about CaringBridge  |  home page  |  view guestbook  |  view photos  |  journal history  |  donate to CaringBridge

Click here to go back to the main page.

Wednesday, December 29, 2004 1:40 AM CST

First let’s get a few things straight. The jolly fat elf was here. He did in fact cave. The boys got everything.

The real bonus is that they understand that they are spoiled. And the other real bonus is that I like their toys now. In the garage, we are busy polishing rocks in a rock tumbler. In the office, we are busy growing crystals. And tomorrow Foster and I are going to see what snot looks like under a microscope.

But it was a fun Christmas. We made Tracey a gift that was pretty much pure love. OK. So it wasn’t pure love. There were a few impurities including a bunch of Denman Island drift wood, 3 clam shells, 3 oyster shells, assorted bits of beach-polished glass, some old slate floor tiles, a rusty boom eye, the right claw of a Dungeness crab, and the left jawbone of a Ladysmith dog. Spencer and Foster gathered all the memories, did the layout for the design and helped me with the assembly work. Next time we get a kit that includes instructions.

We went up a mountain into the wilderness today. OK so it was mechanized wilderness with a tow to drag us with our inner tubes up the hill after sliding down. It seems to me when I was a kid we had all that fun, but we got our exercise walking up the hill, and the downhill version was a lot like human bowling. Oh there I go with that old fart thing again.

Once we returned from the wilderness and got back to the city, we visited Tracey’s folks. Outside their apartment building we bumped into a mother with her two kids. OK technically they weren’t kids. I guess they’re called cubs. Whatever happened to hibernation? When I was a kid, the bears stayed up the mountain in the snow and dug themselves a cave. Oh never mind.

Scupper of course was spoiled as well. New blankey. New running coat. New snake. And a haircut for boxing day. He liked playing in the snow.

And I got new socks and ate a turkey. Pretty much everything a dad could want for Christmas.

Thursday, December 16, 2004 10:27 PM CST

Merry Christmas!

Another year has passed and we find ourselves once again preparing for battle with the jolly fat elf. We always set up elaborate defenses with lights to ward him off and a tree to block his way, but each year he manages to evade our fortifications and strike while we sleep. I see no reason why this year should be different than past years.

As home invasions go, we have little to complain of. At least the jolly fat elf seems to bring cheer for the children and always leaves more than he takes. Probably has a bit of a drinking problem. Unlike some of our other nocturnal visitors, he never steals the cars when he makes his escape.

The boys have had another banner year academically. Spencer has enjoyed both days and achieved near straight A’s for his effort. He was able to catch up on a month of missed math homework in 45 minutes so all the neurons must be firing. Foster is reported to also be very clever and manages to maintain excellent behavior amid the chaos and confusion of the classroom.

And we reach the middle of another soccer season. Foster remains a tour de force. Last year he scored most of the goals for his team. (OK so it was like 3 out of a total of 5; I never said the Poco Dragons were a tour de force.) And Spencer is about the only kid I know who can finish a round of chemotherapy on a Friday and play soccer on a Saturday and you would never know it if he didn’t take off his hat.

I daresay there is a small problem with this year’s Christmas letter. Tracey has been trying to get me to write it for several days. After rejecting three earlier drafts, tonight she has me on an incentive plan with rum and eggnog. It does seem to get my fingers working, but I’m not sure my brain is keeping up. If we have one of those nasty Christmas letter accidents, I can’t be held accountable. It seems especially dangerous as the rum is kicking in as I approach that part of the letter that is supposed to be profoundly moving and touch your heart. Maybe this year I should target a different organ? Perhaps if you pass wind, my job is deemed a success.

Anyway as the rum sets in, I feel the burden of the Christmas letter lifting. After all, the real purpose is just to reach out and say hello and remind friends and family that we’re all here and we’re OK and we’re thinking of them. It doesn’t really matter that we can’t be bothered to actually write an individual card for you, does it [insert name here]? So we’re here and we’re all OK and we’re thinking of you. OK, so at least we thought enough of you to pull your name out of the database. “What’s that Dear? We’re only going to post it on the website this year?” Never mind. It’s not really up to me to warm your heart.

Because if you’re fortunate, you’ve already figured out that no visit from a jolly fat elf or an annual letter from me or anyone else is going to make much of a difference. Because you’ve already figured out that every day and every hug and every smile and every word of love can warm your heart and expand it until it has enough thermal mass to ride through any shrug or frown or unkind word and scarcely drop a degree. And Christmas is just a tool you use to remind yourself of that and reflect on it and share the same spirit with those you love.

So my job is done. Did you pass gas?

Merry Christmas
Love,
Tracey, Foster, Spencer, Scupper & Steve

Monday, December 13, 2004 12:35 AM CST

Christmas List



-----Original Message-----
From: Tracey & Steve Dolling
Sent: Monday, December 13, 2004 7:20 AM
To: Steve Dolling
Subject: Christmas list

Can you write down a few ideas for your stocking?

I love you.

Tracey

-----------


OK sure. I have bottomless greed.

First we'll start with the usual stuff. I would like peace on earth and goodwill towards everyone. But these are often hard to find. You might want to see what you can find on E-Bay.

Right behind peace on earth would come a decent 10" cabinet saw with a smooth fence system. But these are rather hard to fit in the stocking. And I'm loathe to replace the ancient Rockwell Beaver that brings my Grandfather into the workshop on a regular basis.

So maybe some smaller items. Hugs from my boys. Nothing brings me greater joy. And I love the fact that we have new couches with acres of seating area for everyone, and Spencer still likes to come and sit right on my lap even when he could have a reclining section of his own. So I'll have lots more hugs. Those are great.

Now the next one you might find kind of strange. But I would really like to have a Lulu Lemon Marathon running bra. This is the thing that I want most in the world because I understand that it would make you very happy and what greater joy could there be than that? Besides, Scupper's never eaten one and they cause no nipple irritation. Unfortunately they are as hard to find as goodwill to everyone, so let's move on.

I can always use socks and a new sweater. This is a horrifying statement because that's the kind of thing my Dad always says. So I'm becoming an old fart that is difficult to buy for? Next thing you know I'll be saying it doesn't really matter, it's all about the turkey.

You know I always took Dad literally. I thought he was really a turkey fiend. I am sure he does like turkey, but I think maybe what he really means to say is that he just likes to have the family together and happy and that brings him the greatest joy at Christmas, but he is Dad, and he could never actually say that out loud. So we go on quietly believing that new socks and a drumstick bring him joy in life. No wonder he's smiling.

I'll have new socks and a sweater.

Steve

Saturday, December 11, 2004 1:10 AM CST

Calibrating Love

I was tucking Foster in tonight. I was just about to head downstairs and so we wrapped things up with the usual ritual, "Goodnight Foster. I love you"

Foster: "I love you too."

Dad: "I love you three."

Foster: "I love you four."

...

Dad: "I love you nine."

Foster: "I love you ten."

Dad: "I love you infinity."

Foster: "I love you infinity and beyond!"

And so concluded the tuck. Or so I thought.

But Foster went on. "I love you and Mom infinity and beyond. And I love Spencer a million. I love Scupper ten. I love Nanny and Papa nine."

"What about Grandpa?"

"I love Grandpa nine too. And if Grandma was still alive, I would love her nine too. Is that right, Dad."

"That sounds right to me, Foster."

Considering Grandma died when Foster was 2 months old, he maintains a fantastic sense of equity in the whole thing. But Scupper gets a ten? No species hang ups for six year olds. Oh well, at least it wasn't beyond infinity and beyond. Then I'm not sure what I'd have to do...

Steve

Sunday, December 5, 2004 0:42 AM CST

Not Enough Inputs

I was tucking Spencer in tonight. He was concerned about his TV and wanted to show me the problem it was exhibiting. The whole notion of my kid having a TV in his room would have been a foreign concept to me before he was diagnosed. But at some point it seemed like the right thing to do to drag it out of the crawl space and put it in his room. But I digress.

Mind you, it brings to mind the whole reason we ever replaced our TV in the first place and put the old one down in the crawl space. One day, one of Spencer’s kindergarten friends was over. When her mother came to pick her up, she dragged her excitedly into the family room, “Mom! Mom! You have to come and see this. Have you ever seen a TV this small?!!” It was an assault on my manhood by a five year old girl. The 19” was replaced by a 32” in short order. We never invited the girl back for another play date. But I digress.

So anyway we turn on Spencer’s TV and sure enough it kind of makes a bright pulsing flash every few seconds. “Oh no, Spencer I’m afraid your TV has reached the end of its life.”

“Well what are we going to Dad?”

“I don’t know Spencer. We’ll do everything we can. We’ll open it up and blow out the chassis with compressed air. If that doesn’t fix it, it’s toast.”

There was much moaning and groaning. He was concerned about other shortcomings of his TV. “If I get a DVD player, how can I plug in the Game Cube and the DVD player at the same time?” The whole notion of my kid having a Game Cube would have been a foreign concept... Oh never mind you already know that story. I digress.

“You’ll actually have to unplug the Game Cube and plug in the DVD player when you want to watch a movie.” He was much alarmed and distressed by thought of actually have to reach around the back of the TV and unplug 3 wires and plug in 3 others. His TV should have more inputs he explained. And what is this about a DVD player? I can feel the con coming. But I am inoculated. Look how I’ve resisted the dog. I digress.

“Spencer, believe it or not, when I was a kid, we didn’t even have remote control. You actually had to get out of your chair and turn a knob on the front of the set.” He laughed hysterically. I lost the will to tell him that I never even saw a colour television until I was 5. You don’t want to push the old fart thing too far, even though I want to tell him about dial telephones and the 13 mile walk I used to make to school through 3 feet of snow when the temperature was minus 40. So I shifted a generations to distance myself from the old fart label. “When Grandpa was a kid, they didn’t even have TV.”

“I know that, but what did they do without TV?”

“They watched the grass grow, Spencer”

“They did not. They probably had other cool games like jacks and marbles.”

“I think they probably did Spencer.”

I think there is a letter to Santa brewing in all of this. I hope Santa has the same steadfast will that I do. If he caves in and gets a him a new TV with a built in DVD player and extra GameCube inputs, there is a risk that Spencer will be spoiled. Mind you, compared to the other risks we subject him to on a regular basis, maybe it’s not so bad. But I digress.

Thursday, December 2, 2004 0:14 AM CST

How To Make A Room Fully of Oncology Professionals Cry

Well what you don’t do is shout across the room, “Watch out Sponge Bob, they’re going to take your temperature rectally!” I found out that just makes them laugh. But one of the gifted and dedicated childlife specialists at the hospital figured out how to make them cry. I’m not sure if that was her intent, but I think it might have been.

Kristina, not her real name, put together a video for an oncology conference. She wanted to bring across what it was like to go through this hell from a parent’s perspective. She handed me a video camera and a list of questions and areas to talk about and asked me to see what I could do. I took the camera and threw out the list and spent a couple of hours one night reading all the old funny stories, giving a video tour of the freezer showing the now famous “nabilone” cookies etc. I had good fun and even put “Nagging Question” on video. At the end of it all I felt a little guilty and wasn’t sure if I had really answered Kristina’s questions so I decided to tell the truth unscripted with some of the longest sentences ever uttered from my lips:

“The truth is that we wear this incredibly thick armour that’s pretty hard to puncture and we don’t share with Spencer or with our friends or with the doctors what are real fears are and what we’re living with and most of the time, we don’t even admit it to ourselves. You know you can be driving down the road and hear a song on the radio, and you mentally do the planning for your kid’s funeral and think that might be a good one, and then you feel guilty for even having those thoughts, and you put back on your steely armour, and you march forward every day and you do what you need to do to keep things going, and the funny thing is there aren’t really a lot of options. It would be really nice to just check out for two months and have a nervous breakdown and spend the day screaming and ranting and doing whatnot, but one way or another, there has to be something on the other side and we need to keep ourselves and our kids together and engaged and having fun and that’s what we really work on every day.”

Well Kristina did an amazing job editing all of this together. She used the entire “Informed Consent” story and unique interview clips with a nurse who was an oncology parent and tons of images of the kids closed it all out with the tag end of the “Life and Death and Warts” as voiceover which went like this:

“It's bizarre. It's surreal. Our lives are full of high drama. A life and death turning point could come at any time. But then there are warts. It's a long string of events that are punctuated by moments of high expectation and terrifying fear. But there is no life and death turning point. Life and death are the same thing. They are served up together every day in small slices to chew on and savor or spit out in bitter rejection. One moment looks a lot like the moment before and there's no telling exactly what the next moment will look like. We progress from one to the next with varying acceleration. It's pointless to look back. It's pointless to look too far ahead. It's pointless to sit in fear waiting for someone else to tell us how far we are from the destination.

So what's the point?

Enjoy the moment. They're all beautiful.”

And that’s how to make oncology professionals cry. And I know it must have worked. For I heard rumours that nurse Heather, not her real name, whom I greet each day with the phrase “Good morning, Dear Battleaxe” even shed a tear.

Cheers,

Steve

Tuesday, November 30, 2004 0:13 AM CST

The Greatest Canadian

It’s a strange country we live in. We just went through a great national exercise to determine who the greatest Canadian of all time is. Were a humble bunch, but not all that smart.

When it was narrowed down to the Top 10 Canadians, we chose two Scots: one of them Canada’s legendary founding alcoholic Prime Minister; the other, inventor of the telephone. I could understand if we were talking digital cable boxes or the cell phone, but a regular land line? What does this say about the greatness of our country?

We threw in a couple more prime ministers, the inventor of insulin, and a world-class environmentalist. And because this is Canada, we chose a hockey player and a hockey broadcaster. The rest of the world will never understand, but we don’t feel the need to explain. We can’t explain it ourselves.

We were glued to the set tonight as they narrowed the field down to two choices. It was between Terry Fox and Tommy Douglas. We were cheering for Terry.

Terry was a kid from Port Coquitlam, our town, who lost a leg to cancer, and then started the Marathon of Hope running across the country on one leg - a marathon every day. His cancer came back after 5000 km. He only made it half way, but he did reach his goal of raising a dollar for every Canadian to fund cancer research before he died. Now they hold Terry Fox runs in 60 countries every year and have raised $360 million. I admire his courage. I don’t think I really understood it at the time, but I do now.

So who did we choose? Not Terry. No, the nation voted for Tommy Douglas, a socialist politician, who at least half of the country had never heard of before this contest. Tommy founded a little program called Medicare. I don’t think I really understood it at the time, but I do now. I don’t ever worry about paying medical bills or fighting with insurance companies. It gives me time to spend with a little guy who quietly runs a little marathon of his own every day. I admire his courage.

Maybe Canadians aren’t so dumb after all.

Monday, November 22, 2004 11:41 PM CST

The End Game

We’re in the end game now. Down to two pawns and a king. The opponent still has a bishop and a knight. I won’t say it looks hopeful, but it’s not over yet.

I’d like to think it was just bad luck. But it is never just bad luck is it? There always has to be a failure in strategy.

I underestimated the opponent. Sometimes you think you are smarter and can relax a little bit. It’s a fatal error. For me, I let my guard down at the wrong moment, and it was almost over before I knew it.

It happened the other weekend at the cabin. Surely Scupper could sleep upstairs? The rest of them were all for it. I couldn’t see the problem with the logic. After all it wasn’t our house. There were no carpets. And he wasn’t going to be allowed to sleep on the beds. There were no toys or Lego to chew, so what’s the problem?

I gave in. The pawn moved forward and the bishop’s path was clear.

Scupper, to his credit, was extraordinarily well behaved. He slept quietly beside the boys. He didn’t come in and jump on me in the middle of the night. Didn’t sneak up on me in the morning and stick a cold nose in my back or a wet tongue in my ear. He did his best imitation of a door mat.

I thought nothing of it. As far as I knew, the only thing that we had established was that the house rules were limited to the house, and vacations were a different matter.

It was three days later when the bishop slipped across the board and took my queen.

We were on our way upstairs to bed and Tracey put the little anti-dog gate to side and said, “Why doesn’t Scupper come upstairs with us? He was so well behaved at the cabin.” She smiled one of those heart-melting smiles, turned around walked up the stairs and called, “Come on Scupper!”

He just slipped past me sort of melting into the wall as he went by, avoiding eye contact. I just stood there speechless at the bottom of the stairs. He’s been sleeping upstairs ever since.

Spencer was just downstairs. He has a bone marrow biopsy tomorrow. Having a little trouble falling asleep so he came downstairs to warm himself a glass of milk. He wandered into the room and asked what I was doing. I said I was writing a story. He came over to the computer and saw the title “End Game” and read the first sentence. I had no choice but to sit him down and explain it all. Scupper and I are engaged in an epic battle and his mission is to displace me from my bed and forever relocate me to the couch downstairs.

Spencer had fallen under the spell of the black king long ago. He had no idea of the magnitude of the struggle. His solution was simple.

“Why don’t you just get a bigger bed?”

Checkmate.



Steve,

The Fallen White King

Monday, November 15, 2004 1:48 AM CST

Who's Counting?

5: That was the number of deer that we saw on our way to the cabin this weekend.

26 hours: The length of time that Dirty Rotten Kitty lasted before Scupper managed to rip a hole in it and start pulling the stuffing out. I’m sure he loved his birthday present. He just loves things with his teeth.

2.6 kilometres: That was distance we had walked on the Wild Pacific Trail before we got to the sign that read. “Warning: Cougar Sighted in the Area” But that was OK because it was starting to get dark so we couldn’t see any cougars anyway.

90 minutes: The length of time that Foster squealed in delight as we stood on the overlook at Wikaninnish beach watching the waves come in and hit the rocks throwing spray up and soaking the boys while huge breakers rolled in throwing massive logs into each other making thunder roll down the beach.

2000 miles: The distance some of the waves travel before they crash on the beach.

3: The number of black bears we saw munching on salmon in the rivers.

13 years: Time elapsed since I married Tracey on a stormy November day when the wind blew down trees blocking roads in Stanley Park where our reception was planned at the aquarium and she called to tell me that there might be a change of plans.

7: The estimate of the number of sea lions who were hauled out of the water just down from the cabin based on the volume of their howling. We never actually saw them, but Scupper is completely opposed to sea lions even though he has never seen them.

104: Foster’s count of the number of waterfalls we saw driving home when the skies opened up and fell down. A dozen of them were just falling off of cliffs right onto the road.

8 feet: The length of Spencer’s tubular knitting creation as he busied his hands while we travelled the highways and hung out in the cabin.

4: The number of ferry sailings you would have to wait when you show up at the ferry terminal at 3:00 in the afternoon on a Sunday after a long weekend. (An overnight snooze in the parking lot).

2: The actual number of sailings you have to wait when you tell them that waiting overnight is not an option because your son simply has to be back to start his chemotherapy at 8:00 in the morning.

60 knots: The apparent wind speed when a ferry travels at 20 knots into a gale that is gusting 40 knots.

15 degrees: How far you have to lean your body over to walk into a wind blowing at 60 knots.

6 minutes: The length of time it takes two boys to fall asleep after a long weekend in the rainforest on the West Coast of Vancouver Island.

Wednesday, November 10, 2004 1:47 AM CST

The Importance of a Good Education

As soon as Spencer got settled into Grade 4 we started up some pretty intensive treatment. He was only in school for a few days to establish where his desk was, say hi to his friends, meet his new teacher, and then out to learn more about the about the finer points of cisplatin for the better part of a month. As soon as he recovered enough to warm his seat in the classroom and play a few games of soccer it was time to hit him again. So three months of the school year are gone and if you add up all the days he’s been in class there is no need to take your shoes off.

