put new rocks on my chimney. It looks fantastic. I planned to do the lower chimney myself, but I don’t like to have to confess these things to my physiotherapist. I’ll have Mario do it. I don’t even have a written estimate from Mario. I trusted him the moment he walked off my roof the first time and said he couldn’t help me when I asked him to repair the old rocks. He didn’t like the look of the stone. Mario hasn’t even asked me for a deposit and he’s finished the first stage.

And then there’s Spencer. We’ve been practicing French verbs. I have no idea what the feminine singular form of the verb avoir in the passé compose is. But Spencer does. I grill him and he gets them all right in five different tenses. Tonight he was talking to a friend in Seattle troubleshooting a WiFi setup for a Nintendo DS. I can’t keep up any more.

Some good news and bad news and good news today. The good news is that the pain in Spencer’s back seems to have gone away. I might not like the pain in my back, but it doesn’t scare the hell out of me. The bad news is that his counts haven’t recovered enough to start chemo today. The good news is that they are good enough that he can go to school camp on Wednesday. I’m going as a parent volunteer. I think if we just handed Spencer over with his bag of medicines, the school would require a camp nurse, two doctors for support and one lawyer to arrange the paperwork. As it is, I’ll need at least an hour briefing and written instructions from Tracey. I am going to make Spencer carry my luggage.

I mustn’t forget Scupper. Tracey claims that he has turned stinky. I think he smells like a dog. She bathed him with no apparent change. She took him to the vet. Dr. Montgomery thinks he smells like a dog. She recommended charcoal biscuits. I hope when I turn stinky, Tracey doesn’t take me to the vet.

Oh yes and the moles. These critters were keenly aware of the force they were dealing with. Before I could even get my explosives permit approved, they packed up and moved on. No evidence of digging. No need to find a rodent control expert named Mario or John.

Wednesday, September 6, 2006 0:30 AM CDT

I know you're concerned about Spencer, but first let's talk about me. I've begun frequenting Mistress Susan’s Dungeon. It is a wonderful place to go. Some call it the Oakridge Physiotherapy Clinic. It’s strange to pay money to have somebody twist my back until it makes a popping noise. After that satisfaction, electrodes are applied and pulsating current runs through my back muscles. When that is done, it’s time for humiliation where Mistress Susan sits on a large blue ball with perfect posture lifting one foot at a time and then asks me to do the same and then watches as I wobble and nearly fall off. I like it all so much that I got my own big purple ball and I bring it with me to the office. Nobody dares tease a large bald man with a pained look on his face about his big purple ball.

Unfortunately, Mistress Susan took a couple of weeks off, so I've had a relapse. We went sailing for the last four days and I did many stupid things including messing about with anchors, pulling prawn traps, and sliding down a boat ramp and crash landing in a dingy. I must have a brain injury, not a back injury. Now my back is so sore, it pains me to sit typing this message.

It was a beautiful weekend. We met up with friends and family. But the most heart warming part was arriving back at the marina and watching my boys load all the gear into carts and pull them up ramps, flush the engine and wind up hoses with lots of energy. All I did was drive the car around and Spencer and Foster did the heavy work. I think it was only a couple of weeks ago that Spencer was in hospital getting morphine for pain. Chemotherapy is a wonderful thing. So are recreational blood transfusions.

Today was back to school. Spencer has moved up to middle school this year. The boys answered all my questions about the day's events with grunts and one word answers. So we thought all was well.

And then at bedtime, there was a meltdown. Spencer didn't want to go to school tomorrow. They're not in regular classrooms so it was a noisy assembly in the gym where Spencer couldn't hear anything so he's not really sure what he is supposed to do tomorrow. And one of the teachers hassled him about wearing his hat in the hallway.

So we're working through some issues. I asked Spencer, "How do you say, 'It's keeping my head warm, asshole' in French?" He wasn't sure so I Googled it for him. We prepared him for kids to give him a hard time in a hat free school; we never thought of the teachers. I let Spencer know that if I had to come and get him from the principal's office, I would be very proud of him. He'll never do such a thing, but it's nice to know that your dad would back you up. He was last seen smiling as he went back to bed. We'll see how it goes tomorrow.

Oh and the moles? We rented Caddyshack. I'm going to buy a rifle and some dynamite as soon as my back is better.

Life is good.

Steve

Wednesday, August 23, 2006 1:57 AM CDT

There's a Mole on My Back

It’s back to school soon. So of course that means getting school supplies. And how can you start middle school without a cell phone? Tracey’s thinking was that Spencer is more likely to want to attend school if he is confident that he can just give us a call any time if he isn’t feeling well and we can come and get him without him having to go to the office and explain himself and borrow the phone. I suppose there is some merit to the argument. If he goes during the marginal days he might have a chance of keeping his attendance at the 50% level. He got an award last year for achieving in all of his subjects while missing almost exactly half of the year.

I thought the whole notion of an eleven year old needing a cell phone was ridiculous. So I volunteered to take Spencer to the store. I helped him figure out which phone he wanted. Then I helped him download a custom screen background image thingy – he chose the “3D Biohazard” symbol which he is quite familiar with. Then we downloaded a custom ring tone – a little AC/DC. Because after all you need your emergency use only phone to be really cool. Then we signed him up for a plan that costs almost nothing, but every call is a small fortune because we know that he will never use this device for any other purpose than to call his parents when he really needs to. He will never send text messages to his friends. And at school it will always remain in his locker per school policy or he will lose it.

On Sunday I pruned a bunch of shrubbery, edged around the lawn, mowed the lawn, blew the sidewalks, and beat the children. My rationale was that the pain in my back was getting better and a bit of activity would be good for me.

Yesterday morning I left work shortly after nine. Tom was kind enough to carry my briefcase out to my car. He joked asking if I wanted him to carry my coffee cup too. I said yes please. By this point I was finally past the point of denial. I had already booked an appointment with a physiotherapist. Tracey tried to get me to do it ten days ago, but I’m stubborn. Intense pain can help change your mind.

Sue was a nice lady. I explained that I wasn’t all that familiar with physiotherapists and only had a vague notion that it was one of those honourable professions that other people were familiar with, but I had no idea what they actually do. She explained that some people refer to them as physioterrorists and told me to get on the table. Yikes! Actually, the really disturbing part was that she kept asking me if I was able to move this way or that way and would I be able to get on the table as though I was about to break. It was as though she doesn’t often see people in such bad condition. She suggested I shouldn’t really be working for a while. I’m still not sure exactly what physiotherapists do, though for sure they ask a lot of questions, do a lot of explaining, wire people up to machines with electrodes, and twist bodies in strange ways. I walked in like somebody in their nineties and walked out like someone in their early 80s so progress was good. I go again tomorrow.

And I am going to need a good back. Their seems to be a mole in our back yard. We set a few traps, but I’m going to need a full range of motion to place the dynamite and smoke bombs. Foster is keen. I think I’m going to have to rent Caddyshack for the boys and trade Scupper in for a terrier...

Saturday, August 19, 2006 1:35 AM CDT

The High Cost of Civilization

My language had deteriorated somewhat. So I thought I would do something about. I offered the boys a dollar each every time they caught me swearing during our boat trip. But there was a catch. I would deduct one dollar any time I caught them whining.

It went pretty well. I threw them a few bonus bucks loading the boat just to get the game going. But it was pretty well controlled. Not much whining either. All in all, we had moved a notch up on the civility scale.

Tracey got in the game. At least she tried as she announced, “Hey, you farted. That will cost a dollar!”.

The boys and I looked at her, mouths agape. This game wasn’t fun any more. “You can’t do that! That wasn’t part of the deal. Aboard this vessel, all farts are free! We declare Snapdragon a free farting boat.” I don’t often exert captain-like tendencies aboard the boat Tracey has sailed on since she was three years old. This was a valiant attempt. There was a chorus of support from the boys and we managed to avert near disaster.

Then the head came detached from the floorboards and required reattachment. It would prove to be a complicated operation involving cleaning, removal, drilling some holes (hopefully not all the way through the hull), inserting dowels, epoxy, caulking, drilling and lag bolting. All of it with a sore back. Normally, a job like this would require a lot of swearing. Foster was pretty sure that he and Spencer were going to be millionaires.

But they were disappointed. 2.5 hours with my head stuck in a marine toilet and nary a bad word crossed my lips. At least nothing audible in the main cabin. (I declared “shoot” and “crap” as worthless words.)

We kept a running tally. Surprisingly, no whining. Just enough swearing to allow the boys enough pocket money to go and replace a few of their lost Buzz Bomb fishing lures. Spencer kept the running total.

“Hey Dad, you owe Foster and me sixteen dollars between us,” Spencer declared one evening.

“Why you little sh#@! That’s not true. I only owe you guys fourteen dollars.”

“You do now, Dad.”

All good fun. I think the farting rule might actually be a good one to introduce in the house.

Scupper owes me eight dollars.

Thursday, August 17, 2006 11:34 PM CDT

We all live our lives with some fundamental beliefs. One which I think our family holds is that “there is no bug repellent aboard the boat”.

Now our beliefs aren’t necessarily swayed by facts. Otherwise, I can’t think of way we could have possibly accumulated fourteen bottles of bug repellent on a little boat.

It’s not much different in healthcare. This morning the system held the belief that Spencer should be incarcerated in solitary confinement, pardon me “remain admitted in respiratory isolation” until at least Saturday. Tracey held the belief that he should be released today.

There is nothing wrong with different folks holding different beliefs except of course when those beliefs are in conflict and one’s interests are impaired.

Now of course in the medical world, beliefs like to be based on facts. They were worried about his urea and creatin levels and wanted to keep him in so they can monitor him and keep him hydrated.

Tracey went down to clinic and had a little chit chat about where his levels were at in his last rounds of outpatient chemo. Turns out that they were about where they were at now. But they don’t make a case to admit him from the clinic. Occasionally they keep him around for an extra half hour of hydration.

One set of facts – two different beliefs all within one hospital. So rather than try to reconcile the different upstairs downstairs medical beliefs, the system held to a higher order belief that has served them well over the years: “don’t mess with a determined mother who knows what she is talking about.”

Of course, the foolproof method is to ask Spencer. He believed it was time to go home. And so it was. Nice to have everybody home.

I wonder what Scupper believes?

Thursday, August 17, 2006 1:18 AM CDT

Really it was all about idiot prevention. Not that you can prevent idiots. You just like to keep them distant from your personal space.

So we went to the fireworks. And we did it in style on the boat. There is something really special about a dark night and watching the fireworks competition over the water with the city in the background. There is something really special about loading up hundreds of boats with thousands of people almost none of whom ever navigate at night and stuffing them into a small bay. Fortunately, I often come back from the pub on Bowen Island well after dark, so I am quite experienced at navigating at night.

So I had my little foghorn and I decided to keep it in my pocket. That way if an idiot decided that he had the right of way over my anchored vessel I could whip it out and give five loud blasts and hopefully confuse him enough that he would back off the throttle before slicing Snapdragon in two. That was my plan anyway.

Then I ducked below to retrieve the flopper stopper and see if I could stiffen things up a bit in the slop. As I leaned into the locker, I felt this burning cold sensation on my belly. Turns out the little foghorn was upside down and discharged its liquid into my pocket. Glad it was my coat pocket and not my shorts or things might have been beyond the ability of any flopper stopper to ever correct.

Then after I read the fine print to see what chemical might be burning me and it says never to turn it upside down and never to put it in your pocket. Idiots are all around us – sometimes cohabitating intimately in our personal space. But the burns will heal.

Now as for Spencer, it turns out his pneumonia is not all it was cracked up to be. Most people who bring two coughing lozenge sucking kids home from camp would assume that they have colds. But it doesn’t work that way in our family. We like to split them up into an experimental group and control group and see what’s what. So Foster was in the control group. Spencer was hospitalized and put on no less than three antibiotics – a mix of oral and IV. The crackling in his chest is gone now. He has a small cough. Nothing on the chest x-ray. The conclusion? He probably has a cold not pneumonia. And Foster well he received the best treatment there is for a cold.

The leg thing is a bit more ominous. Spencer had a bone scan yesterday. The good news is that no new bits are lighting up. The bad news is that the bit in his hip / pelvis is quite a lot worse. That’s the likely explanation for the leg pain. Maybe the fever too. They want to schedule an MIBG scan and have a look at the soft tissue side of things.

Yesterday, Spencer started chemo. Now he is back to managing pain with ibuprofen and no more morphine. Which is a relief. Except of course that I never mentioned that he was on morphine for pain control so if you are just learning about it now, then you are probably not relieved. So he’s feeling good. They might even discharge him tomorrow.

Spencer did take time out on Monday to dedicate the new outpatient clinic at the hospital.

Sunday, August 13, 2006 2:09 PM CDT

We picked the boys up from camp last weekend and then went away on the boat for the week. It was a good time. Some nice sailing under spinnaker, a 12 pound salmon, good friends at Otter Bay, and swimming in Pirates Cove. Oh yes and Foster caught half a fish. No idea what ate the other half.

Some disturbing things. I have serious back pain and frostbite on my belly. But more disturbing was leg pain for Spencer that got worse over the course of the week and brought us back a day earlier than planned. It was hard to keep the pain under control and hard for Spencer to walk. That and a cough he has had since camp which didn’t go away. Well last night he spiked a fever and that sent him off to Children’s. The cough turns out to be pneumonia. And the leg pain? Just plain scary with x-rays to follow. Spencer has been admitted and we’ll see how things go over the next couple of days.

Otherwise, summer is going well.

Friday, July 28, 2006 0:45 AM CDT

The Mac

When your firm’s best business partner calls, you do what they ask. If it means that you have to be away from your family, you do it. Sacrifice the weekend? Absolutely. Travel 1600 miles to get there? Of course. It’s all about working towards mutual success and doing what is right for the relationship. Such is my level of commitment to my company and our partner.

And would I take it a step further? Without question. Drive a boat with a long metallic stick into a storm with lightning all around? The only question is “what heading?” And as the wind clocked around seven hundred and twenty degrees and the rain came down so hard that I had to shut my eyes and steer the boat by feel alone, did I wonder what I was doing there? Not for a moment.

I am a company man.

After all, we had jumper cables running from the shrouds to the water so there was a good chance that a lightning strike wouldn’t blow holes through the hull. Two and half inches of rain in twenty minutes and I think most of it went straight down my neck and into in my underwear. Happy to make the sacrifice. Didn’t flinch as a boat ten feet longer rounded up in front of us and was knocked flat as we surfed waves in thirty knot winds. Just doing what had to be done. A couple of days on a few hours sleep. And proudly, I donated small portions of my liver to the cause – mostly Heineken with a touch of Mount Gay.

Some would call it the “Mac” – a 333 mile race up Lake Michigan. For me, it was just another business meeting.

That’s my story and I’m sticking to it. Please don’t tell my boss anything different.

Of course, the good crew of Outrageous know the real truth, but they are all sworn to secrecy. They will never tell how much fun it is or how much it reminds you that you are really alive. They can never explain what it means to sail in a perfect winds under spinnaker at ten knots on a moonless night with countless meteors. Their story among other sailors will be a little different than mine. They will mention things about sailing into a big windless hole in the middle of the lake or missing the breeze on the Michigan shore and not finishing where they wanted to. But they’re sailors every one. And damn good people.

There to win? Of course. But mostly to live life as should be lived. And so it was.

Wednesday, July 12, 2006 0:21 AM CDT

The Full Wag

I haven’t updated in a while. Sometimes things move more quickly than my fingers can keep up with. Let’s see...

Sometime last week Tracey, Spencer, and Foster were interviewed by three television networks and actually appeared on national TV. They were hanging out with Brandon Schupp at a local climbing center. Brandon is a kid who wants to raise about a million dollars for childhood cancer inspired by his 4 year old neighbour who was diagnosed with neuroblastoma. So the boys were there climbing with him in front of the TV cameras. Pretty cool. www.brandonsdream.com

Sailing on the weekend? At least 80 fish were hooked. All released except for a string of perch that were bait for the crab trap. 2 fresh Dungeness crabs and the spinnaker flew. Life is good.

What else? Somebody else had a dream of emptying our chequing account so they stole Tracey’s identity and made it so. Not quite as inspiring, but clever nonetheless. I think the moral of the story is that you should never send a cheque in the mail (that’s how they got a hold of one of ours). Of course you would be foolish to transact any business online. Maybe the smart thing to do would be to carry around large amounts of cash? Hmmm. I actually have no idea what the moral of the story is. But whatever you do, wear a condom and you’ll be safer!

Today, the boys were invited to hang out at the National Hockey League Players Association Golf Classic up at Whistler. The NHL players raise money for Ronald Macdonald House and other good things through the tournament. Some nice people from Power to Be (www.powertobe.ca) invited us out.

I’d like to say that my boys are inspired to do good in these charitable appearances that they seem to be involved in. But generally speaking, they have other motivations for participating. In this case, hanging out and meeting professional hockey players was their objective. And it worked out rather well. They just parked in the Power To Be tent on the 16th hole of a beautiful golf course and every 10 minutes or so 4 hockey players would roll up in carts and sign autographs and pose for pictures. Spencer had a hat for Will that he made every player sign as well.

It was kind of fun to watch. The boys had no idea who was getting out of the golf carts. They just approached the golfers and gave them little cards entitling them to a free Big Mac (because after all multimillion dollar salaries don’t go as far as they used to). Hockey players in the group would see signatures on their hats and make gestures for pens to start signing. Hangers on would take a step back. Signatures were obtained; photos were taken. Then the boys would regroup and try and figure out if they knew who had just made the illegible scrawl. If they still couldn’t figure it out, Spencer’s friend, Jared the Brave, was sent back to ask the player who he was and what team he played for.

I have to say to my amazement, every one of the players they met was incredibly gracious and generous with their time. My favourite was Caesar Maniago an old time goalie extraordinaire who was keenly aware that the younger kids had absolutely no idea who he was but left a great impression in any case. Though I think the boys were more excited about younger goalies like Marty Turco. It was all good fun.

And Scupper’s tail is doing the full way once again!

That’s all for now.

Steve

PS: When being interviewed on TV, Spencer was asked what it is like to have cancer. His response, "Mostly it sucks, but sometimes you get free hockey tickets."

Tuesday, July 4, 2006 10:40 PM CDT

A Good Weekend

Right now the suspicion is cast on me. After all, I am the only one that went anywhere near it with a sharp object. So the assumption is that I am the one that did the damage. Now it doesn’t work. It just hangs there and one of our primary sources of joy is gone.

Scupper’s tail wags no more.

It seems permanently clamped between his legs. My guess is that I just trimmed his butt hairs a little short and he is embarrassed to wag his tail and be “naked”. But it could be something worse. If it doesn’t start wagging by tomorrow, it will be off to the vet. I swear I didn’t do it. My guess is Tracey took Scupper for a run then loaded him in the back of the truck and slammed the hatch on his tail. But she’s not talking.

Anyway, it was a good weekend, mostly. Friday, I let the boys know that one of Spencer’s friends from 3B lost his battle with cancer.

Saturday, we sent David Visschedyk off on his ride across Canada to raise money for the James Fund for neuroblastoma research. It was small send off on the shores of Vanier park with a few media types. The organizers had me all prepped to talk to the TV people. But they didn’t want to talk to me. After all, Spencer is eleven. He did all the talking and made the news at six and eleven. He’s twice the spokesman that I could ever be.

Then it was back home for Canada day celebrations. Spencer and Foster set up an impromptu lemonade stand to exploit the crowds on the way to the park. It seems mostly they bussed people there this year and street traffic was down. I think the boys raised about $20 for the “oncology department at childeren’s hospital” before they lost interest. They owe me $2 for lemonade mix, $5 for party ice, $4.50 for gas, and $3 to rent the patch of lawn. Once they pay that, they will understand what “proceeds” really are.

Then it was the big night of fireworks in the park, followed by a sleepover with friends in a tent, followed by an interesting educational experience where a loud party across the street got out of hand and a girl who was rather upset about her bottle-throwing boyfriend being arrested and her own handcuffs being a little tight, used many colourful phrases that the boys had never heard before to describe exactly what she thought of the police officers. We moved the sleepover inside.

Foster lost the second of his two front teeth. So he has regained facial symmetry, but is utterly lost when it comes to corn on the cob. If the tooth fairy can ever find out where he is sleeping, I’m sure the toonie will catch up with him.

Yesterday, I went to visit Will, but he wasn’t up to visitors. In the afternoon, a lovely time swimming and barbequing at Uncle Vicki’s and Auntie John’s. And somewhere over the course of the weekend, I rode my bike about 75 km in a few laps around the Poco trail. Scupper, if I had a tail, I would be right there with you buddy.

So it was a good weekend. Or at least that’s the lie we tell ourselves. But we tell it so often, we can’t tell when we are lying. And that’s how we keep living. But our thoughts are with you Jesstin. And your family. Keep up the good humour, wherever you are. And forgive us for not pausing to reflect. We’ll do that one day. One day when we are not terribly afraid that we won’t be able to get going again after the pause.

Gotta run,

Steve

Thursday, June 29, 2006 0:57 AM CDT

Dear Kilmer:

OK. Kind of a ridiculous salutation because Kilmer isn’t really a person to whom you can address a letter, but we can’t really name anybody in particular or possibly name everyone responsible. Maybe we’ll go with “All the Good People of Kilmer”. That’s better.

Today, Spencer “graduates” from elementary school. It’s been a relatively eventful 6 years at Kilmer for Spencer. And Kilmer is a very special place.

How do you create an environment where a kid can feel like he belongs? Where he can be understood? Where he can be challenged and rewarded? Where he can be a unique person? Where he can just be another kid among kids? Where he can feel safe? Where he can have a voice? Where he can be listened to? Where he can have fun? Where he can contribute and have a sense of worth? Where he can understand boundaries and respect his role in the world around him? Oh yes, and the whole learning thing that schools do.

It comes from you: dedicated talented people who really care. Who respect the kids and the families, who work hard to communicate with one another and realize that it’s not really about putting in your hours and taking home a pay cheque. That it is really more about giving a damn and recognizing that you can make a difference in the life of a child. And that every little thing you do has an impact and sometimes that can last a lifetime. Sometimes it even sustains life itself.

So thank you. Thank you for giving a damn and doing what you do. Thank you for making a difference for Spencer. And the nice thing is that you haven’t done what you do just for Spencer, but you do it for all the kids. That’s what makes Kilmer special.

Please keep up the good work. We have big plans for Foster too.

Sincerely,

Steve & Tracey Dolling

PS: Didn’t want to single any individual out, but Monsieur Beaulieu, you alone understand the connection between toilet repair and the Dark Side of the Moon.

Monday, June 26, 2006 11:58 PM CDT

Ah Summer is Here

We spent the weekend in faraway places like Plumpers Cove on Keats Island and Port Graves on Gambier Island. The boys were fairly adamant that they didn't want to go to Gambier Island having never been there.

Then they discovered log booms.

Now I'm not sure we'll ever get them back to Keats.

This early in the season, we didn't even bring swim suits for us adults. The temperature got so warm, that didn't seem to stop us from jumping in.

All I can say is that I hope the sale of large SUVs continues unabated. I'm all for global warming if these are the only consequences.

Last week of school before summer vacation. Spencer has elected to have chemo instead...

Friday, June 16, 2006 0:49 AM CDT

On Strength and Courage

On March 3rd Will didn’t show up for my birthday party. On March 4th he cancelled our squash game and I drove him home from the ER. By March 5th he was back in the hospital. And for the last 15 weeks he’s been there. Actually, mostly he has been in the ICU. His meals come in an IV bag and a machine does his breathing for him through a tracheotomy tube.

Tonight, his wife Sarah called. It was an eventful day. We had a long chat. I went back outside to share the news with Spencer as he glued together the timber twig structure for the scaled down version of the Iroquois long house.

“I talked to Sarah. They took Will to VGH today and he went to see a specialist for Myastinia Gravis. They did a bunch of tests and they think they have figured out what is wrong with him.” I said.

“Oh. What’s wrong with him?”, Spencer asked.

“Well it’s not Myastinia Gravis. They think it’s something else: either myastitus, or polymyastitus, or dermomyastitus or somethingorother. They’re going to do a muscle biopsy to be sure exactly what. But it’s quite rare and it’s caused by his Thymoma, and it’s quite cureable.”

“Oh. Well that’s good. What’s his thymoma?” Spencer asked.

When I was a eleven, I think people were sick, and if they were really sick they were in the hospital, but that was about all I knew. Spencer is a little more medically sophisticated than your average kid. “Thymoma is his cancer. Will is a little bit freaked about having more chemotherapy.”

“Why?”

A good question. I stood there kind of silent. Spencer has had more chemotherapy than anyone I know of. Why indeed would anybody be freaked out about chemotherapy? This is a kid who went to visit a friend on 3B last week knowing full well it might be his last visit. He has faced life events and treatments that make chemo seem like nothing. I didn’t have an answer for him.

“What kind of chemo?” he asked.

“Cyclophosphamide,” I explained.

“Cyclo? That’s nothing. You can’t even feel it. It’s not like they are giving him cysplatinum or it’s ugly sister, ahh…”

“Carboplatinum?” I prompted.

“Ya, carbo! It’s no big deal!”

No big deal indeed.

I’d like to think that I could view the world so simply through the eyes of an eleven year old boy. But there is nothing simple about Spencer’s view of the world. He sees it all in ways that the rest of us can’t imagine.

Instead, I would just like to have his courage.

Yes. I would take Spencer’s courage or Will’s strength any day.

Go Will! Go! I’m going to book a squash court.

Wednesday, June 14, 2006 11:52 PM CDT

Spencer Went to Camp

Spencer went to camp.

Spencer had fun. Spencer felt not well.

Tracey went to camp.

Spencer and Tracey came home from camp and slept at home.

Spencer and Tracey and Scupper went back to camp the next day.

52 kids threw a tennis ball all day long. Scupper ran after it.

Over and over again.

Foster and Steve went to camp for family campfire night.

Steve bumped Scupper with his elbow. Scupper fell over and didn’t get up again.

Foster and Steve and Scupper came home. Tracey and Spencer stayed over.

Scupper slept and slept and threw up a bunch of grass and slept again.

Spencer had fun.

Tracey and Spencer came home.

Camp was a richly rewarding experience. I think. But I wasn’t really there except for the campfire, but not really because capture the flag didn’t end till really late so Foster and I had to go home before the campfire. Except that there wasn’t room in Lonnie’s car for Scupper. So I came home with Jack and Donna and Lance and Scupper. And Foster ended up staying for the campfire, and coming home later with Lonnie. Which was kind of weird because why did I come home earlier with no kid to tuck in?

Camp was confusing.

It wasn’t like that when I was kid.

When I was a kid I didn’t go to camp. Because camp was for the seventh graders. And then we moved and camp was for the sixth graders at the new school and I was grade 7. So I never got to go. Imagine if we had moved the other way. I could have gone twice. But I did go to girl guide camp. Even though I was a boy. But that’s another story. I turned out OK. And I know how to cook sausages on a twig stove made from a coffee can. Which is rather a useless skill since coffee doesn’t come in cans much any more. Mostly you just buy it at Starbucks and pay 4 bucks for it and they don’t call it coffee any more.

And the doctor called today. And Spencer’s bone scan turned out OK. His disease is stable since last December. Which is good news. But I wasn’t worried. You can tell when I am worried because I don’t write coherently.

Friday, June 9, 2006 1:29 AM CDT

I Have Become Comfortably Numb

I used to be a big Pink Floyd fan. I mean they weren’t Led Zeppelin, but they were a good band. And then somehow trending towards middle age, the world became Sarah McLachlan and Diana Krall with some residual Mark Knopfler. Less Sultans of Swing and more Sailing to Philadelphia.

But not tonight. To and from my in laws place to install the new toilet, it was The Wall and Dark Side of the Moon as loud as the little stereo in Tracey’s Harvest Moon Beige VW could crank it. Practically spiritual.