Last week it took him 25 minutes to catch up on a month of math homework. There is something to be said for playing Yahtzee instead of GameCube. Not that it all goes without a hitch. Spencer goes to a French school. We don’t really speak much French and sometimes don’t always understand the homework assignments. On one exercise the instructions read:

Additionne. Quelle est la somme?

425 a. 522 b. 322 c. 568 d. 282
+143
------

So Tracey had him add up 425+143+522+322+568+282 and write in the answer and repeat the process for half a dozen questions. He got them all right. And then they got to the back of the sheet with the word problems and then they figured out that it was supposed to be multiple choice. Whoops.

But its not all about being a math whiz. In the last three months he’s missed a lot of reading, writing, and conversation. And when it’s all in French and that cisplatin has taken away most of your hearing, that first day back in the classroom can be hell. Such was the case today. Spencer was kind of overwhelmed with the prospect of getting back up to speed and only lasted a short while.

So we’re working through it. You sort of wonder how important it all is the grand scheme of things. But to be with your friends and have a place to be where they don’t stick a thermometer in your mouth and take your blood pressure every couple of hours is actually pretty important. And if we give in and tell him not to worry about school, that could be kind of a frightening message. So we’ll work on trying to get him to be easy on himself, and have the teacher set small goals so he can have some wins and just be there and be comfortable. Besides, next week he starts another round of topless cyclone.

We’re working with the school and some generous donors to set up a web camera in his classroom so he can be there even when he’s not. That should be good. And while we’re at it, I think we might enrol Scupper in an intensive French program so he can be Spencer’s tutor. We’ll see how it goes.

Speaking of Scupper, it will be his birthday in a few days. And Tracey and I will be celebrating our wedding anniversary. And everybody’s in good shape. So if the medicals say it’s OK, we’re going to load up all the boys, jump on the ferry and head to the west coast of Vancouver Island for a long weekend. There’s something about running around on 14 miles of deserted beach while giant storm-driven breakers crash down and a warm fire waits for you back in a log cabin.

Ya. That would be educational.

Wednesday, November 3, 2004 0:23 AM CST

Home at last!

Wednesday, October 27, 2004 0:02 AM CDT

Sparker ate the mopcorn.

And the cheeseburger. And the pizza. And the macaroni. And a bunch of other stuff. He always seems to like to take it to the edge. Just to the point where they want to stick a hose down his nose and then a little voice inside him says, “Screw that idea!” And he eats and drinks.

There is something about hot melt glue and Nabilone that is compelling. He has spent the last two days gluing together popsicle sticks. Now there are bird feeders with patios and tables and chairs, little fly in retreats for the feathered set. One of them features a full set of Starbucks logos and is eagerly awaited by its namesake coffee bar downstairs. The child life specialist has had to steal the inventories of craft sticks from all the other wards just to keep the factory going.

And somewhere inside, things have turned around. His blood cultures have come back negative for the nasty bug that had invaded his line. That’s good. Much better than going the other way. So the countdown begins. Seven more days of IV vancomyacin and we will be free.

In the nether regions, things aren’t going so well. The diarrhea continues. They called me yesterday. Could I bring them a stool sample?

“Do you need this collected in some kind of sterile fashion?”

“Oh no, that’s not necessary.”

“So, just a regular collection will be fine?”

“Oh yes.”

“Does it need to be a fresh one?”

“The fresher the better”

“I’ll see what I can do...”

I was so exhausted I nearly dropped it down the return slot at the Roger’s Video store out of habit. They thought that was very funny when I told them about it at the clinic next door. I’m glad others are amused at the decay of my mind. It kind of makes it all worthwhile.

They phoned back a few hours later. No need to bring him in for his appointment. They had already made the diagnosis.

Scupper has roundworms.

Apparently we haven’t been giving him his monthly doses of Round Up or whatever we’re supposed to give him. Too many damn medications. How can we remember them all? Now the nasty clingons are all making sense.

Ah well. Today was CT scan. Or half of one anyway. They didn’t do his chest because the respiratory virus will give false positive readings. This was followed by an MIBG injection. Those scans tomorrow and Thursday. Bone marrow biopsies next week. We’ll see how this cancer thing is doing. I guess that’s the whole point of this treatment exercise even though it sometimes feels like its just a test of character. For good measure they’re throwing in tests for heart, lungs, kidney, and hearing to see what unintended damage we’ve done and what headroom we have to do more.

Hard to believe we’re only getting started.

October 24, 2004

Dear Mr. TV Man:

You are evil. You have done wrong. You must change your ways.

I have the capability to convince you of these things in an eloquent fashion, but I am exhausted beyond all measure of human exhaustion. Please see the light, credit my Visa by the appropriate amount, and leave my insurance company alone.

If by chance you don’t see the light, just let me know. Perhaps tomorrow I shall have the energy to provide illumination so bright as to burn your retinas in spite of the attenuation provided by your rectum.

Thanks So Much,

Steve

Sunday, October 24, 2004 11:46 PM CDT

“Sparker wants mopcorn.”

These are words to please any parent whose kid hasn’t eaten much of anything in the last two weeks. Last time Spencer was in good humour and being silly, he was Nurk, The All Powerful. The next day he was embarrassed for his Nabilone induced flight of fancy and took great offence at being called Nurk.

Then came the cisplatin. Then came the respiratory virus. Then came a little cough. Then came respiratory isolation in a room so dry we might as well have been living on aircraft for two weeks. Then came an infection of his central line. Then came the fevers. Then came the big gun antibiotics. Then came the diarrhea.

There went Steve’s sanity. There went 4 kg of body weight. There went any chance of escape for at least another week. There went all humour.

And the misery set in. And so it sits.

We were deemed unsuitable for the oncology ward. A biohazard. We all have the dry cough. They threw us out. To a new ward where we have to train the nurses. But they made one critical mistake.

They sent around the TV person who offered to give us television for $10 a day. We get it for free when we are humans on the oncology ward. We were given the option of screwing our insurance company for $100 a day by making a semi-private room request and then they would throw in TV for free. It made me angry. Now I never vent anger on the medical staff. But TV people are fair game. But not the nice lady who is just doing her job. No. I want names and email addresses of the bosses thank you. Turns out she gave me the name of the Business Development Manager. Perfect. I feel a letter coming on.

Spencer’s fever hits 39 degrees with regularity. He just lies in bed, speaks only when spoken to, doesn’t eat, and doesn’t drink. The TV was for me not for him.

But today he felt like Yahtzee. We played many games. He ate a little bit of a cracker.

And tonight, he drank a glass of apple juice.

And the Nabilone is making him silly again. And hungry.

So he said to Tracey, “Sparker wants mopcorn.”

When you hear words like these, you hang up the phone on your husband and you run for the microwave.

And so she did.

Can’t remember if I told her I love her. But I do.

Steve

Tuesday, October 12, 2004

Nurk, The All Powerful

We sat down for dinner tonight and Scupper had lost his mind. He kept diving under the dinner table pawing away, running between the chair legs and causing general mayhem.

I advised him in the most civil of tones that I thought his behaviour was inappropriate. Which is to say I barked at him in Clingon at a level just below the below the point at which he pees on the floor in mortal terror.

Then giggling revealed the true source of the mayhem.

Spencer had made an investment. At the loonie store today, he bought himself some kind of small laser pointer. It projects a perfect target spot for Scupper to chase. With a flick of the wrist Spencer can make a 55 lb dog bound 15 feet across a room at high speed and crash in to the wall. Scupper positively wants to stun red spot with one mighty blow of the right paw and then chew it into individual photons. But it’s too quick. It jumps on top of his paw before he can even stun it. On ceiling, it’s just plain unfair.

The effect on Spencer is no less dramatic. He giggles uncontrollably. We had dessert in the family room. Pumpkin pie on the coffee table with red laser spot? Not a good idea. Incorrect Spencer. Do not lead your dog into temptation. Tracey came along and advised Spencer that it was time for his Nabilon – more cisplatin starting tomorrow. Was she crazy? Did she think the boy needed to giggle more? He took it.

As I was lying in our bed reading with Foster, Spencer was making trips back and forth into the room loading up his bag to take to the hospital tomorrow. “Nurk wants to bring his Gamboy.” And a moment later, “Nurk wants to bring his GameCube.” Always in the third person.

“Who is Nurk, Spencer?”

“I am Nurk.”

Soon Nurk wanted to pack a television. Then Nurk wanted to pack the cable outlet so that he could get ALL the channels. Next thing you know Nurk has a little red laser spot that tracks all the way up into the bedroom. “Look Noddy, Nupper has joined us.” I screamed in Clingon, but I swear my heart wasn’t in it.

Soon we all had new names bestowed on us by Nurk. Foster became Noster. Tracey became Nummy. (She likes her new name.) Scupper was Nupper, and I of course, was Noddy.

As we were doing the final tuck in the boys were shouting back and forth between their rooms. “I don’t want to be Noster. I want to be Zoster.”

“No you have to be Noster. You must listen to me! I am Nurk, The All Powerful!”

I was all too happy to have Nurk, The All Powerful safely tucked into bed. I was beginning to fear that I would look down at my crotch in mortal terror to find it illuminated by a little red laser spot with a 55 lb dog bounding forward determined to reduce it to individual photons.

Cheers,

Noddy

Monday, October 11, 2004 1:43 PM CDT

Most Valuable Player

The coach called last week. He had kind inquiries about my cardiac status, but that wasn’t the real purpose of his call. He had managed to fill in that unnecessary break in the soccer schedule over the Thanksgiving weekend. He had found a tournament for the team to play in. There would be four soccer games: two on Saturday and two on Sunday. Would Spencer be up for it?

I suggested that we would at least try to attend a few of the games. I didn’t know if Spencer would be ready to play. After all, he had spent most of the last month on his butt in the hospital and has a new set of plumbing hanging out of his chest. The coach suggested we dress him anyway and if he wanted to play, he would play him.

I asked Spencer if he wanted to play in a soccer tournament on the weekend. He didn’t pause to think about it or wonder how he would do. His immediate response was, “Sure!”. It’s not good to underestimate Spencer. He has a habit of surprising.

Saturday morning rolled around. I had picked up some kind of bug and spent the night alternating between shivering uncontrollably and soaking the sheets in sweat and didn’t make it out of the bed for the first game. I don’t quite have the character of my son. Tracey took the three boys to the game. Apparently it was quite exciting. Spencer’s team kicked some butt and won ten nothing. Spencer almost scored one of the goals. That was enough to get me off my butt and out to the second game. Besides, Tracey said she needed more batteries for the camera.

The second game was also quite exciting. All these soccer parents are turning into quite the fanatics. A few short years ago, they all started out as minivan drivers and shoelace tiers. As the soccer has improved, they’ve turned into rabid fans. Every good pass or scored goal evokes wild cheering. The missed opportunities are followed by cries of “Good try!”. It’s an electric atmosphere. I just get a kick out of seeing Spencer out on the field being a kid and have about a thousand pictures of him more or less standing around on defence waiting for some action down his end.

Each day of the tournament, the teams choose a couple of most valuable players. The coach had some nice things to say about the play of the entire team making it difficult to choose any one that was truly outstanding. He awarded one of the prize soccer balls to Spencer for doing well in circumstances that weren’t always entirely in his favour. It brought a tear to my eye and smile to Spencer’s face.

Sunday’s games were against some tougher opponents. At halftime, in the second game, I saw Spencer shifting his wool cap around on his clearly overheated little head. I brought him aside and suggested he didn’t need to wear the hat and if he took it off, the other team would be afraid of him. He didn’t say anything and just returned to his team. But when he went out on the field in the second half, he had a kind of menacing grin on his face and he would look at the other team and rub his shiny head. It was pretty cool.

A most valuable player indeed.

Steve

Monday, October 11, 2004 12:26 AM CDT

Shoe Size

I was sick on Friday. I watched everything there is to watch on TV.

I used to love home improvement shows. Now they are all reality based. Which means of course that they are unreal. The victims are removed from their houses while 40 people do a shoddy job renovating their place in 3 days. I can’t bear to watch them anymore. Whatever happened to Norm? Now the only good shows on television are the ones where they fabricate hot rods and motorcycles. I have to learn to weld.

The boys returned home from school on Friday afternoon. Since there was a gap in decent programming, no American Chopper or American Hot Rod, we watched a documentary on shoes on the Discovery Channel. It was quite excellent really. It covered everything from 5000 year old shoes to modern Nikes. Biomechanics of ballet and soldiering. Testing from grip to electrical shock at 15000 volts. Very informative.

I’m not entirely sure why, but the producers of the show felt compelled to bring up the relationship between shoe size and penis size. It was one of those awkward moments. You think you’re watching family programming and then they take you over the hairy edge. What to do? If you change the channel, penis size becomes one of those forbidden taboo subjects of great interest. So we just continued watching.

The topic is pretty well researched. In general, there is some loose relationship between the size of the body’s appendages. But there is no really strong correlation between shoe size and penis size. The strongest correlation they have found is with the span between tip of index finger and thumb when the hand is fully extended.

Eventually it passed and they went on to talking about the finer points of leather. We were safely through it. No questions from the boys. They probably weren’t even paying attention. I wasn’t going to have to explain anything. That was good.

Later on, Tracey decided to take Spencer and Foster out to a movie with their friend Michael. They picked up Michael and were driving to the theatre. In the back of the car the boys were all very busy comparing the span of their hands from tip of index finger to tip of thumb.

Apparently, they were paying attention.

Sunday, October 3, 2004

Date Night

Last night was date night. Pretty much the height of romance. It had all the attributes of a perfect evening, a little excitement, undressing, a small bed with fresh sheets… But I shouldn’t go into all the details.

Well OK. Maybe I will. In due course.

It wasn’t the usual sort of date night. After all, Spencer was only out on day parole. He had to go back to the hospital.

But that didn’t stop me from including all the romantic touches. At Costco I picked up a bunch of flowers to go with the jug of milk and the tomatoes. Not to mention a new shirt. I was looking spiffy. Tracey reminded me that we weren’t supposed to have cut flowers in the house when Spencer’s counts were so low. I think she threw them out.

We had our dinner together at home for the first time in a long time. We even had friends over. In our keenness to make sure that we didn’t miss our planned movie, we left poor Tonya loading the dishwasher and folding laundry as we rushed out the door with the boys. Fine hosts we are.

Our first stop was Children’s Hospital. We had made arrangements for Auntie Vicki to watch the boys while we went out and enjoyed the show. We got everyone settled in and we were on our way. Alone at last. All was well.

Sort of.

There was a small problem. As we made our way over the speed bumps and out of the hospital parking lot, the pain in my chest, which had been bothering me off and on all day, became quite a lot worse. I woke up in great discomfort on the hospital cot in the morning. The pain seemed centered on my heart and radiated up into my neck and shoulder on the left side. I reached the conclusion that there was no way I could sit through a movie. I was in agony.

Rather than simply dying and leaving Tracey in a terrible pickle, I suggested that we turn right and head for Vancouver General Hospital rather than turning left and going to the movie theatre. She was agreeable. Nothing like a little adventure on date night.

The service at the hospital was really quite good. When you wander in as a nearly 40ish male clutching your chest, they don’t leave you waiting all that long. Spencer and I have a long running joke that nurses are easy to identify because they can’t help but slap a blood pressure cuff on you and take your temperature. They didn’t disappoint. And it wasn’t long before they started diving into my health history.


Have you experienced this pain before? – no.
Any problems with your heart? – no.
Cholesterol OK? – no idea.
High blood pressure? – don’t think so.
Any history of heart problems in the family? - yes, father.
Been under any stress lately? – not that I can think of.

Tracey stopped them there. “We do have a child on the oncology ward at Children’s”. All right I conceded that one. Some minor stress.

Are you on any medications? - no.
Any recreational drug use? - uh, um, no. (Scupper wasn’t there to betray me.)

It wasn’t long till they had little foil pads firmly stuck on all the hairy bits of my body and wired up to their machine. I didn’t cry when they took blood. Spencer would have been proud.

Tracey was disappointingly calm. It seems nothing can faze her anymore. We sat on a little stretcher in a waiting area watching people. An emergency room on a Saturday night is actually quite an interesting place. Ambulance drivers would come in and drop off their charges. We decided to make the best of our date and enjoy the people watching. There were a few annoying people who came in. One guy was claiming that his father had just had heart surgery and wasn’t feeling well. An obvious attempt to jump ahead of us in the cue. Oh well. One of the ambulance drivers had an amazing toupee - quite breathtaking actually.

Eventually the maitre d’ admitted us to the general emergency room. No more cocktails in the lounge. He had a nice little booth for us far away from the kitchen and he introduced us to our waiter Tony. Tony was a great guy. You could tell he was used to working in the high priced places. Not too intrusive and in your face, but attentive nonetheless. He advised that our blood work would be up shortly and that he had booked a chest x-ray for me. No need to look at the menu. Then he went about sticking a new set of electrodes on me, trying to avoid the hairy bits. “Oxygen saturation is 97%, would monsieur care to try a little bit from the tube and see if we can get it up to 100%” Very thoughtful. And of course blood pressure and temperature.

Tony had that quiet way about him. He pointed out the EKG looked fine, just a little something unusual here. “You see how it goes bump bump and then a little pause and then a bump then a pause and a bump bump.” Nothing to worry about though.

Now since you don’t generally expect emergency room personnel to say something like, “Holy crap, this looks bad, can you hang on for a minute while I get the crash cart?” His words were quietly terrifying. I guess this is how they tell you your having a heart attack. Kind of ease you into it gently so they don’t make a bad situation worse.

The X-ray guy came around to take me for my chest x-ray. He asked me a bunch of questions that really seemed directed at making sure I didn’t keel over while I was under his care. I found this whole experience absolutely terrifying. The last time anybody in my family had a chest x-ray, we got to meet pediatric oncologists for the first time. I wondered if I would still have any good days left and how would Tracey be able to manage after they found the huge mass in my chest that was causing all this pain. Eventually my x-ray tech rolled me back and reunited me with my sweetheart.

I thought the date was going rather well at this stage. Tracey seemed to be enjoying herself as well. It was kind of nice to be away from the kids and Children’s hospital and just have some quality time together.

Eventually the doctor came around. She asked me a lot of questions trying to get me to describe the pain I was in. “Uh, um, it hurts, like here and here. Sort of like a back spasm that won’t go away.” Of course by this time, the pain pretty much did seem to be going away. It’s just like when you go to the mechanic and try to get your car to make the same noise again.

“Are you aware that you have a sinus arrhythmia?” Hmmm. No. Ok, so this is how they tell you you’re having a heart attack. But she seemed so nonchalant about it. These people are real pros. This would be very low key and matter of fact. I don’t know why they won’t just tell me. It’s not like we’re not equipped to deal with bad news. They have no idea that we are professionals.

Anyway, it was one of those surreal moments. Tracey kept persistently questioning to find out how bad this sinus arrhythmia really was. To me it sounded like I was blowing my nose out of key. But apparently it’s nothing to be concerned about.

My blood was apparently normal. The enzymes would have shown up by now if I had a heart attack. I had no tachycardia, which is apparently the really bad news even though it sounds less scary than a sinus arrhythmia. My pain symptoms were more consistent with something muscular than heart related. It looked like maybe I was home free. She just had to check the chest x-ray before we could go.

There was only a few minute delay while we waited to find out about the huge mass in my chest. Then to my relief, the doctor came back and announced the x-ray was perfectly normal. We were free to go. We thanked them for their excellent service.

Elapsed time? About two hours. Pretty much the same as a movie. But somehow it seemed much more engaging than a regular movie. I was keen to start planning our next date. Though Tracey thinks it was all done just so I could write about it. Somehow when I was lying in pain at 3:00 this morning, I didn’t feel like writing.

When we got back to Children’s, the nurses were all interested to know how our movie was. We just smiled.

The good news is, they finally discharged Spencer from the hospital this morning. It’s a good thing. One more night in one of those little cots might have killed me.

Oh, and yet more good news. Vicki called back today wanting to know if we wanted to attempt date night again tonight. We said sure and invited her and John and the girls over for dinner, left them to wash the dishes and went off to see a movie. Strange movie. A mother grieving the loss of her nine year old boy. A little too reality based for my liking, but it got better when people started to get sucked into space by aliens.

Two dates in one weekend. My, life is good.

September 27, 2004

Clinical Trials

Today as we enjoy what seems like the umpteenth day of hospitalization, we were advised that Spencer would need a nasal gastric tube tomorrow if he wasn’t able to eat and drink in reasonable quantities to arrest the weight loss that started with his last round of chemo. But they were very fair about it. He was offered a little bit of Nabilon to stimulate his appetite.

He took it about a half hour before Uncle Johnny left. We had good fun playing in the hallway with the small solar power car kit that Spencer hotwired with batteries so he can run it indoors.

All was going well until the Nabilon kicked in. Spencer developed a profound interest in a wheelchair that was lying in the hallway. He sat in the chair and worked the brake levers back and forth. Back and forth. Back and forth. He was driving a tank. We said goodbye to Uncle Johnny as Spencer sat in his tank.

The imaginary tank was quite captivating for a period of time, but eventually he craved the motion. “You push my IV pole Dad. I’m going to drive this thing.” In the course of his struggles, he managed to run over one of his IV lines. Three others got tangled in his wheels. I had to put a stop to the whole exercise.

We went back to the room and decided to watch a DVD. His selection was Looney Tunes: Stranger Than Fiction. Usually he’s quite sophisticated in his tastes, but he began giggling uncontrollably watching Daffy Duck and the Tasmanian Devil. The munchies kicked in and he desperately wanted me to get him something to eat, but he couldn’t actually tell me what he wanted as he was giggling so hard. In the end, he sent me for cookies.

I know as a parent, I should find such behavior mildly disturbing. In truth, I found it all rather funny. It would be enough to make me question whether I am a good parent or not, except last weekend I undertook actions on behalf of my child that leave me assured that I am a good Dad.

You see, last time I mentioned Nabilon, a kind soul managed to source for us a large box of what can best be described as Nabilon cookies. They were represented as a better alternative to the capsules as they are more effective at stimulating appetite and reducing nausea while being easier to regulate dosage.

I am not sure which pharmacy dispensed them, but evidently the instruction label was lost in shipment. About a half cookie was purported to be the right dose for a seventy year old woman roughly twice Spencer’s size. I took them home and put them in the freezer as instructed.

I gave them no further thought until Friday night. I put Foster to bed and was quietly watching TV when my thoughts turned to Spencer. There he was lying in a hospital hardly eating much of anything and wasting away. And sitting in my freezer was something that might be able to help him.

But I had a major problem. Without the instructions from the pharmacy, how would I know what dose to give him? I could not subject my child to this kind of risk.

I did what any good parent would. I undertook a phase 1 clinical trial right in the comfort of my own living room. First, I started with the study design. Normally in a phase 1 trial, we want to slowly increase the dose and observe toxicity. Now it wasn’t like we had a clinic full of test subjects. After all there was only me. Well, and Scupper of course.

But if I killed the dog, they would kill me, so I had to limit eligibility for the trial to a single subject. So I figured it this way. I’m maybe three times Spencer’s size. If somebody twice Spencer’s size took a half cookie, then the correct dose ought to be about three quarters of a cookie for me which would scale down to a quarter of a cookie for Spencer.

In the interest of accelerating the trial and maximizing the benefit, I set my dose at two cookies.

The clinical summary? Oh wow, man. To say I’ve never experienced anything quite like it would of course be a lie.

I’ve never experienced anything quite like it. At first I was quite functional. I did a bit of email. It started to seem a little strange after a while. I decided to call my sister to work out a problem with logistics for taking dog and Foster on the ferry to visit with Auntie V. She reduced an intractable complicated challenge to a simple solution in no time. Pure magic. I decided to watch a little TV. I have no idea what I watched or how long I watched it, but it was really good.

After 10 minutes or two hours, I’m not entirely sure, I started to get very very hungry. Tracey was probably wondering what happened to all those cookies she baked. They’re gone. All I can say is thank goodness I didn’t get my cookies confused or there would have been a nasty spiral that would have eliminated the entire contents of the refrigerator.

Eventually, I got very very tired and went to bed. When I woke up in the morning, I would like to say that I was alert and refreshed. This would be another lie. There appears to be a big a difference between inhaling and ingesting. This of course based on what they tell me; I don’t have any first hand experience. When you ingest, it seems to stick with you for a long time. I did manage to get the coffee made eventually. Breakfast was superb. I had several bowls of Cinnamon Toast Crunch with Foster.

Obviously, the clinical trial was an outright failure. In my ambition to achieve quick results, I ramped through dose escalation much too quickly and executed with a poorly designed protocol. Now I’m going to have to start the whole trial all over again.

We do what we have to do for the well being of our children. If it turns out that there are no cookies left for Spencer, so be it. I can’t expose him to unnecessary risk.

Oh, and I did not inhale. Unless you count the litre of skim milk. It goes very well with cookies.

September 24, 2004

Spencer ran out of platelets this morning. The circulatory system is essentially a leaky radiator full of Bar's Stop Leak. The platelets are the Stop Leak. Clearly a strange way to design the system, but it's not like it can be retrofitted with something better.

Now usually the way we figure out that he is low on platelets is through a blood test where they hunt these little guys down with a microscope. There is one other way to figure it out and that's what happened today. He sprang a leak inside his nose.

Unfortunately, they don't yet have a drivethru window for transfusions, but Tracey did the next best thing. She called and placed her order in advance. The platelets were ready by the time she and Spencer arrived. By the time I got there after dropping Foster off, half of the bag was already in.

The way these things work of course, is that they entice you in with the deal on the platelets, and then once they have your kid up on the hoist, they start telling you about all the other service requirements. It's all fairly dodgy. You have no idea whether you really need the stuff or not. "Oh, the magnesium and potassium are low, we'll just top those off for you." How can you say no? They tell if you don't do these things the timing belt might fall off and then you're looking at a major service bill.

So anyway, I hung out at the shop for a while until the leak was stopped and then left them there to look after the other service items. Can you believe it? Six hours to re and re the electrolytes!

No sooner am I back at the office, when I get a call from Tracey. They were mucking about with a temperature probe and discovered a bit of thermal runaway. Tracey had a little chat with the service manager. Now they're going to keep him there for a major service. In the shop till probably next Wednesday and they don't even offer a loaner kid.

So off I go to pack the bags, let Foster out to pee, and pick Scupper up from daycare...

Steve

Wednesday, September 22, 2004

Extracurricular Activities

I was having a chat with a friend today. She was asking about Spencer and how he was getting on with his latest round of chemo. I shared the latest news and somehow digressed into the complicated logistics of managing relatively simply family affairs when half of us live in a hospital on any day. It’s tough to get lunches made, the dishes washed, the dog fed, Foster off to school, have an eight o’clock conference call and still be in the office by nine. And laundry? Sheer magic. I declared that I had no idea how single parents even manage.

She relayed the story of her neighbour who’s essentially a single mom and the summary conclusion was that their kids simply do less. You can’t do all the dance classes, gymnastics, soccer and other enriching activities when the demands of career and household simply don’t leave enough hours in a day.

And then I got to thinking about it.

That’s what we want for our kids, isn’t it? We want them to have an enriched life and be able to participate in activities where they will be stimulated, create new friendships, learn stuff, and burn off excess energy all the while becoming better little humans.

I must say we are relative dabblers in the whole thing. Sure the boys play soccer and have participated in a little T-ball, but we’re relatively uncommitted on the grand scale of enriching activities for the boys. We think we are doing well showing up for a soccer game at nine o’clock on a drizzly Saturday, only to see other kids on the team who were up at five to play hockey the same morning. Still others leave the soccer field to head for the lacrosse box. We haven’t even tapped into cub scouts.

And it’s not as though we’re simply lazy. We are that of course, but some of it was strategic. I did my research when the boys were young. I talked to fathers of older kids. There were some things that seem appealing until you dig a little deeper.

Hockey for example. Great game, but every year you need to buy your kid hundreds of dollars worth of equipment and then get out of bed at ungodly hours to get them to a rink. No thank you. I never mentioned hockey as an option to the boys.

Swimming seemed like a good idea. How much can trunks and goggles cost? But that one comes with swim meets. Be prepared to travel great distances and give up entire weekends to watch your kid jump in the pool for two minute intervals over the course of two days. No thanks.

We are happy muddling along and we’ll let the boys do what they want to do without pushing them in one direction or another and resisting too strongly if they’re inspired by something even if it is expensive and time consuming.

And then I got to thinking about it.

You know of all the engaging things your children can get involved in, chemotherapy has to rank right up there near the top. For starters, you can’t wander into it half hearted. It really has a way of capturing the attention of child and parent alike. It demands a level of commitment that none of the other sports seem to. Hell, I don’t just get up to go to the rink at five. I sleep there.

And if I stop to think about what has more life enriching potential, a year in karate or a successful course of chemotherapy? No comparison.

In terms of physical challenge, chemo is pretty demanding. A week of cisplatin will wear out Spencer like a soccer tournament never could. A character builder? Nothing can touch it. You have no idea how strong and smart your kids are until you give them the opportunity to show their stuff.

Against the other community-based organizations, there is an infrastructure in the chemo world that is pretty much unmatched in the amateur groups. Take funding for starters. Spencer plays on an extraordinarily fortunate soccer team. One of the dads is having his company sponsor the team for a couple of thousand dollars and the boys will all get track suits and sports bags. Impressive! But, in the chemo world, we’ve probably burned through in excess of a million dollars of other people’s money. And that’s just for our kid. No tracksuit, but he looks cool with a bald head. Try a bottle drive to raise a million dollars for a the gymnastics club!

And the boys have great soccer coaches. These guys give so much and so freely of their time. It’s wonderful. But in the chemo world, the whole coaching staff is professional. They’re highly skilled, absolutely dedicated, and they have hearts four sizes larger than normal. You can’t ask for more for your kids.

And it’s the kind of activity that scales nicely to your skill level and degree of commitment. There’s outpatient chemo for the casual family or those committed to more than one activity. For the more serious, there is inpatient chemo. The true enthusiast can carry it all the way through to bone marrow transplant. Whatever works for the individual.

Spencer has participated at all levels. We’ve certainly benefited greatly as a family by being involved and have maintained our commitment over the years. But it’s not necessarily the right thing for everybody. I can certainly understand why some parents would rather enroll their kids in piano or dance lessons.

Wednesday, September 15, 2004

Model 574

We went with the Model 574. It’s never an easy decision of course. We looked at all the different models that the dealer carried. There are a lot of tradeoffs to consider. Performance of course was the main driver. We were looking for that extra capacity. That’s why we decided to trade in the old one in the first place.

But you can’t completely ignore esthetics. You don’t want some clunker that’s an embarrassment that the guys are going to give you a hard time about. But there’s a price to pay if you want to be able to pee with the big dogs.

Maintenance isn’t something to be discounted either. It’s all too easy to get excited about what the new one can do for you and overlook what it takes to look after it.

So much to consider. We’re not exactly experts, but it’s not like we’re first time buyers either. But we thought we had made our choice.

Then the installer came by to kind of measure things up and said, “Oh, you’re gonna go with the 574 are you?” As though we really hadn’t thought it through and had rushed into a bad choice.

Back to the dealer we went. In the end they were firm. They were absolutely convinced that the model 574 was the best one for us considering our performance needs, ease of installation, maintenance etc. etc.

In the end, the choice was easy. The dealer has sold a lot of units to a lot of customers over the years and they know what they’re doing. They’ve never let us down. So if they say the 574 is the one, we feel comfortable with that.

It was supposed to be installed this morning. Tracey wanted me to be there. I got the call at 8 o’clock: “They’re going to put it in at 9:30”. I drove over straight away. By the time I got there, things had backed up in the shop. It would be at 10:00. Ten came and went and I decided to head back to the office. Tracey called around noon saying they would have a spot for us at 4:00.

Well it wasn’t until nearly 7:00 until they got started on the job, but once they got rolling, it only took an hour until the handiwork was complete. .

I must say they did a nice job. The unit looks good and they even passed along the warranty card in case there is ever a product recall:

Hickman ®
Vascular Access Catheter
Patient Name: Dolling Spencer
Product Code: 0600574
Lot Number: 43GNP008
Implant Date: 15 Sept 04
Implanting Physician: Blair

I thanked the nurse for the card and promised her that I would put it in a safe place next to the manual for the VCR.

I sure hope the Hickman people don’t run into the same safety issues that those Hasbro folks have. They just recalled Spencer’s 7 foot tall Super Soaker Monster Rocket. Mind you they are offering a full credit towards an equivalent value toy. I suppose if Spencer gets the same deal on the 574, he won’t complain. Probably good for a few thousand dollars worth of toys.

Anyway, Spencer is doing fine. He is a bit drugged up with everything he is taking. As he was resting in the recovery room, I counted the bags hanging from his IV pump pole. There were nine plus a syringe hanging in a fancy electronic doodad. I don’t suppose there will be any soccer this weekend. Maybe tomorrow he’ll smile. At least he’s not barfing. That’s very encouraging.

Tuesday, September 14, 2004

Hey Man, Pass the Nabilon

First of all, let me explain: I never inhaled. I think that worked for Ross Rebagliati and Bill Clinton, so I'll stick to it.

Yesterday I mentioned that Spencer was going to take a drug called Nabilon which is essentially marijuana in tablet form. I would like to correct that. It's not essentially marijuana in tablet form; it is marijuana in tablet form. There is no need to go to the Da Kine Cafe. You can just visit your local pharmacy.

Now I always thought it had a fairly mellowing effect, but for Spencer there were periods of high energy with much singing and dancing. All accompanied by laughter, many silly comments, and wedgies for Foster. Followed of course by munchies. Very serious munchies.

And the glazed-over sleepy looking eyes? I always thought that was the smoke. Not so. It's the active ingredient.

He refused to take his Nabilon this morning before going to school. He thought it made him too silly. But he didn't turn down the opportunity to take one on his way to clinic. It made for a very interesting clinic visit.

Anyway, Nabilon is one of a few drugs he'll be taking over the next few days. It's the only one out of his pharmaceutical inventory that looks interesting from a recreational perspective. Not that I would ever consider that. And I certainly would never inhale...


Steve

Monday, September 13, 2004

We had a busy weekend. Spencer did a couple of birthday parties. Foster did one. Tracey and I went to a Mexican party. Tracey discovered tequila shots. You're never too old to discover tequila shots.

Both boys had their first soccer game of the year. Spencer played the full game. The coach subbed him off regularly in the first half. By the second half he was waving the coach off to sub somebody else out instead while he did double shifts. I guess his hemoglobin is where it should be. I think they won the game something like six or seven to nothing. Today he went to school.

So when things are going well, that must mean its time to pick on him again. Tracey and I met with his oncologist today. Tomorrow he gets admitted to the hospital. He is going to get cisplatinum and VP-16. These are two of his favourites. Last time he had them, he lost ten pounds and about 40%of his high frequency hearing. The good news now is that he doesn't have as much hearing to lose and ten pounds doesn't mean 20% of his body weight any more. He's really in great shape. Check with us again on Thursday.

The plan is to do this for two consecutive rounds and then follow it up with a full set of scans in late October followed by transplant sometime in early November. It's hard to say what the timing will be exactly.

All of this will require an upgrade to his plumbing. I just spoke with the surgeon's office. They had a cancellation on Wednesday so he will have surgery late Wednesday afternoon to put in a double CVC as a replacement for his single VAD. That means he gets a couple of tubes to hanging out of his chest again and we are back in the business of dressing changes and heparin
injections. No more swimming and he probably will be a little reluctant to take a soccer ball in the chest.

Anyway, the chemo will run till Friday afternoon. His doctor is in no hurry to kick him out until Monday, but we'll see how it goes. He might escape for a few hours on Sunday for soccer photos.

The prime objective is to avoid the barf fest. Tonight we picked up a prescription of Nabilon. This is essentially marijuana in tablet form. So he gets some tonight and some tomorrow. He will be at school for the
first hour. It should be interesting as he sits at his desk going "Oh wow man..." as he munches on Doritos. They gave him 10 pills and he'll only use two. I guess the rest are for me.

We'll let you know how it goes.

Steve

Tuesday, September 7, 2004

Imponderable Questions

The boys started school today. OK so it was only a half hour. Foster has moved on to Grade 1; Spencer is in Grade 4. They reported to their old classrooms and their presence was duly noted. Tomorrow is the real deal. New teachers. A full day with a bag lunch. Tracey won't know what to do with herself.

We were camping on the weekend. There were friends there who had the new Gameboys with the flip up screen. I don't remember having a Gameboy when I went camping as a kid. I think we had maybe sticks. And if we were lucky, some string. Spencer decided he had to have one. I was thinking maybe Christmas. Spencer was thinking maybe today.

We did the math last night. The boys had rolled up all the loose change in the house. They got to keep 25% between them. It was a good math lesson. Spencer can now figure out what 12.5% of anything is. With the contents of his wallet and the rolling fee, he figured he had enough money. I figured he was maybe $30 short. He wanted his 12.5% in bills right away. I told him no problem, he just has to take all the coin rolls to the bank. He convinced Tracey to drive him. Can he buy the Gameboy now?

He would gladly mortgage his brother for immediate gratification. As far as he can tell, money has no intrinsic value. It's only good if it flows through his hands as though pressurized. I told him he would have to wait until he saved enough. I could hold out for months.

I didn't count on Spencer. He went to his favourite wheeler dealer, Pokemon card selling, used CD, video swap and shop store across from the bank. He traded in his perfectly good Gameboy for an ultra cool one with a backlit flip screen and didn't have to con another dollar out of his mom or pawn his brother. He seems to have no problem living life in the moment.

Now Foster lives at the other extreme. He has hundreds of dollars saved up. He could have wandered into the same store and bought 3 new Gameboys. But he won't part with a dollar. He has ambitions to be wealthy. We ride
by expensive homes and says he is going to buy one some day. For some reason I don't doubt it for a minute. We'll have to a different math lesson with him. Interest calculations.

One boy lives for the moment. The other one has a long term plan. Why is that? I don't want to know, but have no inclination to correct either one.

As we were getting ready for bed tonight, Foster was thinking about school and the long term plan. "When I'm in Grade 6, will Spencer be in Grade 10?"

Wouldn't that be nice. "No Foster, he'll be in Grade 9"

"So will we be able to walk home from school together?"

"Won't you be in different schools?"

"No we'll both be in middle school."

"Then you can walk home together." Wouldn't that be nice Foster. I sure hope so.

Steve

Wednesday, September 1, 2004

An Update From Scupper

The big one kept me locked out of the room all night. I'm trying to interface my dog dish on the wireless network, but I can't seem to get it to communicate properly. So I can only write when he is snoozing on the couch watching the Olympics.