And there is nothing quite like fitting a tank and pressing a new wax ring onto a pristine bowl to cleanse the mind of scan day. And nothing like pulling the old bowl and scraping the old wax ring to remind you that there is a lot of shit in life. Such was the day.

I was actually supposed to be in Russia today. But I didn’t go. As Spencer was hobbling around last week and they scheduled a bone scan, I decided to stay home. And a good man went to Russia without me and did good things. And Spencer watched Men in Black II as I played Spider Solitaire on my laptop. And Tracey comforted a friend up on 3B who is having a day and a week and a month as bad as anything you can imagine. In relative terms, I was having a picnic in the park as cameras drifted over top of Spencer highlighting those suspicious bits in pelvis and spine where ugly things are clearly visible and the only question is, “Are they much worse than they were last December?”

I thought I knew the answer last week without needing a scan. And then the pain went away, the bicycle came out and Spencer was back in school. We’ve been encouraging Spencer to pursue a new activity since it’s tough to maintain a regular schedule in team sports. The dialogue took weeks, but went something like this:

“Tae Kwon Do?”

“No!”

“Guitar lessons?”

“No”.

Tracey suggested bass guitar because girls really seem to go for bass players.

“OK.”

So neighbour Andrew, himself a cool bass player and engineering student, helped Spencer pick out a bass guitar to rent and gave him his first lesson on Tuesday. Very cool.

And next week Spencer is off to camp with the school. So what if platelets are 40 and ANC is 0.6? We can stop at the drive thru for a recreational transfusion on Sunday, and you can’t live life in a bubble.

It turns out the new toilet doesn’t leak and it sounds like there are going to be many trips to Russia in the future and Junior high is only a few months away with more school camping in September.

Life has become Comfortably Numb. And every now and then you forget that the volume is cranked up full just as Time falls out of the Dark Side of the Moon shuffle. Pay attention or you’ll crash the car.

Steve

Saturday, May 27, 2006 0:57 AM CDT

Beware the White Bun

The string is tied to a pop can. From there, two more pop cans are tied on. The weight of the first will drag the second two off of the kitchen counter. Once three pop cans are in motion, kinetic energy is your friend. From there it escalates. Next on the string is drain plug from the kitchen sink followed by a stainless steel beater. Not a light weight one, but the heavy Kitchen Aid kind. It tows along its friend which is a 16 oz stainless steel travel mug. When all of that is in motion with gravity pulling down the cascade, you have enough energy for something really significant. It’s a lot like a nuclear bomb. You can’t just light a match, you have to direct some serious energy at the core.

The core is my friend: the 52 ounce Bubba Keg. The ultimate payload.

Of course you also need a trigger. That’s where the fluffy white bun from Cobb’s bread comes in. Just barely overlapping the edge of the counter, the bun is tied to the first pop can that starts the chain reaction. This is no recreational weapon system. It’s a serious deterrent. This weapon system is directed at an enemy.

I was away in Dallas the first half of this week. While I was gone, I heard some disturbing telephone reports. Foremost of which was that Spencer was experiencing leg pains. So much so that he has been rolling in and out of clinic for chemo on a wheelchair rather than walking. The only wheels he was using before I left were on his bike.

The other news was that Scupper was doing a little self service lifting the lid off a pizza box and extracting a slice for personal gain. Now there are really smart people looking after the leg pains and mild fevers. It was up to us to fix this problem. We’ve lost interest in trials. We are now looking for judge, jury, conviction, sentencing, and punishment in three and half seconds or less.

So we closed the kitchen doors locking the enemy out of the battlefield and rigged up the apparatus described. Spencer lined up the video camera. We performed a test operation and armed the system. Then we opened the kitchen doors and headed up stairs to tuck the boys into bed with the video running. We put a gate across the stairs so Scupper couldn’t follow. We all waited for the crash while we were reading stories. Hell was poised to rain down on Scuppers head.

But there was no crash. Just sleepy boys. Later, Tracey reviewed the video tape. There was one shot of him raising his nose up to sniff the bun and then somehow he walked away. “He’s a smart dog,” Tracey told me, “I think he may be smarter than you.” For a moment, I felt a sense of pride in my clever dog. Unfortunately, it wasn’t till after Tracey left the room that I worked through the other interpretation of her comment. She might be right.

Then at two o’clock in the morning, as I slept soundly, Tracey heard a great crash in the kitchen. Next the sound of little feet running back upstairs. She found Scupper on Spencer’s bed trying to look sleepy as though he had no idea what the noise could be. Guilty on two counts.

Today at clinic, more chemo. More wheelchairs. Mild fevers and general malaise. They didn’t let Spencer come home tonight. I’m sure Scupper would be willing to keep his bed warm. Chemo finishes tomorrow.

Beware the white bun. There could be a Bubba Keg pointed at your head.

Tuesday, May 16, 2006 0:27 AM CDT

Survivor Eleven - Citadel Island

First, let’s start with the party. There were tribal council meetings with torches. There was the North Island and the South Island where our back yard and front yard used to be. There was the Blue Tiger Tribe and the Flames Tribe with seven boys each.

Shelters were built, points awarded. Only seven of ten lizards were recovered as the tribes scoured the neighbourhood following the riddles and compass directions on the scavenger hunt. Valuable life skills were learned as marbles launched from slingshots shattered ceramic tiles. More points more tribal council meetings. And some kind of strange dress up relay ritual where ten and eleven year old boys donned rubber boots, hats, shirts and bras. They learned how to take them off quickly. More valuable life skills.

And finally some strange final challenge with toilet plungers. The last torch was extinguished and one team was awarded the Tiki Tiki idol.

And strangely, the most popular part of the whole party seemed to come after the cake and the gifts where the uncut tape was rolled for all to see the episode. Parents came to pick up their tribe members and all stayed to watch to the end.

Though nobody was voted off the Island, I must say that Scupper better pray for immunity going into the next tribal council meeting. I’ll be looking to have his torch snuffed.

Perhaps I should back up a bit.

Today, Spencer was not well. Chills and mild fever. Tracey took him to the lab for bloodwork, and while they were out, a loaf of bread snuck out of the basket on the counter and found its way into Scupper’s belly. (I think he learned this one when he stayed with Lauren.) Anyway I was called home, as Spencer and Tracey made preparations to go to Children’s when the fever went over the 38.5 mark. I picked Foster and his buddy Zach up from daycare, fed them and we went to Foster’s ball game. 2 at bats, 2 hits one run and one RBI. Good fun.

But Scupper? Not good fun. I wasn’t in the mood to take him with us to the ballpark. And out of good luck or sheer brilliance on my part, I locked him in his crate. For when we came home, the smell was overpowering. Scupper was designed to eat dog food. Anything else is a gastrointestinal nightmare. And so it was.

I took him outside and hosed him off and gave him a good rub down with the towel. Though it wasn’t pleasant, I was quite smug as I pressure washed his crate, thinking about how bad it might have been if I had left him with free range inside the house. And I’m sure it wasn’t pleasant for Scupper either. Losing control in your crate is totally uncool in the dog world. And when he poops he likes to have the nice squishy texture of the grass as he stomps his back feet on the ground working his way around in a big arc. Perhaps too much detail.

Meanwhile at Children’s, Spencer was having a bad reaction to some IV antibiotics. His night hasn’t been the peak of pleasantness. Benadryl was ordered.

And as I came back in the house, I was a little disturbed that the smell was undiminished. It was a little strange. I quickly became yet more disturbed. No sign of Scupper. He wasn’t guarding over Foster in bathroom while he showered. Then it hit me that perhaps Scupper was suffering more distress.

I called him. He didn’t come. Where could he be? Perhaps in the living room, one of the few places in the house where you might find that lovely squishy texture that feels so good under your feet when all is not well in your gut?

The great circular arc of indescribable splatter told that tale. That and Scupper cowering in the corner. A full roll of paper towels, several buckets of hot soapy water, six doggy towels, and some deft work with the Shop Vac put things in order.

Meanwhile, back at Children’s, the Tylenol and antibiotics don’t seem to be controlling the fever. Tracey and Spencer are getting ready to settle in there for the night. I have breadless sandwiches to make for lunch, a Shop Vac to empty, and of course the big decision to make: Where will Scupper sleep tonight?

Ah, I’m even willing to grant the beast immunity. As long as I can have my tribe back together to light the torches.

Saturday, May 13, 2006 1:22 AM CDT

Happy Birthday!

It’s Spencer’s birthday today. An important day by any measure. You only turn eleven once. It involved all the important things. An aluminum frame, front and rear shocks, 3 sprockets on the front and seven on the back. The man at the bike shop was adamant that the way to go was with 26 inch wheels and 13 inch frame. That way it will last till he’s 18.

The man at the bike shop can see further ahead than me. We went with 24” wheels. That bike fits him better today. I’ll like nothing better than to have to piss away a bunch more money when he’s fourteen to upsize to a bigger bike. I can live with that.

But the big day is actually tomorrow. 14 boys. Torches. Tribal council. Immunity challenges.

I keep thinking Lord of the Flies.

But Tracey has a bigger plan. I like the notion of a Survivor party. But then I kind of like double meanings with something fun on the surface and something deeper just below.

Happy Birthday Spencer!

Tuesday, May 9, 2006 1:13 AM CDT

The Lists

I found it a little disturbing. In our office there is a whiteboard, and on the whiteboard, I found the lists. There was a “Tracey Do List” and a “Honey Do List”.

There is nothing really wrong about lists in and of themselves. Let’s face it our brains are overloaded and we need some triggers for our memories. So the lists were an OK idea.

I don’t mind that Tracey listed things for me to do that we hadn’t discussed.

I can’t really complain about the amount of work. On Tracey’s list there are 14 items. On mine, only 5.

And I didn’t feel any guilt that she has three times the number of things to do.

And I don’t mind that she already has 8 things crossed off of her list and I’ve only done 1.

No there is just something about the content of my list that leaves me squirming. Here is my list:

- CD’s
- Soffits
- Power wash patio
- Steve Dentist
- Vasectomy

So guess which one I’ve done?

That’s right. The patio looks good.

The soffits haven’t fallen down again, they just rattle a bit in a big wind. I’ve never even had a cavity; I don’t know why I would need to go to the dentist. I guess I better put away the big pile of CDs that I ripped and then my list is substantially complete. Would it be OK to erase the whiteboard now?

Tuesday, May 2, 2006 0:20 AM CDT

Miscellania

On the way back from Seattle airport, we had to stop at the mall in Bellingham to go shopping. I had to replace the watch that was ripped off my wrist while jumping into Cenote Azul, but the main reason we were at the mall was to buy cheap American Heelys. I guess they can be had in Canada, but apparently they are overpriced. Every ten year old knows that.

I was not entirely clear why wheels are required on the back of shoes, but once I saw Spencer cruising in full glide with an IV pole, I immediately understood. What I don’t understand is how Foster’s feet grew to a size six and he is still only seven years old.

Spencer and his buddy Jared both turn eleven in a couple of weeks. We’re having one big party. Spencer designed the invitations. Tonight, we scanned them, printed them, burned the edges with a blowtorch, and dipped them in tea. It will be a “Survivor” party. I guess the party ends when the second to last kid gets voted off the island? We’ll have to trust Tracey to come up with a kinder, gentler tribal council. I’ll work on the torture... I mean torches.

We had Snapdragon out yesterday for the first sail of the year. Sunshine, wind, water, fishing rods, wet dog and all that terrible stuff. It was a nice balance for having to go to see the Harlem Globetrotters from a VIP box on Saturday night.

Sometimes we forget that life is supposed to be miserable.

Today was back to school for Spencer. At least for a couple of hours. Still ramping up after his chemo finished on Saturday. Thank goodness it was nothing like how one of Spencer’s favourite nurses, Alan describes it, “Feeling like the bottom is falling out of your world? Have some more irenotecan and it will feel like the world is falling out of your bottom.”

And good news on Will. He is definitely regaining strength. When I saw him today they were getting ready to sling him into a chair, hook up the portable ventilator and wheel him out of the ICU for a few minutes of fresh air and sunshine. His first taste of freedom in a couple of months. Sarah credits the turnaround to a visit from his dog Boston, I think it might be because I threatened to book a squash court, but maybe it was some words of encouragement from a courageous ten year old? Or maybe we just all have inside of us more strength than we can possibly imagine?

That would certainly explain a lot of things.

Friday, April 28, 2006 1:26 AM CDT

Back to Reality

It was one of those unbelievable vacations. Entirely about fun, friends, and family. It seemed we were always busy doing something: snorkelling, swimming, jumping off cliffs at the cenotes, catching huge baraccudas, swimming underground cave rivers, sailing, or scuba diving in the pool. There were long moments of contemplation lying in the shade at the beach taking long cold pulls on the straw out of my 52 oz Bubba Keg, Senor Bubba as he came to be known, and contemplating really important questions like, “Why is the beach sand of an entirely uniform particle size devoid of fine silt and coarse gravel?” Enough to make you want to have another sip from Senor Bubba.

Spencer’s buddy Jared was there with his family. The boys were of an age where they could tear around the resort independently and have tons of fun. Uncle John and Auntie Vicki were there with Nicole and Julia and so there were little cousins to entertain and even babysit on one evening. There were frogs and geckos to catch. Iguanas and mystery animals. Afternoon naps. Fabulous dinners.

I had a Blackberry to keep me in touch with the real world, but after a few days of checking in on complicated business and technical stuff, I decided that the real world wasn’t really real and more or less ignored all the emails.

But of course vacations can’t last forever. We did have to come home. Not all bad. There was Scupper to come back to.

Foster went back to school. Spencer waved at the school and got back to his routine – chemotherapy. I returned to work.

They were nice at work. There were colleagues in town which triggered an afternoon on Curtis’ sailboat. A nice transition back to the work environment. I offered rides for folks after the sail and four large men climbed into Tracey’s Harvest Moon Beige convertible. As we left the parking lot, I remarked to Curtis, another handsome bald man like me, “You know this car isn’t exactly a very manly car. Driving through the West End with the top down, people might get the wrong idea.” He laughed.

Ten minutes later as we were stuck in bridge traffic, there was a couple crossing the road. The husband remarked to his wife, “Oh look. They match.” And as he passed by the car he began singing, “Just The Two of Us.”

And yesterday for the big meeting I wore sandals. No socks. I brought my Bubba Keg. After all you don’t want to suffer shock from too rapid of an immersion. Nobody will ever really know whether or not there was Kahlua in my coffee.

Today on the way home from clinic, Spencer and Tracey stopped in to visit Will. Ten year olds aren’t really supposed to be in the ICU, but I think once you’ve been there a couple of times yourself, you’ve earned the right. He wanted to go and so he did. They shared high fives. Spencer is going to get Will a bravery bead from Children’s for an ambulance ride and a tracheotomy.

Maybe the real world is real after all.

Out there somewhere is a nice cool cenote with a cave to swim through and a white beach on the other side.

It sure seemed real at the time.

Sunday, April 9, 2006 9:27 PM CDT

Dear Lauren:

Thanks for looking after me.

I am a just a dog. But the humans are all uptight. If anybody asks what kind of dog am I, you need to tell the elaborate story about me being a Portuguese Water Dog, an ancient honourable working breed that used to carry messages between fish boats and retrieve nets. I have webbed feet. My tail is a rudder. I can dive under water. I swim with the breaststroke. If anybody asks if I am a poodle, you must give them a look of utter disdain. This is what the humans do.

I like my blankey. I sleep with my blankey. I suck my blankey. My blankey is wonderful.

I like to eat everything including steak, hot dogs and seven bowls of food a day. My humans say you should only feed me two bowls of food a day and a couple of dog biscuits. Anything else requires professional carpet cleaning.

If things go badly wrong from a gastrointestinal perspective, it’s likely that I’ve managed to eat something I shouldn’t have. My owners hand feed plain rice and water until things get back on track.

I have a special recall word, “Seaweed”. When you use this word, I will come running. But I expect a treat. We can practice this a few times before you take me outside.

I like Frisbee. Very tasty. I also like playing tennis – you know the game where you throw the ball and I bring it back. We shouldn’t play this game more than eleven hours a day.

My owners put my toys away at bedtime otherwise I like to play all night.

I don’t eat at the table. (Though sometimes I eat the table.) I am not allowed on beds or furniture. I understand the command “out”.

Since you don’t speak dog, I’ll bang my bowls when I want food or water. I’ll scratch the hell out of your door if you don’t let me go outside on a timely basis. Never use the words, “Scupper, where’s the cat?” unless you are trying to scare away intruders.

If you get fed up with me, you can always put me in my box. I know it looks like prison to you, but for me it is my comfy den. If you feel the need for advice, call my buddy Boston (or his mom Sarah 604-555-5555). Also my vet is Dr. Leah Montgomery at Shaughnessy Veterinary Hospital,129-2850 Shaughnessy Street, Port Coquitlam BC 604-555-4444 www.coolvet.com

I love to go for a walk. My humans say you should be very stern and not allow me to pull on the leash. Between you and me, I think leashes suck. But if you want to slow me down, sling it under my leg.

If I get really muddy, I respond well to a garden hose. If we are feeling a little more upscale and spa-oriented, Pet Cetera has dog washing stations we can go to.

I love the beach. And the rivers. And the puddles. And the park. And the car. And the office. And just about everything.

I know this seems like a lot. Really I’m just a dog. I think I’m low maintenance.

Sunday, April 2, 2006 0:14 AM CST

Tonight I am visiting Surrealia.

Surrealia is a special place. Near as I can tell, Surrealia is hard place to find. To get there, you need jetlag, three quarters of a bottle of Chardonnay, Dean Martin at moderate to loud volume, and a start to the morning waking up in a hospital. But those aren’t the only things. You need to be emotionally prepared as well.

So let’s back up a bit. First the Spencer man. At the moment, on the pain scale, he rates his pain as diddly squat. Which is to say he is off morphine and has been released from the hospital. As for the cause? Absolutely no frickin idea. But the important thing is that we have an entire medical team completely dedicated to making sure we go to Mexico in ten days. Right to the point of doctors and nurses willing to make the ultimate sacrifice of thirteen days at a resort on the Mayan Riviera. So we have everything completely under control.

And then there is Will. I went to see him yesterday. They have me listed as immediate family. Will was not doing so well. Breathing on a ventilator, he had to scrawl things on a tablet. His first note started off something about Spencer. I tried to assure him that Spencer was doing OK. He became quite frantic. I was missing the point. It was a question. “Has Spencer ever been on a respirator in the ICU?” I let him know that Spencer had never been on a respirator. He seemed visibly relieved. The next scrawl was, “Finally, I have beaten Spencer at something.” So his body might be struggling, but his mind and his sense of humour remain intact.

I guess it’s some kind of bond between cancer buddies. I know when Will’s cancer came back and was detected a week or two ago, Spencer remarked, “That sucks. But I’ve done this three times now. It’s no big deal.”

Foster’s reaction was a little different. “You never told me Will had cancer.” Absolutely no recollection of Uncle Will ever being bald from chemotherapy.

The whole thing is rather disturbing. The problem with intensive care units is that they only seem to use them for folks who need intensive care. I explained to the nurse that I was Will’s brother. She said she saw the resemblance, but I know she was thinking I was a bit too old.

Anyway, Spencer is still claiming that his pain is didly squat. Mexico remains a possibility. A bottle of Shiraz is rapidly disappearing and I am ripping ABBA’s Gold album on my way deep into Surrelia.

Scupper? Not fairing so well. He started eating my staircase when he was left alone overnight. But tonight he is out walking with his buddy Boston (and Sarah and Tracey). Hopefully, he’ll come around and save his neurosis until we leave him with some poor unsuspecting friends when we leave for Mexico.

Gotta run. “Volare” is wrapping up and I need to let spin with “Dancing Queen”.

Cheers,

Steve

PS: My luggage arrived last night just in time for me to take my shaving kit with me to the hospital. My story is everything came back fine except for the bottle of Gran Marnier I was carrying for my boss which unfortunately suffered a crack and the contents leaked out. That's my story and I'm sticking to it.

Thursday, March 30, 2006 11:43 PM CST

Another Normal Day

Today was an interesting day.

The first remarkable thing was travelling down the highway somewhere outside Nuremberg at 4:00 am in a taxi doing a little better than 180 km/h. I wasn’t used to that, but I guess that is fairly normal in Germany. By the time I was in Amsterdam, my luggage had disappeared to the nether regions of the Netherlands. For reasons that only airlines will understand, it is actually cheaper by half to fly from Nuremberg to Amsterdam to Frankfurt to Vancouver than it is to just fly from Frankfurt to Vancouver. So by the time I made it back to Germany, I knew for sure it was going to be a long day.

Originally, I had planned to visit my friend Will in the hospital when I returned home. As luck would have it, Will is now in intensive care, and visitors are now limited to immediate family only. So I was left with some free time which was fortunate because as it turns out Spencer was admitted to hospital sometime between Amsterdam and Frankfurt. A little pain in the shoulder. Actually a 9 out of 10 ten on the pain scale for a kid who ranks major abdominal surgery as a 4. So he was having a little bit of morphine. Xrays showed nothing. Scans to follow no doubt. We’re hopeful that it is a torn muscle from excessive road hockey but not dumb enough to actually believe our hopes. He is doing much better today (his time – same day my time). Pain flared up off the morphine, but only reached a 6 on the scale. Seems to be closely associated with eating. The doctors are scratching their heads. They are keeping him overnight again tonight. But then I think I heard that story about Will, oh about four weeks ago.

The weird thing was hanging out at Children’s with Spencer and Tracey, I had a wonderful sense of how nice it was to be home. It was short lived though. I had to run and pick up Foster from Jack and Donna’s, feed him dinner, and go to a baseball meeting and pick up uniforms. I didn’t find Foster, but fortunately Jack and Donna found me as I was listening to the voicemails trying to figure out where he was at.

We wolfed down pizza, met the with all Foster’s buddies on the team, picked up the schedule and new uniforms and then went out shopping for a new baseball glove at Canadian tire. We picked up a bat too. Then it was practising for spelling test, jammies, brush the teeth, pack the lunch, play a few of games on the Game cube and off to bed. Don’t tell his teacher, but we skipped the 15 minutes of mandatory reading tonight.

So I guess it’s like 28 hours since I got out of bed this morning. Just a normal day in our strange abnormal lives. I’m ready to call this one complete. Just as soon as I phone those nice airline folks about my luggage...

Tuesday, March 21, 2006 1:06 AM CST

End of Season One

You wonder sometimes what goes on inside your kids’ heads.

This year Foster begged and pleaded to play hockey. Hockey was not high on our list of things to do. Of all the sports out there, why pick the one that costs a small fortune to play and forces you to get out of bed at five o’clock on weekend mornings? But it was his passion, so we relented. We are Canadian, after all.

All the other kids started playing hockey 2 years before him. I’m not sure Foster imagined starting out at the bottom and being one of the worst players on his team. But his coaches were all fantastic. They were dedicated to the kids having fun and learning skills. With lots of encouragement and good coaching, Foster made excellent progress. He’s now solidly in the middle of the pack. Given another year, I wouldn’t doubt if he could become one of the top players if he put his mind to it. He’s doing great.

So we were a little surprised when a month or two ago, Foster declared that he didn’t want to play hockey next year. We always moan and groan about getting up early. Foster likes to please. So we shut our mouths. The dialogue changed from “Shall we draw straws to see who has to get up at some ungodly hour tomorrow to take Foster to hockey?” to “Hey, can I take Foster tomorrow I wouldn’t want to miss a game.” We were much more positive. After all, if it’s what he wants to do, we will support him.

I thought things had turned around. A couple of weeks ago they handed out the forms to register for next year. We asked Foster if he wanted to play.

“I don’t want to play hockey next year.”

“Why not?”

“It gives me a headache.”

A headache? That sounds like an excuse. Did I mention that Foster isn’t just a developing player, but he happens to play on a team that has lots of development to do? That’s code for “they hardly ever win a game.” Maybe it’s just a lot of work for little reward. But we kept probing. Tracey talked to the coaches to make sure that he was getting lots of hydration. But he stuck to his story. He didn’t want to play hockey because it gives him a headache.

Then Tracey took him in to have his skates sharpened and brought his helmet along. She asked the folks at the hockey shop to check out the fit. They were shocked, “Who fit this helmet?”

“Ah, you did.” Tracey explained as she watched them turn various shades of red. They went about adjusting the helmet, expanding it to the outer limit of its expansion range. It is still a bit tight, but quite a lot better. We decided to see how he felt after the final tournament.

The final tournament was interesting. Officially, they don’t keep score. But kids aren’t stupid. They can tell when they are outgunned by a ten to one margin. In one game, Foster was goalie. The Poco Red Devils appeared to be standing still as the team from Chilliwack skated circles around them and had three periods taking shots at Foster. He made spectacular saves, but a fair number, well maybe a huge number, made it past him. It had potential to be soul destroying. I had memories of a soccer game where one of the kids let in a couple of goals and then ran off into the woods to escape the humiliation. Poor Foster had nowhere to run. But in the end, the clock ran out and his team all dog piled on him as though he had just single-handedly won them the Stanley Cup.

The final verdict? No headaches. Foster discovered that hockey is fun and not just something you do for pain. He wants to play next year.

And for us adults? Well I guess we should stop wondering what goes on inside our kids’ heads while we are busy crushing their brains from the outside.

Monday, March 13, 2006 9:29 PM CST

Nanny and Poppa got their new Smart Car. It's a little bit smaller than Spencer's go kart. We haven't yet added any weapons systems.

The portfolios are doing pretty well. Foster is on top. Plots available in the pictures section.

Tuesday, March 7, 2006 0:41 AM CST

Stopping at Wendy's

Let’s see. Spencer’s team of bald bandits didn’t win the JACK FM contest. Some guy who went to Torino and had his sign on worldwide television scooped the cash.

Spencer offered his services for a public service announcement and had his bit filmed on Friday afternoon.

Deception was widespread. Friends and family plotted to keep secrets from me. The boys were the worst offenders. We were driving home from the commercial shoot, which Tracey couldn’t attend because she had a migraine, and the plotting reached it’s high point. We were just about to merge on to Number 1 when Spencer asked “How long will it take to get home from here?”

“Well with you guys in the car, I can drive in the HOV lane and we can be home in about 30 minutes.”

“Oh Dad, I have to go to the bathroom, now!”

So we pulled over at Wendy’s. Spencer had a painful bout on the public toilet for a good 20 minutes. Then more plotting and scheming on the way home. Had to stop for ginger ale and Tylenol for mom. When we finally got there, a room full of people shouted “surprise.”

I couldn’t figure it out for quite some time. I’m utterly gullible. Didn’t even have a clue. The bigger surprise was that they were celebrating my 40th birthday which was about 51 weeks ago. I guess we were busy last year.

They’re really all wonderful people. I just don’t trust them anymore.

My buddy Will never showed up for the party. He claimed stomach pains. I didn’t believe him. I think he just didn’t want to get beaten in squash on Saturday.

When we went to visit him at the hospital tonight, I told Foster, “Now understand that Will has a tube up his nose. Be sure to tease him about it. Tell him how good it looks.”

“Oh Dad, you better be careful,” Foster replied, “When Will gets out he’s gonna beat you up. He’ll squash you!”

Let’s hope he beats me soon. He’s sure as hell never going to win a squash game against me.

And Spencer? Well he started more chemo today. There’s a new oncology clinic at Children’s. Lot’s of space. Everything new. Except the chemo. Still comes in a bag and gives you bad diarhea. Not that I’m likely to stop at Wendy’s if Spencer doesn’t think he can make it all the way home. I’ve fallen for that one already. I’ll just drive home and shout “surprise”.

The heron is carved.

Wednesday, March 1, 2006 11:43 PM CST

Day 1 Results

Well Spencer and Scupper each started their day with $5000 cash. Since it was imaginary cash, there was no risk that they would run off and buy video games or pigs’ ears or anything. So they invested in the market.

Scupper’s picks seemed a little strange, but that’s what you get when you drop dog biscuit crumbs on paper to make your selections. As of market close:

Spencer: $5084
Scupper: $5072

So the kid has the edge over the dog. Now if they can perform this way consistently, I’ll take either of them as my financial advisor and quit my day job.

Wednesday, March 1, 2006 1:12 AM CST

Efficient Market Theory

There was a time when they funded the public education system decently. Now I’m afraid, they aren’t even adequately funding teacher pensions.

Today, Spencer’s teacher instructed everyone in the class to each pick 5 stocks. They will follow them for a period of time and then the winner will be chosen. I suspect the real purpose is for Mr. B to identify his best choice for a free financial advisor. It’s a shame, he is a good man, they should really be properly funding his pension.

In any case when I arrived home, there was much excitement. I was to help Spencer pick 5 stocks.

I didn’t have the heart to tell him that his chances of winning the competition were equally good if he had Scupper choose them on his behalf. So I did what I do best. I faked it.

We started with a review of portfolio theory. We discussed stock volatility, the tendency of all stocks in a sector to move together, the advantages and disadvantages of having a balanced portfolio, what makes a good company and how that is reflected in the stock price, why a so/so company with a low price might be good investment, price / earnings ratios, efficient market theory and a number of related concepts. The frightening part was I think he got it all.

So we set about putting together a written plan for his portfolio management. There were several key elements that he chose:

a) He chose a high risk approach over a low risk approach because it’s not his money and he wants to win the game even though he understands that it could put him in last place with the wrong luck.

b) He is willing to invest in companies he has never heard of because he recognizes he is a kid without much market exposure and doesn’t want to limit his opportunities

c) He rejects efficient market theory because he believes that there are scammers and market manipulators who moves the price and their movements are not random.

d) He prefers to have a diversified portfolio over a sector specific one.

e) Finally when asked whether he would like to choose stocks that have performed well recently or may have been underperforming but represent superior upside, he chose a mix of both.

So with these somewhat conflicting guidelines he decided to chose stocks from the financial, energy, minerals, retail, and communication sectors. We set about diving into the TSX website and reviewing the companies in the various sectors. Unfortunately bedtime intervened, so he wasn’t really able to do any in depth comparison of the companies. So he did what a lot of investors do, he pulled up a company in the sector and had a glance at the charts looking at performance over five years and the last three months. When he saw something he liked, he went with it, more or less following his guidelines. His five stocks were chosen.

Now back to Mr. B. I think I shall have to sit down with Scupper and see if he can help with some selections for his portfolio. It will be a good test of the efficient market hypothesis.

Then again, Scupper might be an insider...

Tuesday, February 21, 2006 0:11 AM CST

Well Spencer dropped off the video for the Jack FM contest today. It was really cool. Emily's Dad Colin put the whole thing together. We'll try to figure out a way to post it in the next few days. The opening started off with the following words:

"Ten year old Spencer was riding home from the oncology clinic one day listening to Jack FM. He heard about your contest and gathered his friends together and they decided to let everybody know they listen to Jack.

Oh and don’t get any ideas that they want to win the money and do something noble like buy a new piece of equipment for the hospital. The kids will decide what they want to do. Probably buy hundreds of video games or send a bunch of kids to Disneyland. They’re playing what they want!"

Don't forget to send an email to

contests@jackfm.com

Let them know you saw Spencer and the kids at Childrens and leave your name and phone number and you could win $500 and of course help those kids with their medical needs like video games or Disney trips or whatever they want.

Sunday, February 12, 2006 0:10 AM CST

A Parent's Perspective on Family Centered Parking

Dear Sharon:

You are probably wondering why you were copied on a terse email from an angry parent about some parking matter. It warrants an explanation. You are after all the President of the most important health care facility in our province and your time is valuable.

We have been very good customers of Children’s Hospital for almost four years. Our son Spencer has Stage IV neuroblastoma. We hope to be good customers of yours for a long time to come.

I’m not in the habit of writing angry emails to any of the staff at Children’s. In fact in four years of care, with the exception of the issue described below, I can’t think back to a single incident where we have been upset or angry with anyone at Children’s. And given the tensions and stress of four years of treatment at the upper limit of the intensity scale of your oncology program’s offerings, it’s a tremendous tribute to the thoughtfulness and caring of people throughout the hospital that we haven’t had a single incident that has left us upset and angry. It’s a tribute to your philosophy of family centered care. You are doing a good many things very well. Exceptionally well. I hope you are very proud of the skill, dedication, and caring of the people at Children’s. Well done.

Now the parking issue. In the cosmic scale of the issues of the universe, it is very small. The problem is this: patients are issued parking tickets for parking in the patient spots. There is no mechanism in place to distinguish a patient’s vehicle from a staff vehicle so the patrollers use frequency of visitation as a proxy for employment status. It might work most of the time, but when it doesn’t, the results are not good. There is no easy mechanism to dispute a ticket. You have to write to the parking company. It might seem like a small thing, but for stressed out parents operating at the outer limit of their emotional functions, the burden is immense. It can be more than you can cope with. Parking tickets have exacted a higher emotional toll on our family than bad scans in radiology. We’ve had a lot of both. In the cosmic scale of our emotional well being, the issue is huge.

I have resolved to solve the issue once and for all on behalf of all stressed out parents. I can fix my own parking tickets with one email. But if I was a stressed out parent with a kid in the hospital whose first language is not English, I would probably just pay the ticket and quietly steam. I don’t think that is right. I think it is fundamentally at odds with a philosophy of family centered care.

Now I’m not in the habit of solving problems by writing an email to the top boss or going and pounding on somebody’s desk demanding resolution. I’m in the habit of rolling up my sleeves and bringing solutions to the table through a cooperative approach, which is exactly what I did. I hosted what I regarded as a very successful meeting with Mr. P who looks after your parking, as well as his boss, the parent advocate for oncology and another oncology parent. We took a structured approach carefully defining the problem, identifying potential solutions, evaluating solutions from the standpoint of both the patient and administrative efficiency for the hospital and the parking company.

I thought the meeting went exceptionally well. We arrived at a program with 4 well defined actions to begin rectifying the problem. I was particularly proud that we kept it entirely business like given my level of inner rage on this issue and two years of no fundamental progress. The only down side was that Mr. P could not commit to a timetable for action as he has higher priorities. However, he did commit to update the group with a timetable and a progress update.

Time has passed. There has been no update. No schedule. Evidently, no progress, as we received yet another parking ticket last week as Spencer was in for chemo. None of the potential actions seems to have been even partially implemented. One day last week, day 3 of chemo, Tracey had to drop Spencer alone at the entrance while she drove to Safeway to park the car as there wasn’t a spot available on site. It is vital that we keep these spots clear for the patients and equally vital that we don’t harass people for using them as intended.

I must, it seems, embark on a campaign to raise the issue to a higher level of awareness so that the issue is resolved and the program implemented. I am committed to the resolution, and will do whatever it takes. But frankly, I would rather dedicate that time to playing with my kids. In your capacity, if you are able to bring some level of priority to the issue, I would be very grateful.

Thanks for listening. Thanks for the time. If you need any further background or details, please don’t hesitate to drop me a note.

Best Regards,

Steve Dolling

Saturday, February 4, 2006 0:09 AM CST

Naked Man Covered in Itchy Pink Stuff Flying to Tampa

I am willing to concede that it would be disconcerting to come home in the afternoon and find the sheets stripped off the bed, and your husband naked, furiously vacuuming. That’s why I worked quickly. So I wouldn’t get caught.

But perhaps I should back up a little bit.

There are moments in life that are infinitely explainable. This is one of those moments.

It all started last night. I was just on my way up to bed when I heard a noise of running water followed by a splat. This was mildly unusual, mostly because it originated in the living room. Sure enough, on exploration I found that the light fixture in the living room was leaking water.

I am used to plumbing fixtures leaking water. Such events generally require a trip to Home Depot, $14 worth of parts, and 20 minutes with a pair of pliers.

I am at a loss for generalizations about water leaking out of electrical fixtures. All I could do was mop up the hardwood and place a large container underneath to capture the spontaneous eruptions.

That’s what lead me to be naked vacuuming this afternoon.

Oh wait. This doesn’t really sound quit right. There were actually a few more steps, none of which involved me losing my mind. You see, I had to go into the attic to find the source of the leak. The attic is full of blown in pink fibreglass insulation. The itchy stuff. And since the access hole was right next to the bed I thought it would be thoughtful to strip back the bedding just in case any of the itchy pink stuff found it’s way out of the attic.

So now it’s becoming a little more clear. But no I did not strip naked to go and roll in itchy pink stuff. Let me assure you, I was fully clothed at this point. In the attic I found that water was indeed working its way along the ceiling and finding it’s way out through the pot light. The source was over in the corner near the chimney.

So off to the rooftop I went. Now, we don’t actually have a real chimney. It’s a modern chimney which is to say it is a stainless pipe with a huge plywood box around it covered in stone veneer made to look like some impressive chimney. It’s actually a piece of crap designed to keep water out for exactly 20 years at which point all the mortar fails and water leaks in everywhere.

I’m flying to Tampa on Sunday so I won’t really have time do anything with the chimney other than wrap it in a big blue tarp for the enjoyment of the neighbours. Which still doesn’t really explain why I was naked. But when I came back in the house you see, the first thing I did was strip out of the clothes that had those itchy pink fibers before I jumped in the shower. And then I remembered that it would probably be best to run the vacuum through the bedroom and suck up any itchy pink stuff before I got all clean.

So there it is. The whole story. And I never got caught. And there is no reason why Tracey need ever know what goes on here while she is out of the house. It would just be disconcerting.

And now I have a new purpose in life even though I’m scarcely done with the parking people, but that’s another story.

Tuesday, January 31, 2006 11:39 PM CST

The Trial Has Been Delayed

Scupper was left at home alone again today. His lawyer successfully argued for bail while he awaits trial. The court did not impose any restrictions on the bail so he was free to roam without even the little gate up that secures him in the family room.

These were the facts. Additionally we know that Spencer left his recorder on the stairs.

From this point on, the facts are a little less clear. We do know that when Tracey returned home, the recorder was removed from its sleeve and left on the floor downstairs. Forensic analysis has determined that the indentations on the mouthpiece are most probably teeth marks, and in all likelihood, they are canine teeth marks.

My lawyer has advised me not to draw any public conclusions from this evidence as any speculation might bias potential jurors and interfere with Scupper’s right to a fair trial.

The prosecutors have determined that there is not enough new evidence to consider further charges.

Tracey bought three new videotapes. She wants to see if any alleged canines are actually playing tunes on the recorder or simply engaged in malicious chewing with intent.

Scupper’s lawyer was successful in gaining a continuance to allow additional time for the defence to prepare for trial.

Wednesday, January 25, 2006 9:23 PM CST

Finally, Proof

We have been in dispute for some time. I’ve felt that there was ample evidence to convict, but because we chose to go for a criminal conviction, the burden of proof has been beyond a reasonable doubt. Had we chosen to go the civil route, we would have been able to go with on the balance of probabilities. But given that the offender has no assets, I saw little teeth in civil penalties. An injunction would be pretty much unenforceable.

We faced repeated denials. Though you could tell he was lying. You could tell when he turns away and won’t face you that he’s not telling the truth. But he’s been through the system a hundred times and his lawyer tells him to confess nothing and then its up to us to prove it.

Spencer figured out what to do. Better evidence is what we needed. It’s not enough to find traces of dirt or a warm spot where he has been. So they set up the video camera and left it running the other day when they went to clinic.

Sure enough when they came home, the same guilty looks, the same denials. But Spencer pulled out the video camera and plugged it into the television.

Within ten minutes he and Foster were giggling uncontrollably. There on the video was Scupper jumping up on the couch for a little nap practically the moment the garage door shut. Not perfectly comfortable there, he proceeded up on the back of the sofa where he could snooze and still open an eye now and again and have a view of the front door. They fast forwarded through two hours of tape. Plenty of idle laziness and who knows what mischief when outside the view of the camera. Scupper barked at the dog on the video as though it wasn’t him.

But it was. And now we have the evidence. The trial will be next week.

As long as the videotape doesn’t get eaten.

Friday, January 20, 2006 0:57 AM CST

More Fun With Parking

Mr. Brandt:

I have had several occasions in the past to write to you. It is safe to say that in our three and half year battle thus far with Spencer’s cancer, the greatest personal stress that we have endured in any interactions with anyone at the hospital have been with your company. That speaks very highly of the medical team at Children’s, and well I’m afraid does not speak so highly of your organization.

I am angry. I am upset. I am resentful of the stress that caused each time we are issued a parking ticket and the time that it takes to rectify it. I have better things to do with my life. But worse, I recognize that if this has happened to us ten times, it means you’re also causing immeasurable stress to other parents who don’t need it.

Allow me to refresh your memory of the problem. Patient parking spaces are provided, presumably for people like us, who drive their children to the hospital so they can go to clinic, perform tests, have chemotherapy etc. We are regular customers probably averaging 100 visits a year to Children’s. It is so nice to be able to walk 20 steps to elevator when your son’s haemoglobin is running is down in the low 80s. I think we are using these parking spots exactly for their intended purpose. Would you disagree?

I think not. But perhaps because we are frequent users of these spots we are mistaken for being staff and are often given parking tickets. There is no on-site method to deal with it. Your tickets allow us to pay by phone, but if we wish to dispute, it must be in done in writing. This is just a rage building mechanism. Your staff have no way of consistently identifying what is a patient car and what is a staff car so they guess and we lose.

This is unacceptable and it will change permanently very soon. I am confident of that.

However I have no confidence that any of the stop gap measures that you have proposed in the past, giving you our license numbers etc. have lasting effect nor do they help any of the other parents who are no doubt being impacted. I therefore would like to meet with you personally along with Dan Mornar, Patient Advocate as follows:

Proposed Meeting: Wednesday January 25th, 10:30am

Location: Childrens Hospital, Meeting Room Specified by Dan Mornar

Particpants: Steve Dolling, Kobie Brandt, Dan Mornar,

Purpose of the Meeting: Permanent Resolution of the Unjust Ticketing of Patients Using Patient Parking Spots

Agenda:

Review of the problem – Dolling

Description of the methodology by which tickets are issued – Brandt

Discussions of possible solutions – All participants

Evaluation of the potential solutions and impact on patients – All participants

Evaluation of the potential solutions in terms of administrative efficiency – All participants

Action plan to rectify – Brandt

Plan for follow up to ensure that new plan takes effect – Brandt

I fully recognize that your company may be acting solely on the policy as dictated by Children’s administration. I don’t know and don’t care. I get tickets from your company. Though if you choose to invite someone from Children’s to the meeting to be engaged in the joint solution, they are certainly more than welcome to attend.

I expect no excuses. I expect cooperation and respect. I expect no apologies. I expect action.

I trust my expectations will be met. I look forward to meeting with you next Wednesday. Please let me know by return email if the time works for you and I look forward to hearing from Dan on the location and if the time works for him as well.

Best Regards,

Steve

Wednesday, January 18, 2006 1:27 AM CST

About That Transmission

Good and bad. Categories that are easily understood. It’s helpful to drop things into these categories and make life simpler.

It’s easy to do with things. Take my transmission. Just before Christmas, it fell into the bad category. Actually, it sort of exploded into the bad category with a lot of grinding metal in the gear train. But with a lot of money it’s possible to shift things from one category to another. Now it falls in the good category.

Then comes the question of people. Maybe it’s not all that helpful to drop them into categories, but it’s easy to do. Take Kalli, for example. She went out of her way to put smiles on my kids, introducing them to Team Canada, fixing them up with hockey jerseys and finding special seats for them so they could see their new heroes do amazing things with the slidey turds on the ice against Team USA. Way above and beyond the call of duty. People who do really nice things for kids unquestionably fall into the good category.

Then there are transmission repair people. They work in the automotive repair industry. People who work in the automotive repair industry don’t necessarily unquestionably fall into the good category. So when the car dealer told me my transmission was dead and would cost me $3000 to repair, I had a little paranoia that they were maybe trending towards the wrong category and had the vehicle towed to the transmission specialist. I was expecting that it would be at least 20 percent cheaper after discussing the approach of the specialist. And then as they stripped my transmission to bits on the bench and called me with updates as they ran the bill up over $4500, I was beginning to develop very strong opinions about what category they should fall in.

I wrote the transmission specialist a very nice letter pointing out the choices between good and bad and giving them an option to self select a category. Actually it was an evil letter of the most compelling sort biased towards choosing good over bad. But they held firm, claiming goodness and integrity while I await my MasterCard bill. So given no movement, I felt compelled to write a really interesting yet factual story that would be widely read by lots of folks around town and be sure to cost them at least three transmission jobs.

But what if I was confusing my own bad fortune with evil intent? What if I was wrong? What if an honest tradesman really did do a decent job, fairly priced, on a transmission that suffered a most grievous failure. Then wouldn’t I fall into the bad category? It was this question I struggled with as I waited to for the car to go back for its 15 day post transmission overhaul check up today.

Tracey took it in. She tends not to be judgemental, but is a tremendous judge of people. Tracey is good. She did what I couldn’t, which was to look them in the eye and have a conversation without having demented thoughts about a high speed rearrangement of the furniture in their shop without regard to the position of the humans. And Tracey passed judgement. And she determined that they weren’t bad.

And so on that basis I’m prepared to drop the whole matter and move on with life. Though I’ll never name the transmission people and declare them to be good. The shop supplies still remain on my invoice.

Tuesday, January 10, 2006 1:13 AM CST

Eating Dogs

When I arrived home tonight, the boys were already eating dinner. They had those hotdogs with the Pillsbury dough wrapped around them and baked. They were dipping them in ketchup. I love those hot dogs. I dip mine in mustard.

“Oh, are we having hot dogs?”, I asked.

“The boys are having hot dogs; we’re having basset fillets, and baked vegetables,” Tracey said.

I looked at Scupper. It’s been a long time since I’ve been to Korea.

“Basset fillets? Like the dog?”

“Not basset. It’s a fish: basa.”

“Bass?” I asked. I know what a bass is.

“No. Basa.” She explained.

Maybe it’s like an Italian bass. I’m not sure what a basa looks like before it’s filleted. Probably something ugly with a bad name that somebody in marketing got a hold of. It was a wonderful fish beautifully prepared.

Anyway, I digress. Spencer is happily eating hot dogs because he didn’t start chemo today. We are trying irenotecan again. Last time he had a very bad time with it, both ends. Kind of like Scupper the day I learned how to remove the carpeting from the cargo area of the Pathfinder and Tracey forever said goodbye to the serving spoon from the kitchen. So this time around they know what to do, and are hitting him with two days of a special antibiotic before they start. Hopefully this will be easier on him. The irenotecan, though hard on his gut, is apparently easy on the kidneys. So he starts Wednesday. And it’s a good thing. Spencer is starting to get a little stubble of hair, and I hate to see him looking that way.

They are planning to admit him on Friday to finish up the 5 day round over the weekend. If he is feeling OK, we’ll get out on day parole. And if he is having a rough time, they will be able to better control it in the hospital before he gets dehydrated and really sick like last go around.

Everybody is doing well. Spencer played the full game in soccer on Saturday and road hockey on Sunday. Foster had two rounds of ice hockey and a soccer game as well. I can’t remember what else we did last weekend. Is it really only Monday?

Tuesday, December 20, 2005 1:10 AM CST

Merry Christmas!

I know it must be that time of year. The other night, the four of us were all crammed into our bed while I read from the big book of Christmas stories. It wasn't like we were nestled all snug with sugarplum fairies. It was a little more tangled and violent than that as there wasn't a lot of room. Foster had a leg slung over my hip with a knee in my groin.

"Foster, we're not reading The Nutcracker." I explained. The boys thought this was very funny.

We rearranged ourselves and settled in on a story about Rudolf. As far as I remember Rudolf was a short Christmas carol, but each story in this book is expanded to 10 pages of large-print prose and 10 pages of lavish illustrations. As we were going through, I embellished the story somewhat to make sure the boys were paying attention.

The fog was so thick it could scarcely be cut with reindeer farts. Santa had a problem with drinking too much vodka… The story mutated into something a little less gentle, a little cruder, perhaps a little more real. It had the boys howling with laughter. Scupper started barking. The game was to guess what was the real story and what parts were made up.

But I digress. What would the Christmas letter be without a chronology of all the family’s activities over the course of the year? Well let’s see. We started the year with the boys sharing bone marrow, we had great summer holiday sailing on Snapdragon, Scupper ate a lot of things he shouldn’t have, Foster started hockey for the first time, both Spencer and Foster played soccer, we built a new fence and an igloo in Nelson, Tracey’s folks fixed her car for good, the boys are both doing exceptionally well in school, we went skiing at Whistler, and...

Never mind. I’m not sure this is working. The highs and the lows can’t be captured in a few paragraphs. Sometimes the terrifying is ordinary, and the ordinary has significance beyond description. But if I told you we’ve had great dinners around the dining table and opened bottles of ice wine with syringes, it doesn’t really rate as the stuff that great Christmas letters are made of does it? And I’m pretty sure I should stay away from the terrifying. Perhaps it’s just enough to let you know that we’re doing well, enjoying life, and taking great pleasure in the ordinary.

So here’s hoping that Christmas finds you nestled together snuggly with your family, that you are able to laugh when you have a knee in your groin, and as you sort through the story looking for what is real, you find that what is real is right there all around you, and it is yours to appreciate and share with those you love. Have room in your heart for the dog that eats your coffee table.

Love from,

Tracey, Steve, Spencer, Foster, and the black beast who shall remain nameless

Saturday, December 17, 2005 2:24 AM CST

The Hockey Gods Have a Sense of Humour

Today was a big day in the hockey world. Canada selected it’s new National Junior Team. The lucky members of the new team had their status announced at 8:00 this morning. What followed was a team meeting, a team photo, and then they were all introduced to Foster and Spencer. It must have been a big day for them. A great step on the way to a gold medal and illustrious careers in the NHL.

I think Spencer and Foster were pleased to give up their time to provide support for Team Canada. It wasn’t entirely without benefits. They were given Team Canada jerseys. But they sort of got all messed up. The players insisted on writing all over them. Oh well, the boys didn’t seem to mind. It was all a lot of work without actually seeing a hockey game, but I really think Spencer and Foster didn’t mind missing school – they did get back for a part of the afternoon.

And while they were waiting to greet the team and wish them well, the nice folks in the Vancouver Giants office gave us four tickets to the game tonight. It turned out to be terribly exciting. They came back from a three goal deficit and won in overtime. Very fun.

But the best part? During the intermission the little blimp flew around dropping gift certificates into the crowd. Spencer got one! He is now entitled to a free haircut at GreatClips.

Now he just needs to find some free hair to go with it.

Wednesday, December 14, 2005 1:18 AM CST

There must be a story to go with a photo like this. Hmmm. What it could be?

No. That's not it. It's not story time. It's time for that profoundly moving Christmas letter.

This could take several nights and a lot of rum. Do check back.

Saturday, December 10, 2005 1:14 AM CST

The hockey gods weren't punishing me. They were merely calibrating me so I could truly appreciate the real thing.

Canucks 3 - league leading Ottawa 2 in an overtime shootout on the 100th sold out game in a row while sitting in a comfy box eating free pizza with the whole family!

I do believe that's living. The boys definitely enjoyed it. Tracey loved it. Scupper? Well who cares.

Thank you Telus and Children's Hospital!

Tuesday, December 6, 2005 11:37 PM CST

The Hockey Gods Have Decided My Punishment is Over

The only hockey game I’ve ever paid the big bucks for and taken my sweetheart to was the Canucks only home loss this season against Colorado. The score was three nothing within the first few minutes. The primary source of entertainment was the disparaging remarks of the fans which you just can’t get in your living room. It was cruel punishment.

But then there was this weekend. Some nice charitable organization, the Starlight Children’s Foundation decided that we should have two tickets for the Canucks Super Skills competition. So Foster and I took the Skytrain and made quite an adventure out of it. It was good fun. And Sami Salo still has the hardest shot.

Then yesterday, somebody from Children’s hospital sent an email saying that somebody from Nike bought a team photo shooting with the Vancouver Giants and donated it to Children’s. Would the boys like to have their picture taken with the Giants? Oh wait. No. Sorry. Three emails later we found out it wasn’t the Giants it was the Canadian world junior team! The boys chose this over their school parties on December 16th.

And last night Foster had a hockey practice at the coliseum. It was lead by Stanley cup winner, Ryan Walter (Foster’s Coach’s brother) and Canucks associate coach Mike Johnson. Some fairly high level talent for six year olds. He got to change in the Giant’s dressing room.

So it looked like the Hockey gods had ended their punishment.

Then today I knew for sure the punishment was over. The Children’s Hospital Foundation called. Different folks in the same office, but apparently they all think of us. Would we like to have four tickets for the Canuck’s game this Friday? I don’t think they are very good seats. They say they are in the Telus box. So it must be some kind of phone booth or communication room with fold up seats. I guess we’ll see when we get there.

Saturday, December 3, 2005 11:45 PM CST

The Truth of Fresh Baked Bread

There is no real deadline for such things. Somehow this year we started out with transplant and just never got around to it. At some point this summer, I recognized that I was probably a little overdue, even though there is no deadline. So I started to take the Christmas lights down.

I removed one full string from the gutter on the back of the house and the next I left hanging half off intending to move the ladder over the fence into the front yard to complete the work. And then at some point I noticed the fence was falling down. And sailing season set in. And well then came the granite and the cedar and the Christmas lights just stayed there.

The guilt persisted about to the point where the leaves fell off the trees. Then I realized I wasn’t lazy. I was actually clever. I already had the jump on my neighbours. Those poor bastards would be struggling in the rain and cold clipping the lights onto their gutters and all I would need to do is put up one string and plug them in.

Well they’ve been busy. Now the neighbourhood is all lit up. But not my house. Just one string to go, but now there is snow and ice and cold temperatures to deal with. I feel a deadline looming.

Scupper feels no such pressures. I am not sure he prepares for anything. He just sort of lives life in the moment. The other day for example, I seriously doubt if he woke up and decided he wanted to eat a half loaf of French bread and would take steps to make it so. He just happened to be in the car with Tracey and Spencer when they dropped in for groceries. When they stopped in at daycare to pick up Foster and left him alone in the car, the French bread just spoke to him and said, “Scupper, live for the moment. Feel no guilt. There are no consequences.”

The French bread lied, of course.

But when you live in the moment, you don’t connect those screaming unhappy humans to anything that happened in the last moment. They’re just plain irrational. And French bread always speaks the truth.

Thursday, November 24, 2005 10:36 PM CST

The Finer Points of Being a Sibling

The SuperSibs welcome package arrived today full of pointers for me and Tracey and goodies for Foster.

I’m not sure exactly how we got signed up for SuperSibs or why it has taken three and half years, but the envelope arrived and I gave it a read. Tracey and Spencer were still at clinic having a bit of extra hydration after his latest chemo round which wrapped up today. This gave Foster and me some quality time to work on his French spelling test and talk about the finer points of being the sibling of a cancer kid.

The newsletter was full of helpful pointers. I launched right in asking Foster how he was feeling. There was a handy little chart with little yellow faces which seem to cover the full spectrum of human emotion. “Happy” was his selection. I took great care to let him know that all the feelings were OK and led him through “angry”, “sad”, “confused” and other selections. He stuck with “happy” but admitted that sometimes he was “confused”.

The chart came complete with a little frame magnet that allows him to plaster it on the fridge over top of any of the faces to show how he is feeling even if it was difficult to talk about it. We figured out how it worked and he took it with a serious look over to the fridge to put it up. He left it there and walked away. I went over to have a look. He had framed the “happy” face.