Anyway, things are shockingly normal around here. Spencer is home all the time and playing with his friends and doing kid stuff. Recently I've been teaching them synchronized diving. We all line up on the edge of the boat and Spencer says "ready Scupper?" at which point I jump overboard. Then Spencer counts "1,2,3, go" and he and Foster jump in behind me. The boys just need to work on jumping in a little sooner and not waste all that time counting. When they get better at it, I must say I like our medal chances. The big guy just seems to laugh and take pictures through all of this. He's not much of a coach.

That Foster kid is really growing up fast. He's six now and about to start first grade. He's amazingly tough. He has legs like a tree trunk and is strong from all the beatings that Spencer and his friends give him. He always seems to be laughing and smiling and there is not much in this world that bothers him. He just needs to follow my instructions a little more closely.

The Spencer kid is pretty amazing. He is a sweet boy full of energy and smart like a whip. I think he has missed about half of his formal education, but he is still near the top of his class even though all his instruction is in French and we only speak Dog and English here at home. He starts grade four in a couple of weeks. Even though he doesn't have any hair, the other kids all like him and he has really good friends. His buddy Jared even goes to clinic with him sometimes while he has chemo, just because he likes hanging out with Spencer. I go to clinic sometimes too, but I have to stay out on the patio because they won't let me go inside.

Tracey is pretty amazing. She understands me like none of the others. She is actually the boss of everything and makes the whole family run. Don't tell Steve. She has enough love for everybody and a firm hand to keep us all going in the right direction. Without her, all the other ones would be in big trouble. She even does all the medical stuff and tells all of Spencer's doctors what to do.

I worry about Spencer. He is a normal kid and everything. In fact I don't think anybody ever told him that when you are sick, you're different from everybody else, so he never figured it out and just carries on being a kid. But he still has that cancer thing happening. He's had topo/cyclo all summer long. Spencer calls this "easy chemo" It's making his tumor bits shrink and that is good, but the big ones are mumbling about kicking everything up a notch. They're just waiting for Spencer to start in the first week of school and meet his new teacher and establish a place to be and then I think they are going to start hitting him hard with bigger treatments. I think they want this cancer thing to go away. I hope everything works out OK.

As for the big guy, he's a pain in the arse. He still does his "dominant alpha male" thing and tries to tell me what to do. He thinks he is smarter and stronger than me. I humor him, but practice passive aggression. Usually I just find something good to chew on and drive him a little crazy. I have fun at bedtime. They try to shut me in the family room. But as soon as I hear them getting ready to go to bed I run into the living room and hide under the coffee table and pretend I don't understand what they want. This drives the big guy nuts. It's going to take a while, but sooner or later I will wear him down and I'll be allowed to sleep upstairs with my boys as it should be.

Anyway, I keep working on the training. Eventually I'll have them all whipped into shape and everything here will be exactly as I want it. I just need to be patient and persistent.

Woof!

Scupper

Wednesday, September 1, 2004

Fine Breeding

The papers came last week.

I found them a bit alarming. Not that I didn't know there were papers. I guess I just expected that if they were going to come, we would have seen them a long time ago.

The timing was suspicious.

I think maybe he just grew tired of the harassment. Doesn't like it when I put on a thick Scottish accent and call him "Donkey." So he must have emailed the Canadian Kennel Club and asked them to send a little paperwork to remind me to treat him with a bit of respect.

His father is none other than Rough Seas Ready Helm's Alee (USA). His mother is Tanaki's Madeira Helm's Alee. He has a registration number and a litter number and tattoo markings and a microchip. And so it's proven that he is not a Donkey. Not an Alpaca either. It says so right on the paper. He is a full blown purebred Portuguese Water Dog.

He demands respect. He has history and heritage and we can trace his ancestors back through the generations. He can be proud of who he is.

He has much better breeding than I do.

But it still begs the question...

If he is such a fine specimen, with documented outstanding characteristics, good parents, and duly registered, why is it that he ate my coffee table and once wiped his butt on a clean white carpet when we were guests at a party?

Breeding isn't everything.

Steve

Registered Owner of An Alpaca Donkey Named Scupper

Tuesday, August 10, 2004 11:33 PM CDT

Living Soundly in Desolation

Yes it was really living.

There was no Scupper. He wasn't allowed on the charter boat. No shortage of volunteers to look after him at home, even with full disclosure.

There were eagles and otters and giant red jellyfish. There were dolphins and seals and fresh prawns for dinner.

There was the barbeque that tried to commit suicide in the middle of Waddington channel. And a cougar sighting ashore that left us a little reluctant to let our children wander the beach looking like small prey animals.

There was water so warm that we would have to go to Mexico to find anything like it on this coast. And swimming every day. And some nights too. With glowsticks attached to the boys' swim trunks. And no compressor to shoot them in the air.

And hikes to beautiful freshwater lakes through carpets of thick green moss that made you want to lie down and have a nap. With very few bugs.

And waterfalls pouring down breathtaking mountains that tastes like no other after a long hike up.

And there was the harmless looking little channel that connects Squirrel Cove to a big lagoon which on a rising tide sucked us in our dingy and our friends in theirs into a lagoon only to work our way back along a barnacle encrusted shore with only 3 pairs of shoes between seven of us. Thank god for warm water, a beautiful sunset and two hundred feet of rope.

And later popcorn on the foredeck, with ice cold beer, under unbelievable starry skies and kids asleep in their bunks as we watch and cheer the stragglers who declined our rescue offer emerge from the lagoon at slack tide while meteors fell.

And a long sandy beach with shells and driftwood. My new coffee table in kit form, waiting to be assembled with no instructions other than the memories.

Chocolate with friends. Milk and dark and dark with almonds. And ice cream from a miraculous invention that I've never experienced on a boat. A freezer.

And fishing in a small dingy with the threat of rain and two hundred fifty pound halibut. Neither of which materialized. But there were Cheetos and beer and friendship.

I think perhaps Cook was having an off-day when he named it Desolation Sound.

Yes it was living.

And when we came home, a dog so happy, I thought he might vibrate out of his woolly alpaca coat.

And boys who were so happy to see their dog, that just this once, he was allowed to sleep upstairs.

Steve,
Father to Spencer and Foster and First Mate to My Skipper, Tracey

Molson Indy Vancouver

Well now was Friday ever a fun day. It was of course exclusively focused on Spencer. Proctor and Gamble / Wal-Mart hosted us as participants in their Victory Lap program at the Molson Indy. They give a bunch of money to the Children's Miracle Network and host two families at each of the races in Canada. If you ever go, I would highly recommend going as a VIP. We sat in a shaded lounge area right above Paul Tracy's pit on the main straightaway. At the back of the lounge we could see all the action on turns 1, 2, and 3. Endless food and beverage. We met driver Patrick Carpentier with autographs all around (including signed Team Spencer shirts). Molson Indy bags for the boys with shirts and hats and Spencer's happened to include a 3.2 megapixel camera courtesy of Kodak. Then we wandered into the paddock and checked out Forsythe racing including going upstairs in the trailer to see the spare car and check out where Patrick rests etc. It was cool, I mean, I think Spencer enjoyed it and the rest of us, you know kind of suffered through. Between the 2 digital cameras, there are easily a couple of hundred photos, so I just put on the website the one that really captures Spencer’s enjoyment of the day. It’s tough making these sacrifices, but we do it for the benefit of our children.

Steve

Monday, July 20, 2004

Today was bone scan day. I always find it to be a terrifically frightening experience, so I don't really look at the operators console. But Tracey did. And she talked to the technicians (whom she plied with muffins) while Spencer and I were out of the room. Very brave. We'll see what the official word is whenever they have an official word.

As for last week's CT scan, we did get official word which was as follows: "The CT scan was better! His left kidney is now completely normal and there is some improvement in some of the bone lesions. The original mass on the right looks the same. I do not have the written report yet but we went over the scan carefully in XR rounds. So I think that is good news and we will continue with the cyclo /topo for now"

Which is very encouraging. We were pretty sure the chemo was working, and I think most of the coastal villagers subject to his pillaging over the weekend would likely agree. We do know though, that the chemo is not going to work forever and give him a cure. It will slowly have an increasing impact on his bone marrow and they will have to go with lower doses/longer intervals between rounds. At some point the cancer will decide to have a party again.

Which brings us to the subject of the discussion we had last week. Later on in the fall, Spencer will likely have another aggressive treatment. The one currently favoured by his oncology team is what is called an allogenic transplant. Basically what this means is that they will hit Spencer hard with a large dose of chemotherapy of one kind or another and perhaps total body radiation. This will completely wipe out his bone marrow. He will then be rescued with Foster's bone marrow. Along the way, he will develop some measure of "graft vs. host" disease which sounds nasty and dangerous, which of course it is, but it is hoped that the new bone marrow will also go after the cancer. So there will be some kind of huge fight going on inside Spencer with no guaranteed winner, though we know who we will be cheering for.

It's all rather experimental and far from proven. The good news is that there is a boy in Japan who did the same thing and is alive and well and cancer free. So that's what we are down to.

A boy in Japan.

This is not the only option for treatment and the oncology team will support us if we want to do something different. I can't say the other options are any more promising, and mostly they would happen far from home. Tough decisions. I had hoped four days of sailing would give us clear answers on what to do. I think the only conclusion we reached is that we would like to attack Ladysmith again, next time with higher pressure.

Steve

There were a couple of things I forgot to mention.

1) Spencer did start his chemo today. I will go pick him them up in about an hour.

2) Scupper has learned to pee in the scuppers. This is an important thing for an ocean-going dog to be able to do. Much as I would like him to just lift a leg and pee over the side, there is a certain danger in doing so. The scuppers are the next best thing. (Did you know most of the bodies they find floating in the ocean have their flies open? - sorry doesn't really apply to dogs.) In fact, we even lost Scupper overboard last week. He was just hanging out on the edge of the cockpit and lost his footing and the next thing you know we had a rather serious dog overboard situation in the middle of Queen Charlotte Channel. Now he is a little more cautious when heading for the foredeck. So he is scupper trained and can comfortably enjoy 6 hour passages.

3) We have no intention of teaching Foster to pee on Scupper. He can continue to use the head down below.

I think that pretty much flushes all the topics I have for now...

Steve


Ooops. Me spoke too soon. Spencer did start his chemo, but I didn’t pick them up. He spiked a fever, so I left them at Childrens. Hopefully nothing serious. Boys will be boys...

Preparing for the Inevitable

Somehow I thought if I was strong and confident, we could keep things in control. Little by little it starts to slip away. It doesn't take a genius. I can see it coming. You hear about it. You believe it won't happen to you. Then you are just down to hope. After a while, your hope is not enough so you try to believe in miracles.

But I can see now that this one is not going to go my way.

We started out with the best of intentions. We were going to contain it. We were going to be different than the others.

It doesn't happen all at once of course. It's little bits here and there. Gradually the tide turns. And there's nothing you can do to stop it from
coming in short of reversing the moon.

Our dog was not going to be allowed outside the family room. He was going to make his life there on the washable cork floors and out in the backyard. No kitchen. No living room. No dining room. No bedroom. And definitely no drinking out of the toilet. And at night, he would sleep in his crate.

We put up one of those baby gates to keep him contained. Eventually we all just got tired of stepping over it every time we went to the kitchen or upstairs. Oh let the dog in the kitchen. But not at mealtimes! And definitely not in the living room on the carpet.

And then guess who starts hanging out in the kitchen during mealtimes?

Yes. Scupper. I growl at him and he goes away. So while we eat, he lays down on the living room carpet. This takes way too much energy.

And sleeping in the crate? How will he protect us if the burglars come back?

So we draw the line. All right he can go where he likes downstairs as long as he doesn't hang out at the dinner table and he doesn't go upstairs.

So every night when we're all upstairs reading stories, I can hear the dog creeping up the stairs. I storm out of the room and yell things at him. I don't even bother with English any more. Anything that sounds tribal, frightening, and dominant alpha-male like seems to do the job. He runs back downstairs.

But it's wearing off. Now he only goes a couple of steps down. And he sits and waits stubbornly until I wave my arms and tell him to go all the way down in my best Klingon dialect.

Tonight as I came out of Foster's room I saw him sitting there on the top step. As far as he is concerned if he hasn't taken that last step, he is still downstairs because he is not all the way up. It's like he went to
some damn canine law school.

And I know what he is doing. I know where this is going. It's only a matter of time.

It could happen any time. In fact, it could happen tonight. I'll probably find him curled up on my side of the bed. And when I start screaming at him in some Java dialect, he'll probably growl at me and Tracey will wake up. There will be a suggestion that for the peace of the
household, it might be better if I just slept downstairs.

And in the darkness of night, it will be a little cool. So I'll grab the dog blanket and pull it over me to take the chill off.

I'm prepared for the inevitable.

Tuesday, July 6, 2004 0:41 AM CDT

Well we’ve completed the upgrade on Spencer’s Go-Kart. I just sent an email to my friend who is a member of the Royal Canadian Mounted Police. It read as follows: “Will: We installed the dog ball fetch assist device on Spencer's electric wheel chair. It turns out that it is tremendous saving for Spencer's energy, what with his chemotherapy and all. It would normally take him about 5 throws to get it to go the 150 m distance. Now he can do it by pressing just one little button. Medical assist devices have advanced so much with modern technology.”

That’s my story anyway. Now Spencer has three new switches: “Compressor”, “Arm Weapons”, and “Fire.” It makes an awesome noise and shoots a tennis ball an unbelievable distance. Scupper just hears a “wumph!!!” and has no concept that his beloved tennis ball is just re-entering the atmosphere after a brief low-earth orbit. This is going to take a bit of training. We’ll have to work on lower pressure shots so that he can actually see the tennis ball and associate the cannon firing, pardon me the “fetch device activation”, with his tennis ball.

It also does a fair job with water balloons. It’s possible to load a half dozen small ones in the barrel and fire it across the street, over the neighbour’s house, and soak him in his back yard.

I think it’s possible to have more fun, but I would probably have to do something illegal. Oh never mind.

Oh yeah and there is that whole medical thing. Spencer finished his second round of topless cyclone on Friday. We’re just hanging out waiting for his counts to drop. He’s in great shape and went for an hour and half hike today to swim under a waterfall. He certainly has no disease symptoms and tolerates the chemo well. I hope it’s doing some good. We’ll talk to the oncologist this week about more aggressive therapy and do another set of scans in few weeks to see where his disease is at.

In the meantime, play hard.

Steve

Friday, July 2, 2004

We live in Poco, a civilized city where they celebrate Canada Day with a fireworks display. It all happened at Castle Park just down the road.

We made a few scouting missions over the course of the day. The RCMP maintain quite a presence to make sure that law and order are maintained. I must say when they see an electric go kart with a big Canadian flag, they obviously struggle with what is being violated: law or order. As long as Spencer kept driving, at low speed and without knocking down pedestrians, they seemed happy to be left pondering rather than actually having to deal with it. I'm quite sure there would be at least a half a day of queries and paperwork to actually arrest a 9 year old boy for driving an unregistered vehicle on the sidewalk without a driver's license. For my part, I will maintain that it is not a motor vehicle, but an electric wheelchair. In any case, we managed to get through the day without even being questioned. No tickets or arrests.

The big event was, well, exactly what you would expect from a suburban fireworks display. Definitely better than you could achieve in your backyard, but not exactly the Symphony of Fire. When the boys arrived home, they had obviously not reached their saturation point for seeing glowing lights fly through the air.

Tracey bought them the little 18" glowing tubes of chemical soup. They now come packaged in an aluminum tube so they aren't accidentally activated in shipping and handling. It started as a Harry Potterish thing. Stuff the glow stick into the tube, brandish it a large arc while reciting "Winguardian Leviosa", and light emerges from the wand. Do it a little quicker, and it shoots out of the wand across the back yard. It was fun, but somewhat uncontrolled. They tended to land on the roof, fly over the fence, or knock over my drink. A better solution had to be found.

Luckily, I just happened to have a 50 ft air hose for the compressor that reaches nicely out to the patio. When mated to the aluminum tube, it makes an excellent glow stick cannon. We were able to easily achieve 60 ft altitude. Bright streaks of vertical fluorescent fire would shoot into the air and then come tumbling back to earth. It was at least four times as much fun as the fireworks display at the park.

After several shots we noticed quite an interesting phenomena. The glow sticks would shoot up and then come back down, then, strangely, they started traveling in rapid bouncing horizontal motion about two feet off the ground. It was most unusual. Anyway, if you want to try this at home, you will need:

- glow sticks and tubes
- an air compressor
- a rubber tipped blow nozzle
- a Portuguese Water Dog (black is best)

If you don't have an air compressor at home, you are welcome to run a hose from my house. You can also borrow the dog any time you like.

Steve

Monday, June 21, 2004 8:48 PM CDT

Every half dozen years or so the planets align and Foster’s birthday falls on Father’s Day. At least I think it happens every half dozen years or so. This is the first time it has ever happened. Spencer occasionally has his birthday on Mother’s Day. Or at least he did once.

It was one of those thoroughly exhausting weekends. We were out Friday night. Saturday was a big T-Ball tournament followed by a bowling birthday party then off on the boat to Bowen Island. It was all go go go.

The rare moment of peace for me came this morning. I was up before everyone else. Everyone except Scupper. Scupper had to pee. So we went for a walk up to the coffee shop. I got a large cup of coffee to go. I think Scupper snuck in a few espresso shots. We went back to a large grassy area overlooking the cove in what I think might actually be the most beautiful spot in the world. I sat and enjoyed my coffee. Scupper played fetch with his tennis ball... relentlessly.

A beautiful young shepherdy looking dog came and chased Scupper. She couldn’t keep up with him. Her owner showed up shortly afterwards. He kept calling for her: “Come on Heidi, let’s go get a coffee.” I think all the men on Bowen Island like to hang with their dogs and drink coffee first thing in the morning. Heidi wouldn’t come. She wanted to run with Scupper. I suggested that I would be there for a little while and if he wanted to go up and get a coffee, Heidi could hang with Scupper. He left a little bit reluctantly and went to get his coffee.

Well about three throws later, Scupper had reached his thermal limit, and disappeared over the rise and down to the beach. Heidi followed. They both came back several minutes later, absolutely soaking wet with sea water. Heidi’s owner came back. “Sorry, I forgot to mention, Scupper is a rascal and a scoundrel. He took her for a swim.”

“That’s OK. I wanted her to learn how to swim anyway” he offered graciously.

The rest of the crew eventually woke up and we all went out for breakfast before my sisters and their families, and my dad and Tracey’s parents, brother and family all arrived on the ferry. We had a wonderful day picnicking in the shade, and hanging at the beach. I think Scupper retrieved the tennis ball about four hundred times before there were no fresh arms left. Spencer caught two fish off the dock. Foster saw a dead otter floating on its back. That was the highlight for him. Nothing like wildlife that doesn’t try to run away from you. Gives you a chance for a good look.

Eventually we saw everyone off on the ferry and loaded up the boat for the return trip home. Scupper is a water dog and the obligations of his genes weigh heavily on him. He feels utterly compelled to patrol the boat and check on the well being of the crew. He was on a continuous cycle - cabin to cockpit to foredeck to cockpit to cabin to cockpit to foredeck... He was driving everybody nuts. Finally I tied a line to his collar and cleated him off in the cockpit. He stopped moving and dropped down with his head in Spencer’s lap. And so we sailed home as the sun was setting.

In the car on the way back the boys were fooling around. Somehow, and I’ll never know exactly how, Foster ended up with a mouthful of Spencer’s hair. It was all quite amusing for a few miles until he started coughing uncontrollably and puked up a hairball. I had to roll down the windows so we wouldn’t be overcome with the smell.

That was our signal. Out came the clippers when we got home. Spencer and Foster are both near bald on the number one setting. I opted for the shiny look of total baldness. Spencer will catch up to me soon enough. So all the boys are bald of their own choosing.

As I tucked them into bed, we talked. We all feel that if Scupper could talk, he would tell us that he wants to be bald on the top of his head too. We’ll get to him tomorrow.

When I kissed Foster goodnight, he was wearing his new road hockey gloves.

Today was a fine Father’s day.

Steve

Tuesday, June 15, 2004 3:45 AM CDT

The Gold Ring

I was once a substantial creature, a productive a member of society who went about his daily tasks and contributed to the overall well being of life on the shire. Now I was no Bilbo or Frodo, certainly not some heroic adventuresome hobbit, just a regular guy who hung out with his buddies doing a little fishing in the pond.

And then one day there was an unfortunate fishing accident and things went badly wrong. I won’t dwell on the details, let’s just say that there have been a few unspeakable things that happened and life on the shire hasn’t been the same ever since.

Actually they’re quite a bit different now. Technically speaking, I’m still a shire resident, though it seems as though it has been some time since I’ve enjoyed the warm comforts of my bed in the cottage. Which has really been hell on my back, so I’m walking a little crooked now. I don’t eat as well as I could, and old friends might say I’ve dropped a few pounds. I don’t seem to get out in the daylight much and I’m perhaps a little pale. Indeed, I may have lost a bit of hair. But it’s not really all that bad.

At least I have a purpose in life. Well OK, so perhaps “purpose” is a mild understatement, maybe you could even call me mildly compulsive. But it’s always good to develop new interests. I used to have other interests; I just can’t remember what they were.

It’s not like I’ve ceased to be productive. I still go into work. OK, so perhaps not as regularly as I should, but that doesn’t explain why they look at me strange when I go there. Hmmm. I’ll have to think about that.

But anyway, I’m looking for something. There are no guarantees that I’ll ever get it, but hey you have to try. No one likes a quitter! If I ever get my hands on it, it will be a bigger deal that winning the lottery. Heck, I’d even give up the old cottage forever just to hold it once again.

Anyway I’d love to have more time and fill in the whole story, but I must get on with things and see what can be done. Just enough time to have a quick bite of sushi, and then it’s back to the task at hand.

Precious, my precious. Where are you my precious?

Cheers From the Shadow to the Shire,

Smeagol

Tuesday, June 1

It’s been a little strange the last few days.

Saturday I went out to the bookstore to get some magazines. For some reason I couldn’t bring myself to crack the cover on a book my neighbour loaned me about an avalanche that killed a high school friend. I can get most of the way through magazine articles, and when I lose track I either start from the beginning or assume I’ve already read the whole article. It doesn’t seem to make much difference either way. The mind is a wonderful thing.

On the way home, it was raining. There is a little twisty bit in the road as it comes up over a rise. I saw a strange thing. It was a Honda Civic driving towards me at high speed, sideways. No wait. It was straight again. And then it was sideways the other way.. And then coming at high speed in reverse. Since it clearly wasn’t being controlled by the guy in the driver’s seat, I elected to pull over to the side and let it pass. Well mostly pass. It came sideways again and then I heard a dull thud as it passed the drivers door. About a hundred feet down the road, after a couple more spins, it came to rest.

I jumped out of the car. My intent was to kill the guy. By the time I got to his car, I decided to ask him if he was OK instead. He was. Somewhere along the way I lost the urge to kill. We exchanged information. The car seemed relatively undamaged. Just a little scuff in the freshly painted bumper that was recently redone after my car sorted out its ownership issues. By the time I got home it scarcely rated a mention. Usually things that threaten my life, or at least threaten to deploy my airbags, rate a mention.

Anyway, we carried on through the weekend. Spencer had a friend sleepover, there was roller hockey, swimming, bowling and Shrek2. It all wound up with a lovely roast beef dinner with friends over.

Then there was Monday. I do believe I mentioned most of Monday’s events. Last night, I wasn’t sleeping well and came downstairs for a snack. I found some of that lovely left over roast beef. It was rather strangely packaged it one of those clear plastic containers that tomatoes come in. Rather odd since we have one of the largest Tupperware collections west of the Rockies. I grabbed a few bits right out of the box. Tasted OK. But the texture was kind of weird. As though it had been dragged through mashed potatoes. A chocolate cookie and glass of milk cleansed the pallet nicely.

Today I took Spencer to clinic for chemo. I wanted Tracey to have a break, go for a run, and spend some time with Foster. Dr. Lucy was impressed. Then she asked me a bunch of questions. Dr. Lucy: “Did Spencer have a temperature last night?” Steve: “No idea”. Dr. Lucy: “Did he take any more morphine yesterday” Steve: “No idea” Dr. Lucy: “Did he have a dose of Ondansetron last night” Steve: “Ummm”. So she was impressed for only a brief period. Thankfully, Spencer was there to answer the questions.

I guess my primary function in clinic has been to play the games. I didn’t realize that Tracey was doing all the work.

I forgot to bring the wonderful lunch that Tracey packed. No problem, as soon as the chemo was finished and Spencer was on hydration we were free to go to the cafeteria. Spencer jumped on his IV pole and rolled down the hallway while I pushed. People smiled. The corners were a little tough, it tended to want to spin a little bit. There is a little twisty bit as it goes past the sterile processing department and we were travelling a bit fast... There was a guy coming the other way with a laundry cart who pulled over... There really wasn’t much damage. By the time I got home it didn’t rate a mention.

It was a quick dinner tonight. A rush to get Foster off to his T-Ball game. Beef dip. Mmmm. As Tracey was putting the milk away she pulled this strange package out of the fridge. It was that funny clear one with the roast beef in it. “If you’re wondering what this is, it’s food for the dog. Just the leftovers from people’s plates on Sunday.”

She could tell from the look on my face that it was too late... The boys thought it was hilarious.

I was tucking Spencer in to bed and Foster wandered in giggling hilariously. “Hey Dad. What’s that thing on your butt? Oh look it’s a tail! Do you want some more dog food?”

They’re still joking about it. I’m trying my best to pretend I’m angry with the teasing.

Steve

Monday, May 31

Hello all. We are here at the outpatient oncology clinic at Childrens.

Spencer had his bone marrow biopsy this morning and we received news on the scans. There has been some significant progression of the disease. He has several areas in his pelvis lighting up, a spot in his left kidney, and some other areas up in his neck.

Obviously not good news, but it is certainly not as bad as it could have been. Nobody has given up or suggested that it is time to do so.

The immediate plan is to get him back on chemotherapy. He will be starting that probably within the hour. The goal is to cool things down and get them back under control as quickly as possible. He'll be getting the topless cyclone again. This one isn't too evil in terms of the side affects and he can have it as an outpatient.

We expect he will receive a few rounds of this chemo and depending on how it goes, we will likely be pursuing a more aggressive treatment. We don't know exactly what that will be yet, but we'll sort it out over the next little while.

So it is never as bad as you think it might be, but never as good as you hope. Such is life.

Spencer is in good spirits. He didn't believe me when I told him his cancer was back and that Dr. Pritchard would be coming to talk to him about that and some more chemotherapy. He thought I was joking. Of course he was still kind of under the influence of ketamine at the time. When Dr. Pritchard did come, the reality set in. As soon as he found out it would be topetecan and cyclophosamide he was OK with that: "That's no big deal".

Anyway, we are logistically challenged. We are here at the hospital with one car. The chemo will flow and he'll need several hours of hydration afterwords. We have provisions for daycare to bring Foster home and lock him in the dog crate, but I think I would kind of like to be home with him.

Are there any volunteers to swing by the hospital and give Tracey and Spencer a ride back to Poco? Johnny, for example? It would probably be sometime between 6:00 and 8:00pm. We'll have a definitive time once things get started. I'll check back here later.

Thanks,

Steve

Sunday, May 30

I may have used a term in my last posting that I don't understand very well. But hey, that's OK, when we are where we are, I am allowed to screw up. I think some more clarification might be required.

I suggested on Monday that we might be discussing "end of life" planning for Spencer. I think I should be perfectly clear on what I meant by that because it probably has an entirely different meaning to somebody who's been farther down the road than we have.

Spencer is not a very sick boy who is trying desperately to cling to life in his final few days. We are not at the point where we are wrestling with what pain medications will make him most comfortable in his final days.

Last night he had a friend stay over. They've been running (and kind of limp hopping) around a playing hide and go seek. This morning they are playing soccer in the hallway and this afternoon we are going swimming at the local pool and then Spencer is going bowling at a friends birthday party. These are all things that he wants to do today, just like any other kid.

I do think that on Monday, we will find that there has very definitely been disease progression and that the Fenretinide is not working (or at least it's not working as hard as the Neuroblastoma is). I also think that the oncologists may begin to discuss, for the first time, that we should also be thinking about treatment options that are directed at Spencer's quality of life and that we will have a number of important decisions to make now and going down some road that may forever rule out any chance of getting to NED. To me that, is a discussion about planning for end of life.

Does that mean we are just giving up? No. But it does mean that we have our ears open and we are going to want to think things through very carefully. As soon as we have all the objective clinical data gathered together on the scans and biopsy etc., you can be bloody sure that Pat Reynolds is going to get an email with the facts asking what his thoughts would be on an aggressive treatment plan. Got your ears on Pat? We're dealing with a pretty strong kid who still has buckets of stem cells and his brother is a perfect allogenic match. .

So what does all this mean?

Well, there is the rational Steve that understands very well the monster we are dealing with from a factual and probabilistic perspective. There is the emotional Steve who remains forever hopeful and optimistic. They don't always coexist in a harmonized way within the envelope of my skull. Rational Steve would never buy a lottery ticket. Emotional Steve buys them all the time. But rational Steve never let's emotional Steve quit his job and run his credit cards to the limit in anticipation of the big win. So what it means is that perhaps rational Steve and emotional Steve are going to open up a dialogue for the first time.

My God. Who is this other Steve who looks inside and can seem them both and then writes about them?

So congratulations on opening this email and reading it all the way through to the end. It's going to take a little more bravery, because the posts aren't always going to be full of cheerful Scupper stories any more. But hopefully they keep coming and we'll here a word from rational Steve or emotional Steve or any of the other Steve's that might rattle around from time to time.

Steve & Steve

Saturday, May 29

I hate to do this over email, but it would be difficult to call everybody and still stay sane.

As you know Spencer has had a series of scans over the last few days and will have a bone marrow biopsy on Monday. It always takes several days before we get any results. We always try to resist the urge to practice amateur radiology by looking at the low resolution images over the tech's shoulder at the operator console. Nevertheless, we can't help ourselves and have refined our skills.

It appears as though Spencer's disease progression is significant and very rapid. The technicians are not allowed to really say anything about what they see, but Tracey plies them with homemade cookies and maintains a close enough relationship that we are able to figure out what is going on in the limited conversations you can have in the room with Spencer and no authority to really say anything. During yesterday's bone scan, Tracey left to go to the oncology clinic to ask the doctors to be prepared to discuss the results and the plan going forward. "They are aware of the situation and we will talk on Monday." Doctor Lucy also gave Tracey a prescription for morphine tablets in case we need them over the weekend. I don't regard this as a very promising sign. I expect in Monday's meeting will talk about how we deal with end of life planning for Spencer. I’m not sure about hopeful treatments.

Spencer has a pain in his hip and is having difficulty with stairs and is pretty stiff and sore. We haven’t said anything to him yet until we know more. But he is a smart kid and probably knows that things aren’t so good.

So we will let you know what we find out on Monday. Sorry for the depressing news, but we don’t want there to be any secrets.

Steve

Tuesday, May 18, 2004 1:07 AM CDT

Once or twice? Maybe.

Three times? That’s turning into a habit.

So we’ve followed the book. We’re amateurs after all. The professionals know better. We’re just smart enough to realize when we are in over our heads. Not much smarter than that.

The book doesn’t spell it out exactly. We had to improvise a little bit.

Our choice was 2 coke cans, an empty milk jug, 28” of dental floss, and a big chunk of left over chicken. Now they’re woven into a single entity idling on the countertop as a mass of potential energy waiting for the chance to be kinetic then acoustic.

I think the first time it was a chicken breast. I’m pretty sure there was a screaming hissy fit. The book recommends that. But it wasn’t enough to prevent time number 2: a full hamburger patty. Now I know there was a screaming hissy fit after that one. By the book. I did it myself. It was one of my better ones. I think my children even peed on the floor.

But we have to be sure. You can just leave it there untreated. You have to go after it aggressively. I’m not sure where I learned that, but it’s comfortable knowledge that serves me well. They say if you don’t beat it early on, there is no hope of it ever stopping.

Portuguese Water Dogs are renowned counter surfers. We hoped ours was better than the average. But why should we be any luckier than the others?

So when he goes for the chicken, all hell will come raining down on his head. He will give up counter surfing forever to avoid the wrath of the milk jug. Because if that doesn’t work, the book doesn’t identify any further protocol. I don’t what I would do if I found myself in that uncharted territory.

So we wait.

Actually we’ve been waiting several hours. He doesn’t seem to be going for the bait. Does that mean the last hissy fit cured him? Is the behaviour gone forever? Or is it just lingering in that little dog skull waiting to come back just when we’re beginning to trust him again? Oh I can’t bear the wait.

I’ll send him for a cat scan...

Tuesday, May 11, 2004 0:58 AM CDT

Today was scan day. It wasn’t supposed to be scan day. Regular scan days have enough anxiety for my liking. Unscheduled scan days are downright terrifying.

It all started last week. We had spent the weekend on the sailboat in shorts and t-shirts. I left town to go and visit an aluminum smelter in a place where they had two inches of fresh snow. . I had no idea that there were still areas of this country in the middle of winter. I didn’t bring a jacket. Anyway, the whole trip was based on the assumption that Spencer’s medical situation was stable and there would be no problem to pop out of town for a couple of days.

Assumptions are never really good things. When I left, Spencer had a sore neck. Probably pulled it playing road hockey, thought I. By the time I arrived in Montreal it was bad enough that he was home from school. By the next day, he was in at Children’s getting checked out. Probably just a pulled muscle they say, but let’s do a CT scan just to check if everything is all right. Assumptions are bad things.

So I arrived back home in time for a very relaxing weekend. No stress at all. We had a wonderful Mother’s day. The boys and I planted a 3 tiered basket with a random assortment of nursery plants and cooked a nice lunch for Tracey. We had dinner out followed by a nice walk in the woods. All very relaxing. No worries. Just a pain in the neck which seemed to be getting better.

So today he had the CT scan of the head and neck. They even promised us same day results. We never get same day results. This can’t be a good thing.

But it was. Everything was perfectly normal.

So we can live the good life for a few more weeks ‘till the next series of MIBG and bone scans. Those won’t be perfectly normal. But in the meantime, Spencer has a birthday. He’ll be nine.

Tracey had a brilliant idea for a party. She and Spencer decided on a workshop party. I loved the idea. Power tools mix well with 8 and 9 year olds. They delivered a dozen sandpaper invitations today.

I bought a dozen little bottles of glue with 8 oz hammers to go with them. Tonight Spencer and I started running a bunch of rough lumber through the planer and tablesaw. We are going to kit up the parts for all the kids to build their own toolboxes. A toolbox filled with a hammer, nails, glue, and bits of wood makes a nice goody bag for a nine year old. It will be a testosterone-rich event.

I thought I was clever, but I’m not. One of Tracey’s friends dropped by and said hello as we were exacerbating high frequency hearing loss and creating clouds of sawdust. When she found out what we were up to she broke into a smile. “Tracey’s brilliant”, said Leisa, “I could never figure out a way to have a birthday party and get Mike to do all the work!”

Cheers,

Steve

Sunday, April 25, 2004 0:46 AM CDT

It’s been a while since I’ve written. We returned from Mexico a week ago. The problem with vacations is that when you come back, reality is waiting for you.

I’ve been grieving.

Our team is out of the playoffs. They failed to put as many frozen turds in the other team’s net as they put in ours. So now it’s all over. There is scarcely any purpose in life. Not until next fall at least.

We had a fantastic time in Mexico. We didn’t tell the boys we were going until 5 o’clock on Easter morning when we woke them up to stuff them in a cab. We forgot to mention that we were 2 resorts down the beach from where Spencer’s best friend Jared and our good friends Jack and Donna were staying. They sort of discovered that the next day when we bumped into them as we walking down the road and their cab pulled over. We hung out together all week.

The beach was good. The boys spent 8 hours a day in the water. If we weren’t at the beach, we were at the pool. If we weren’t at the pool we were at a cenote. There was sailing and windsurfing and snorkelling and scuba diving and cliff jumping. Well we didn’t all do those things. Some of them were dangerous. So I preferred not to jump off the cliffs.

There is a nice thing about writing an email. It’s kind of one sided. I don’t have to explain why my children now call me Rum Boy. The good news is they have stopped calling me Bock Bock Chicken Rum Boy. I shall never have to explain to you all what 3 lunar cycles in a cenote are. But it does require a lot of rum and no swim trunks. I shall figure out how to delete the video footage and there will never be any evidence. Forget I mentioned it.

We managed to convince the sail boat guy that we had lots of experience sailing catamarans in 20 knot winds with 5 foots swells and that he should let us take a boat out while all the others sat on the beach. We did lose Jack’s hat and Tracey overboard when we turned the boat into a submarine after coming off the top of a wave. . I know we recovered at least one of them. The other was lost forever.

When we came back, we wasted no time. It was clinic day. Our oncologist was a little concerned about the bruising under Spencer’s arms. We had to explain that he had his arms extended on a few of the jumps and the bruising was from the impact with the water. This did not seem to relieve her level of concern. We thought it better not to mention that he went scuba diving. Boys will be boys after all. .

The plan going forward is very aggressive. We are taking the wait and see approach. Spencer started another round of fenretinide and we’ll do another set of scans in 3 weeks to see what’s what. From there who knows? Perhaps something interesting that will involve stem cell rescue just so we can get that good clinical treatment feeling going again. Life has been way too easy for the last few months.

Cheers,

Steve

PS: We hardly even missed the woolly beast. It’s good to see him. Tuesday, he ate my coffee table. I’m going to kill him.

Monday, April 5, 2004 10:59 PM CDT

Seeing Clearly

Today I woke up and couldn’t see out of one eye. The image in the other eye was all blurry. Which is to say it was a fine way to start the day. By the time I blasted my eyes in a hot shower, I could open them both and I was able to see again. In the mirror, I could make out the fine detail of all the blood vessels where the whites of my eyes used to be. It was perfect.



You’re probably thinking this Steve guy needs to have his head rearranged, finding joy in all the crap that life throws at him. Why for once can’t he just be miserable and scream “Oh shit!”?



Well normally, if my eyes were all infected and sore I would be miserable. But I am fortunate enough to have Spencer for a son. Last week when I took him in for a CT scan, one of his eyes was all red. I knew what this meant. It had to be bad news. Surely disease had spread to his orbits and this was the first indication. What would follow? Black eyes? Almost certainly.



They humoured me at clinic and did not one, but two swabs. One viral and one bacterial. They even called the next day to advise that the bacterial swab tested positive. Do I trust that? Maybe. His eye seemed to clear up the next day with a few eye drops. It’s fine now. But still that lingering doubt. But not anymore. I’m pretty sure neuroblastoma is not contagious.