So he is a either a happy kid or he has learned to fake it well. Or maybe he has been faking it for so long he can’t tell the difference any more.

I wonder where he would have picked that up from?

Thursday, November 24, 2005 10:36 PM CST

Tuesday, November 22, 2005 0:21 AM CST

Yes He is A Luxury Dog

What the hell was I thinking?

He wanders around every day in a black and harvest moon beige tuxedo. His formal wear grows on him. He fit right in at the Chateau Whistler. His little doggy bed, stainless water dish, and complimentary treats were all waiting for him on arrival. He settled in nicely, and he makes friends wherever he goes.

Saturday morning the concierge said good morning to me. For Scupper it was, “Scupper good morning. How are you? Happy birthday buddy!”

I locked him in the car.

I couldn’t find a coffee table in the hotel room, but I’m sure Scupper would have found something to destroy. The rest of us headed out to the ski rental shop.

A lot has changed since I last went skiing. We all rented gear. The new skis are shorter, wider and much more shapely than they used to be. It’s all in an effort to make skiing easier for older, fatter, out of shape baby boomers. I was grateful for their efforts, though I would never confess to being old, fat, out of shape, or a baby boomer. I think I will throw away my old long skinny things that tower over my head. I’m not sure about my boots. I think they fit fine, but they are buried in the crawl space and I hate going down there because I am old, fat and lazy. The rentals were fine and everything was half price this early in the season.

Foster blew a ski just as he was getting on his first chairlift. That didn’t seem to bother him. He managed to ski off on one ski and the next guy off brought Foster’s ski with him. We got on the next high speed quad chair headed for the top of the mountain. It’s a long long way to the top of Blackcomb. Something like a mile of vertical.

Once we were up, we were committed. Which isn’t necessarily a very good idea. Ski school would have been a smarter idea, but we weren’t sure if Spencer would hold up through a whole lesson. After he had fallen down twice in the first couple of minutes, he decided he didn’t want to ski. Tracey and Foster carried on and I worked with Spencer a few feet at a time until we worked our way down to the long flat green run that goes many miles down the mountain. Eventually Spencer started to enjoy it once he realized he was in control and it wasn’t a “point your skis downhill and live a moment of terror until you crash” kind of thing. It is possible to turn and stop.

We ended the day after his legs ran out of steam. Not in a real convenient place. We could see the mid mountain chair for downloading, but it was a long route to get there on blue and green runs. By this point Spencer was walking over a difficult bit with my poles while I carried his skis. No sooner had I suggested that we could get there more quickly going straight down the black diamond route than he was off on a black diamond butt slide. I don’t do black diamonds and definitely not without my poles while carrying extra skis. I did my best to keep up sliding on my butt. It wasn’t long until we were back on the chair on our way to the village.

No training was required for the swimming pool, hot tubs, and sauna. You dive in the water inside and swim under a wall to the outside pool. No need to get cold. And when your head starts to freeze you just duck under water for a bit. The boys loved it. We ate out at restaurants and had no chores to do.

Scupper wasn’t too pleased that his welcome wasn’t extended to the spa and restaurants, but he had fun overall. Sunday morning I woke up to him barking to get out the door. I dressed and took him down. We weren’t ten feet out the door when he ducked into a squat beside the valet desk preparing to unload.

Yes he’s definitely a class act worthy of the finest hotels. He would never attempt to actually poop in the lobby.

Steve

PS: Today was a start of a new round of chemo for Spencer. Albeit a short round. His kidney function test from last week doesn’t look so good. So it’s off to the kidney specialist. There is no such thing as a real break.

Thursday, November 17, 2005

Luxury Dog?

The good folks at the Chateau Whistler decided our family deserves a free weekend in their luxury hotel. I’m not entirely sure why. I think they feel sorry for us because we have so little hair.

Now that I think about it, that probably is their bias.

As we were making plans, we had to think of Scupper. It’s his birthday this weekend. Now I don’t usually think of Scupper and luxury hotels in the same synaptic firing sequence, but Tracey made inquiries. As it turns out, Scupper is more than welcome to come and stay at the Chateau Whistler. But because he has more hair than the rest of us combined, we have to pay $50 to bring him.

He will have to be on a leash while in the hotel and he is not allowed in the restaurant. But they do provide him with his own towels and a little luxury dog bed.

Somehow this doesn’t seem entirely right.

But what the heck. There is already snow on the mountain. The kids have never been downhill skiing before. Maybe we’ll give it a shot. Spencer’s platelet levels are up to the point where I’m allowed to beat him again, but his hemogoblins are at bit low, making him a bit low on energy. Tracey is going to swing around to the clinic with him tomorrow and we will see if he can get a recreational refill of red blood cells.

I wonder what kind of coffee tables they have at the hotel?

Sunday, November 13, 2005 8:23 PM CST

Sometimes there are no words and the pictures tell the story.

Monday, October 31, 2005 11:52 PM CST

Happy Halloween

It was against my better judgement. My better judgement ranks as only average judgement among the general population, which made it all the more troubling that we went ahead regardless.

The boys wanted to go with the Captain Underpants costume. Who was I to say no? Especially since this year, I wasn’t the target.

That’s not to say there wasn’t a struggle. There was quite a lot of discussion about where the tail would go. Foster suggested it should come out “the penis hole”.

So the boys grabbed Scupper and I worked on a pair of Foster’s old underpants. And soon he was ready to go, except for the cape.

And then he went.

Bouncing all around the living room nipping at his new underwear.

That was last week. Since then Spencer had a bad reaction to some platelets, spiked a fever and was incarcerated for having a body temperature 1.5 degrees above the average for the population.

Yesterday he was released on day parole. They didn’t want to let him go. The new fellow suggested that releasing the boy with hemoglobin of 80 and platelets in the 20s was not a good idea. I didn’t think keeping him shut in the hospital was a good idea and so I promised that I would not let him near any power tools or sharp objects and he wouldn’t run any marathons. I promised to have him back by 6:00 for fresh hemo-goblins.

So we left the hospital. Soon the boys were at home in their element with sharp knives in hand carving away at pumpkins. The little pumpkins were fun, but when Tracey talked to neighbour Susan about a somewhat larger pumpkin, we were on our way to her dad’s house to select one from the garden. We ended up with a smaller pumpkin, probably only 150 lbs. We loaded it up and headed home. Time for power tools.

All was set for Halloween. Except for the incarceration thing. But with another transfusion of platelets, they released Spencer for good just in time for Halloween today. Foster hit the streets as an alien and Spencer dressed as the Grim Reeker - the electronic fart machine providing the soundtrack.

And Scupper? Well it turns out that better judgement prevailed. He decided not to dress up and stayed home with me to howl at the doorbell.

Monday, October 24, 2005 1:07 AM CDT

Spencer had a five day round of topless cyclone last week. At least that’s what we call it out here on the west coast. I think on the Atlantic coast they must call it a semi-naked hurricane. Lay people would know it as chemo therapy. I think it went well. At least he kept eating all week and never barfed once. I hope it does some good against that cancer thing because it showed up in his bone marrow again for the first time in three years.

Spencer had hoped to get his school picture taken while he still had hair. The oncologist made arrangements for chemo to start a little later on Thursday so it could happen. Unfortunately, the teachers went out on strike for a couple of weeks and the schools were shut down. So no photos. But they go back tomorrow. I imagine the mediator made it clear to all parties that there were kids out there who wanted their pictures taken while they still had hair so they had better settle their differences. And so they did.

That’s not to say there was two weeks without school work. We completed a science project. It had to demonstrate simple machines, pulleys in fact. And dads were allowed to help. So naturally we built a windmill with a drive shaft and pulley mechanism that can lift a hammer with the wind from a small fan. I asked Spencer what he would say when his teacher asked who built it. “Well you did and I helped,” he said.

“Really? Who cut the tower columns to length with the saw?” I asked.

“I did,” he replied.

“And who nailed the tower columns to the base?”

“Me.”

“And who nailed the top part in place? And who went to the hobby store to buy the shaft and bearings? And who nailed the top part to the tower and the bearing blocks to the top part? And who cut the shaft to length with a hacksaw?”

“I did”.

“And who sanded the winding drum on the lathe and drilled the hole down the center and cut it off from the waste block?”

“Me.”

“Uh huh. And all I did was cut out the blades and make a few pulleys. So who really made the windmill?”

“I made the windmill, and you helped a little.” And so it was.

Now I have to figure out what Foster and I can make together. He started building a boat out of scraps from the fence. I’m not sure it will ever really float. He has a design for a new desk in his mind, but I haven’t figured out how to source install the anti-gravity to suspend it in space the way he imagines. I’m sure we’ll figure out something. In the meantime he’s been playing lots of hockey and soccer. Unfortunately we weren’t paying attention as parents these last few years and enrolled him a couple of years late. Statistically, he has little chance of ever playing in the NHL after starting at the late age of seven. But he does seem to be catching up very quickly. It’s a good thing we don’t believe in statistics.

And where would an update be without mentioning Scupper. Scupper has actually been replaced by electronic dogs. Spencer had his heart set on getting a new Nintendo Gameboy DS. So he sold some surplus toys to his rich brother Foster and went out and bought one. And since Foster had the cash, he got one too. So now they both play Nintendogs and more or less ignore Scupper. Worse, the game has voice commands so Scupper has to listen while they play with their new dogs.

Scupper’s little brother Ben came to visit for a few days while his owner recovered from a new hip installation. It gave me a new appreciation for Scupper. Scupper doesn’t go on the beds. He comes when he is called. He doesn’t run away. He doesn’t jump on people. He doesn’t beg for food. He leaves the kitchen when you tell him to. I would never say bad things about Ben. I just wanted to point out the things I appreciate about Scupper. Most of all I, appreciate that Scupper now retains full control of his bodily functions if I have to speak to him in a harsh voice for some misdeed.

It was fun to see the two of them together. I now understand that a huge portion of Scupper’s behaviour is genetic. He can’t help himself. His genes make him silly.

It’s a huge relief actually. Now I know that the things I do (or forget to do) that drive Tracey crazy aren’t really my fault. I’ve been genetically programmed to leave the toilet paper roll empty and not put dishes in the dishwasher.

Friday, September 30, 2005 2:40 PM CDT

Driving to School

Spencer didn't sleep that well last night. He was a little bit excited about going to school today.

Spencer's Cops for Cancer Buddy, Rob Rothwell made a few arrangments and they did a little detour on their 600km fund raising ride for kids with cancer. They swung by the house this morning with a group of riders and their motorcycle escorts.

Spencer would have been perfectly happy to ride along with them on his bike, but Rob really wanted him to drive the Go-Kart. So Spencer and Foster piled in and Spencer's friends Keaton and Jared joined the cops on bikes and made the ride down to school stopping all traffic as they went.

We were very careful not to refer to the go kart as a formula one all terrain assault vehicle with 60 mm air cannon, but referred to it as an "electric wheelchair with dog ball fetch assist device."

Kilmer had an assembly with presentations and then after Spencer and Foster's classes had a little break before recess to do some kart riding and artillery practice.

I think the boys had a fun morning. There are a lot of really good people in this world. The staff, teachers and all the kids at Kilmer are all wonderful. And Rob and all his colleagues truly have thier hearts fully engaged making it a pretty special day for the boys.

Tuesday, September 27, 2005 11:16 PM CDT

Dick's Lumber

I’d never been there before. I guess it’s because it’s a long way from home, but it’s only five minutes from my office. It’s a manly man’s lumber yard. I stopped in there at lunch time yesterday. It’s impressive. They have serious lumber. Any kind of lumber you want. It’s the kind of place you can drive around with a flatbed trailer and have them load a few thousand board feet of anything with massive forklifts. The office / retail store is brimming with people who are servicing the contractors who frequent the place. I walked up to the desk and requested a quote on rough sawn two by tens in red cedar. It was running a little less than four bucks a foot. I thanked the man and left.

I had no plan to return today, but plans change. So there I was back at the desk. The same guy as yesterday. I told him I wanted to buy some two by ten rough sawn cedar.

“What length?” he asked.

“Eight feet,” I replied in my manly man Dick’s Lumber customer voice.

“How many?”

“Uh, just one.”

“Weren’t you in here yesterday?” he asked.

I guess they don’t have a lot of customers who come in one day, request a quote and then spend another day thinking about it before committing to a thirty dollar purchase. “Ya,” I replied. Some of the manliness had left my voice at this point.

After determining that I didn’t have an account, he sent me over to the cash desk and on to shipping with the yellow copy of my invoice. “Just pull it over here,” the shipping coordinator gestured to the line of trucks outside, “ and somebody will be out to give you a hand.”

It’s pretty safe to say I was the only guy at Dick’s today driving a Harvest Moon Beige VW convertible. I tried to look manly while I waited in line with the top down. Eventually the picker came and grabbed my invoice and figured out what he was looking for. “Let’s see. Two by ten cedar.” It was in a bay blocked by a truck. No room to get a large forklift in. Not that you need a forklift to get a single board, but when the bundle of eight footers is racked 12 feet off the ground, you need to bring down the whole stack. We waited for 15 minutes while the picker made repeated radio calls for a “small machine” to the two by ten cedar. None came. Eventually the big truck moved and there was enough room for a “big machine” to come in. They lifted down the thousand pound stack of lumber and the picker chose a fine specimen for me.

I was able to load the entire board into Tracey’s car without benefit of a forklift. I said my farewell to the picker, “I’m not sure my wife is going to appreciate me transporting lumber in her car.”

“As long as it’s your wife’s car,” he said, and I was on my way.

So I spent the afternoon engaged in wood therapy fashioning post caps to complete the fence. Therapy was required because this morning Spencer’s oncologist let us know that the scans show new spots. New spots aren’t good. I didn’t even like the old spots. I definitely don’t like the new spots. So it’s a bone marrow biopsy, a new line, and some fresh chemo coming soon.

I think I’ll go back to Dick’s. Surely they have something at Dick’s that can fix this once and for all.

Monday, September 19, 2005 11:56 PM CDT

More Desolation

We didn’t have to kill anything.

But we did of course.

Now there were a few things that we spared. At Savary Island, the big red jellyfish were the boys’ intended targets. But somehow the water had cooled off by this late in the year. There were no jellyfish to be found. Which was good. Murderous boys put their energy into building a cabin out of driftwood instead.

The prawns weren’t so lucky. We caught many of them in and around Tenedos Bay. And the boys twisted their little heads off and we skewered their bodies for the barbeque. One was spared. Full of eggs, my friend Al decided that in the interest of conservation and setting a good example for the boys, it should be thrown back to the deep. It was a good lesson, but I still insisted that Al would eat one less than the rest of us. There is price for every lesson.

The big rock cod? Dead. Left to die in the bucket till we returned to the East Wind where we introduced it to a sharp fillet knife. Fillets for dinner. A head for the crab trap and the rest as halibut bait.

The halibut were somewhere else, however. Or at least they choose to grace the hooks of fisherman smarter than we. In their place, dogfish: large mudsharks. At least 5 of them. We didn’t kill them though. And by the time we caught the third one, exact same size as the first two, we started to wonder if perhaps it wasn’t a single specimen with a serial propensity for a painful elevator ride 200 feet to the surface. “Could they really be that stupid that they would bite the same hook over and over again?” Spencer asked.

“Please Spencer,” I cautioned, “don’t call them stupid. Stupid is not a nice word. This dogfish is cognitively challenged.”

“Could it really be that cognitively challenged that it would bite the same fish hook over and over again?” he queried.

“Spencer, you understand that by using a politically correct term like ‘cognitively challenged’ that you are really just attaching a new label to the same thing and over time it will come to have exactly the same meaning with all the same connotations and that you end up being just as politically incorrect but now you are doing it with a fancy five dollar word? Would you agree Al?”

“Yes. Give me another chunk of bait. I want to catch another stupid dogfish.”

We caught him a few more times and returned to East Wind as the sun was setting. And while we were gone – much excitement. Foster and Hadley were jumping off the top deck into the water. Foster took a step backwards and did a little bounce off the lower railing and landed on the lower deck. He was OK though. And Spencer didn’t ask if he was cognitively challenged.

And the cod head we converted to 5 Dungeness crab: 3 females and 2 undersized males. We threw them all back.

We’re not really the killers that we think we are. We just like to believe that we are dangerous and manly with a hint of recklessness and a bit of a fishy odour. We think that Tracey and Sue find us irresistible that way. But I suspect perhaps they just like us to go away in the dinghy so they can enjoy some peace.

Finally, we killed a fine bottle of ice wine and about a pound of the delicious dark chocolate almond bark from the general store at Squirrel Cove. And so ended 3 days of death and mayhem with good friends in that little dream they call Desolation Sound.

OK. Now I’m ready for fall.

Tuesday, September 13, 2005

Of Chickens and Goats

I see I am lagging behind on my updates. I forget that we tell people we are going for scans and thus sharing the anxiety, but not the outcomes.

Well we went for the PET scan and CT scan last week. The scan itself was a piece of cake. Just a hit of radioactive sugar and then I read Harry Potter aloud while Spencer lied motionless in the machine.

The scan has been reviewed, and the radiologist is scratching her head. Spencer is only the fourth kid in BC to have a PET scan and the only one with Neuroblastoma. The problem with these things is that it is a bit like killing a chicken and spreading the entrails on a stone altar to predict if the crop will be good this year. It is all visible right there before you, you just need to have the right knowledge base to know what you are looking at.

So the PET scan shows a couple of the spots that have been present for ages. Now the question is what does it mean? The plan was to repeat bone scans and MIBG scans at the end of this month. Now they have decided they would like to move these scans up so that they at least correspond closely in time with the PET so they can cross reference them and establish a baseline.

It's like killing a chicken this month and a goat next month and getting different results. Is it because goat entrails and chicken entrails tell a different story? Or have the gods intervened in between and the story has changed? So you have to kill a goat and a chicken together and then compare it to what happened when you killed the chicken at the last full moon.

Hmmm. I can see I headed down a very bad metaphor path.

Anyway, another radioactive injection next Tuesday. This will be followed by MIBG scans on Wednesday and Thursday. Then different radioactive stuff on Friday morning with a bone scan immediately after. Then a meeting with Dr. P early the following week.

So that ought to raise your anxiety level. But not nearly as much as it would be if you were a chicken or a goat.

Pray for a good crop.

Steve

PS: The boys started school last week. All is well. Spencer has the good fortune to have a male teacher this year. Not that men are better than women. It's just a whole lot easier to hear a deep voice when you have a lot of high frequency hearing loss. And of course this weekend there was hockey. I took the six o'clock shift on Saturday. Tracey did the the 9 o'clock soccer and the Sunday hockey. I worked on the fence. Spencer's soccer hasn't even started yet, so things could get very busy. Thank God Scupper hasn't taken up any sports yet.

Tuesday, September 13, 2005

Tuesday, September 9, 2005 10:35 PM CDT

Misguided Puppy

Scupper trusts me. He is certain I would never do anything to harm him.

Poor misguided puppy.

Tonight the wasp was circling around his food bowl. Rather annoying. But I was rather too lazy to get up and do anything about it. So like a good couch potato, I used remote control.

"Scupper! Go get it!"

He sprang up from his nap knowing that the family was imminently threatened by an evil cat, racoon, or burglar. Perhaps all three. He looked up to the ceiling to see if it was a cat.

Nothing there.

I pointed at his food bowl. "Go get it."

And so he started hunting with snapping jaws as he often does this with insects. He's never actually caught one.

Until tonight that is.

Now if I snapped at a wasp and captured it in my mouth, my next reaction would be a scream perhaps followed by tears. I guess I never realized it,but dogs apparently neither scream nor cry. But they do spend many minutes snapping their jaws and thrusting their tongues when wasps sting them inside their mouths.

Poor misguided puppy. I'm afraid he'll be no use in the PET scan tomorrow.

We'll have to rely on the machines. And of course, a radiologist will do a better job than Scupper of interpreting the results. I'm sure Spencer would rather have his ear licked by Scupper than be injected with radioactive goop and lie perfectly still for a few hours while machines whir. But so it is.

Tuesday, August 30, 2005 0:39 AM CDT

They Called Today

Summer is a busy time. There is much to do. One thing after another. There is camp. Boat weekends. Vacation and various things.

I’ve kept busy. It’s good to keep busy. And then after we came back from sailing, I felt a deep sense of uneasiness. My concentration was shot. My productivity was falling. I knew it was coming.

But we can’t give in can we? Have to keep busy. So I called in the bin. Demolished the fence and set about keeping my hands occupied with 4 tons of granite while we waited for the phone call.

And then in a moment, there was a message on the machine and summer was over. Not really over. Just the carefree fun part where you believe it might go on forever.

I can’t believe they don’t talk to you personally or even send something in writing. Just a message on the machine. You expect the worst, but in the end it is never quite as bad as you think it might be, even though it is bad.

“Hi. This is Darren from Poco Minor Hockey. Just wanted to let you know Foster’s ice times. He starts Sept 10 from 6 am to 7 am on Poco Blue & then Sept 11 from 8:45 to 9:45 on Poco Green...”

We were expecting much worse. I think I’ll volunteer to take him to the Sunday games. That way it won’t tie up a whole morning for Tracey.

Sunday, August 28, 2005 10:00 PM CDT

About Four Ton

“I’m building a retaining wall and I am looking for granite.”

“Sure we got four to twelves. It’s good for retaining wall.”

“OK. I’ll need about a ninety square feet. What would that cost.”

“Square feet? It’s sold by the ton. Let me see. I’ll have to do a little figuring.” So I waited will he did his figuring. It took a little while. Precision calculations require some thought. “Yah, about 4 ton should do it. It’s sixteen dollars per ton.”

“Do you deliver? I live in Citadel Heights in Poco.”

“Sure we can drop it off tomorrow.”

So addresses and credit card numbers followed and soon I was the proud owner of 4 “ton” of granite rip rap. Since I don’t normally order commodities over the phone I was a little unsure of what to expect. “How does it ship? Is it on pallets or something?”

By now he was quite certain that I was some kind of residential home owner who had gotten his number by mistake. Obviously not a landscape contractor. “Comes in dump truck. Regular dump trunk. We can put it anywhere you want.”

This was magic. On a square foot basis, solid granite is a cheaper than a wooden fence. Since I didn’t want the lawn destroyed, nor did I want to carry it around from the driveway, we had them dump it on the road.

4 tons is nothing when you say it fast. But now that I’ve laid about a ton and half in, my muscles are starting to understand that this is not 4 tons of granite. This is eight thousand pounds of granite. And most of the “twelves” are more like twenty – easily a hundred pounds each. And I’m not sure that after I pay for the physiotherapy that this will be cheaper than wood.

Tomorrow, I’ll make Foster do all the lifting. I’ll be the supervisor.

Saturday, August 27, 2005 9:58 PM CDT

My Neighbours are Fearful

Our fence was deemed to be unfit to last another winter. So we decided to demolish it.

The big orange bin arrived Friday night. Foster wanted to be in on the demo so he made Spencer and me promise that we wouldn't take the fence down until after he returned from a birthday party.

So Spencer and I decided we would just remove the gate and diagonal bracing that kept it straight while Foster was at his party.

Unfortunately, temptation and a sledgehammer are a bad mix.

Spencer took one swing and four panels came crashing down. I think it speaks more to the decay of the posts than the strength of Spencer. Foster came home and took out the remaining two panels.

So I've decided I never want to replace this rotten fence again. So we are going to order a few tons of granite and build a rock wall around steel posts with an artful lattice cedar fence on top of the rock wall. No more rotting in the dirt. It will be the nicest fence in the neighbourhood.

Foster and I put in the last of the steel posts last night. As we were getting ready, Foster decided to bring down a bag of concrete from the shed. I didn't know that 7 year old boys can carry 55 lb bags of concrete. But they can. So all the steetside posts are now in place.

I may have a vision, but the neighbours can only go by what they see. So a few of them are asking what colour of chain link we are going to install.

I'm happy to leave them in suspense, but Tracey tells them the truth. Perhaps I'll surprise them all. Does anybody know where I can get orange vinyl coated chain link?

Sunday, August 14, 2005 3:39 PM CDT

Good to be Back Home

Snug Cove, Plumpers Cove, Gibsons, Port Stalashen, Smugglers Cove, Secret Cove, Buccaneer Bay, Jeddediah Island, Schooner Cove, Newcastle Island, Nanaimo, Telegraph Harbour, Ladysmith, Montague Harbour, Ganges, & Otter Bay.

Scupper had a full woolly. And on the docks, people would ask “What is it?” Not “What breed is your dog?” or “What kind of a dog is that?”

Just “What is it?”

“It’s a dog,” I would explain.

And every day the boys swam. Well almost every day. Sometimes with wetsuits and sometimes with nothing. At Uncle Ernie’s in Ladysmith the water was 70 degrees. And the chicken was tasty.

And mostly the wind was with us and the sailing was good. And there were dolphins, seals, otters, gulls and eagles. And on Jeddediah, there were wild sheep left over from the Spaniards visits in the 1800s. They made Scupper look positively well groomed.

And then there were the prey species. Rainbow trout, rock cod, Dungeness crab, prawns. But no salmon. We decided to give them a break this year. Or they decided to give us a break.

And midway through the trip as the boat grime built up, we checked in to the hotel at Schooner Cove for a night. They had electricity and hot and cold running water and huge beds with clean sheets. But best of all, you could catch cod fish from the balcony. Not that they encourage this. But there is no denying kids who have fishing rods.

Buccaneer Bay at low tide is like no place else on earth. With warm tide pools and huge sandy beaches. And dogs playing volleyball with balloons.

Cracking crab in the cockpit, dipping in hot garlic butter, and throwing the shells overboard as the setting sun reflects off the greasy wine glass – that’s living.

We never heard the words, “I’m bored.” At least not from Spencer. Not with the new Harry Potter in his hands. And we are not sure, but Foster might be growing gills.

Good as it was, it’s nice to be home. Except for the 14 loads of laundry.

I mowed the lawn. I mowed Scupper. And I washed Tracey’s car with the only soap that was handy: Hartz Groomer’s Best Conditioning Shampoo.

And tomorrow, we’ll try wearing shoes again.

Saturday, August 13, 2005 1:46 AM CDT

We're back. We had a wild time. Though Scupper found the whole thing boring. I'll write more later...

Friday, July 29, 2005 7:37 PM CDT

We're sorry. Your web browse could not be completed as clicked. The Dolling family has gone sailing. Please check the web address and try your surf later.

Thursday, July 28, 2005 0:22 AM CDT

Harvest Moon Beige

I found it a little disturbing. Foster was wearing my new hat.

It was a Mackinac hat. The red Mount Gay Rum version. There were only two of us in the ’05 aboard Outrageous who got them. It was quite a treasure. It already has close to 600 nautical miles of sweat and sunscreen embedded in it. It had quickly become my favourite.

And somehow Foster had got hold of it. And he wore it all day long.

Which wasn’t really the disturbing part. It was really kind of cute. He liked it because it was my treasure.

No the disturbing part was that it fit him well. I tried it on again – I have a large head – no need to adjust the strap. Foster’s head is huge.

So Spencer and I started in with thick Scottish accents: “Oh my God! It’s huge! His cranium is massive. It’s like an orange on a toothpick! It’s so large it has its own weather system!”

When I came back from the race the boys had collectively put on 13 lbs. Spencer was up to 64 lbs. Foster is up to 64 lbs. Scupper is up to 62 lbs.

And Tracey was up about 1395 kg.

Oh wait. That’s not exactly fair. With the trade-in, she was about even.

Her mother had decided to fix the problem with her old car. I came home one day and Tracey said I had to call my mother in law. I thought she was going to be mad at me for the things I said about her perfume choices. She forgave me for that. And then she went on, “Now son-in-law. We’ve decided that we are going to give you some of your inheritance a little early,” she paused for a long time, “I want you to stop wishing that I was dead.”

When Tracey test drove them, the automatic was very smooth. But it was obvious she wanted the 5 speed before she even hit 3rd gear. And so it happened.

Her mother thought they were buying Tracey safety and reliability. And they were of course. But what she didn’t know was how long Tracey had been dreaming about this particular car. It was absolutely out of our reach getting by on one income with other priorities in life. Just a dream. But now it’s reality. She went with Harvest Moon Beige with the black top. Tracey was very happy.

And I thought about it. Maybe it was all about reliability. Or perhaps getting rid of those unpredictable random repair bills. Improved safety? Maybe it’s about a mother and father doing something wonderful for their daughter who hasn’t had a break in 3 years. Maybe someone was smiling down on me and decided I no longer had to drive the thing with the worn seat cushion and the metal bar that digs into my butt. Style? Joy? Maybe it was reassurance that things can still move forward in our lives and not be stuck in neutral or reverse. Perhaps all of the above.

But I was over thinking it.

No the real issue is that to look really cool, it’s important to have a car that matches your dog. That’s what it is all about.

I thought he was black and white. But now I know Scupper is black and Harvest Moon Beige.

Steve

Tuesday, July 12, 2005 2:01 AM CDT

I didn't do so well at the Volkswagen dealer. They wanted to charge me a lot of money to do work that they couldn't explain to me. So I paid them $106.41 to put down their tools. I had the car towed to a nice honest mechanic that runs his own shop. Now I'm a happier man. But it is not cost effective to buy a new car one piece at a time.

For Sale
1988 VW CABRIOLET

• Azur Blue Ed.
• 173,000 km
• 1 Owner for 16 Years
• Dealer serviced
• Extra Alloy Rims & Snow Tires
• New Water Pump, Power Steering Pump, Timing Belt & Fan

$4,500

Tracey made me put the words "Really Cute" in the Buy & Sell ad. I think she understands the target market better than I do.

Wednesday, July 6, 2005 11:10 PM CDT

I know my response was inappropriate. There is a wide body of material that explains how you are supposed to feel. The popular media: books, television, and what have you explain how it is supposed to be. But I am not a proper father.

I felt none of the feelings I was supposed to. I did it cleanly, effortlessly, and without emotion.

I sent my kids to camp without a bit of anxiety about how they would get along. No tearful departure. Just a see you later, we’re off to the marine store and dinner at Horseshoe Bay.

And so they boarded the yellow bus and went off to Camp Goodtimes.

And now I miss them.

And I was unprepared for it. But I’ll get over it.

We are having date week. Though there are those that would argue that it’s not the height of romance.

Monday night we installed the new dodger. It’s a cover shelter thing that goes over the entrance hatch on the sailing vessel Snapdragon. Install night has none of the thoughtful creative work that went into building it. Install is all about getting the thing into place with no gaps and screwed down tight before the 3M 4200 super sticky marine adhesive decides to set. It’s a flurry of activity with large amounts of profanity.

I found it immensely satisfying.

Tracey didn’t. She described it as a lot of “F” ing with no satisfaction. But she didn’t say “F” ing. She said things that wouldn’t make it through your spam filter.

I talked to my mother in law on Tuesday. She liked the pictures of the new dodger. She laughed at all the “F” ing. And she shared a story with me about the new perfume that she bought. It’s called Fcuk (not a spelling error). She wasn’t sure how to pronounce it, but she liked they way it smelled. Apparently it’s a perfume that can make it through your spam filter. I know how to pronounce it and offered to help her. She declined.

I’m very uncomfortable that my mother in law’s favourite new perfume is called Fcuk. I’m not sure why. I don’t think you should be buying perfume called Fcuk when you are on your 4th artificial hip. I guess that’s my hangup.

Anyway, last night we went to a great movie.

And today, Tracey’s 17 year old Volkswagen convertible, which she makes me drive on rainy days, broke down in the middle of Broadway. The nice BCAA man determined that the no spark was present at the plugs, and nothing was going into the distributor. He arranged for the tow truck to come.

So I hung out for an hour and took the Skytrain back to work.

And now the car is at a Volkswagen dealer waiting for them to assess the damage and tell me how much it will cost. I love Volkswagen dealers.

Oh Fcuk.

Tuesday, June 28, 2005 1:31 AM CDT

Mini Donuts

We passed a milestone a while back. Foster now weighs more than Spencer. But he is three years younger. Not the sort of milestone you want to have for 7 and 10 year old boys. Especially not when Foster doesn’t have an ounce of fat on him.

But Spencer has been eating very well lately, and I thought my skinny boy might be regaining his position. So last night I weighed the boys.

Spencer: 59 lbs
Foster: 60 lbs
Scupper: 58 lbs

Pretty much a dead heat within measurement error.

Today was the first day that Spencer was allowed to swim after having his central line removed last week. So guess what they did today? Yes. Swimming.

And tonight we had free baseball tickets from the Starlight Foundation. Yes. Free. So I paid for parking. And the boys found the mini donut concession. And cotton candy. And more mini donuts. And soft drinks. By the end of the third inning I was down 45 dollars. By the fifth, I had to find the bank machine. So I treated myself to beer and peanuts and had plenty of cash left over for the boys to buy more mini donuts. They were gone a long time. The cashier was out of five dollar bills and made them wait. They were rewarded with a free bag of mini donuts for their trouble. All sugar and cinnamon and toasty warm fresh out of the fryer melt in your mouth sort of mini donuts. Four dozen they ate.

And the game was good. Mostly because it is nice to sit on a summer evening in a ball park without a central line. And when your bony but gets sore from the hard seat, mom’s knee is a comfy place to sit.

Five two was the final score. Vancouver lost to the Tri Cities. I wish I knew which three cities. When we got home, it was way past bed time, but not too late for me to demand an evaluation of the return on my investment. I made them get on the scales.

Spencer: 60.5 lbs
Foster: 62 lbs
Scupper: 59 lbs

Where the hell did Scupper get the mini donuts?

Friday, June 24, 2005 0:41 AM CDT

Things I Learned Last Weekend

1. Things go more smoothly when you don't drink too much wine, your push rod is long, and your fid is slippery.

2. A bit of lubricant helps ease the butt joint through the sheave.

3. Get the mix right and your shoes won't stick to the floor.

4. If the gas leaks out, have another go at the fittings.

5. And finally, if things go badly wrong, it's really nice to have an extra long pole with a hook on the end.

Wednesday, June 22, 2005 11:51 AM CDT

I thought I'd update you on Spencer.

We met with our oncologist and his MIBG is slightly improved from March with a small area adjacent T4. The bone scan is stable showing uptake in his upper spine, but the radiologist feels this is damaged vertebrae from the cumulative radiation. There is a huge resolution in his disease since the allo transplant in Jan/05. His bone marrow has remained clear from Sep/02 - to date.

He has started on accutane, 2 wk pulse doses for the summer. Today he is having his central line removed. The plan is to have a VAD placed in Sept with more cyclo / topo alternating with accutane or a more aggressive schedule of chemo should he get disease progression. We are happy that he will get a break this summer and be able to swim and be a kid again.

Spencer has been doing the "happy dance" all morning since hearing that his line will be removed today.

Look out water parks, oceans, lakes, pools.... here we come!

Cheers,

Tracey and "all the boys"

Shark Boy & Lava Girl

"So do you want to come out to the garage when we're finished dinner and help me build the chairs?"

"Sure," said Spencer.

"But you'll have to be a little patient. I'm building them from plans and I don't really know what I'm doing so it will take a while to figure it out," I said.

"Dad, don't you find it a little unusual that when you have plans it slows you down, but other people would have to have plans to even build something in the first place?"

"Hmmm. Yes I suppose it is a little strange."

But we had Scupper to help. A few hours later he was covered in a fine coat of red cedar dust and the chairs were complete and ready for a coat of stain.

It's a busy week. At least we keep busy. The go-kart was exercised though one of it's drive pulleys split in two so the other one spins on any sort of incline. So mostly we parked it on the ridge at the park and fired off tennis ball rounds from the 60 mm air cannon for Scupper to retrieve. It's only a matter of time before we are arrested.

And speaking of law enforcement, the boys went to meet with Spencer's Cops for Cancer Buddy. They toured the Vancouver Police station, got to see inside a paddy wagon, drove at high speed in a police car with the lights on
and came home with loads of goodies. We mustn't tell Will, but they liked the Vancouver tour better than the Burnaby RCMP detachment.

Tonight was the end of T-Ball. The final game in the regular T-Ball season. Foster ran the final leg on the round the bases relay and once again assured victory for his team.

And of course with the end of T-Ball we must prepare for hockey. Today,the boys went to the hockey store thingamagigy and purchased all the gear required for an ice hockey season with the exception of a jersey and skates. Those will come later I'm sure. What you have no way of knowing at this point is that somewhere after writing about T-Ball but before writing about hockey a large quantity of wine went missing.

There is something wonderful about sitting on the patio and just chit chatting over a glass of wine. Especially with the new chairs and the pergola whatchamacalit thingy overhead with the glowing candle lantern hangy bits. This week marked a watershed for us. Tracey loves
Bin 65. And the Bin 65 comes in 1.5 litre bottles instead of the usual 750 ml, so I decided what the hell let's go for the big bottles who are we fooling anyway?

But alas, I digress. Foster now has the whole suit of hockey gear that hangs on a tree like a suit of medieval armour. He couldn't be more happy. The gear was all used. Except of course for the helmet, which you have to buy new. And interestingly, they discovered a new jock strap which is sort of built into a set of ventilated boxer shorts with Velcro hangers for the hockey socks. But this is really far more information than you wanted isn't it? Anyway, he wore the new jock to T-Ball tonight which was really nice because then he didn't have to run all bowlegged. There was a bit of disappointment when I told him he couldn't sleep in it. Oh,now I've really shared more information than I should have.

Oh well. So now the MIBG scan is done. We just wait for the call.

I know what this is like from the parent's perspective. I wonder what it is like for the oncologist? Do they go out on their patios and drink large quantities of wine? I don't think this is easy on anybody. But if we stay busy, life's turning points can be lost amongst the trivia and somehow we can get through the next day. So tomorrow it's Shark Boy and Lava Girl.

Onward and upward. I'll press send before I'm sober...

Tuesday, June 7, 2005 12:44 AM CDT

Today Spencer goes hot. He gets an injection of MIBG.

Wednesday and Thursday he gets scans.

Monday is bone scan day.

My anxiety level is low.

Low relative to being trapped inside a burning building.

Sunday we had friends over after the Childrun.

They brought their standard poodles.

Monty is just a puppy.

Monty did things in our living room that make Scupper's worst behaviour seem benign.

Wednesday, June 1, 2005 1:49 AM CDT

It’s been a while since I updated. I was away in Denver for one week and Chicago for another. Naturally, I happened to leave town the week Spencer started chemotherapy and then I was gone for the week after when his counts hit bottom. But I had to go. It was serious business.

I very nearly got caught. These things can happen when you forget stuff in your pockets on the way home. Thankfully, I was clever and managed to find the evidence before Tracey did: a 7 foot long sail tie stuck in my pocket. The kind of sail tie they have on large sailboats. But it was never discovered so I didn’t have to explain. I couldn’t help it if a business partner wanted to go sailing. Sometimes you have to do these things even if a 40 ft Beneteau is a less than ideal meeting room. And it’s not like we weren’t working. I scribed meeting minutes on the back of a bar bill.

When I returned home Friday, the weather was brilliant. Since I had missed Victoria Day, we decided to celebrate Memorial Day and take the American long weekend instead. John & Leanne sailed Snapdragon downtown to Granville Island on Saturday. We boarded that afternoon stayed overnight downtown.

I like Granville Island early on a Sunday. Usually it is packed, but at 7:00am it’s peace and tranquility. Scupper checked out all the sailboat listings at the yacht brokers and found several that interested him. Wandering back to the boat we picked up a couple of lattes. I had one for each hand and no hand to spare for a leash. So I clipped his leash to the waistband of my shorts. This worked brilliantly. Right up to the point where Scupper wanted to run off and greet the dragon boat racers doing their warm up exercises. He very nearly greeted them with my shorts in tow.

Spencer’s friend Michael joined us for an overnighter. His mom was a little nervous about the idea. It’s probably best if we don’t show her the picture of three boys sailing a small boat by themselves amongst the freighters in English Bay. Not that it was completely irresponsible. They have 25 years of life experience between them. The skipper alone has been sailing for ten years.

We sailed under spinnaker to Bowen Island and were extremely busy doing not much of anything for the rest of the weekend.

Today Spencer was back at clinic. His platelets are a bit a low.

The bleeding tonight was rather impressive. I was a bit worried. The blood all over the garage floor was OK. It was the blood on my workbench that had me concerned. I was afraid it might stain the beech wood, but a nice coating of wax pays dividends. I should know better than to try to cut his toe nails. Though for the life of me, I don’t know why they put blood in toe nails in the first place. But his haircut looks nice. Now Scupper is ready for summer.

Sunday, May 22, 2005 1:03 AM CDT

Ooops. I had a dinghy accident.

In the fullness of time, I will be forgiven.

The problem is when it was followed by an outboard accident, it was a little suspicious.

Also sailkit accident. And inflatable tube accident.

Pretty much a full marine catastrophe.

Thursday, May 12, 2005 11:24 PM CDT

Major Milestones for Mother's Day

Hmmm. Let’s see. It’s been a busy week.

Now that Spencer seems to be on the road to recovery, it’s time to hit him with more chemo. A little topless cyclone is the plan for next week. I do hope he starts eating seriously again soon. Foster is rapidly catching up.

On the home front, we completed the pergola in time for mother’s day. It’s all planted now. We decided we are not skilled gardeners so we bought at least twice as many vines as we need. A couple grapes, two clematis, and a jumbo wisteria. We’ve done our part. The rest is up to Darwin. We’ll check again next year and see what is still living. I sure hope my grapes triumph over Tracey’s wisteria. I want to do shade in style.

There does appear to be at least one green thumb in the family. Foster checks his garden every day and waters it religiously. It seems like we only planted it a couple of weeks ago, but tonight we had fresh green onions in our salad hand picked from his garden. He’s very proud.

Ah yes and we are deep into spring now. The height of t-ball season for Foster. And both the boys had the road hockey net out the other night. I always thought road hockey was driven by the vicarious glory of the NHL playoffs, but it appears that it might actual be embedded in the genetic coding of Canadian boys.

And on another athletic milestone, Foster received his 80 km ribbon for running this year at school in the Kilmer Kilometre Klub. No, that is not a spelling error. He is an overachiever in the KKK. I like the notion that he goes to a school that is so far on the side of innocence that they embrace the alliteration to the point of overpowering the spelling without even a thought of unintended political incorrectness.

Oh yes. And while we are on milestones, there was a big one today. Spencer has entered the realm of double digits. He turned ten. Happy birthday Spencer! Big party tomorrow at the movie theatre and then six boys are coming for a sleepover.

Tuesday, May 10, 2005 1:11 PM CDT

Learning life lessons from a brave little boy

By Alistair Waters

Kids can teach us a lot. In your typical school setting, you have an adult teacher helping children learn. But outside of school, especially in difficult situations, it is often the young who teach the old.I know such a kid.His name is Spencer. He’s nine years old. But while he’s just a child, when it comes to bravery, he knows what it means to be a man.Three years ago, Spencer was diagnosed with neuroblastoma, a particularly aggressive form of cancer that hits children hard and has a high mortality rate.But Spencer, despite his quite, almost introverted, disposition, is a fighter. For a third of his life he has fought off the disease and I have no hesitation in thinking he will beat it.But the journey he has been forced to take is one that I don’t know if I could endure. He has had his stem cells replaced, is currently living with his little brother’s bone marrow after a transplant earlier this year, he has had more chemotherapy and radiation treatments than I thought was possible for a full-grown adult, let alone a child. His daily cocktail of medication—including at one time the biggest pills I ever saw—appears to the uninitiated to require a degree in pharmacy to understand.To hear his parents discuss the next dose he must have injected into his small body through catheters implanted in his chest is like being a fly on the wall of an ER. But Spencer rolls with it.His parents tell me there are good days and there are bad days. Like any of us, he has his moments. But that doesn’t make him weak, that makes him human.He is a little boy with a big job to do, a job that makes all others pale in comparison and he continues to do it—everyday.For Spencer, his parents Steve and Tracey and his brother Foster, life is lived for the moment. Planning is done a week in advance, not a month ahead.The rollercoaster of emotion dictates they all seize the day. With that in mind I decided earlier this month that I would do the same.The hospital where Spencer has spent so much of his time, Children’s Hospital in Vancouver, annually holds a special event that allows people all over the province to show their solidarity with the very special kids that call the cancer ward home for varying lengths of time.The event is called Balding for Dollars and, as the name implies, it requires the loss of hair.Now given there is an increasingly large part of my scalp that is already follicley challenged, the thought of shaving my head holds little fear for me. I’m thinking of it as a test run for the day when the choice comes down to the combover or the razor.When I told Spencer I planned to shave my head and would look like him, he seemed slightly surprised.“Really,” he said.“Really,” I replied.The guts it takes to shave your head is nothing compared to the bravery shown by kids like Spencer and all the other children—and adults—with life-threatening illness. But if it can help make their life any easier, it’s worth it.

Alistair Waters is the assistant editor of the Capital News.
awaters@kelownacapnews.com

Appeared in the Kelowna Capital News April 12, 2005

Friday, May 6, 2005 11:17 PM CDT

A Taxing Situation

This week was tax week. I like to plan well in advance for taxes, so I started a full three hours before the filing deadline.

There were two tax returns to complete. Somehow Tracey managed to get some work in last year while still managing to be at the hospital 137 days with Spencer.

I joke about incarceration, but the whole medical thing really is a serious commitment of time and money.

And speaking of money, I do want that dinghy so I was determined to be aggressive about claiming all the expenses related to medical care. Now I think you are supposed to read the guidelines and fill out all the forms appropriately, but I was in a hurry. So I just added it all up and tried to stuff it in the right fields in the Quicktax software using the hearsay of cancer moms at the clinic as a guideline for what is allowable. Always get the best professional help you can.

It turned out a bit messy. It wouldn’t let me claim the childcare expenses and insisted that they go against Tracey’s income. Rather unfair. If we lived 5 km further away from the hospital we could claim our travel expenses, parking, and $45 a day for meals. Aggressive is good. Fraudulent is a problem, so I didn’t want to stretch it. In the end, I stuffed in all the reasonable expenses. It didn’t seem to make much of a difference at all in the amount of tax I paid. Only a tiny fraction of a dinghy.

I duly filed by the deadline and we resolved to have it all reviewed by an accountant to see if he could get us more.

So Tracey spent an hour or so chatting with an accountant getting professional advice. He suggested that it was a really bad idea for Tracey to work unless she was going to work a lot because we would get no benefit from the daycare costs. If you are at the hospital with kid number one and leave kid number two at daycare, childcare is not deductible against the higher income. If Tracey happened to be in prison, then the childcare expenses are fully deductible. And the prison would be five kilometres further away from the hospital... So from a tax standpoint, Children’s Hospital is actually worse than incarceration.

We decided not to have the accountant review the last three years of taxes. It would cost us a quarter of a dinghy and he doesn’t think he could get us back much more than a dagger board and a set of oars.

But I think I will have Tracey re-file her taxes and make a fraudulent claim. She’ll get a light sentence and I’ll get the tax benefits. Yes I can see a dinghy in my future after all. It just takes a little more advance planning.

Tuesday, May 3, 2005 1:09 AM CDT

Spencer was in clinic today. They have decided not to give him any more irenotecan. It just wasn't a lot of fun for him. Next week they will probably start him on either topotecan (chemo) or retinoic acid (acne medication). These will be more fun for him. Because after all, cancer treatment is all about fun.

He has not yet resumed full and active eating. He has a a few bites of different things here and there. His weight has not dropped significantly since discharge, so we will carry on with the buffet open all day long.

This weekend we had a reaction to all those inactive days in the hospital. I cleaned all the black mould that I could find on Snapdragon. I rented a post hole auger and Tracey and I drilled five 8" holes around the patio. Spencer went to a friend's birthday party and went bowling. Foster, Spencer, and I filled the holes in the backyard with cedar posts and concrete. We now own a new lawnmower. Home Depot owns our old lawnmower. We sailed the Snapdragon to Bowen Island and had dinner at Doc Morgan's. The lawn got mowed. Scupper got tired. My muscles ache.

Today on the way back from clinic, Spencer and Tracey got some pizza. Spencer had a few bites. They stopped at the movie theatre for a little planning for Spencer's birthday. They left the slice of pizza in the back seat of the truck. When they got back to the truck, the rest of the pizza was gone. Scupper had little bits of red sauce around his mouth. I do not know what happened to the pizza.

Sometimes space aliens steal things out of parked vehicles.

Thursday, April 28, 2005 1:48 AM CDT

The Space Aliens Return

I was wrong.

I recognize that now.

I was pretty sure that Scupper had disabused himself of the notion that space aliens are a credible explanation for canine misadventure. But he actually still thinks that we believe in space aliens. He probably sees them all the time. At least it’s easy to convince a stranger of that.

It’s pretty fun to take Scupper out into the open at the park or a soccer field in front of an audience and say the words, “Scupper, where’s the cat?!” He immediately looks towards the sky and starts barking as though cats come from the sky. This seems a little strange unless you come to our house on a cold winter morning and look up at our skylight where a fat orange tomcat often lies down to warm his belly.

But I digress.

As I was driving into the driveway tonight, Foster was shouting into my car window, “Scupper ate the chicken! He ate the chicken and now we have to have hamburgers!”

“Slow down Foster. What chicken did Scupper eat?” I asked.

“The chicken that mom was going to feed us for dinner. He stole it off the counter!”

“Don’t tell stories like that Foster. My Scupper would never do something that naughty.” I explained as I was thinking how low I would have to reduce the price.

“He did. He did. He ate the chicken ask mom!”

I went inside. Tracey’s story was remarkably similar to Foster’s. Apparently our boy reached up on the counter and plucked a full breast of chicken out of a Tupperware container. He didn't even move the container. Everything was unmolested so we would think the space aliens did it.

Nobody witnessed the deed. He almost got away with it. Tracey was counting her breasts and noticed she had two, one short of a full compliment. This confused her and she held up the container and looked towards the boys and the dog in the living room to make inquiries about her breast reduction. Scupper saw her with the container and bolted for his box in the family room.

When I went to chat with him he was sitting in his crate with a Tupperware container with two chicken breasts sitting in front of him to make the guilt sink in. I am not sure what was going on in his mind. He was probably thinking that he would like space aliens to take them away or else have me open the door so he could finish his snack.

Poor guy. He probably misses his Spencer. Or maybe it’s not quite so psychologically complex. Perhaps we should just remember to feed him now and again.

Anyway, Spencer had day parole again today. I had decided yesterday I would take him home whether or not they cared to discharge him from the hospital. So of course he spiked a fever. So we sit and we wait. And watch the antibiotics drip in. At least we had a few hours to go home, chase tadpoles around the pond at the park, and enjoy a nice salad with grilled chicken. Or was it hamburgers? I can’t remember.

Tuesday, April 26, 2005 2:38 AM CDT

There’s a quiet rage that burns within me.

OK. Perhaps that’s overly dramatic. Probably stolen from some literary type. But it is quiet. And it certainly has rage-like characteristics. Sort of that borderline kind of rage that has relatively high fear content. And it is within me because I haven’t shared it with anyone. As for burning, well actually it’s not really burning, but it’s definitely there. What the heck, we’ll run with it.

There’s a quiet rage that burns within me.

8 days we’ve been here. Sure there has been day parole. But at night we must return to our cell. The offense seems minor: a bit of diarrhea, some electrolyte imbalance, perhaps not enough eating and drinking. Every day we are on the edge of going home. And every day the parole officer says another day or two.

Tracey bears up better than I do. Saturday afternoon she threw a party on the patio. We filled the baby bathtub with ice to put the drinks in. Uncle John delivered a barbeque. Lonnie gave us two magnificent salads and the hospital foundation contributed a few dozen smokies for grilling. It was good fun. After a while the nurses ran out of patients on the inside and they came out to join us too.

One of the dads brought out his fold up cot to show me. He had found a solution to the folding chair “beds” and sagging roll-aways that are the lot in life for 3B parents. I wanted one for my cell. I went to Costco that very afternoon.

For two nights now we have had dinner parties at home with friends over. Wonderful warm breezes under the shade of the big umbrella. And each night one of us returns with Spencer to serve our time.

But this is all just interesting information. It has nothing to do with my burning rage-fear. The hospital folks are nice. And Spencer has dropped 3 kilograms, so I know they’re really just looking out for him.

No to find the source of the building lava dome, we must move closer to home. Right to family room. The epicenter of my nemesis. The habitat of the wooly black beast.

Some time ago, you might recall, the boys and I built Tracey a nice coffee table of driftwood, beach artifacts and memories to replace the 9th grade woodworking project that Scupper ate.

Early last Monday morning, Scupper was working out his plan for the day, figuring out just what he might do with himself while the rest of the family was away, and he hit upon an idea that was a stroke of evil genius.

He decided not to nibble away at the salty legs of the coffee table. That would be too obvious. But if he actually got up on top of the coffee table and chewed away at the inside edges, there is no way he would be able to trace it back to him. After all dogs aren’t allowed on the coffee table. We would be sure to think it was space aliens and never accuse him.

He managed to tear off a two foot long chunk revealing bright yellow cedar to contrast nicely with the weathered patina. On the north end, he chewed off a chunk of the inset seal bone. Funny how he left the dogs jaw on the south end untouched.

So Monday night, Scupper and I had a little chat. I think it is safe to say that he has disabused himself of the notion that space aliens are a credible explanation for canine misadventure. All I need to do is point at the coffee table and he slinks off shamefully to hide in his box. I’ve won this one. I know I have. He will never touch the coffee table again.

So off I go to sleep. Bedding down on my comfy new cot. Another night in my cell. And the wooly black beast is lying at home comfortably snoozing away. In my bedroom. Next to Tracey.

There’s a quiet rage that burns within me.

Friday, April 22, 2005 2:34 AM CDT

A local radio station is having a radiothon in the cafeteria at Children's to raise money for the hospital. They interviewed me and Spencer and asked us to drop by live. I dropped them the following note:

Dear Rock 101:

From Steve, Spencer’s Dad

You guys dropped by to chat with me and Spencer a while back. Sorry we didn’t have a chance to hang with you live today, but Spencer is back as an inpatient on 3B, the oncology ward.

I just wanted to drop you a note to let you know how awesome this place is and why people should pick up the phone and give you a call.

3 years ago this month, 6 year old Spencer was admitted to Children’s. We suspected that he had something more than the flu and that’s how he ended up here. In our worst-case dreams, we thought he might have something awful like leukemia. It turned out to be a lot worse than that. He was diagnosed with Stage IV Neuroblastoma. He had a tumor in his abdomen the size of a grapefruit with disease spread throughout his bone marrow with lesions on his spine, skull, and various other bits. That turned out to be a really bad day.

Now having a kid with cancer is a good excuse to stick your head in the sand and moan and bitch about how awful life is. But they don’t actually encourage you to do that here. Everyone, the nurses, the doctors, childlife people all treat you with a ton of respect and listen to you as a parent and as a child and help you realize that cancer is just part of life for your kid – it’s not everything, and it certainly won’t be the end if they can do anything to prevent that.

So Spencer has had a ton of treatment: Many rounds of chemo, a couple of surgeries, a stem cell transplant, radiation, and even some rather experimental drug therapies. But nobody ever told Spencer that when you are a sick kid you are different and need to slow down. So he’s carried on. He’s stayed near the top of his class in school. He rides his bike, plays soccer, hangs out with the dog, torments his brother and does all the usual kid stuff. I remember once one of the neighborhood dads saw Spencer playing road hockey with a bald head and asked when he had last had chemo – “about four hours ago” was the answer. Sure there have been some bad days, but believe it or not, we even have a ton of fun when we are stuck here in the hospital. This is a pretty unique place.