And on the subject of scans the news is mixed. The CT scan was clear. Bone marrow is clear. But the MIBG scan seems to have gone back to where it was last September. The same four spots. The same size they were. Radiology calls that progression. Oncology is not so sure. They say it’s not necessarily bad news (though definitely not good news) . If the spots were bigger or in different places, they would be sure. But they think maybe uptake of the MIBG on the last scan might have been blocked if it was occupied by residual treatment MIBG that was still present but not so radioactive. Sounds like a nice theory, but they were at a loss to explain it to me at a molecular level. For giggles we did a bone scan on Friday and await the results. It certainly looked frightening.



Now I’m no genius. I did however, once score 98% on a second year stats exam in nowhere near a state of sobriety. I know enough not to let hope triumph over probabilities. And probability would suggest that it’s a great time to enjoy a nice holiday on the beach in Mexico while we are all in good shape for snorkelling and have enough hair to block the harsh rays of sunshine. We leave on Sunday. We have plenty of time to do all this medical crap when we get back.



Oh shit!



Steve

Friday, March 26, 2004 6:44 PM CST

From The Coach...

Dear Steve

I'm touched and humbled, after I read your e-mail I was literally speechless.

The team has been a pleasure to coach and Spencer is a part of it in every way. We were missing his heart and spirit before he joined the team.

It shows up in every game and practice. I'm so impressed with him as a person and his perseverence and energy after all that he's gone through.

He's definitely a fighter in every way. As you know the experiences you have in life always change you in some way, getting to know Spencer is one of those experiences for me. He is a bright, happy and polite kid that has shown me what it really means to hang in there and not give up.

As you know his soccer skills have come a long way...at the tournament last weekend I was in awe at how far he has come in such a short time.

I can't wait to see what he does next year.

Thank-you again for your kind words

Ned Hodaly

"The only thing that makes one place more attractive to me than another is the quantity of heart in it" Jane Welsh Carlyle

(Check Past Journal Entries for original Dear Coach letter)

Friday, March 26, 2004 6:44 PM CST

From The Coach...

Dear Steve

I'm touched and humbled, after I read your e-mail I was literally speechless.

The team has been a pleasure to coach and Spencer is a part of it in every way. We were missing his heart and spirit before he joined the team.

It shows up in every game and practice. I'm so impressed with him as a person and his perseverence and energy after all that he's gone through.

He's definitely a fighter in every way. As you know the experiences you have in life always change you in some way, getting to know Spencer is one of those

experiences for me. He is a bright, happy and polite kid that has shown me what it really means to hang in there and not give up.

As you know his soccer skills have come a long way...at the tournament last weekend I was in awe at how far he has come in such a short time.

I can't wait to see what he does next year.

Thank-you again for your kind words

Ned Hodaly

"The only thing that makes one place more attractive to me than another is the quantity of heart in it" Jane Welsh Carlyle

(Check Past Journal Entries for original Dear Coach letter)

Monday, March 22, 2004 10:42 PM CST

Dear Coach:

You’ve done a pretty amazing job this year.

You’ve taken a team and helped build their skills. You work them hard. They play their positions and as a team can get a thing or two done on the soccer field. The fact that they’ve won just about every game they’ve played this year is pretty amazing accomplishment. It’s not easy to get the job done when the raw materials are a bunch of eight year olds.

But you’ve done a few other things that you may or may not be aware of. When you brought Spencer onto the team after he was out of the league for a year, that was a decent thing to do. It meant a lot to him to be able to play with his buddy Jared. He got to be a normal kid again.

When Spencer’s cancer came back, it would have been easy for him to drop out, stay home, and play Nintendo rather than have a kick at a hard season of soccer in the rain. If that’s what he wanted to do, we would have been OK with that. It’s tough when your skills are a year behind everybody else’s. It’s not easy to be the last one in on a run because your hemoglobin has taken a whack from chemotherapy. But you made it a pleasure for him to stay in the game.

It would have been easy to cut Spencer a lot of slack and single him out as the special case who didn’t have to play all the shifts or do all the drills. After all, who would expect the bald kid to pull the same load? But you didn’t take the easy route. He played on the team like all the other players. And now he knows that anything he may have achieved is his own and not one of those bonuses that comes with being sick.

Yet it would also have been easy to just ignore the differences and set the expectation the same as for all the other kids. But never once did Spencer get pushed too hard or feel like he couldn’t succeed. Never were there tears or frustration or disappointment. You set the tone and the whole team followed. Everybody covered for him, but never was a word said or anything made obvious.

Remarkable balance.

So now when I see Spencer confidently charging up and taking on one of those “tough Italian” players, I feel really proud for him. He’s stronger mentally and physically than he’s ever been, and soccer is a big part of that. He’s part of the team. He knows he’s strong and he can compete. And he knows how to win. That’s really important right now.

So though we may have the final tournament still to go, as near as I can tell you’ve already won and achieved perhaps the greatest victory that a coach can.

Thanks Coach!

Spencer’s Dad, Steve

Monday, March 22, 2004 10:41 PM CST

A Fine Day

Today was a fine day. We just wrapped up 2 days of soccer in a big tournament. Nice to see Spencer playing hard and having the confidence to tackle players on elite teams. I don’t imagine that there were that many other players who went most of the season without hair. It was nice to be there.

We all came back to rest afterwards. I couldn’t rest long. Scupper & I wanted to go for a drive in my newly reacquired car and take the final steps towards regaining my status as a human being. So we went to Costco to get a new membership card to replace the stolen one. As far as I am concerned, there are about 4 places in the world to shop: Costco, Home Depot, Lee Valley Tools and then it’s a toss up between Chapters or Future Shop. If you can’t buy it there, why would you want it?

Costco issued me a new card in no time and at no charge. They’re decent people. I even put it to use and bought a ham for the barbeque and nice bunch of flowers for Tracey. I was human again.

I returned to the car with a vague notion that I hadn’t tied Scupper up in the back and had left him free to eat any of the componentry that he liked. It was an uneasy feeling. But when I got back to the car he was sitting comfortably in my seat. No sign of plastic or leather bits stuck in his teeth. All was well.

I tossed the ham and flowers in the back, opened the windows to let the warm air flow in, turned the ignition, and heard that familiar sound from my youth: an engine barely able to crank as it sucks the last bit of life out of the battery.

I thought I’d pull out my BCAA card and call for a jumpstart. But then of course I realized that I still have a few more steps to go through before I fully regain my status as a human being.

But hey. I was at Costco. How fortuitous. The battery was on its last legs. No better place for it to finally die than right here in the parking lot of Costco on a Sunday afternoon. I went right back through the door, flashed my shiny new card at the doorman, and went straight for the battery section. They were powerful. Durable. Guaranteed almost forever. And dirt cheap. I love this place. But wait. How to install it? I swung by tool aisle and grabbed a handy five-pack of pliers. Just what I needed, I only have about 15 pairs at home. I was set.

And then it struck me in the checkout line. Scupper was still in the car. No problem. Except now he was in the car, alone, with a 3 lb ham and a bunch of flowers. He had demonstrated good behaviour, but this was akin to dropping me off at Lee Valley Tools with $1000 cash and asking me to just browse for a while. Should I leave the checkout line and run for it? No I needed the battery. What difference would it make if he ate one flower or the whole bunch. I waited. I paid. I prayed.

As I was rolling out to the car, I decided I was going to go easy on poor Scupper. This was really my fault. You can’t expect a puppy to show that much self discipline.

All that training I have to prepare for the worst and hope for the best proved helpful. It turns out Scupper’s a better dog than I gave him credit for. Either that, or he’s a lot stupider. No sign of pink or green bits stuck in his teeth. The ham and flower were intact. The car started no problem. We were on our way.

What sort of a world is it where there is such joy when your dog doesn’t eat your dinner?

Wednesday, February 25, 2004 1:17 AM CST

Another Dog Story

This is a story about a heroic dog, some more car repairs at the Volkswagen dealer, a lost identity, and a missing bed. And it’s only Tuesday. Why can’t life be boring? I have no problem with boring.

Monday started off in the usual way. The morning rush hour happens within the confines of the house. Two adults to get ready for work. Two kids to get ready for school. Chaos all around. And the typical conversations. “Tracey, have you seen my car keys?” I lose my car keys, but somehow there is always that hint of blame in my voice as though it’s Tracey’s fault. She has omnipotent powers over all the objects of the household. It’s an awesome responsibility. There is a long search. I’m running late. I have to go with the spare set.

“Tracey have you seen my wallet?!!” I know she must be up to pure evil now. This has to be a misdeed of the same scale that found children’s underwear in our freezer when my mother-in-law was staying with us to help out. There are no keys. There is no wallet. I’m really late we’ll have to forget about the wallet too.

“Tracey, I left about $20 in cash here on the dryer. Do you have it?” (I don’t want to go hungry after all.)

There is a certain tension in the air. She denies ever touching the cash. She cruises through the laundry room into the garage and opens the garage door saying something along the lines of “For God’s sake, let me see if I can help you find the car.” She opens the garage door and behold there are two cars. I am set.

I leave, only somewhat sheepishly. Why is the car door open? And where exactly is the dash? My that’s quite a cavity where the radio used to be. Hmmm. Something seems not quite right. Oh and the garage door opener is missing. I’m a bright boy. I’ve already started to figure out what might have happened to my keys and wallet.

I lose the toss before the coin is even pulled out. Somebody has to stay home waiting for the police to arrive, and Tracey has had patients booked for two months waiting to see her. Tracey calls the police. They will be here within 45 minutes to take a report.

In the intervening 4 hours while I wait for the police to show up, I call credit card companies at random. There have been six charges on my Visa card before 8:00am in the morning. They ask me to think carefully as to whether or not these are my purchases.

Eventually Constable Toad (not his real name I don’t want to be sued by the Royal Canadian Mounted – er uh by the local police) shows up. We reconstruct the crime scene. There is debris all over the floor of the car. He asks me if I think any of this might have been touched by the perpetrator. I struggle to think of whether we left bits of the dash board all over the car. I suggest that perhaps it’s not the normal state of affairs. He is looking for evidence with finger prints. There is a George Michaels CD which I try to convince him to take away as evidence. He declines in favour of the ashtray.

We move inside the garage past about ten thousand dollars worth of power tools untouched. Into the laundry room where I know my keys and wallet were. They also left my laptop computer and Tracey’s purse. Constable Toad is ready to make some daring conclusions. “They must have been in a hurry.” We wonder why, looking around, both seeing Scupper at the same time. His tail is wagging furiously in the manner of all vicious attack dogs.

Yes, the dog must have scared them off the moment they opened the door into the family room where Scupper was lying locked in his kennel. But no barking to wake the homeowners? No loud noise? How did he scare them away? The words go unsaid. But Constable Toad and I are both sharp guys. We were surely thinking the same thought.

Scupper must have farted.

I’m sure that’s what he wrote up in his report.

I spent the rest of the day trying to re-secure the house. Strange driving a car with a cavity for a dashboard. I went to Home Depot with the only credit card I have to get a new set of locks and a garage door opener with a fresh set of instructions for reprogramming the code. Was I worried about leaving the house knowing that there are bad guys out there with keys to the doors? Not at all. I left Scupper the wonder dog free to roam.

They were great at Home Depot. Helped me pick out locks and just the right opener. Cut me 4 extra keys. Lot’s of good advice. Not so busy on a Monday afternoon. There was a delay at the checkout. They were making phone calls rather than passing me the credit card slip to sign. “Have you used your card lately sir?”

“No, not in a couple of years. I usually pay with Mastercard.”

“Oh. I’m afraid we’ll need to see some photo ID to reactivate your card”

A long sob story about stolen wallets, and need for new locks was going nowhere. “Can I borrow your scissors?” I cut up the card in front of her. “I’ll have a new Mastercard before I have photo ID. I don’t need a useless credit card. They’re just liabilities.” She understood. Whatever it would take to just make the crazy man leave the store without an incident.

I swung by Tracey’s office to borrow her bank card and get some cash. This was looking like a banner day. In half an hour I was back at the same checkout at Home Depot. “Do you still have the locks.” She did. I pulled out a wad of cash. “I just robbed a gas station so I think we’re all set.” She rang the purchase through without hesitation.

That night we decided to go out to and buy Scupper a new bed. He’s not a puppy any more. No kennel for him. He’s a guard dog and a hero. He deserves better. 4 times Monday night he barked loud enough to wake us up. I’m sure it was bad guys, but I didn’t worry. Scupper had it under control.

Today Tracey had the day off. She left Scupper lying on his new bed to guard the house as she drove her dashless Cabriolet to the Volkswagen dealer for an estimate on repairs. We maintain cordial relations there. They were delighted to serve her.

When she got home, Scupper had eaten his new bed. Just shreds of torn fabric and bits of stuffing everywhere.

There is an old curse, “May you live in interesting times.” We do indeed live in interesting times.

Steve

Thursday, February 19, 2004 10:10 PM CST

Life and Death and Warts


Monday was clinic day. The day we get the new prescription of fenretinide, review the official reports of all the scans, and ask all those serious questions. Oh yes and of course we had to visit the dermatologist. Spencer's warts on his feet are back.

So first the life and death stuff. We sat down with the dermatology resident. She had Spencer's chart. All 3 inches of it. The other 18inches must be tucked away in record storage. We spend a long time going through history. Describing all our wart related experiences. We get into wart theory. We have a deep understanding of the relationship between the immune system and warts. We go through the various treatment options. Though the modality of various treatments whether acid, or liquid nitrogen, or some kind of direct mechanical intervention ,all differ, in the end they penetrate deeper into the skin and trigger the immune system to respond and attack the wart.

This is so much better than the nasty GP who splashed acid on his feet with nary a thought about true informed consent. And this is just the resident. We're only preparing and laying the groundwork in anticipation of the staff dermatologist's arrival. We haven't yet begun to get serious about warts.

She arrives. It's not just clinical. This is a children's hospital. Spencer is an eight year old. He has choices to make. How does he feel about having his warts cut away? Are they uncomfortable? Do they cause pain? Pros and cons all around. We've been treating ith greasy Duoplant and it's hard to keep it contained to just the affected area. We had to stop because the adjacent skin was peeling away and painful. Not treating the warts was presented as an option. My god what were they thinking? Surely the warts will run rampant and my boy will become one massive wart. In the end all the options are on the table and we decide to go with Soluver Plus. It sounds like a wonderful thing. Vincristine for the wart set with no loss of hair. Our boy will likely be saved and still enjoy a reasonable quality of life. No surgery. Very small chance of death due to a toxic reaction. Life is good.

Oh yes. And then there was the meeting with the oncologist. There is no further progression. The CT scan is clear. The bone marrow is clear. The MIBG scan shows one of the spots is gone. The other is shrinking. Sort of maybe, but we can't find the last report because the chart has been cleaned out. Wasn't there a third spot? Whatever. It's only cancer. What's for lunch?

It's bizarre. It's surreal. Our lives are full of high drama. A life and death turning point could come at any time. But then there are warts. It's a long string of events that are punctuated by moments of high expectation and terrifying fear. But there is no life and death turning point. Life and death are the same thing. They are served up together every day in small slices to chew on and savour or spit out in bitter rejection. One moment looks a lot like the moment before and there's no
telling exactly what the next moment will look like. We progress from one to the next with varying acceleration. It's pointless to look back. It's pointless to look too far ahead. It's pointless to sit in fear waiting for someone else to tell us how far we are from the destination.

So what's the point?

Enjoy the moment. They're all beautiful.

February 3, 2004

Car Repairs

You know the great thing about having a kid with cancer is it gives you a new perspective on life. There just isn't time to mess around with life's mundane details. I just received a bill for car repairs. It seemed high. It could be fair. I don't know and I don't care to waste my timefinding out. Normally the thing to do is pick up the phone, call the service manager negotiate and straighten it out. I'd rather play Nintendo with my kids and not deal with the stress. So rather than piss around I thought I'd drop them a little email. I enjoy that. I thought you might enjoy it to. Imagine the poor service manager tomorrow when he reads this:

Hi Rod:

It's been our pleasure to be customers of Company X since moving to the area about a decade ago. We have a fine old Cabriolet which we love. It hasn't required much in the way of service. But the service it gets has been done largely in your shop.

I would like to give you the opportunity to review the invoice referenced above. In my wildest imagination, I cannot think of how it might cost nine hundred sixty-two dollars and sixty three cents to fix the windshield wipers.

I buy the whole story about a leak in the fusebox and the need to replace a seal which by the way, you told my wife would be about five hundred dollars. I'm also fully cognizant that we had the door latch fixed. I'm generally a rational man.

Unfortunately your invoice doesn't detail the hours you spent. There is no way I can sit here and determine whether or not the price you are charging for the work you have done is reasonable.

Here is the really unfortunate part Rod. My son has cancer. Every moment of my life is precious. I really don't have time to discuss details of obscure invoices and listen to the rationale that underlies them. I'm sure you have a good story. I also think if you review the invoice you may find an error that will reduce the price by two hundred dollars bringing it down to the absurd edge of reasonable.

You can credit our MasterCard account by that amount or more and advise me via return email that you have done so. We will be pleased to continue our relationship with Company X, albeit a bit more cautiously. I like having a place where we can drop the car and count on dependable service at a fair price. I'd like to get back there.

The alternative is to ignore this email and say this man is unreasonable and we would prefer not to do business with him anyway. I'm OK with whatever you choose. I just don't have the time to mess around.

Thanks So Much!

Steve


By some funny coincidence, the very next day they were reviewing their invoices and found an error on ours which resulted in a credit of $229 to our MasterCard.

The Scupper Chronicles

Though not necessarily chronologically...


Scupper’s Top 10 List – December 25th

(of favorite adventures with Cathy & Grant – this came home with him in his backpack after an overnight stay)

10. First meeting Grant - I charmed him by putting my paws on the counter and depositing a tennis ball on top of his newspaper

9. Ripping my Santa dog-toy to smithereens

8. Running at Cates Park & all the dogs I met

7 Carrying sticks

6 Sleeping at the end of a long day

5 Getting Cathy up early so I could go pee!!

4 Getting excited with all the action in Pirates of the Caribbean

3 Trying to gobble up a sheep from the nativity scene

2 Walking in the bird sanctuary. Wonder why they let me in a bird sanctuary?

1 Watching for Cathy's face as she stood with her plastic bag and I did the wateriest poop I could muster!

Many thanks to Cathy and Grant for looking after Scupper!

He's a rather exceptional dog. I believe he might even be working on his Top 10 List of Things to Do on Christmas. We'll have to wait and see...


Jan 8, 2004 From Steve

I haven't been posting to the list all that frequently. We've kind of reached a point where we are socially withdrawn and avoid interaction with others due to the cloud of shame that hangs over our family. But alas that is not my purpose in writing today.

I wanted to give an update on Spencer. He made it in just under the wire on the fenretinide study. There is a full pull of scans and tests to be done prior to entry and it proved to be a logistical challenge to get it all done on time. The great news was his bone marrow was clean, one of the spots that was showing on the MIBG was gone, and the others had reduced in size from the two rounds of topless cyclone that he had. The even greater news was that he is able to swallow the 25 or so monster fenretinide pills every day. This was no small feat as three months ago he couldn't swallow the smallest of pills. But as he explained to a 7 year old girl in clinic who was admiring his prowess with a Septra tablet: "I used to have trouble swallowing pills. I tried practicing with mini M&Ms. That didn't work so I took a three month break and now I have no problem." That was comforting considering most of the other treatment options open to him involved stem cell rescue.