They encourage you to get on with life. I remember once Spencer was in clinic and Doctor Pritchard was looking at the unusual bruising under Spencer’s arms. We had to explain that while cliff jumping in Mexico he landed once with his arms spread out. She was mildly shocked. We decided not to mention the scuba diving.

So how does a kid with one of the nastiest cancers manage to wring this much enjoyment out of life? Yes they are good people here. But they also have some of the best treatment in the world. Spencer’s cancer has been under reasonable control since his first course of treatment. He suffers no pain from the cancer – the treatments are the hard part. There has been some back and forth but his widespread disease is now a tiny little spot. He had a bone marrow transplant from with his brother's marrow in January and they’re now mopping up the last of the cancer with a bit a chemo. No guarantees, but we remain hopeful as we have since that first day when he was diagnosed.

Thank God we live where we do and Children’s is our hospital. The doctors here are some of the best. They have brains & guts, and hearts 3 sizes larger than normal. And don’t even get me started about the nurses. They are our family.

But they need the equipment and funding and resources to be the best they can be. Seven out of ten of the kids who end up in the oncology program at Children’s Hospital, kick cancer’s butt. Pick up the phone. Let’s make it ten out of ten.

Thanks,
Steve

Wednesday, April 20, 2005 0:48 AM CDT

Reap What You Sow

It’s a funny thing when you grow out of your sandbox. No longer content to move piles of sand around with the toy diggers, you do new things like dig down deep. Really deep. Past the sand until you are mining strange new rocks.

That’s where Foster got to. He had me scared when he said he found “tiles” that were broken in little bits. I thought he had excavated and smashed up the drain tiles on the foundation of the house. Turns out it was only a few bits of concrete. But he had to be within a foot or two of the house electrical service.

So we decided that the sandbox had reached the end of its useful life. We talked about what we do. I suggested we rip it out and extend the grass. Tracey thought we could plant it as a garden.

And then I shared the story of the peas.

When I was a boy, I took some of the leftover pea seeds after my Dad had planted his vegetable garden. I planted them in two short rows at the end of one of Mom’s flower beds. I did nothing further until the end of the summer when I picked them and entered them in the fall fair in the kids vegetable category. I won first prize - the blue ribbon and a five dollar cash prize. I didn’t mention that there were no other kids in town who happened to grow peas that year. A prize is a prize after all.

Once we reviewed the theory of inflation, Foster understood that this was like winning $50 today. He was inspired. Anything with a chance of a financial windfall is interesting to Foster. So we decided to turn the sandbox into a vegetable garden. We did the calculations and figured we would need about 5 cubic feet of soil and agreed to go out and get soil and seeds next weekend.

Once Foster is inspired, there is no waiting. When I got home last night, he wanted to go out and get dirt. I had to think about it: wash the dishes or have a trip to Home Depot? It was a tough call, but I couldn’t deny my son.

Our calculations were wonderful except that they now seem to sell soil measured in litres. We went with three big bags. On the way into the cashier we happened to bump into seeds. So we picked up radishes, carrots, green onions, lettuce, and peppers. We managed to get the sandbox filled with dirt before bedtime.

Tonight was my night at the hospital. Spencer is still struggling with the whole eating and drinking thing, but seems to be steadily improving. He was feeling up to a game of Risk. I stopped by the nurses’ station and asked if they could give him some Gravol & Nabilone and threaten him with an NG tube placement while I went down to get a coffee. I hate to lose and look for any cognitive or psychological advantage I can get. He was unshaken and crushed me in the first game. I was coming on strong in the second when he declared bedtime just as I was about to take Africa and Australia. 9 year olds just don’t play fair.

We called home to say goodnight. Foster picked up the phone. Sure enough he had planted his seeds tonight. All of them. Enough seeds to fill ten sandboxes with lush vegetables. He has pretty much followed my lead and regards instructions on the package as useless verbiage for wussies who don’t know what they are doing.

I think I am going to have to find a fall fair where he can enter his potential prize winning vegetables. There are going to be a lot of them.

You reap what you sow.

Monday, April 18, 2005 1:46 AM CDT

Well it was a busy weekend. Tracey turned 40 and I shaved my head bald. But that wasn’t really my gift to her.

No. This year I went for romance. After replacing her belts a week or two ago, the newly tensioned belts did in the bearings on the water pump. So for Tracey: a new water pump. And because I have to take off the alternator and strip the car to bits to get at, might as well replace the power steering pump while I’m down there - it didn’t sound so good either. And while I was digging away to get at the bits, I noticed the timing belt wasn’t looking so good. So might as well throw in a new one.

I really had no idea what I was doing. That’s the nice thing about repair manuals: everything can be done in 8 simple steps. (which reference another 8 simple steps and so on…) It’s quite seductive. I have greasy fingerprints on five separate chapters. I was pretty much convinced that I could rip out the transaxle and replace the constant velocity joints and put new oil seals in the engine if only I could dedicate the whole weekend to the job. But of course, there were more important things to do.

My hair came out a lovely shade of green. The same brilliant green you find in that little flash on the side of the head of the male mallard duck. So we were off to Children’s to go and shave it off. After all, people had paid a couple of thousand dollars to have me do it.

Problem was we didn’t quite make it there. Spencer kind of lost his legs just as we were nearing the elevator for the parking garage. So Tracey got a wheelchair and we took the other elevator up to 3B instead. A little hydration for an hour or so and Spencer was more or less ambulatory with a wheelchair assist. So we went and shaved for the brave and then headed straight home with only a minor detour to try and find a timing belt.

Things didn’t go exactly as planned. Spencer never really picked up. Saturday night, he was admitted to hospital, and four bolt heads broke off on the water pump housing. Not that I grade these two disasters on the same scale, you understand. Figuring out how to drill out the old hardened bolts, find new bolts and a corresponding tap and on a Sunday, and then re-tapping the housing is no mean feat. Whereas Children’s is staffed up with experts and fully supplied 24/7.

So Tracey woke up to her 40’s in the hospital with Spencer. And rather than relaxing at home with dinner cooked for her, we had take out in the hallway at 3B. Seems to me we had her birthday here 3 years ago when Spencer was diagnosed.

And Foster and I got the car back together again, but they still haven’t figured out what’s up with Spencer. A virus? Last week’s chemo? Not really sure. He has a low fever and some pain in his back so they’ll keep an eye on him here again tonight and we will see what the plan is tomorrow.

Never a dull moment.

Why can’t we have dull moments?

Saturday, April 16, 2005 11:58 AM CDT

The dog got off easy. With his gastrointestinal issues, we felt it best not to expose him to any dyes that he might lick off and then eject out of either end of his body to the detriment of our upholstery. It is a shame. I was looking forward to him being blue.

It was fortunate that I renewed my passport in the small window in my life where I actually had hair and it was not yet a strange colour. Thank goodness they are going to mail it to me. I am not sure if they would actually give it to me if I went to pick it up with blue hair. Having photos taken with blue hair would have been a sure invitation to be interviewed by men in uniforms with rubber gloves at every border crossing for the next five years.

The truth is my hair didn’t really go blue. It was blue gel, but by the time it blended in with my yellow hair it sort of ended up a pastel green color. A little bit of Easter when I was really looking for Mardi Gras.

But team Spencer came through for me today. The boys came home with a bottle of Mr. Green Jeans Rock Star Hair Colour. It’s very vibrant. And very permanent. As I speak it is burning it’s way into my hair and beard and probably my scalp and face. Whoops. There goes the buzzer. Gotta wash it out. Pictures to follow.

Monday, April 11, 2005 0:19 AM CDT

Dog For Sale, Half Price, As Is Where is

The boys had a great weekend. It was soccer tournaments all around. There were four games between them and they were all exciting. It was nice to see Spencer get back for a few games before the close of the season. I’m not sure what most of the boys do after their bone marrow transplants, but all the other kids seem to have hair, so I expect the rest of the transplant kids must be staying home.

I talked to the coach. I know soccer gets pretty competitive, and I’m sure a lot of the kids are considering total body radiation, massive doses of chemotherapy, and fresh bone marrow to give them that extra competitive edge through medically prescribed steroids, but really I don’t think it’s that good for their conditioning overall. In the long run they’re really better off to just practice hard and stay away from the drugs.

Friday was date night. It was dinner and a movie. Tracey and I were rather early for the movie and ended up next door to the movie theatre in the seasonal aisle at the Superstore. We found a nice garden swing and just sat their swaying back and forth chatting for half an hour. A lady walked by and said, “Oh wow, that looks just like date night.” It was almost as though people don’t normally go to the Superstore for date night.

We have begun the preparatory regime for the next round. The serious treatment starts next week. Saturday was preparation day. We went with a topical application of a low ammonia formulation. It seemed to work fairly well with only moderate discomfort.

I was invited to a poker game on Saturday night. I asked my new poker buddies if they wouldn’t mind calling me Gold Member. They were quite agreeable. In fact I’m sure they will have me back again. The secret to being popular at a poker game is to lose more money than anyone else. It doesn’t really matter what colour your hair is.

The dog is now half price. I don’t really want to go into any of the details except to say that he had a little gastrointestinal issue in the back of my vehicle and I’ve now learned how to remove all the carpeting from the cargo area for pressure washing while Tracey has a spoon that she doesn’t ever want back in her kitchen again. Scupper is on a diet of plain rice for a day or so.

So tomorrow, Spencer begins a round of irrenotecan. It should be relatively mild compared to some of his favourites.

And now that I’ve laid down a base coat of blonde I will be looking for some nice purple or blue hair dye to get ready for Balding for Dollars. If you’re going to lose it (and I don’t have much to lose) you might as well go out with a brilliant splash of colour. I’m looking for suggestions on what colours work best...

Thursday, April 7, 2005 10:46 PM CDT

Dogs on E-Bay

I want $90,000. For that price, Scupper is gone. I could only find one other Portuguese Water Dog on E-Bay. The current bid is $60. I don’t think I am going to be able to get $90,000.

Which is probably a good thing. The rest of the family is pretty much unanimous. They don’t want to sell Scupper.

I asked Spencer. He responded, “I don’t think you should sell Scupper. Why don’t you sell Foster instead?” I checked on E-Bay. There were no Fosters listed.

I asked Foster. He was a little more thoughtful, “No! You should sell the old outboard motor we have in the garage.” I checked on E-Bay. There are a couple of 8HP Hondas, a lot newer than ours. They seem to be going for less than $90,000.

Tracey believes I might be insane. It is probably not an unfair assessment. Yesterday she went to get her hair done. I reminded myself all day that I must remember to notice and compliment her on how good her hair looks. And I did remember. And I told her how good it looked. But there was one small problem. I was still driving home in the car on the cellphone when I told her. I don’t think it had the right effect.

Scupper just looks at me smugly. I know what is going on his little dog brain. He’s sitting there thinking, “Just try it. They’ll have you listed on E-Bay in a heartbeat and they’ll take the first bid over a dollar.”

So I guess we’ll keep him. Even though he has issues. Lately he bears a close resemblance to a musk ox in the springtime. He has these great shaggy clumps of hair that hang from him. They’re an artefact from the trimming process. I cut him all over. Three days later, these dense bits of curly fur spring out. Three times I’ve cut him. Still they spring out.

So I may not be able to sell him. But he can still participate in Balding for Dollars with me. On the weekend we’ll dye our hair blue. And any shaggy clumps will be pink.

Tuesday, April 5, 2005 11:50 PM CDT

The Finer Points of a Midlife Crisis

I am having a small crisis with my mid life crisis. What I ought to do is go out and buy the new sailboat and to hell with the financial consequences. The problem is I would have to live with the financial consequences, so my mid life crisis is in crisis. I am not sure that I will be able to execute properly. I’m beginning to question if in fact it’s a proper midlife crisis at all.

However, we must move on so I’ve decided to modify my midlife crisis to suit the financial situation. It will have to be a staged affair. If I can’t afford the boat, maybe I can swing the dingy. The boat can come later one day when we can afford it. Besides if I postpone my midlife crisis, doesn’t that mean I’ll live longer?

The dingy choice has been narrowed down. A beautiful 8 ft Walker Bay with the inflatable tubes and the performance sail kit. It tows, rows, motors, and sails well. OK, so it’s not beautiful in the traditional sense, but its injection moulded plastic requires no maintenance. I want to incorporate laziness into my midlife crisis. And my boys will be able to sail their own boat while I sit watching in the comfort of my cockpit listening to Pat Metheny and enjoying a cocktail.

So I’ve been working on selling the concept to the family. They all believe in the dream. But still there is the issue of money. This weekend I dedicated a day to maintenance on the Volkswagen. I’m sure I’ve saved a few hundred dollars over taking it to the dealership. Next week I’ll fabricate a new steel deck plate for the lawnmower and we’ll squeeze another year out of it. One way or another we’ll free up the cash to live the crisis.

Meanwhile, Foster has been having his own mid-kid crisis. He wants more out of life. Soccer and school and daycare aren’t cutting it for him. He wants what good Canadian boys want. He wants to play hockey.

Now the big problem with hockey is that we will have to get out of bed at unreasonable hours on weekend mornings to drive Foster to the rink. So we impressed upon him how hockey costs a lot of money and is a big commitment and he has to be sure he really wants to do it before we register him. He remained keen.

Until tonight that is.

Tonight he said he wasn’t sure he wanted to play hockey. We asked him why he wouldn’t want to play hockey. His answer was perhaps the most heart warming, unselfish thing you could ever hear from a six year old,

“Because then Dad won’t be able to get his dingy.”

We assured him that if he wanted to play hockey, we would find a way and Dad would not have to go without his dingy. We can each get what we want. So we tucked to Foster into bed and he was a very happy boy. He has been relieved of his stress.

And I too have it all figured out. We can have everything we want. I’ve arrived at the solution.

We will sell the dog.

I’ll share the good news with the family tomorrow.

Tuesday, March 29, 2005 1:19 AM CST

I’ve been figured out. When I write a lot, hell is raining down around us. When I don’t, we’re busy living life.

So we’ve been busy. And I haven’t updated in a while, so I’ll write a few short notes.

Spencer played soccer last weekend. His team was invited to a clinic hosted by the Canadian women’s national team. My guess is he was the only kid there who had had a bone marrow transplant this year. He didn’t do the drill with the somersault at the end of dribbling through the pylons. If you tangle your knees up in your shirt, it can rip out your central line. But he did do the header drill with a bald head. He impressed the hell out of me.

And this week was spring break. I think the kids had fun. I was busy at work all week, day and night, so didn’t catch the activities. But we made up for it this weekend.

We drove 800 km to the other side of the province to visit my Aunt. I was reminded that Canada is a big country with climatic diversity. We watched the crocuses bloom a month ago. The cherry blossoms have come and gone and the lawn has been mowed twice. But this weekend, on the other side of the province, Foster built an igloo. Actually he calls them “eggloos”. And Scupper ran in snow that dragged on his belly. The eggs were fresh because the chickens had laid them. Scupper didn’t eat them: the chickens, the eggs, the cat, or the beavers. Well done Scupper. And we played crokinole and Risk and were overheated by the woodstove and stressed by nothing. Except perhaps driving home in the blizzard past the overturned SUVs and the cars in the ditches.

And somehow the Easter Bunny found us. I don’t think anybody really believes in the Easter Bunny. Though nothing is ever mentioned in case the flow of chocolate is dammed by scepticism.

So when the clinics involve soccer balls instead of IV poles, and we are comfortable being hundreds of kilometres from the nearest children’s hospital, life is pretty good.

And discussions about radiation and chemotherapy can wait till next week. Reality is best served in small doses at long intervals. I for one, still believe in the Easter Bunny.

Friday, March 18, 2005 3:42 PM CST

MIBG Results

We had the big meeting today - reviewing Spencer's scan results.

Tracey was very optimistic based on her experience as an amateur radiologist and factoring reactions from the techs and people in clinic who were in the know, but not at liberty to say what they know.

Tracey is much smarter and more perceptive than I am.

Dr. P says that Spencer's scans look very good. She is very happy. The MIBG looks remarkably clear. There is one spot near his upper spine that she wants to consider blasting with focal radiation. They are also looking at a couple of rounds of Irenotecan (chemo) and starting him back on retinoic acid after that. This was the intended path if everything went well.

Of all the places we could be at right now, this is about as good as it gets.

I am still processing this new information. It is not what I was mentally prepared for. We are very pleased.

And there is other good news. Dr. P asked if we were going to go out on the boat this weekend. We said no because of the threat of black mold in the 37 year old boat. She suggested that indeed that is probably not a good idea. I asked if I could infer from that that her recommendation was that we buy a new boat? She said she would write a prescription.

I will check to see if it is covered under our extended health care.

Steve

Tuesday, March 15, 2005 6:39 PM CST

On the scan front, we have news. It is all a bit ambiguous. Ambiguity lies somewhere in the middle of the two extremes of certainty. And there is one end of that scale you don't want to be on. So I suppose being in the middle is good news if you look at it the right way.

His bone marrow is squeaky clean. No ambiguity.

His CT scan is about the same. No new areas of disease. The oncologist is not concerned.

His bone scan shows increased uptake in an area or two. This is not necessarily bad news. Though for the life of me I can't exactly remember why. Could be something to do with the radiation / new bone marrow or whatever that might cause a change in the scan and not be spreading of cancer.

The holy grail of nuclear medicine studies for neuroblastoma is the MIBG scan. Today they fill him up with radioactive MIBG. Wednesday and Thursday they scan him. I always like to wrap him in several layers of tin foil before I tuck him in at night on these days.

He was in clinic again yesterday to be checked out and refuel with a bit of IV hydration (same regimen that the Tour de France riders follow). The cause of the fevers is a mystery. Mysteries are frightening. This has definitely been a big set back from where he was a week ago. His oncologist is feeling guilty for having let him go to school. He was not eating or drinking much and has dropped a kilo since last week.

Spencer has now gone more than 24 hours with no fevers and no Tylenol. His appetite & energy are back and he is himself again. So perhaps it was just some low grade viral thing that we will never discover the source of.

Monday, March 14, 2005 1:11 AM CST

Hovering

It was an average weekend. Which is to say there was nothing average about it. A few disjointed thoughts...

The scientific community is seriously alarmed. But I have to say that I am all in favour. If global warming means that I now have to turn the air conditioning on in the car in the middle of March, it’s working for me.

This weekend I turned 40. And I am married again.

I haven’t played squash in probably ten years. So I chose my 40th birthday to try it out again. I played with a 30 year old who exercises more in a week than I do in a year. Now I feel like I’m 50. I had no idea that all those muscles that hurt were even in my body. But the only thing I broke was a squash racquet so life is good.

Today we fled the country and escaped our persecutors. Well perhaps that’s just a bit dramatic. We didn’t mention anything about claiming refugee status when we crossed the border. We just told them we were going for a helicopter ride. I guess we didn’t look like a threat to national security, so they let us in.

Uncle John has a friend who keeps a helicopter in Bellingham. She invited us boys for a ride. Spencer got to sit right up front. Foster, John and I sat in the back. Strangely, Scupper was not invited. But more on him later.

We hover-taxied out to a runway and soon reached our cruising altitude of 600 feet. Cruising speed was 120 knots. That’s over 20 times faster than Snapdragon, so we got to see more of the San Juan Islands in an hour than we could hope to see in a week of cruising. And from a pretty unique vantage point. It was rather breathtaking. The view was amazing. The colour was amazing. Watching the currents flow around the islands as the Pacific Ocean fills up Puget sound was incredible. But the coolest part might have been to see the boys. They were very quiet, but clearly moved by the experience. Spencer liked the whole thing. Foster thought the headsets which cancelled the noise and allowed you to talk were really cool.

Now I know I should have been blown away by awesome panoramic view of one of the prettiest places in North America, or perhaps awed by the ultra modern technology of the Eurocopter, or impressed by the skill of our pilot. And I was. But I must be a simple man. What really impressed me was the aircraft hanger. I have never seen a floor so spectacularly clean or a door so large. It would make the ultimate workshop. And the little electric hoist tractor that lifts the helicopter and moves it around is really cool.

The whole day was rather amazing. Particularly so since Spencer woke up with a fever of 39 and didn’t really want to get out of bed this morning. But a little Tylenol works wonders.

We made it back over the border this afternoon to drop into Children’s for some IV antibiotics. Tracey dropped us there and went to see her mom over at Vancouver General. She is recovering spectacularly well after receiving her 4th artificial hip. (She’s not four legged - the first two just didn’t come with a lifetime warranty.) Always nice for Tracey when she has options on which hospital to spend her time at on a sunny Sunday afternoon.

Now about this fever thing. We have no idea what’s going on. It started about 5 days ago. None of his cultures have been positive. So it’s either something viral, some graft versus host disease, or a bit of cancer. Nothing to worry about I’m sure.

Oh yes. And Scupper. Scupper discovered balloons. For ages these have just been terrifying things that make a frightening bang when he jumps on them. But this weekend he learned to play volleyball with his nose. He’s quite skilled at it.

Oh and the marriage thing. Technically, I haven’t been unmarried. I just lost my wedding ring in all the hand washing of transplant. Tracey found it under my dresser and we are now reunited.

Think cool.

Steve

Tuesday, March 8, 2005 0:08 AM CST

Why Worry?

Scan week. I hate scan week. Even worse when it is spread out over 10 days. Today was CT, Echo, and Bone Scan. Still have bone marrow biopsies and MIBG to go. I think it all wraps up sometime around the middle of next week.

Anticipation brings out the manic depressive in me. Early last week I was convinced life was going well and it was finally time to move ahead with my midlife crisis: a Beneteau 34. I had managed to convince Tracey, in my own mind, that I had already saved forty thousand dollars by replacing the floor mats in the truck so that we didn’t have to buy a new truck. By fixing the seat in her car I’d saved another thirty. So we were pretty much half way there. Just have to carry on working and the little payment to cover the rest wouldn’t even hurt.

By the end of the week I was convinced that we should sell the house, quit our jobs, and move up the coast to perform subsistence carpentry and dental hygiene in a mortgage-free environment where perhaps non-functioning brains would go unnoticed.

But reality is different. Reality is scans. Perhaps the single most terrifying thing a parent can do. Just watch the screen and imagine hell in little pixels. You want to know. But the last thing you want to do is find out. Couldn’t we go lie on a beach in Mexico instead? That would be more fun than watching, and worse, waiting. Wouldn’t be so bad, but once you’ve fired the big gun, you hope to see results.

Ah well, other than that, life is normal. Sort of.

Tracey’s mom is going to have her fourth artificial hip put in on Thursday. Number 2 gave out after years of yeoman service. Number 3 is still good for sixty thousand miles. She is in terrible pain, though she would never admit it to us. We worry about her. Though she would be upset if she knew we were using up our precious worries on her behalf. So we don’t tell her that we worry. And then she won’t worry about us.

Much better if everybody just tells everybody how much they love them. Then no more worries.

Gotta go. Time for another glass of vodka. But don’t tell Tracey. She thinks I’m drinking water. I don’t want her to worry about me.

Steve

Monday, February 28, 2005 1:25 AM CST

Day 46

“I can’t wait until my next set of scans.”

“Why is that Spencer?” Tracey asked.

“Because I don’t think they are going to find anything.”

So said the boy as they drove from the clinic to school. Yes school. His doctor sent him on Friday. She saw him in the clinic finishing up his board game / circulatory system diagram / science project thingy and suggested that since he was doing so well, he might as well go into school for a little while and hand it in. So he did.

Though it’s not as though he has been trapped at home. Earlier in the week he was at a radio station taping a commercial for the upcoming “Balding for Dollars” fundraising campaign. Spencer and I are poster boys this year. I’m going to have to grow some hair in a hurry or we won’t be able to “shave for the brave.”

So things have been going all right. In fact they have been going so well that Tracey and I went out for date night. Our friends Bob and Sue took us out for dinner and a Pat Methany concert. It was wonderful.

At dinner Bob shared with us the heartwarming story of a Portuguese Water Dog that they had met. Some friends were looking after it and brought it along for New Years Eve dinner. She was an eight-year-old black and white who was well behaved and just curled up at their feet. I’m not used to heartwarming stories about well-behaved Portuguese Water Dogs at dinner parties, so I found this a little surprising.

Then the story unwound as it should. They let the dog out and it ran away. Instead of enjoying lobsters, they spent most of the evening chasing this dog around the woods. They didn’t find it until the next day when it was discovered at its own house wimpering in the driveway. “Yeah, that Roxie was a real piece of work.”

Roxie? Scupper’s mother is Roxie. But I’m sure there are dozens of 8-year-old black and white females named Roxie who live in that part of town. Surely this badly behaved animal couldn’t be any relation to our Scupper. It hardly seems possible. But stranger things have happened.

We spent the rest of the weekend going to soccer games, lunching with grandparents outdoors in the sunshine, running Scupper on the beach, and hanging out with friends.

So life is trending back to normal. At least I think it is. I don’t really remember what normal is. Which is nice, because that way I can pretend everything is normal and I won’t be able to detect the difference. I do the same thing with my sanity.

54 days to go.

Sunday, February 20, 2005 1:14 PM CST

As I look at the weather map across Canada, the entire country seems to be frozen. Well almost the entire country.

Out here on the left coast, things are a little warmer. We’ve been busy making sure the boat is ready for the season, playing soccer in the sunshine, dipping the fishing rods in the water, and admiring the flowers. And only one little stop at the hospital to check Spencer’s blood pressure which is normal.

Love to write more, but I should really get busy and mow the grass. More pictures in the photo section.

Tuesday, February 15, 2005 11:40 PM CST

He's Back

In all the medical mumbo jumbo and creatin creeping I think I might have failed to convey the kid stuff that really matters. Last week Spencer was discharged from hospital after transplant. He had made huge progress to get the point of being released, but was still miles away from being the happy robust kid who was slapping the tongue of his dog before he was admitted. But through it all, he has been, well, Spencer – a pretty amazing kid. As parents we can see that no matter what kind of shape he is in.

But today it struck me how far he has come the last week. Yes he’s in clinic every day. But today after clinic he swung by my office to pick up Scupper. (I don’t trust Scupper at home alone with the coffee table – much better to keep an eye on him.) Then Spencer was off to school, saw a few friends, and met with his teacher. OK so maybe it was after school hours and he wore a mask, but it’s a big step up over a web cam. Tonight at dinner he ate tacos. Not one but two.

I’m impressed that Spencer’s doctor opted not to put a new NG tube in and decided on IV hydration at clinic. It has made a huge difference for Spencer. He has lots of energy and is hard at work tormenting Foster. He’s once again become a kid first and a patient second. Always a much better world when we have the luxury of getting them in the right order.

But the real difference is the laughter: his, mine, Tracey’s, Foster’s. Scupper only manages a stupid grin, but he would laugh if he could. Spencer has a wicked, dry sense of humour. I don’t know where he gets it from, but it’s back. And as far as I can tell it’s at least as reliable an indicator of how well he is doing as anything they can count in a blood sample.

Nice to have my kid back again.

Nice to have my family back again.

Even if they make me wear a mask.

Monday, February 14, 2005 10:01 PM CST

Spencer is in excellent spirits today. His NG tube was removed last night so apart from the plumbing that hangs out of his chest he feels like a normal boy.

Now about the NG tube removal. As you know, the plan was to tie this to Scupper's collar and throw a tennis ball when the time was right. Unfortunately, when Spencer swallowed his dose of cyclosporine last night, it caused a gag reflex and things were ejected rather prematurely. This prompted Tracey to shout, "Steve, bring the scissors!" But by the time I got there, Spencer had already completed removal the hard way. Alas, too many details.