Anyway he has now started his second round of fenretinide and is doing great. No ill effects. He's in school. We've enjoyed great fun over the holidays improving video game skills, cross country skiing, generally fattening up, and growing hair. Life is good and whether warranted or not, we enjoy a cautious optimism as we move to another round of scans at the end of the month. It couldn't be better. Well except of course for the cloud of shame.

It's the dog's fault. I think I'll call a few vets and get prices on the Medium Dog Euthenasia packages. It's started a few days before Christmas. The boys were at the annual Balding for Dollars sleepover beside the beluga whale tanks in the aquarium. Tracey and I checked into a downtown hotel and enjoyed being adults. Scupper stayed with friends. He managed to tear apart and eat his little rope Santa toy. He caused general mayhem. He was a dog. No shame in that.

No we waited for Christmas day for that. There were about 20 of us at my sister's house for a lovely turkey dinner. We were enjoying that post meal euphoria. A few were lounging on the stairs that overlook the dining room. It was a perfect moment for that seasonal family photo. The rest of the group gathered round. The cameras were ready. The lighting was perfect.
Even Scupper decided to join in the family photo.

And then it happened.

It must have been something about the rich texture of the lovely white carpet in the dining room. For as soon as his feet touched it, Scupper felt compelled to drop his butt to the floor and drag it for several feet across the carpet leaving a rather impressive skid mark. Apparently those stringy Santa toy bits were causing problems on the way out. It was unprecedented. We were speechless. The carpet was cleaned. Apologies were made. We hung our heads in shame and made our exit.

Eventually, in the fullness of time, we will get past The Incident and once again be able to fully rejoin society. Give us time. We are still tender.

Steve,

Father to Spencer, Not in Any Way Associated with That Black and White Beast That Lives in Our House


Scupper’s Top 10 Christmas List – December 26th

Well Auntie Vicki, since you asked here is my Top 10 List for Christmas.

Scuppers Top 10 Christmas List

10. Being in the living room with the humans when they open presents.

9. My new extra large stainless steel water bowl.

8. A Scupper stocking filled with dog treats.

7. Shaking my head till my Santa hat falls off and then chewing on the pom pom.

6. Sniffing under the Christmas tree to see what treats there might be.

5. Turkey scrap cruising in the kitchen.

4. Doing my lazy human imitation in front of the fire place.

3. Chasing the little red spot from Steve's laser level all around the family room.

2. Wagging my tail at Julia and making her scream in terror.

1. Dragging my butt across the carpet in the dining room leaving a huge skid mark on the carpet right in front of the family posing for photos.

This was my best Christmas ever! I can't wait to be invited to Roya's for next Christmas.

What's all this about an unfortunate incident? And why did I get locked in my crate and my humans leave your house with their heads hung in shame?

Anyway just one piece of advice - when you tear your Santa-dog toy to smithereens, don't eat the stringy bits! They kind of just hang there on the way out and then the alpha dog ties you up on the workbench and does uncomfortable things with a pair of pliers.

Merry Christmas!

Scupper

Redemption - Jan 25, 2004

And then a friend Bob from the east, who’s words I can’t actually reproduce here because they are protected by the terms of use of a listserv far away, asked if Scupper had redeemed himself yet...

Oh Bob I'm afraid there is bad news there. Though I must say yesterday I learned something from Scupper.

To me, underwear is underwear. I don't have my favourite pair that I wear for special occasions. I don't have weekday underwear and bright colours for the weekend. I just have plain underwear and I like it all the same. Which is to say, I don't actually think about it all that much.

Yesterday, I learned that women, or best I not generalize on something like this, Tracey, has favourites among her underwear. There is a whole underwear spectrum to suit all occasions. Some is extraordinarily comfortable. Some is not. Why she doesn't just throw out the uncomfortable stuff and live a life of pure pleasure, I'm not sure.

But at the top end of the favourite scale, is her black bra. I won't claim to know what characteristics of the black bra make it her special favourite. Remember Bob, it was only yesterday that I learned there was even a spectrum, a veritable scale of undergarment satisfaction.

You know where this is going don't you, Bob? You've already made the link between the dog's behaviour and the underwear. You've already figured out that the black bra is doomed. You just don't know the details.

Well here, Bob, come the details.

Tracey was in the shower. Scupper came cruising through. He is more sophisticated than I am. He appreciates the characteristics of the black bra that give rise to its favoured position. It quickly became his favourite too. And like all his favoured things, he loved it with his teeth.

The black bra is no more Bob.

Tracey says she would kill Scupper if he wasn't so cute. Scupper is one bad haircut away from extermination. Yet somehow he charms and manages self preservation.

I think the only thing worse than eating the black bra might be discussing Tracey's underwear in a public forum. I might be one email session away from extermination. If I don't post again Bob, you'll know why.

Thanks for Caring,

Steve

Sometime in December 2003

A Christmas Letter

It’s time once again for the annual Christmas letter. I know this to be true because Tracey has reminded me on a nightly basis of the deadline which passed a week ago.

I’ve struggled with it. If I do a month-by-month recounting of the milestones in our lives over the last year, it would probably read like a horror piece. Unfortunate, because that is not at all how we live our lives. Pretty much every day has been a day with fun and laughter in the Dolling household.

We are approaching another Christmas. We are all together. We enjoy good health (our scale, not yours). And we are full of hope. What more could Santa bring?

Who knows?

When Tracey and I went to our 20th high school reunion this year I bumped into an old friend who commented that it would sure be neat to have a crystal ball and see what the next 20 years will bring. I responded that if I had a crystal ball I would smash it. The only thing I know for sure is that when I wake up tomorrow it will be a great day. Why take anything away from that?

So what the heck do I put in the Christmas letter to bring joy and happiness that warms hearts? Well first let’s chill them a bit – it’s the temperature differential that you really notice.

I took our good friend Scupper – new family addition this year - for a walk to see if I could get inspired. As we wandered through the neighborhood I couldn’t help but notice that all the houses seem to be getting bigger and all the yards are getting smaller. We seem to be building these great sanctuaries wherein we can isolate ourselves from the world. And we make our sanctuaries large enough so that we can isolate ourselves from each other within them. Then we work harder so that we can fill them with stuff and eventually pay for them. What little time we have left we devote to taking care of our stuff or idly entertaining our minds with ever more sophisticated electronic media so that we can forget about the hard day’s work.

Don’t get me wrong. I think we could all use another 2000 square feet to accommodate more power tools and an extra garage bay or two for the 5 Series BMWs. Santa simply isn’t keeping up with the demands of the modern world.

But sometimes I think life would be richer if we just got rid of all the stuff, moved our families into the cozy confines of sailboats, really got to know each other, and embraced the whole world travelling its oceans rather than shutting it out with only selective discourse through our spam filters.

We’re in danger of using up all of our valuable time to accumulate and maintain commodities. If there is anything we’ve learned this year, it’s that of all our most precious commodities, there are two that we should hold especially dear:

Time and Love.

They go well together. You actually have to work very hard to get them. They are free, but oh so valuable. The most beautiful thing about them is that the more you give them away, the richer you become.

So here’s wishing you a very rich Christmas. You can be sure it will be a great day.

Love From,

Scupper, Spencer, Foster, Tracey & Steve

November 28, 2003

Dog Thoughts

My boss is going to retire in a few years. When he does, his wife is going to allow him to get a dog. As reparation, he has just finished reading a book on dog behaviour. He has passed along tidbits of expertise over the last several days. It seems like it was an engrossing read that was a comprehensive treatise on dog behaviour and human/dog interaction.

Knowing that I am a relatively new dog owner, he asked me if I would like to read it. I thought about it a bit and said: "No thanks." I figured Scupper is a year old and it's best not to know how badly my ignorance has scarred him for life during his formative months. Best to let sleeping dogs lie.

And then I thought about it a little more.

My brain is full. When I go to work each day, for some reason they expect me to do a lot of work. There are plans to author. Numbers to crunch. Phones to answer. Emails to write. Presentations to do. And when I get home. There are kids to play with. Gamecube games to win. Hockey to watch. Harry Potter to read. Good night hugs. And then there is work to do. Doctors to write to. Emails to read. Treatment plans to discuss. Clinic download to do. And somewhere along the way we had to figure out. How to heplock a central line. Inject GCSF into an encephalon. Feed through an NG tube. Change dressings. Estimate hemoglobin by observation. Learn more about relapse neuroblastoma than most pediatric oncologists. Hell, there isn't enough time to write complete sentences let alone read a book about dog behaviour. I used to read a book a week; now I'm Magazine Man.

And then I thought about it a little more.

No, the real reason I wouldn't want to read a book about dog behaviour, is that I don't want to know what goes on inside Scupper's brain. I would like to think that he eats the Rhododendrons because there is a nutrient in the bark that is good for him. I believe he chews the baseboards because he feels a deep sense of connection to our home and wants to add his own personal decorating touch in the only way his limited dexterity allows. I
know he steals Foster's shoes because he wants to make the boys' behaviour seem good by comparison. And the frenzied greeting every night when I come home? As far as I know, he spent his entire day thinking about me, wondering how I was doing, wishing he could be with me, and thinking about what he could possibly do to make my day brighter when I return. Why ruin the mystery?

And then I thought about it a little more.

And what I thought was how wonderful it is just to hang out with your dog and not have to think about anything. The vacuous mind is a thing to treasure.

Steve,

Thoughtless Companion to Scupper

Nov 1, 2003

Halloween

Halloween is a time where it is important to always maintain a vigilant eye for all matters related to safety.

It probably started when we went to carve the massive beast which is euphemistically referred to as a pumpkin. The first thing we did was appoint a safety officer for the carving exercise. Just moving it gave rise to the risk of back injury. The guts inside all had to be cleaned off the floor as we went or there was a serious risk of slipping. Those little tiny pumpkin carving saws where absolutely useless in trying to cut through 12 inches of solid pumpkin flesh on the top of it, so somebody had to keep an eye on the relative distances of children's fingers, dogs teeth, and 14 inch knife blades. It all went off without a hitch. Well pretty much. We were afraid for a moment that Foster was stuck inside the pumpkin, but we managed to extract him by pulling him out by the feet.

There were some thirty children at the party. Every one of them seemed to be a ninja, a pirate, a grim reaper or a Zorro with some kind of weaponry. At one point I counted nine kids in a row coming down our stairs with swords in hand. And to think just two years ago we wouldn't even allow a toy water gun in our house. The standards must be slipping. In any case I think there is a case to be made for weapons as a deterrent. There was not one incident of slashing reported. Nobody misbehaved because they knew there were a dozen heavily armed and badly trained foot soldiers of doom ready to retaliate long before parental intervention would be required. It was anarchy in its finest hour.

Now there are certain portions of the evening that I must confess I have very little memory of. In some cases I'm only able to look at the physical evidence to determine what might have happened. I did find three empty rum bottles, a left over stroller, a pair of children's shoes, a large number of serving dishes, nine small pumpkins, three fully charged fire extinguishers, three blow torches and a wheelbarrow full of spent fireworks shells.

Ah yes I do remember the fireworks. They came before the discharging of the rum bottles. Our good friend Rob spent at least two hours laying them out, taping them together, and numbering the sequences. We again appointed a safety officer. The safety officer made me remove my nylon cape and I did have to wear cotton pants over my nylon pumpkin panty hose. (Tracey calls them "tights", but they were panty hose). We operated three firing buckets and had quite a show going which was interrupted for only a short period.

When the police came, we turned off our torches and I went over to say hello. The officer kept looking at me and then asked to speak to the responsible adults. I introduced him to our safety officer. He asked a number of questions and pretty much ignored my responses and directed his questions to my friend in a surgeon's costume.

Apparently once you have a crowd of a hundred people and you've taken over the street, you've engaged in exercise which requires a permit from the city. Anarchy isn't scalable to the municipal level. He asked us to move the fireworks display back into the yard. We asked him to drive around the block and promised that by the time he was back we would be conforming to the municipal code.

In the end everyone had a lot of fun, nobody got hurt at we had it all wrapped up by 1:00 in the morning. A cautionary tail: If you want to be taken seriously by people in positions of authority, do not shave your head bald and paint it orange with little black triangles for your eyes and nose.

Steve

The Jim Chronicles

June 16, 2003

Thank you Gail. Your message was like a great glass of prune juice.

Alas, it's not really a good time for humour in our house. But I feel I need to talk about it. I know this isn't really the right forum for this sort of thing, so I put up that FUN banner. Not that this is fun, I just don't know where else to turn. You see, one of the boys has gone missing.

It's Jim. We last saw him on Wednesday. Nobody has seen him for 5 days.
Now he's plastered with that label "missing". It's been so long now we're on the verge of changing it to "missing, and presumed..." Oh God. I can't say the word. You know the one I mean. Oh hell, I'll just say it:: "stinky"

Tracey is distraught. She last cleaned his cage on Wednesday and is afraid she left the door open. Now I'm feeling a massive onslaught of guilt. I just assumed everything would be OK. I failed to act when I had the best chance of keeping our family intact.

This isn't the first time he's run away. It's happened twice before. Each time he made his way into the office and found the little hole where the electrical cord comes out under a large built in cabinet. All we've ever had to do was put out a little food and wait stakeout style. It's always been an adventure.

This time started out the same way. A few quiet minutes in the office and we could hear him rustling away behind the kickboard of the cabinet. Hours passed, but he remained resolute. Me and the boys sat and ate donuts, drinking coffee, and smoking cigars. Well OK, we didn't smoke cigars. And there was no coffee. And we really only wished we had donuts. And maybe it was only ten minutes rather than hours, but it felt like a proper honest-to-God stakeout. After while boredom overcame us and we left him to his own devices under the cabinet.

As evening came around, I hadn't forgot about our furry friend. I put the cage next to the hole under the cabinet with the door open. Inside fresh water and massive leaf of lettuce. In the morning, the lettuce leaf was gone. The cage empty. Little Jim decided to relocate and he'd laid in a stash of groceries in his new luxury condo. I was sure he was just waiting for us to put in a garden and little swimming pool out front on the patio for him. He lulled us into a false
sense of security. It was all a game. The days slipped by. The food and water disappeared.

But over the weekend, nothing. Now we can't remember when we last heard little hamster noises under the cabinet. The cage is untouched. The situation has become grave and serious before I even fully appreciated the risks to our family.

Now I feel I need a little help. I have to think through the various hamster extraction methodologies. I need some advice on what's best. Here are a few of the thoughts going through my mind:

- First, compressed air. I could drill a little hole on the other side of the cabinet. I've got 120psi and a 60 gallon tank. Should be no problem to blast him out. But how strong are little hamster hearts?

- How about vacuum? I can fit the nozzle in hole. But am I just swapping "hamster stuck in cabinet" for "hamster stuck in vacuum hose"?

- These don't seem like humane alternatives. Perhaps I should bring in the hydraulic jack and raise the cabinet for a little look underneath. But it would destroy the paint on the walls. Oh, how can I think about the paint when Jim's life is at stake? But then again, he is only a hamster. I'm not sure it matters, I don't think I can fit the jack under the edge.

- Maybe the best thing to do is to just leave his cage there day after day until the kids reach there own conclusions. But what will they conclude? I'm not sure I want to go there.

Of the all the life and death struggles of the cosmos, I recognize this ranks just a notch above goldfish floating on their sides, but if there is help out there, I'm listening.

Thanks,

Steve,

Husband to Tracey, Dad to Spencer & Foster, Dominant Alpha Male to Dog Scupper, and Negligent Caretaker of Jim the Hamster

PS: If anybody can tell me if hamsters just dry out or if they go stinky first it might be helpful in the decision making process.


June 17, 2003

Well it was a late night last night. In the end it was Archimedes who saved the day. With a long enough lever (a two by four) we were able to lift the end of the cabinet bit by bit wedging little bits of wood in as we went. After it was up about an inch I was most surprised to see little hamster paws and twitchy nose looking out at me.

Of course it wasn't easy. We had to use the compressed air to scare him down to the end where we could reach in and grab him. The whole exercise took an hour and I broke the cabinet letting it back down.

But in the end, no stink, no lies, no tears.

I feel like we should set him free now rather than lock him behind bars. Where exactly is natural habitat for these critters? Hotels in Chicago?

Steve


Sept 13, 2003

Sometimes life just cruises along so well, you forget about the risks and what might happen. Life has been like that for us lately. Everyone seems to be enjoying exceptional health. School is going great and soccer is starting up again for the year. All was fantastic. Until tonight that is.

Sometimes you think a chapter is over and finished. You've got it behind you. You've put it to bed and you've moved on. You don't expect the breeze to come and blow away the book mark and flip all the pages back to the beginning. And why does it always happen when you don't expect it?

There we were enjoying a wonderful evening. Spencer is over staying at a friend's house. Foster went to stay with his grandparents. We had gone for a nice walk on the seashore with Scupper at sunset. We were just sitting back and enjoying a rare moment of utter peace.

But it was just a little too peaceful. Things were just a bit too quiet. Something was missing from the background noises that assure you that all is right with the world.

That little rustling that tells us Jim the Hamster is secure in his cage enjoying the full wonders of hamster life was absent.

The cage door hangs open.

Jim is gone.

I'm sorry to bring you all back to this place. I know you all shared these moments of horror with us once before. I'll keep you updated as the investigation unfolds. I have new flashlight batteries and a fully charged air compressor.

With Great Sadness,

Steve


Sept 14, 2003

Last night I was preparing the cage with lettuce bits to put near the little
hole under the cabinet in the office. As I was bending down with the cage,
there were two beady little eyes looking up at me. Jim was standing on the
open prairie of the office floor. We stood stunned, staring at one another
for a full ten seconds. And then in the age old rhythms of large predator
and small rodent, I reached down, and he darted in the hole. All was right
with the world.

This morning, I cooked Tracey breakfast with omelet-like characteristics
and then went into the office . Sure enough he had visited in the night
removing the lettuce leaves to the pantry of his new condo. The games have
begun. Let us hope that they end with a good outcome.

Steve


Sept 17, 2003

Well this is not working out very well. I invested $50 in a special live trap to capture Jim the Hamster who originally cost $6.99. The boys and I set it up on two successive nights. On both occasions Jim managed to set off the trap, but in the morning when we check it, it's empty. Either he is slipping out underneath the door or somehow squeezing through the mesh. (The trap is a little on the large size, but it was the only one at Home Depot that seemed up to the job given that I'd prefer to give the hamster back to the boys alive.) I think for another couple of thousand dollars, I should be able to pick up some low-light motion-activated video equipment to see why the trap is failing.

There is another school of thought that says rodents just don't belong in human dwellings. I'm starting to come around to this way of thinking.

Anyway, we are going for a bone scan tomorrow. I think I'll have a little chat with the Nuclear Medicine folks and see if they have any isotopes that can tag a hamster and flush him from his hiding spot. I'm sure radioactive hamsters can't be any more dangerous than any of the other treatments we've put Spencer through.

Steve, Rodent Hunter


Sept 18, 2003

Well it's all over now. Jim the Hamster has been returned to his cage. It was a very low tech ending.

Tracey had heard that if you build a ramp up to a bucket with food and water in the bottom, the hamster will go into the bucket, but not be able to get out. This morning Tracey and Spencer were busy setting up the new low tech trap. They had their carrot bait on the floor. Out walked a hungry hamster. He surrendered without a fight and is now back in custody.

In the meantime I've begun work on filing a patent for radioactive nano-technology neuroblastoma-seeking hamsters that will forever eliminate the need for more invasive forms of treatment. I just have to work out a few of the technical details and find a medically oriented co-sponsor so we can begin trials...