Now about this cyclosporine. Its function is to stop Spencer from rejecting his bone marrow, or perhaps more accurately to stop Spencer's bone marrow from rejecting him. On Friday, Spencer had elevated creatin levels so we stopped the drug and he went back in for tests on Saturday. The good news is that his creatin levels had dropped to comfortable levels, but his torso was covered in a rash indicating a stronger graft vs. host reaction. So a reduced dose was ordered which is what he was trying to swallow last night. The oncologist on call last night ordered a replacement dose for the one which was rejected.

So today Spencer's creatin levels were really high. Could be that he's not getting enough fluids without the feed pump running overnight. Could be that he actually got a double dose of cyclosporine. Could be that his kidneys are just plain stressed out. Nobody really knows for sure. The plan is to keep him in clinic on IV hydration today. They did think about admitting him overnight. They did think about putting his NG tube back in. The deciding factor was when the oncologist went to examine Spencer he was munching away on a bowl of pasta. So no NG tube. No admission.

We will have to wake him up repeatedly tonight to make him drink litre of water, and it's back to clinic tomorrow. They have stopped his cyclosporin and put him on a prednisone to keep the GVH in control. I think prednisone is a steroid of the same class that tend to make Spencer's blood pressure spike to dangerous levels. It should keep things interesting anyway. They've also discontinued Septra (an antibiotic) which might also be the cause of his rash. Nothing appears to be clear cut in this complicated world of multiple medications.

So I have to leave early, pick up Foster, and cook dinner tonight. Damn, and I was hoping to have time to go diamond shopping...

Monday, February 14, 2005 0:57 AM CST

Dear Valentine:

We’re doing this for the 25th time. We ought to have it down by now.

Goodness knows there is a vast pallet of commercial sentiments to draw from. A dozen roses never goes wrong, but they are on the forbidden list this year. Another potentially toxic source of fungal invaders.

But that doesn’t matter. Some fresh homemade pasta, a chilled bottle of chardonnay, steamed asparagus, a large Dungeness crab, candles, and some nice background music go a long, long way. A little odd that the most uplifting moment comes with the words, “Mom, can I have some more pasta?”

When I sit here enjoying the last of the wine as you give Spencer a bath in Aveeno to soothe his itching, I can’t help but think that the proper way to do this is anchored in a quiet cove watching the sunset, listening to some wonderful music, waiting for the evening dew and sky full of stars serving as background for the falling meteors. Chips of ice from the block, a glass of Bailey’s, and a sleeping bag to cuddle in and ward off the dew.

But that’s not our reality right now. Ours is the crushing weight of the day to day to existence of clinic visits, endless medications, and a struggle just to get through the day. It’s wearing a procedure mask and sleeping apart so that you don’t get the same cold I have that would keep you apart from Spencer. It is scans and treatment and the horror of what might be.

Yet I feel little of the weight. As Spencer barfs up his NG tube and you phone the oncologist on call to find out what to do about the cyclosporine that lies in a puddle on the dining room table, I don’t feel misery and sadness for what we have given up.

Instead, I feel a sense of wonder. For under everything is a solid foundation of love between you and me. That’s what gives me strength. Sure the romantic side is a little rusty. It’s hard to find a baby sitter skilled in the medical arts and harder still to forget whatever it is we are escaping from. But I know these things will pass.

What endures is the warmth from your smile and the sense when you lay in my arms that everything is right the world. And that is as stronger now than it was 25 years ago. You are strength and beauty and wonder and love.

So what can Hallmark or Purdy’s or FTD add to that?

Don’t get me wrong; I’m not an idiot. I realize that no medical ban on roses or any public proclamation of my love for you, are going to get me off the hook. Tomorrow on the way home from work, I’ll stop in and pick up some diamonds or other biologically inert material suitable for the occasion. Failing that I’ll just have to dip you in chocolate and lick it all off. Whatever it takes.

I love you.

Steve

Sunday, February 13, 2005 11:47 AM CST

Spencer and I spent Sat afternoon at Children’s hospital to check out his blood enzymes levels.

The concern on Friday was that his creatine, BUN and LDH levels were too high and the cause was unknown..... failing kidney function, not enough fluid intake or too high of a cyclosporin dose. I was quite worried because his kidneys have had a very tough history or chemo, and radiation.

We were instructed to stop his cyclosporin ( this is the antirejection drug which stops Spencer’s body from trying to kick out the new bone marrow) Friday night and Sat morning, increase his fluids by 1000ml and return to 3B for follow-up. Spencer and I packed our bags just in-case it turned into an overnighter or more on the ward.

Spencer has been on cylosporin since the transplant and several weeks ago started developing an itchy rash. This wasn’t the classic type of rash associated with graft vs host disease ( GVH), but none of the doc’s could say exactly what it was. It could be GVH or it could be an allergic reaction to some drug or combination of drugs. He was prescribed antihistamines, Aveeno oatmeal baths, and lots and lots of derma base cream for his dry peeling skin. The rash became less visable and bothersome and Spencer rarely needed antihistamines for itching.

Yesterday aftenoon, Spencer started complaining of being itchy. We gave him one of the prescribed antihistamines. We headed to the hospital and settled in for a few hours stay while the blood work was processed. Spencer’s itchiness worsened and he developed an impressive red blotchy rash all over his abdomen and back. Other antihistamines were given.

Blood enzyme levels indicated that his kidney function improved significantly off the cylosporin. ( too high a dose of cylosporin causes kidney enzymes to elevate) It was determined that the cyclosporin level was too high and that the itchy rash was very likely GVH all along. Too much cylosporin causes the kidneys to be stressed, too little causes GVH to be exacerbated. We are back on Mon, Wed, Fri to check his levels with the new cyclosporin dose. If the GVH is not well controlled he will start on a corticosteroid called prednisone. It is a complicated juggling of drug dosages, symptoms and GVH that will likely be tweeked many times for many months to come.

Anyways, we are all back home again.....

Tracey

Friday, February 11, 2005 7:55 PM CST

Spencer was in clinic today. He went through the usual blood tests and scooped a $5000 bag of IV immunoglobulin. The good news was he was able to escape clinic without re-incarceration. The bad news is that he has to go back to 3B tomorrow. His creatin levels are elevated so they want to keep a close eye on his kidney function. The plan is to repeat the blood tests tomorrow. Hopefully things will have improved and everybody is home for dinner. But just in case, Tracey will be packing an overnight bag. Meanwhile Spencer is at home shooting a litre or two of water down his NG tube as sits watching TV. Foster has developed a cold and has passed it on to me, so we are trying to maintain separation. It should prove to be an interesting weekend. House-elves check your schedule for next week – you’re not off the hook yet...

Thursday, February 10, 2005 1:41 AM CST

Day 27

Tracey visits pharmacist. The list is long. Magnesium, hydroxyzine, nabilone, ranitidine, cyclosporin, ondansetron, gravol, benadryl, & maxoran. The pharmacist felt compelled to warn of the side effects. “This one will make him drowsy. This one will make him drowsy. This one will make him very drowsy... Oh my God you’re not going to give all of these to him at the same time are you?” Tracey nodded. “There is very little likelihood that he will remain conscious.” Tracey smiled.

Meanwhile back in the room the “over-drugged” boy is bouncing around on the bed. The nurse suggested I give him his four o’clock ondansetron before we go. I have no idea what to do with the NG tube. It’s been a couple of years. But it wasn’t a problem. Spencer showed me what to do. As he was forcing the air out of a flush syringe he says to me, “You have to get rid of these little bubbles. They make you fart.”

17 loads of stuff down to the car later and we were ready to go. I never really thought I would be able to live in Shaughnessy among the multi-million dollar mansions and have a staff to care for my family. After spending another month in the neighbourhood, I have to say it’s highly over-rated. I much prefer our little hovel in the suburbs even if we have to cook our own meals and wash our own sheets. I was happy to move out. Though next time I think I’ll hire professional movers.

So boy and dog were reunited. I was a little afraid that Scupper would think the NG tube was a toy to tug on, but it wasn’t a problem. We have agreed that when it’s time for the tube to come out, the easiest approach will be to tie it to Scupper’s collar and throw a tennis ball. Spencer says Scupper has dog breath. I’m not surprised. He is a dog. And I didn’t brush his teeth. But that didn’t seem to stop Spencer from calling him every ten minutes to come over and scratch him behind the ears.

So now everyone is heading for the beds. None of them have rails. None of them fold up. And I’m not entirely sure anyone will want to get out of them in the morning.

Nice to be home.

Wednesday, February 9, 2005 7:54 PM CST

Home.

Dog and boy together again.

Wednesday, February 9, 2005 2:16 AM CST

Day 26

Spencer was liberated for two hours tonight. I cut short a meeting with an out of town director who wanted to talk about business strategy so that I could vacuum the truck and clean the seats with anti-bacterial wipes. I’m quite sure this was the correct decision.

We left the hospital and went for a drive. Dinner was drive-in at the White Spot. Spencer even ordered a Pirate Pack to look at. He even went so far as to eat five bites of macaroni.

We returned to the hospital just after shift change. Nurse Heather, not her real name, who transfused the bone marrow on Day 0, was Spencer’s nurse tonight. She came in to the anteroom as Spencer was washing up.

“Hello handsome!” she said to me.

“Good evening, Dear Battleaxe”, my standard response.

“Hi Tracey! Hi Foster!”, she said to the crowd at the sink.

“That’s not Foster. It’s Spencer ” I said.

“I wasn’t talking to him,” she said turning and looking into the room, empty but for its patientless IV pole. She did a double take and looked again at the healthy boy in street clothes and a cap washing his hands by the sink and realized with utter joy that he was her patient for the evening. I think it was a good sign.

So tomorrow we will take him home as long as there are no fevers or major barfing episodes overnight. He’s taking all of his medications orally now, so there doesn’t appear to be any good reason to keep him hospitalized.

Except perhaps for one. Everything in the house has been cleaned. There is even a dedicated bathroom for Spencer use only. The floors were all done again today. And we’ve allowed a few days for any dust to settle. But there remained one major potent source of bacteriological risk.

Scupper.

So I decided to have at him. Now his favourite tub was off limits in the sealed clean bathroom, so I had to stuff him in the laundry sink. I think our laundry sink is getting smaller because he doesn’t fit so well in there any more. I had to be careful because I know Tracey personally spent four hours cleaning the laundry room on Sunday. Scupper has never had such a cleaning. Not a part left undone. I spent extra time hosing down his head which he is not particularly fond of. But hey, if he is going near my boy, he better be clean.

Now I dried him thoroughly, but somehow he has a way of shaking that can liberate an extra two cups of water as aerosol spray no matter how many towels I use. Not a dry wall left in the laundry room. But it’s clean water, right? Just like the little wet foot prints that seem to be all over the floors throughout the house...

I think we will just bring Spencer home wrapped in saran wrap except for his face which we’ll cover with a mask. It has to be easier than keeping the house clean.

Monday, February 7, 2005 0:19 AM CST

Day Somethingorother

They took them away today.

If the truth were known, we didn’t really deserve them anyway. It was a case of neglect. Not wilful neglect. Just regular everyday ordinary neglect. And these were only the ones that survived, the others we had already killed long ago. If you are a houseplant in the Dolling household, your life is destined to be a parched hell. So it was just as well that the house elves took the house plants away. If they get watered only once in the next two months, our plants are in a better place.

Some other things left our house today too. Every known bit of a dust or lingering mould buried away in any corner or cupboard is now gone or slowly being killed by a diluted bleach solution. Unfortunately, I had to be with Spencer at the hospital and couldn’t help with all the household cleaning. Though I did consult by telephone when a rag hiding in the bottom of a bucket found its way down the toilet. Uncle John tried to convince me that it was a design flaw and not operator error. I’m not sure what was poorly designed, the rag, the toilet, the bucket, or the water. I hold operator error open as a possibility. An hour’s work with my plumbing snake apparently dealt with the problem or at least pushed it far enough down the pipe that when the toilet backs up two days from now, I will have forgotten the event and blame it on Scupper.

The inside of our heating ducts are also sparkling. At least I think they are. The nice man came on Saturday, wandered around, and gave me a quote for $385. I told him he was freakin nuts as we had them cleaned a half dozen times before for less than half that amount. I called Tracey at the hospital. She advised me that we had never actually had them cleaned before because the quote was about $400 to have it done. I told the nice man to go ahead. It’s a clever business. They drag in a really noisy machine and park it in the family room. Other hoses run out to the truck where a noisy compressor chugs away. They seal off all the heat registers and then go to work on them one by one. It’s so noisy you can’t stand to be in the same room. For all I know he sat and read a book for three hours and the machine’s only purpose is to impress the homeowners. I never actually crawled inside the ducts to see if they are clean.

Scupper and I went to the vet on Saturday. There was a little confusion. He doesn’t actually drink the broth. The broth is for culturing the specimens. I was impressed to learn that some of his specimens will travel as far as a lab in Edmonton. I was really impressed to learn that it costs $265 if you really want to have your dog’s poo thoroughly checked out. When I gasped for breath they suggested, “Oh we better give Scupper another treat.” This got him excited. He put his paws up on the counter and tried to sign the Mastercard invoice. Then he started knocking things off the counter. I think he was looking for $265 worth of treats. He does it all with a certain charm. He basically trashed the place, but left them smiling.

Tracey and I went out to a party last night for a close friend’s 40th birthday. It was high end affair at a downtown hotel. They served real food on real plates with metal cutlery! Wine in stemware not paper cups and cocktails with ice cubes. It was amazing. A wonderful time. On the way back to the hospital I called the nurses station and asked them to let Uncle John know that we weren’t coming back. We had learned to enjoy the good life and planned on catching the first available flight. The route to the airport goes right past Children’s hospital. We turned left, but the fantasy lived for at least 20 blocks.

Meanwhile back on 3B, Spencer continues to slowly improve. They are slowly taking him off all IV medications and stick them down his NG tube. He is interested in meals conceptually, though when they arrive, reality is different than the concept. A month is a long time to go without eating or drinking. It will take some getting used to. His counts are up and down but the trend is in the right direction. With any luck at all they will pass the magic threshold, we will have good news from a lab in Edmonton, and a boy and his dog will be reunited under the same roof some time later this week.

Carpet cleaning: $121
Duct cleaning: $385
Box of vinyl gloves: $ 10
Veterinary consult: $265
House elves: priceless

Friday, February 4, 2005 2:14 AM CST

Day 22

Years from now, I will be in therapy working through my issues and trying to sort out why I have a fixation with skid marks, farts, and poo. For now, I’m content that I don’t spend the day staring at the wall mumbling incoherently, and I can accept that I have issues that are unresolved.

So while we are on the subject, Spencer has come to trust his farts. That is a beautiful thing because I forgot to take the laundry home yesterday and we would be fresh out of pajama bottoms by now if the trend continued. And there is no recycling of pajamas with skid marks. His ANC is up to 0.5, and tomorrow he goes onto step down isolation, which means he will be freed from his room and allowed to go to the playroom for the first time in 25 days or so.

Today we were advised to get our house in order. Spencer will probably be coming home within a week or so. So the house elves will be out in full force with rubber gloves and disinfectant on Sunday. Won’t you house elves? I can’t think that far ahead. It was only a few days ago that I was thinking our next destination could be the ICU.

Today we were advised to get our dog in order. Scupper has to get a clean bill of health. The recommendations were very specific. There are four things they are testing for. I have no idea what they are. That’s not the part I remember. The part I remember is my instructions, which were very specific.

Saturday morning, Scupper has a veterinary appointment at 11:00am. There is nothing terribly memorable about an eleven o’clock visit to the vet. No the memorable part is that I must collect a stool sample. Not only do they want a stool sample, but also it has to be a fresh one, within two hours of his appointment. Oh yes and I have to get him to drink a bowl of special broth. Scupper eats coffee tables he doesn’t drink broth. And we have never worked on pooing on command. So Saturday morning should be interesting and memorable. I’ll be sure to write.

In the meantime we’ve been very busy. I was given a shopping list today which included double strand 24 gauge wire, a 3 Volt dc motor, an electric buzzer, wire cutters, D cell batteries, popsicle sticks, glue, and an empty 2L pop bottle. I’m not entirely clear on what is intended, but I’m pretty sure Spencer isn’t allowed any fissionable material in his isolation room so we should be OK.

Today was a good day. And there has been no evidence of skid marks, farts, or poo. So I think I might be pretty much over my issues. Oops. Except Spencer is just asking for the commode. Gotta run.

Tuesday, February 1, 2005 10:22 PM CST

Day 20

Trust. It’s an important thing. One of the fundamentals really.

When our trust is violated we slide into an uncomfortable world where things aren’t as they should be. What we have come to depend on we can no longer. It’s one thing for adults with their wary skepticism to lose trust, but quite another for a child.

I thought he might have lost his trust yesterday. His nurse came to reinsert the NG tube. He might as well have asked if it was OK to reach in and rip out Spencer’s tonsils. Let me assure you that Spencer still has plenty of fighting spirit. I think the screams helped to keep his throat open while the tube went down. But in the end it was just something that had to be done. No lies. No deception. Just a bit of unpleasant nastiness. Trust remained intact.

It’s been a tough couple of days for Spencer. Not quite feeling himself. His counts dipped down a bit yesterday after an impressive rise the day before. Thought we were climbing out of the valley but encountered a little ridge on the way up.

The doctors thought he might have had a fungal infection. An ultrasound was done. Ophthalmologists were consulted. But in the end, no fungus. No more of the anti-fungal amphotericin or “shake and bake” as the nurses call it. Good news.

In fact, our little room on 3B has become quite a detox centre. The drugs are being reduced one by one. Today he is finished with morphine. Cold turkey was proven to be a really bad idea, so they ramped it down over several days. TPN will wrap up tomorrow, and they are going to take him off his blood pressure meds.

So much going on in his little body, it’s no wonder he hasn’t felt himself. The whole thing is an elaborate chemical balance and when one thing changes the balance shifts and things need to be readjusted. Two steps forward, one step back.

The low-grade fevers continue, peaking every afternoon. It’s hard to tell on the difficult climb when any of the loose boulders might break away and sweep him back to the bottom of the valley where the flood waters rage. But slowly he climbs with sure footing.

Enough poetry. Trust is the issue. His farts have let him down. He can no longer depend on them. They are untrustworthy.

So we are burning through our supply of pajama bottoms and I have learned to change a bottom sheet in two minutes without Spencer’s feet touching the floor or powering down the Gamecube. Skills I hope to idle once trust is restored.

Monday, January 31, 2005 3:10 AM CST

Day 18

There is not much in the way of news on Day 18. No news is generally good news. But it was not a day entirely devoid of news.

Today Spencer has an ANC. ANC is absolute neutrophil count. Neutrophils, for the uninitiated, are motile, short-lived polymorphonuclear leucocytes with a multilobed nucleus and a cytoplasm filled with numerous minute granules. So with an ANC of 0.32 he has about 320 of these chiefs of the phagocytic leukocytes kicking around in a cubic millimeter of blood. At least that’s my understanding.

In practical terms, it means the boy is starting to build up his immune system. Now he’s nowhere near strong enough to withstand the bacteriological onslaught of a Scupper fart, so the woolly beast has been visiting regularly on the patio outside Spencer’s window.

Now there has been a small problem. On Friday, Foster, Scupper and I made our way up from the parkade via the elevators, down the hallways, through the tiniest corner of 3B into the parent lounge on our way to the patio.

Unfortunately, the door was locked.

We were trapped. The only path to the patio is all the way across the ward by the nurses’ station and out the back door near the playroom. We turned on our cloaking device and walked through trying not to draw any attention to ourselves. Well except for Scupper. He sort of makes a career out of drawing attention to himself. But we escaped undetected but for a few nurses who I later convinced were hallucinating at the end of a long shift.

Spencer enjoyed seeing Scupper. We enjoyed seeing Spencer smile. And he’s been doing a lot more of that lately. With the white blood cells has come a clearing of the mucositis, a huge reduction in pain, and a much greater capacity for enjoying things.

Saturday we left Foster, Spencer, and the Gamecube alone with uncle Ron while Tracey and I went to a movie. Date night with no medical intervention! It was wonderful.

Anyway, one of the first things that this new immune system wants to do is get rid of all the stuff that doesn’t belong. Now since the frame of reference is basically Foster, it pretty much figures that all of Spencer doesn’t belong. It’s called graft versus host disease. In it’s mild form, you get a bit of a skin rash here or there. In its severe form it’ll toss out your liver. Right now, Spencer has a few little rashy areas and Tracey and I have a new threat to keep our anxiety level constant. This is normal and expected and to some degree, desirable. They are also looking for a little graft versus tumor effect as well.

So all is well. We’re starting to see a day or two ahead instead of an hour or two. But one day at a time…

Friday, January 28, 2005 6:04 PM CST

OK. So Spencer woke up and had a bath and is feeling fine. I went back to work. Everything is reported to be nice and quiet this afternoon. There is even photographic evidence that he is feeling fine and building magnetic sculptures. I suspect his body is just trying to adjust to being in a lot better shape and getting by without such high levels of some of the medications he has been on. So we'll wait and see and what happens next, but there is no indication of anything to be particularly worried about at this stage, other than the usual background level of terror...

Isn't technology great? You can live the actual ups and downs in real time rather than hearing about stuff after the fact...

Cheers,

Steve

Friday, January 28, 2005 1:16 PM CST

Spencer has had a rough go the last day or so. Yesterday he didn’t want to wake up. This was OK for a while but when it got on towards 2:00 and he still resisted attempts to wake him, it got to be worrying. A parade of doctors began consultations and assessments.

After all the disturbance, he got up rather cranky and blamed dad for keeping him up too late partying the night before. Then he was cheerful and started playing on his computer.

The doctors cut off his base rate morphine and reduced gravol. He still has “on demand” morphine that he can press a button for for pain. They thought he had too many sedative drugs in his system.

He was OK for a few hours but after a while wasn’t himself: emotional, shakey, and generally out of sorts.

Tracey and Spencer had a restless night. Overnight his pulse rate shot up and the shakes continued. By 5:00am this morning there was a continual stream of doctors and nurses checking on Spencer and assessing what the problem is. Morphine withdrawl is a possibility. We’ve now started hitting his “on demand” button every hour even though he has no pain. It seems to calm things down. Internal bleeding is another possibility though they are less worried about that after checking his hemoglobin which seems to be OK. His counts continue to improve though he did receive platelets yesterday after they found traces of blood in his stool.

So at the moment, he just woke up and his playing his gameboy. He seems comfortable and happy, but not as good as he was a couple of days ago.

The doctors are in rounds and figuring out what’s what. I’m sure they will keep a close eye on him today and may do an ultrasound to make sure there is no internal bleeding.

We’ll post more when we know more.

Thursday, January 27, 2005 3:15 AM CST

Sleepy Reader

I like routine these days. Routine is the crutch I use to prop up my mental shortfalls. When all is routine, I don’t have to think about things. If I have to think about things then my mind gets full and something has to fall out. When something falls out you never know what it might be. That’s when bad things happen like you forget to put on your underwear or something.

So anyway last night I am looking at the fridge and there is this note on it: “Wednesday is sleepy reader morning at school. Bring PJs, a stuffy and books to read.” In my entire life experience, I have never encountered sleepy reader morning.

This was not routine.

I had a bad feeling. I would need Foster to help me through this. Which reminded me where the heck was Foster anyway? Was I supposed to pick him up or was Shannon going to drop him off? He is with Shannon right? Sure enough he was and he arrived a short while later.

I asked him about Sleepy Reader morning. “Is this tomorrow or did it happen last Wednesday.” Sure enough it was tomorrow. It was for the first half hour of school. “And are you supposed to wear your pajamas to school?”

“Yup”

“And do you wear them all day?”

“Uhuh. And we are also allowed to bring a brother or sister or dad or somebody along if we want.” He said it in such a way that left the door open, but it was pretty clear that he wanted me to go.

“Do you want me to go with you?”

“Sure.”

“And am I supposed to wear my pajamas too?”

“If you want. You don’t have too.”

Damned if I was going to let all the other kids’ dads come in their pajamas while my Foster sat in the corner and read all by himself. I was up for it. But I had a dozen other questions. Who’s reading, you or me? What books are we supposed to bring? French or English? What’s this other note that says pack shorts and t-shirt for soccer practice? We had it all worked out. A fine plan was in place. And as an added bonus, since we were going to skip daycare we could sleep an extra hour.

Or, as it turned out, an hour and half. Whoops.

That put a little pressure on the morning. But thank goodness for planning. Then Foster reminded me that I had to make lunch. Lori called wondering why he wasn’t at daycare. Foster decided on sushi for lunch since it was already made in the fridge. Which meant we had to figure out how to keep it refrigerated until lunchtime. I abandoned my luxurious plans to make coffee to bring in my Tim Horton’s mug so I wouldn’t be the sleepy reader. It was hectic.

But it was a triumph. We arrived at school on time. Foster was in his PJs and a robe and we even remembered a teddy bear. I wore my slippers and a robe. But wait a minute, where were the other dad’s in their pajamas? Oh well. We read for half an hour and had good fun. And off I went to work.

And I was brilliant; I even remembered the shorts and t-shirt to drop off at daycare. But I did forget the coffee mug. Better swing home and get it – can’t bring those paper cups into the transplant room.

When I arrived at home, Scupper gave me a strange look. That one where his head is ducked down and he’s done something bad, but it’s up to me to figure out what it is. Damn him. I didn’t have time for this. And then I saw it, the ever so slight indentation in the laundry pile on the couch that I intended to fold and put away, but never really got around to. Still warm. He understands “don’t go on the couch” but he adds his own little dog qualifier “when the humans are home”.

I grabbed my coffee cup and ran. I called Tracey just as I was getting close to work about 45 minutes later. She had good news. Spencer has a white blood cell count today. Yes! And then she asked me about Sleepy Reader morning and I shared the tale of my triumphant fatherly deeds. She was clearly impressed.

“Did you bring him a coat?”

“Well um. Yes. Sort of. Technically a housecoat.”

“But it will rain this afternoon and they send them outside at lunch time.” Oops.

“Did you pack a lunch?”

“Of course. Foster decided to have sushi for lunch. We packed it in ice.”

“Did you pack soya sauce or something for him to dip it in?” Oops.

“Did you remember to pack his soccer gear and take it to daycare?”

“Of course I remembered it. I have it right here beside me in the car” Oops.

OK so I pretty much nailed the Sleepy Reader part. So what if I missed a few of the details? When Foster spends the afternoon freezing as his pajamas dry out enough for him to go and be embarrassed playing soccer in them, I’m sure he won’t remember it. He’ll just think back to the warm moments we spent reading together, right?

Not likely. So Tracey made a few phone calls and dear friend Leila picked up some shorts, a t-shirt, and jacket and dropped them at the school along with a sandwich.

Looking forward to a routine night tonight…

Tuesday, January 25, 2005 3:20 AM CST

Day 12

The crisis is over. I kind of hinted that it was coming back on Day 10. Sometimes I can get a little carried away in the writing and sort of brush over the seriousness of the situation.

That’s not to say that things can’t still get worse. In fact there is every reason to believe that Day 13 might be the darkest of all. But at least we got through Day 11 and 12. And things are stable now.

It was really of my own making. Sometimes you can get so intent and so focused that you can’t see the larger picture. That’s what lead to the crisis.

My problem was I was focused on the little vegetable drawer where we keep our entire stash in the parent’s lounge refrigerator. It was down to a little lump of cheese, some flat bread-like material, and limp salad bits. I couldn’t help but stare down at it and think that the end was near.

But above in the freezer compartment was salvation.

Not one, but two Tupperware containers of curried chicken with asparagus and rice. And an entire Sheppard’s Pie, humbly labeled as “The World’s Best Sheppard’s Pie”. Several thousand calories of home cooked goodness just waiting for the auto defrost button. So all is well.

Oh yes, and the boy. Well it’s 1:15 in the morning and he is sitting in bed with his fingers firmly clamped on his nose to stop the bleeding. At least his mouth stopped bleeding on Tracey’s shift. Fresh platelets ought to clot things up fairly quickly. Nothing to worry about. He’s quite tidy so we won’t have to change the sheets.

Tonight was a good night. Well at least it was a good night if your name is Spencer. We played Mille Bourne. He kicked my butt. We played Mancala. He kicked my butt. And believe me, I show nine year olds strung out on morphine absolutely no mercy. He ran the web cam and gave Tracey and Scupper electronic hugs. He played Neopets on the computer for two hours. He watched a movie with me. And he smiled. So what if we’re four hours past bedtime? These are all good things.

So what will tomorrow bring? Some white blood cells? More smiles? Perhaps some beef stroganoff with broad egg noodles?

We’ll just have to wait and see.

Sunday, January 23, 2005 2:47 AM CST

Day 10

The primary significance of Day 10 would appear to be that it falls between Day 9 and Day 11. I feel obligated to report, but there is not much to say. That is good news.

Spencer is doing OK. He still does not have his NG tube back. And who really wants one anyway? He spends most of the day sleeping. This afternoon he got up for his bath and tonight we played a game of Mille Bourne – a French car racing card game.

So if I look at the double IV pole tonight, I see two triple IV pumps, 2 syringe pumps, a morphine pump, and eight miscellaneous bags of medicine and fluids. Pretty much the status quo. Amongst all this stuff, something alarms on average every 30 minutes. The alarms don’t disturb me. I don’t even really hear them much any more. Spencer doesn’t notice them. Inevitably some medication has finished its run and an IV line needs a flush or something. I don’t even ask. The nurses on 3B are top notch and they look after things. This allows me to focus on important things like Spider Solitaire.

There is one alarm that does bother me a bit. Spencer sports a glowing sensor on his toe that measures heart rate and oxygen saturation. He has to wear this while he is on morphine. It alarms when his oxygen saturation drops below 90%. It did this the other night every 10 minutes or so for what seemed like several hours. If I asked Spencer to wake up and breath it would creep back up to 95% or so. 100% is where you really want to be.

I think bone marrow transplant is about as intensive of medical care as you want to have for your children. Sure you can have more fun actually down in Intensive Care, but it’s not a comfortable environment down there. No privacy or comfy chair. We’re just as happy where we are.

Spencer probably snoozes 20 hours a day. He has no sense of humour, and he talks only when you talk to him or he wants something. And the only things he wants are anti-nausea meds or the curtain outside the door closed so he can pee in privacy. He hasn’t had anything to eat or drink in about two weeks. All of this would be disturbing except for one thing.

When I look in Spencer’s eyes, I can definitely see that the lights are on and there is no mistaking the look of determination.

I find it simply staggering.

He never feels sad or sorry for himself. He doesn’t bitch and moan and complain. He doesn’t worry about what tomorrow brings. He simply endures. And it’s not that he is spaced out on morphine and out of touch. With all the drugs he is on, he still kicks my butt playing cards. He just has a focus and quiet intensity and strength that is amazing. He has been this way through all the tough treatments.

And when he reemerges and expresses wants like food or entertainment, or he begins to smile and joke again, we will do absolute back flips to get him whatever he asks because it is so good to see the whole kid again. But that is off in some distant future measured in days, beyond our hourly horizon.

In the meantime, we carry on. Tonight oxygen saturation is running 100%, no fevers, blood pressure is good, and Spencer is sleeping comfortably. What more could we ask for?

OK. Maybe some white blood cells.

And I have to say the homemade seafood lasagna, chili, mousaka, tuna casserole, and meatloaf have been amazing humanizing nourishment in our world of take-out and IV bags. Not that I would ask for more…

Friday, January 21, 2005 3:02 AM CST

Day 8

We’ll drop the + designation. There seems to be little risk of confusing today with Day –8. On Day –8, I think Spencer was busy slapping the tongue of the wooly watercoloured wonder. Today he only managed a glance out the window at the beast before rolling over and going back to sleep.

Scupper’s buddy Boston is now a certified therapy dog. Children’s Hospital doesn’t allow therapy dogs. I’m not sure why. So since they’re not allowed anyway, we saw no reason why Scupper would need to be certified. So I just walked him into the hospital.

There is a funny thing that happens when you do something outrageous like bring your dog into the hospital. He becomes invisible. It is pretty obvious that he is a dog, and an energetic one at that, but if nobody sees him then they don’t have to deal with it. And a crazy bald guy walking his dog through the hospital is not somebody you want to deal with if you don’t have to. So even in the elevator when Scupper was dancing around, people just pretended not to notice. This suited me fine.

We walked him in through the back door of the oncology ward and out the parent’s lounge onto the patio by Spencer’s window. Spencer saw him, but wasn’t really feeling well enough to care. A bit of a shame. Earlier in the day the thought of seeing Scupper brought the first smile to his face that we have seen in a week. Timing is everything.

Foster came with me and Scupper to the hospital this afternoon. He had a follow up blood test to make sure his hemoglobin had recovered from the bone marrow biopsy. We don’t need to know the results; we can accurately estimate hemoglobin levels by observation at this stage in the game. Foster has no worries there.

The visit was good. Tough for Foster to see Spencer when he is not feeling well, but by the end of the visit Spencer was sitting up and playing cards and asking Foster, “ Why are you wearing my shoes?”

Today was a tough day. Spencer barfed up his NG tube. The NG tube is how he gets all his “food” and oral medications. His throat is in rough shape so they don’t want to put a new one in for 3 or 4 days. That suits Spencer fine. With the tube in he hardly talks at all. And having a new one put in ranks among the most unpleasant of activities for Spencer. He would prefer a bone marrow biopsy to an NG tube insertion.

Unfortunately with no tube, Spencer still has a few medications which he must now swallow. Swallowing is something you take for granted until you have Muscovites (I surrender Microsoft). It took Spencer 3 hits from his morphine pump to get down one pill tonight. It took a two-hour break and another 3 hits of morphine to get the second one down.

So we’ll take it one day at a time, sometimes an hour at a time. I have a feeling Scupper will be back. I tell the night staff that the rumours of us having a dog in the hospital are as outrageous as the claims that we were drinking ice wine with friends in the playroom the other week. (By the way, a 50 cc syringe full of air with a long needle makes an excellent substitute for a corkscrew.)

Cheers,

Steve

PS: Don't forget to sign the guestbook. I love it when people sign the guestbook.

Wednesday, January 19, 2005 2:35 AM CST

Day +6

It’s Day +6. I must have missed a day or two. The good thing is there is no news to report. No news during transplant is a good thing.

It occurs to me that some helpful pointers for bone marrow transplant would be a good thing. We’re getting better at this the second time around and have accumulated some knowledge along the way, but still we learn from our mistakes:

1. When checking in, don’t bother to throw your Mastercard on the counter and say: “Hi we have a reservation for today, we trust you have our suite ready, and would you mind sending the bellman for our luggage.” This statement does absolutely nothing to secure your room or move your bags.

2. Do not swab everything with alcohol. I tried to wipe Tracey’s lips before she kissed me goodbye the other night. She advised me that there are no studies to suggest that this has any beneficial health effects.

3. Make all the school lunch sandwiches for the donor sibling for at least two months in advance. This requires way too much mental energy when you have none. Teach them to scrape the mould off the bread.

4. When you have tidied up the room and thrown out the cup with the Nabilone that the nurse was going to put in NG tube, just confess. They don’t believe any stories that you tell to explain why the Nabilone is missing.

5. Do not try to pick the lock on the morphine pump. These are alarmed.

6. Practice, practice, practice. You don’t want to find out where the commode is kept and how to clean it and get it in the room when it is urgently needed at 2 o’clock in the morning.

7. Bring two remotes for the TV. You can’t touch the first remote after it falls on the floor.

8. Teach your children to spit. The great hairy hoarkers. I learned this the first go around, but somehow never got around to doing the training.

9. Everyone understands how much stress you are under and wants to help. Have a plan and use it to your advantage. If I’d remembered to buy paint in advance, I’m sure I could have had my bathroom painted by house elves.

10. Write the names of the owners on all the Tupperware. There is no way you will remember who it belongs to once you’ve eaten the Mousaka washed it out and tossed it on top Mount Tupper.

Spencer is doing well. He got a new morphine pump that allows him to control his own dose. He is comfortable and sleeps a good chunk of the time. We haven’t seen a white blood cell for several days. The platelet refill is running out. Hemoglobin is holding its own.

Tracey is doing amazing things with watercolors. Confinement seems to agree with her creative side.

Foster is doing well, but I think he misses Spencer. This morning he complained that none of his shoes fit any more and he put on a pair of Spencer’s. I let him go to school with three quarters of an inch of extra toe room...

Cheers,

Steve

PS: Don't forget to sign the guest book...

Monday, January 17, 2005 0:30 AM CST

Day +4

We now measure everything in days post transplant. So today is Day +4. Once you have a hundred of these under your belt, you can breath a little easier.

So we have now passed the easy part. Well at least from Spencer’s perspective. If you asked Foster, his hard work is done, except for the bits where he hardly ever gets to be with his whole family together. Now comes the rough stuff.

What? You thought the transplant was over and life was good? Well it doesn’t quite work that way. You see what happened to Spencer when he had the treatment is that it destroyed his bone marrow. The bone marrow is the stuff that produces all those blood cells. Hemoglobin, platelets, white blood cells. So he had a bunch of those kicking around in his system. Now they are all being used up. The platelets and red blood cells are no big deal. He gets refills of those. It’s those white blood cells that fight infections that are the problem. You can’t get refills of those.

So Foster’s bone marrow is busy finding it’s way to where it’s supposed to be and then it will engraft. When it’s done that, it will start to produce new blood cells and new bone marrow. That’s going to take a while until everything is in full production.

In the meantime we managed to take away Spencer’s immune system. So he is in a bone marrow isolation room. It has positive pressure to keep the bugs from getting in. Brother Ron dropped some chilli and other food for us today. So tonight the pressure might be a little higher than normal. But I digress.

With no immune system the bugs already in Spencer’s system throw a party. So he gets mucositis in his mouth and throat. (Now I’m not really sure of the spelling of that and Microsoft would prefer it if Spencer had Muscovites, but I don’t think we should take any Russian prisoners) So that’s kind of painful and nasty (better than Muscovites) so Spencer is on a continuous morphine drip.

Yesterday the fever started. Fevers are normal. They are also terrifying. So we are terrified because of what it might be. But in a recalibrated cancer parent terrified kind of way. Which is about the same as how a normal parent reacts to their kid having a fever. You just look after them as best you can.

So if I look on Spencer’s IV pole at the moment, I see two IV pumps running four IV lines. Backing these up are two syringe pumps. There are 6 IV bags hanging. Finally it’s all rounded off by a feeding pump and a feed bag. It’s so heavy that he has me push it down the hall when we get out for his bath.

I would list all the medications he is on, but I don’t remember what they all are. There are 4 or 5 anti-nausea meds, a blood pressure med, one for his kidneys, maybe one for his liver, some antibiotics, morphine, and some other goodies to smooth the transition to his new marrow without having a bad negative reaction to it.

He pretty much provides half time employment for one nurse around the clock. Which is an improvement over where he was. He used to have one dedicated for the first few days.

So we are following the blood counts as we go. He’s just about as low as he goes. We are deep in the valley and still going down. Hopefully it’s a pleasant valley, and a flash flood doesn’t hit him. In a week or a month he will begin the climb out again.

So what’s it like in the valley? Well let’s just say Spencer hasn’t quite felt himself. But the good news is, he seems to have the nausea controlled. That’s allowed him to feel better than he did at Day 0 to Day 3. So he’s been playing cards and on his computer playing Neopets and exchanging the odd message with his friends. So things are a lot better than they could otherwise be. He says a few words now and then. He still walks to the tubroom under his own steam.

So we’re doing OK. And Tracey has taken up water colours. She painted an awesome picture of Scupper. I guess she has moved beyond the knitting craze. Busy hands are good for the mind. Why the hell do you think I typed this long message?

Friday, January 14, 2005 3:08 PM CST

Day 0,+1, +2

Hmmm. Seems I missed a day somewhere.

The logistics have been kind of hairy. But we had some help along the way. OK we had a lot of help along the way.

When Spencer and I got on the ambulance yesterday morning, the dispatcher came on the radio and wished Spencer and Foster good luck for the day. Soon there were other ambulance drivers on the radio with their encouragement chiming in.

We had the radiation treatment. I let the team there know that they could read all about the Theratron 780C on Spencer’s website. They were keen.

On the return trip we swung by the ambulance dispatch station and picked up some hats and handshakes from the dispatcher. I’m not sure what Spencer and Tracey did the day before but they obviously made an impression on the BC Ambulance Service.

We did the mom and dad swap and I headed down to recovery with Foster. It may sound like I was the ever present care giver, but it’s actually all about boys being with their mom in their greatest moment of need. That’s what drives everything. Thank goodness they didn’t tear Tracey in half.

It didn’t take long between apple juice sips in the recovery room and barf trays up on 3B before it was time for the swap back and the afternoon treatment.

I was nearly falling down with hunger by this point, but some angels were watching out for us. I had a vague recollection that Tracey mentioned there was some Lasagna in the fridge. I bumped into friend Sue in the parents lounge on my way to pee. She asked if there was anything she could do. I mumbled something about lasagna, plates, and a microwave and ran back to rub Spencer’s back. Soon the ambulance drivers arrived and I ran back to see about food. I looked in horror as Sue had cut into some other family’s beautiful seafood lasagna rather than the Costco stuff that we had left over from Saturday. Then I looked at the label and it had our name on it. Dropped off anonymously with a Tabouli signature. I gobbled Lasagna as they loaded Spencer on the stretcher.

I took pictures on the ambulance as instructed. When we got back to the cancer agency, I snuck a few pictures of the Theratron 780c. It turns out I’ve been unkind to the Theratron. It was new only a dozen years ago. My comments about the Theratron may leave the wrong impression about the cancer agency. It may be an old piece of gear among a vast array of ultra modern equipment, but it’s really the people that stand out. They are professional and meticulous. But more than that they are caring. They even put Spencer’s shirts in the warmer so they were nice and toasted when we were done.

We were finishing up the last appointment 40 minutes early after a variable schedule all week. They said they would try to get an ambulance to come early, but we would likely have to wait. I asked them to be sure to mention that it was Spencer looking for an ambulance. They laughed thinking that wouldn’t make much of a difference.

Two minutes later there was a call from BC Ambulance Service. Steve the dispatcher wanted to let me know that he was sorry, he was sending one from UBC hospital, but it would still take a few minutes. He gave me a briefing on the twins who run it: two funny bald guys just like Spencer and me. And they were great. Our host for the return trip even mentioned to Spencer that he had had a bone marrow transplant 10 years ago. But not to worry, unlike him, Spencer’s hair would grow back.

It was a long tough day. Foster was ready to walk up and see Spencer an hour after surgery was done. The nurses weren’t ready to let him go. They were worried about his hemoglobin, which was 109 and called Spencer’s oncologist who performed the procedure to see what she wanted to do. She wasn’t worried. Counts like that look fine to an oncologist, and she had first hand knowledge of Foster’s rather impressive marrow. 500 ml from a 6 year old!

When Foster was discharged, they let him have a wheelchair. Nanny was there in hers. He raced her through the hallways and won by a good margin. He rolled in the wheelchair, pleased to have his own medical special needs.

Spencer bathed and moved into the transplant room. Tracey, Spencer and Foster cuddled on the bed as the new bone marrow dripped in. Nice to have the family all under one roof.

Foster is staying at home with Leanne and Uncle John. He’s off school. Not necessarily because he needs to be. Sometimes it’s just nice to get special treatment for a change.

We’re all staying in touch over via webcams. Spencer “goes” to school a couple of times a day. He says hello to his buddies and plays checkers and tic tac toe remotely. Scupper visits Spencer electronically. Mom or Dad can do electronic tucks from home. All very hygienic. No need to wipe with Alcohol.

Thank you to everyone for your emails, phone messages, and lasagnas. They are all giving Team Spencer energy. I don’t know how we will every thank everyone properly.

Please go ahead and sign the guestbook. We love to know who drops by.

Cheers,

Steve

Wednesday, January 12, 2005 0:10 AM CST

Day –1 and counting.

They moved us out of the transplant room today. They are going to clean it out and put us back in it tomorrow.

The father’s pre-transplant instincts return easily to me now. I wipe everything with alcohol. I touch nothing I don’t have to. I take the less busy elevators. I open lever type door knobs with my right butt cheek. Regular round door knobs are more challenging. Given rubber pants, I would have a fighting chance at a two cheek twister.

Foster checks in at 6:30 tomorrow. 8:00am and they will suck his bone marrow out. Four hours in recovery and he’ll be a free man. My guess is it won’t be much fun no matter how many new stuffies he has.

Spencer has four more ambulance rides before he ends his relationship with the Theratron 780C. He has no fondness for the machine. And ambulance rides only sound glamorous when you don’t have a tube down your nose and a barf basin under your chin.

Around 4:00pm, they will hose him down with a pressure washer insert him in the transplant room and give him his new bone marrow. I hope they keep it refrigerated. 7 hours is a long time to leave it lying around.

The nurse gave us hygiene instruction today. Including personal hygiene. We must bathe regularly and wear gowns over regularly cleaned clothes. Including clean underwear. But I asked. They’re not really going to check for skid marks. The underwear is on the honour system. I won’t wipe the nurses with alcohol.

We established our first video link from transplant room to classroom today. No audio. So I keyboard chatted back and forth with Spencer’s buddies. They even dragged Foster into the classroom so we could say hello. It was cool. I can’t seem to connect with Uncle Johnny on his webcam from the hospital. We tried video. He saw nothing. We tried audio. He heard nothing. In desperation, I farted. He smelled nothing.

Oh well tomorrow the family will all be together under the same roof. It’s not the right roof. But it’s the same roof.

Two hours to Day 0.

Monday, January 10, 2005

If A Tree Falls in the Forest

If you expose your child to a lethal dose of radiation, but then save them with fresh bone marrow, is it truly a lethal dose?

This was the strange question that went through my mind this morning as I took Spencer to the Cancer Agency for his first of six doses of total body radiation.

We almost didn't make it. I woke up and picked my watch off the shelf by my cot and noted what the time was. I felt well rested, but it was only 12:50am. I almost rolled over and went back to sleep but decided to spin the watch around and have another look. It was 6:20am when you look at the other way. Thoroughly confused and lacking any visual cues, I finally decided that my bladder was the best indicator and rolled out of bed. Always trust your bladder. We made it on time for the appointment.

Total body radiation is a bit of a different experience. The machine is not exactly like some of the other high tech gismos we're familiar with that have the built in DVD players with articulated flat panel video screens. It has more of a 1950s sci-fi feel about it. Spencer lays down on the floor on a rolling plywood platform. They line him up with marks and have little lead lung shields suspended in a frame above him. When they are satisfied that they have him positioned right, they drop sand bags all around his legs, torso and head. Then they slip an x-ray film underneath, turn on the Theratron 780C, expose the film and make sure the little shields line up over his lungs. They didn't have it quite perfect the first go around and messed about with a ruler and felt pens moving things a few millimeters left and right until they were satisfied. They advised me not to worry, they deduct the x-ray exposures and make adjustments for the total dose. This was most comforting.

When I stepped outside to the operators console I was a little stunned. It was a panel with great big clunky backlit press button switches and little LED readouts. I felt pretty certain that no Windows XP bug was somehow going to overexpose Spencer. "Wow this is pretty much the best technology the 1970's has to offer isn't it?" I asked the technicians. They weren't really sure whether it was that or the early 80s. But they reassured that the Theratron 780C was the most accurate machine they had. It has it's own onboard live cobalt and their treatment planning takes into account the half life of the molecule. All much better than something that comes out of a linear accelerator.

Spencer lay motionless through the whole thing. I think it was out of comfort rather than terror. They would have had to strap me down.

So anyway we are on Day -2. His chemotherapy is all done. Five more radiation treatments to go. Foster goes in early Wednesday morning and Spencer gets new bone marrow after his last radiation on Wednesday afternoon. So the whole question is about as relevant as when the tree falls in the forest. Who cares? Just get the new bone marrow in.

Spencer is doing well. When he is not hooked up to an IV pole he's been tearing around and has even gone outside to play in the snow. He's had to have baths twice a day because the chemo he is on works it's way out through the skin and is a bit toxic so it would give him a rash if it's not washed away. Yikes.

Oh and I Googled the Theratron 780C. The good news is that one of the first few links claimed "Theratron 780C is accepted in the world as the gold standard in Cobalt therapy." The disturbing part was that when I clicked on the link it took me to the Morbai Naraindas Budhrani Cancer Institute rather than John Hopkins or the Mayo Clinic. Hmmm....

Saturday, January 8, 2005 2:12 AM CST

Tongue Slap

Spencer invented a new game the other night. It was a multipart affair. Quite sporting. I’ll describe how it is played for those who are interested.

The game begins with a warm-up period. First you take your water dog upstairs to your parent’s bedroom. Play soccer with your dog for twenty minutes. Bonus points are scored if you can kick the mini soccer ball past the dog out into the hallway and down the stairs so your dog has to run down and fetch it.

Once the dog is thoroughly exhausted, the game can begin. Sit on the dog’s ball. As he stands next to you with his tongue extended to twice its normal length, panting heavily, waiting for his ball to reappear, slap his tongue. Bonus points are scored if you can get it to make a great smacking noise like a good high five. Slap it again. Smack it as many times as you can in rapid succession.

Now the sporting part begins. After the dog has figured out that the game is no longer soccer, and his tongue starts to get sore, a new phase begins. Spencer calls this “Advancing to Level 2”. This is the point where the dog tries to snap at your hand as you try to smack his tongue.

The trick in level 2 is to see if your hand is quicker than the dog’s jaws. If you can continue to smack his tongue without getting bitten until he closes his mouth and keeps his tongue inside, you win the game.

If you lose your fingers, well then I suppose you don't win the game.

To play again, simply pull out the soccer ball and kick it down the stairs a few times. He’ll be back with his tongue hanging out in no time.

There is simply nothing quite like a good game of tongue slap between friends.

Warning: This game has only been tested with water dogs and nine year old boys with fast hands. Not recommended for slow kids or terriers.

Friday, January 7, 2005 2:32 PM CST

I was talking to my old friend Bob (not his real name) last night. He was asking me about other friends and family and wanted to know if everybody was doing all right.

I had to think about it. It struck me that nobody ever complains or bitches and moans about how miserable life is and what their problems are any more. Everybody I know just seems to be getting along and we never really hear about ordinary pain and misery and hardship.

So I guess one of a few things has happened:

a) the world has taken a sudden turn for the better and all my friends and family are enjoying much improved lives.

b) everything is constant and we've just stopped listening to our friends and family

c) childhood cancer just gives everybody a healthy dose of perspective

Given what I read in the papers or see on TV, I can find no evidence that world has taken a sudden turn for the better. I'll discount A. B is a definite possibility, as we certainly have that thing going on where the whole world seems to revolve around us. We might have stopped listening.

But then Bob did a wonderful thing for me. He shared with me the misery of his recent colonoscopy experience. I'll spare the details, but it was rich and descriptive narrative that included a run down on the year of avoidance, a horrific description of the instrumentation in the chamber of darkness, and thankfully, news of the sedative which pretty much spared even Bob the finer details. It was a wonderful thing. I felt for Bob. But what really struck me was how nice it was to hear of other people's woes. It was wonderful to hear of minor torture that had nothing to do with my children, but closely touched a friend. I reveled in his misery. It was a wonderful thing for him to share. I listened.

I miss ordinary hardship.

So I'm going to discount B as well.

We'll have to run with C. I'm looking forward to the day when my friends lose that sense of perspective around me and feel compelled to share the finer details of why their boss should be drawn and quartered or just how badly their golf game has deteriorated. I'll be listening.

Thursday, January 6, 2005 2:10 AM CST

Foster The Brave

Foster went for his autologous blood donation today. You know how they drill oil wells? They do the seismic exploration. They locate the likely salt domes. When everything looks promising, they stick a hole in the ground and see what they find.

That was pretty much how Foster’s blood donation went today. The problem was Foster is not Texas. He is not Alberta. He’s more like Saskatchewan.

They stuck a big needle in. Maybe too big. It pretty much filled the whole vein. No real flow happening. He clenched his fist. He wiggled his arm. They wiggled the needle. Jabbed it in and out. Nuttin. So the nurse started eyeing his other arm thinking maybe it held better reserves. She suggested a little break followed by some exploration on the other field.

Well the little guy was pretty brave to this point. Not even a tear. But when she suggested they repeat the painful, seemingly pointless exercise, that pretty much cracked him. Lot’s of salty water but no blood. Doctors were paged. Extra blood is nice to have and a little lack of it stimulates the bone marrow, but they decided that further torture wasn’t necessary.

We pretty much expect results when we torture our children. Not so today. I think the tears were as much about having an opportunity to cry as about the pain. He is a tough little kid. He never tells us that he is stressed or worried. He keeps it all bottled up. Tracey suggested to Foster that maybe she and he should have a crying day together with boxes of Kleenex and wiping each others tears. “I don’t think so Mom” was his response. We’ll have to see if we can get him to start writing instead.

Anyway, next week is the big exploration. They’ll be digging up the tar sands. It might be Foster’s opportunity to get some attention for a change. I know Tracey found a big stuffy for him for when he wakes up. A few cards and little gifty things might be nice.

Does seem like a shameless solicitation? I guess it is.

Spencer and I exercised it on a professional level today. We went to see Dan, parent advocate, Balding for Dollars guy, and source of all kinds of good things like hockey tickets and fun stuff. He had somebody in his office so we mentioned to his colleague that we came to shake down Dan. He overheard us and stopped his meeting to invite us in. We told him we were starting transplant tomorrow and needed any spare Playdium passes he might have to make good use of the last afternoon of freedom. He made a call and left a voice message. We left to get him a coffee and came back. More phone calls. Bad news. They closed Playdium yesterday. Canucks tickets were apparently not an option either. But that’s OK. Dan knows we’re professionals. We’ll be back.

Cheers,

Steve

PS: If you do send a card for Foster, please feel free to tell him he is brave and you hope he is feeling better soon. Please do not tell him how wonderful it is what he is doing for his brother etc. He is only being told it may help Spencer a bit. If it doesn’t help, Foster doesn’t need to go around thinking that he somehow failed or that there is something wrong with his bone marrow.

Wednesday, January 5, 2005 1:02 PM CST

Let’s try something a little different on the website. People sometimes use these to check on the status of the sick kid. An old friend who checks the website regularly, remarked that he is largely entertained but really had no idea how Spencer is doing.

Well right now, Spencer is doing great. We all enjoyed the holidays. We spent time with good friends and the boys enjoyed skiing and tubing and all kinds of fun. Spencer is in great shape. He has a ton of energy and is at an all time high for body mass. But he still has cancer. The only clue is his bald head. So more treatment is in store.

Today Spencer is going into clinic for a checkout. Foster will also be at the hospital today doing an autologous blood donation. Tomorrow, Spencer will be admitted to hospital for intensive chemotherapy. 3 or 4 days later he will receive total body radiation over the course of several days. On or about the 12th of January, Foster will go into hospital and have bone marrow extracted from his hips. He’ll get his blood back at the same time and likely be discharged the same day or the day after. Spencer’s bone marrow will be destroyed by the treatment and he will receive Foster’s bone marrow through his IV line. How the little cells find their way into the cavities of his bones is a mystery. Then begins a long process of recovery.

The hope is that with the treatment and bone marrow transplant with perhaps a couple of rounds of chemotherapy afterwards, Spencer will achieve remission. It is a very aggressive treatment and it is very risky. If things go well, Spencer will remain in bone marrow isolation unit until middle to late February.

Friends and family are stepping in as house elves to feed and water Foster and let him out to pee and make sure that Scupper gets his meals and transport to and from school.

We’ll try to update as time permits. Wish us luck!

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