Steve, Rodent Hunter – Retired


December 17, 2003

It is with only moderate sadness that I must report the passing of Jim the Hamster. You've all lived through a few traumatic episodes in the past. I felt duty bound to report his passing. Please. Let us not grieve the passing of Jim. Let's celebrate his life and the joy he has brought us.

It all happened very quickly. On Monday, Foster had him out of the cage. We noticed that his forearm (paw?) had swollen to about 4 times its normal size and he was unable to walk on it. Monday night was not fun. Monday night was the night I struggled with what to do with the hamster. Clearly a forearm swollen to 4 times its normal size was not a good thing. We called the vet. They offer a pocket pet euthanasia program. For only $45 they exercise some humane method of killing the animal and disposing of the body. But they closed at 5:30. It was 5:29pm. They suggested that we could take him to an emergency clinic with later hours. I shudder to think of the cost.

My dad grew up on a farm. I knew what the right thing to do was. Animals mustn't suffer. I should have taken Jim to the back yard and given him a good whack with the back of a shovel. I didn't grow up on a farm. I am a coward. I did not want to face the kids and explain to them that I had taken their hamster out the back and whacked him with a shovel. We let Jim suffer overnight.

For some reason I didn't even explore the emergency clinic. I am philosophically opposed to paying more than $100 to have a hamster killed when he cost $6.99 new and has consumed less than $20 worth of food in his long rich 2 year life. I am a cheap coward.

Tracey took him to the regular clinic in the morning. The vet reported that it looked like a large sarcoma. She paid the $45 and Jim was gone forever. We didn't want to bring him home and do the back yard burial. I couldn't face the questions. The $45 was good value.

So what do you tell your boys when cancer has ended the life of their pet? We bought the hamster fully cognizant that he would only be with us a short time. The cycle of life was an important learning experience from the outset. We skirted all the tough stuff. The boys grieved for close to 14 seconds.

I'll tell you what we are prepared to tell them if the question comes up. We will lie through our teeth. Jim was old. He developed an infection. That's what we will tell the boys. They have a large enough dose of reality every day.

Steve, Coward

Spencer Story Corrected

Tracey noticed that I corrected the spelling in Spencer's story and it lost it's charm. Here is the unedited original draft:

Caser

Caser is a dosis. Caser is a thing you hoaf to fite for to win. Caser is a thing that I usto have. I thing eversone shud gite it so they can se watit fells liks. Wat I think it is a thinge thate coms to you for a resin. I thing it cam to me becos it nou I cud make it.

And then there was actually a more polished second draft after Spencer and mom spent some time with the dictionary and explored his beliefs expressed in sentence two.

My Story About Cancer

Cancer is a disease. Cancer is a thing to fight for to win. I use to have a lot of cancer but now I only have a bit. If you have cancer, I have some advise. Take your medicine and listen to your doctor.


I will now retract my original point about my stories being more funny than Spencer's. If you read the first version out loud with a French accent, you will roll around the floor laughing.

A Spencer Story

There is some competition in the Dolling household. I personally think my stories are funnier, but I have to say Spencer's kind of have a way of getting to you as well:


My Story About Cancer

Cancer is a disease. Cancer is a thing you have to fight for to win. Cancer is a thing that I used to have. I think everyone should get it so they can see what if feels like. What I think it is a thing that comes to you for a reason. I think it came to me because it knew I could make it.


Spencer, Age 8 (Just starting to write in English - he goes to a French
school)

Good to Be Back Home

Dec 13, 2003

I have just returned from Korea. Sometimes when travelling abroad it is possible to have experiences that change your worldview and forever alter relationships with those you love. Such was my trip to Korea.

In all my travels to Asia, I think I have pretty much avoided drinking whisky and singing Karioke. Not so this time. My selection was Tie a Yellow Ribbon. It was badly sung, but the Koreans are such gracious people. They backfill with noisy cheers and tambourines so that nobody has to suffer. As traumatic as it was, there was nothing about singing Karaoke that fundamentally altered my world view.

No. It happened before that.

Mr. Soe and I arrived early for dinner. We were waiting for Mr. Kim, Mr. Lee, Ms. Park, and Mr. Su. We made idle chitchat. He explained to me that we would go to a special place for drinks later. He ordered up dinner and mentioned something about "dark" meat. I just nodded my head. I thought he said dark meat, but then again Ks and Gs tend to be interchangeable in Korea and Rs are pretty soft.

Later Mr. Kim arrived he sat down next to Mr. Soe. Now I don't speak Korean, but I figure the conversation went something like this:

Mr Soe: "What took you guys so long?"

Mr. Kim: "Oh you know, the usual traffic. Have you already ordered dinner?"

Mr. Soe: "Yeah I thought we'd go with dog tonight. I've ordered the sweet dog first and then the spicy dog for a little adventure."

Mr. Kim: " What are you nuts? Westerners don't eat dog. We can't serve him dog."

Mr. Soe: "Oh I just assumed given his skill with chopsticks and love of kimchi that he was fully integrated into Korean culinary habits. I told him we were going to have dog and he didn't mention that he had any problem with it."

Mr. Kim: "Now what do we do?"

Mr. Soe: "Let's not mention it. Maybe he won't know the difference."

When the spicy dog arrived, Mr Soe said simply "Ah here is another kind of beef. A bit spicier than the first. I think you will enjoy it." Mr. Soe almost avoided one of those embarrassing international incidents.

But it was Mr. Su at the other end of the table whose curiosity became overwhelming. He asked in perfect English: "Is it common for people in Canada to eat dog?" Mr. Kim nearly choked on his kimchi.

Now I come home and see Scupper. I've always felt intellectually superior to him, but we shared a certain mutuallity in our position at the top of the food chain. Now I can't help but wonder just how tasty he would be barbequed in little strips, served in lettuce leaves with a little chive, sliver of garlic and some tasty red chilli paste.

Limping Along

So there we were indulging in the post-surgical euphoria. Spencer was recovering well. Most importantly, the bits of the beast were dead. There are those who have said that you have one clean shot at a cure. It's black and white. We were muddling around in shades of grey until that ever so brief pathology report told us that the world might be white after all. Life was good.

This disease makes us sensitive to our children. What does that cough mean? Why the persistent runny nose? How did you get that bruise? Everything has potential meaning. Our sensors seem to go up and down a bit depending on where we are in the cycle of treatments and how long it's been since the last scans and test results. Somehow when he seems unbelievably healthy and it’s been a few months since scans, an unexplained bruise brings a certain amount of terror. When you're doing well, it seems like there is so much more to lose.

But after the surgery, he had every scan and test going and they'd had a look around on the inside and had a go at tissues under the microscope. Everything was clean. The monster was in full retreat. We could relax for a while. Our personal terror threat status had dropped to "low" for the first time in 15 months.

Then it happened. Watching Spencer, you could see that his movements were a little guarded favoring his abdomen. Nothing to worry about, he did after all, have an eight inch incision that will take a while to heal. But then he seemed to have developed a limp. Personal terror threat status raised to "yellow" or "elevated".

"Spencer, why are you limping?"

"My heel hurts."

Ahh, his heel hurts. The boy probably had a hard landing off his skateboard or bicycle or hanglider or parachute or any of the myriad of other regular boy stuff he seems to have been doing since last week's hospital discharge. Probably he jumped hard in the shallow end of a swimming pool by mistake. I've never heard of a case where the monster has come back with a vengeance and gone after the heel.

"So did you injure it in some way, Spencer?"

"No it just hurts. I can't walk on it anymore." Those are danger words. Personal terror threat status raised to "orange" or "high". Over the next day or so, he became very reluctant to walk. When he did, he put no weight on his heel. Things seemed to be deteriorating rapidly.

Thank goodness for Tracey. She is a woman of action. She gathered up both the boys, Spencer with his sore heel, and Foster with his persistent cough, and took them off to the doctor. Interesting. A regular doctor. Our general practitioner. Someone unskilled in the oncological arts. If they had asked for an updated health history, I wouldn't see my family for three days.

When I got home from work that day, Tracey was furious. Deeply imbedded in the pad of Spencer's heel were 3 or 4 warts. The doctor had whipped out some magic wart killer stuff and applied it to his heel. When asked if it would hurt, he said no. Three hours later Spencer was in tears with pain. There was no proper informed consent! No opportunity to explore other treatment options!

I laughed. That made Tracey more angry. Somehow warts seemed like such an utterly normal everyday occurrence. Treat them all day long, any way you like, with or without proper consent. I can live with the consequences.

"And by the way, Foster probably has asthma and came home with a bunch of inhalers."

"Asthma? I don't really know anything about asthma. Is that worse than cancer?" Tracey's jaw dropped.

Personal terror threat status downgraded to "green" or "low". Husband status downgraded to "doghouse".

Pumpkin Pie

Yesterday we began the traditional preparations for Thanksgiving. Well pretty traditional. Just a couple of pumpkin pies. Well actually 17 pumpkin pies: 4 for the big family dinner, one for Spencer’s friend Jared, and 12 mini pies for the nurses on the ward.

I began by gathering the required equipment and ingredients from home: some flour, a pot, mixing bowls, a few spices, brother Foster, pastry blender, and friend Jared. I packed them all in a bag and headed for the hospital.

Meanwhile back at 3B, Tracey began the work of finding a kitchen. As it turns out, not an easy thing to do. Hidden away on somewhere on the second floor, an oven was located. The big problem was that Spencer couldn’t actually leave his ward while the chemo was flowing so the playroom became our prep kitchen.

Tracey headed out to the supermarket to grab a few of things I didn’t bring. By the time you add up the milk, cream, pumpkin, mixing bowl, measuring cup, eggs, extra pie plates, measuring spoons, and spices, it was possible to get everything we needed for only $76 – just twice the price of what it would have cost to buy 5 pre-made pumpkin pies. Oh, I think I forgot to mention the $45 parking ticket for failing to notice the hidden handicapped-parking stall. All right so the pumpkin pies were a dead loss economically. That wasn’t really the point anyway.

We gave the playroom table an alcohol bath and started the preparations. The secret, of course, is in the pastry. Real lard, very cold water, and a minimum of handling ensure the tenderest pastry. Needless to say, we rolled it to death. The filling had its final mixing in a washbasin and the first batch was ready for the oven. By this point, the chemo was finished and Spencer was free to leave the ward with his post chemo hydration still hanging from the pole. Tracey took the boys downstairs while I started on the next batch up in the playroom.

In no time at all the first batch was done and the second was ready for the oven. It was at this point where the exercise became a little more complicated.

Tracey had to run Jared home. We synchronized our watches so I would know when to take the pies from the oven. I went down to the parking lot with them so I could have the parking pass to use with the car that uncle Johnny had dropped off so that we could deliver the pies when Spencer got a pass when his hydration finished. Then back up to Spencer’s room and he would lead me to the pies.

All was going well. Right up to the point where I headed back into the hospital with 4 minutes to spare and all the elevators where dead. So there I sat in the lobby with a boy all alone on the third floor and pumpkin pies in an oven at some undisclosed location on the second floor.

The people who design hospitals are very clever. They design stairwells and the door locking systems so that anybody can leave the hospital, but security remains controlled. So it actually took me four different stairwells before I could find a path that took me to an open door on the third floor.

I got to Spencer’s room with no time to spare. Now since he still had his IV pole, stairs weren’t really an option. I was going to have to go solo. “Spencer, where are the pies?”

“Ah, I’m not really sure Dad, but you know where we go to the lab? I think we turned the other way.”

It only took me three stairwells to find one with a door open to the second floor. Now where? I had hoped that I could just go by smell, but it was tenuous. There was a faint odor of pumpkin radiating from the psychiatric ward. I tried there. My exasperated questions about pumpkin pies and ovens and elevators left them under the impression that I must be an inpatient, prematurely aged. There were no pies in Psychiatrics. Everything else on the second floor was locked up. Everything that was, except the Eating Disorders ward. Yes it was here that I found an oven full of pumpkin pies, just ever-so-slightly overcooked.

I’m going to have to think carefully this Thanksgiving about just what there is to be thankful for – there are just so many things.

Dolling Family Surgeries: A Comparative Study

Surgery date:
Spencer - July 17th
Scupper - Aug 7th

Surgery performed:
Spencer - residual Neuroblastoma resection
Scupper - testicle resection

Surgery duration:
Spencer - 6 hours
Scupper - 11 minutes

Pre Surgical Requests:
Spencer - no staples to close the wound
Scupper - sure I'd liked to be tutored - I want to be the top dog

Surgery Upgrades
Spencer - bonus night in ICU; no staples
Scupper - paid $9.95 for the premium sutures

Surgical Outcomes:
Spencer - complete resection of the tumor bits
Scupper - complete resection of the testicles

Pathology Report:
Spencer - mature, well differentiated, stroma-rich
Scupper - dogs balls

Post Operative Release:
Spencer - 5 days
Scupper - 5 hours

Post Operative Care Instructions:
Spencer - do whatever you feel comfortable doing
Scupper - no hanging with other dogs, no playing fetch, remain on leash, rest and low activity - 10 days

Reproductive Prognosis:
Spencer - not impacted by surgery
Scupper - grim

Balls:
Spencer - big balls
Scupper - none

Informed Consent
Spencer - provided by parents
Scupper - let's hope the dog doesn't get a lawyer

Spencer Returns

To the 3B Team

It is with great pleasure that Team Spencer makes a triumphant return to 3B. Those of you with scatological training will recognize the above for what it is. However, as we travel this road once traveled before, it is nice to do it in the company of really nice people like yourselves.

You will notice that Team Spencer has implemented some changes since our last visit at the termination of the stem cell transplant engagement. We have upgraded the primary unit by adding about 50% to the body mass. This upgrade was deemed necessary in part because the plant was running at less than full capacity and in large measure because we have ambitious development plans. Please take into account the new scale as you record daily metrics and implement maintenance activities.

You will also note that we have added significantly to the height of the primary unit. This should make the monitoring challenge a little easier for you. You will now actually be able to see the top of his head over the counter as he cruises to and from the play facility. Please note that the head is fully covered by a robust insulating material. The Planning Department has deemed the insulation material to be a fire hazard, and it will be removed shortly. Team Spencer is accepting recommendations for transitional colours for the insulating material if you have thoughts in this area.

We regret that you were unable to accommodate our requests for a room with a view of the harbour, ensuite spa, and complimentary low-carb lobster lunch. We do understand the funding / capacity issues and will endeavour to make do with the accommodations such as they are.

In response to the prior matter before the Workers Compensation Board with respect to risk of hearing loss associated with snoring, changes have been implemented. There are now reports that I no longer snore, though I have been unable to verify the results personally. Please bring any new observations to the attention of Team Spencer to allow corrective action prior to filing notice with the Board.

We trust that the numerous good references we have given to prospective clients have helped to increase your business over the last year. We look forward to an engagement with you here that will even further reinforce those positive experiences of the past.

Sincerely

(Signed Spencer's Dad)

On Behalf of Team Spencer

Of Rabbits and Monsters

Yesterday morning arrived as a beautiful sunny day. We were all enjoying our coffee, cartoons, or what have you and the doorbell rang. Spencer went to get the door and two of our neighbors were there. I was away in the office and heard only pieces of the conversation. There was much excitement and some discussion about a rabbit. I came to the door and suggested that we prepare the barbeque.

They had in their arms a cute little grey and white bunny. Apparently it was in our front garden being stocked by one of the neighborhood cats. They wanted to know if it was ours. It wasn't of course. We barely have the skills to manage the one rodent we have.

Somehow or other it was suggested that we should take this rabbit into our care. One of the finders had a terrier and the other was just about to go out of town. Oh lucky day, now we were rabbit owners. Why did they deprive the poor cat of a breakfast interrupting the natural order? Ah well. Of life's great challenges this one barely scratches the surface.

I darted into the office and retrieved my brand new trusty rodent trap. It was a small rabbit; I thought it would make a fine cage. The neighbors were clearly nervous at this point. I assured them that it would make a solid holding pen until I could get the barbeque ready. They left, somewhat reluctantly, more than a little unsure of my intentions.

Spencer disappeared into the kitchen with trap and bunny. In no time at all, he had lettuce out, a small dish of hamster food, and a fresh bowl of water. He was holding the bunny and had already determined that its name should be Cat Food. He sent me off to get the digital camera so that we could make little posters to put up around the neighborhood in hope of finding its real owners.

It was beautiful. The bunny was all about caring and kindness and love and hope.

Elsewhere in the kitchen other things were brewing. Deep inside Spencer's body, the monster is back at work. His post MIBG scans on Friday show new areas that are suspicious. His pelvis and spine and the original spots are all lighting up. We don't like to practice amateur oncology, but this cannot be good news.

This was not beautiful. The monster is all about pain and suffering and uncertainty and fear.

So who wins this one? Caring and kindness and love and hope? Pain and suffering and uncertainty and fear? The rabbit is up against a tougher foe than the slow old tortoise.

It's a hell of a question. I, for one, don't want to know the answer. The only thing I know for sure is that tomorrow is going to be a beautiful day and I do believe I'll skip work and go fishing with Spencer. On Wednesday, we'll go see the professional odds makers and they no doubt will tell us that the monster has the edge. But that's two full days away. We'll give caring and kindness and love and hope a little head start before we go fighting monsters.

I think the rabbit deserves to win one.

Essential Tools

Spencer came home with an NG tube. It's basically a small tube that goes down your nose and into your stomach. He'll likely get a good portion of his daily caloric intake this way for the next week or two. You may recall my oblique reference to the fuel pipe in the plant in earlier email? To say "It's always terribly disruptive to productivity doing a new primary installation like that” doesn’t begin to describe the horror and degree of discomfort anticipated by a seven-year-old boy contemplating having one stuffed up his nose and down his throat.

So there we were last night. Spencer had a nice meal of KFC. He's feeling great. After dinner he wants to try on Halloween costumes - he's planning on being Harry Potter. All very nice because we didn't really even expect him to be out of the hospital in time for Halloween.

Now there's a small problem. Harry Potter isn't bald. But that's OK because Nanny bought this crazy wig for just this purpose. So on goes the costume, but you can't have Harry Potter with hair down to his shoulders. No you have to trim the wig. Cut it down to size. So off Spencer and mom go into the bathroom to cut the wig.

You already know where this is going don't you?

Yes that's right. A couple of minutes into the process, "Oh my God!" I am not sure which God Tracey was hailing, but it must have been the one that fixes severed NG tubes. Sure enough Spencer walks out of the bathroom with two tubes when he walked in with one. Tracey appears behind him looking like she just stepped on and killed Jim the Hamster.

"We have to get a new one Spencer. I'll call Eagleridge and see if they can put a new one in.,” says Tracey.

I am going to preserve Spencer's sense of dignity and not explain what followed. Let's just say he was a little upset.

Personally, I have no medical training. If I see a bit of broken plumbing, it needs to be fixed. It wouldn't occur to me that you ought to rip all the plumbing out and start again. If it's copper, get a few connectors, solder in a new piece. That new fangled fancy stuff, crimp in a new bit. If it's low-pressure plastic stuff and it only needs to be good for a few weeks and you don't have the parts? Duct tape. Done.

Duct tape, WD-40 and Vice Grips and you're pretty much ready for anything. Now I haven't had to use the Vice Grips or WD-40 on the boys yet, but they're ready when I need em.

Essential Skills

All right so we've got the blood count pool and go-kart issues out of the way. I guess it's time to give you an update on the driver. I have to be careful with these things. I printed out the last few that put a stem cell transplant in a business context for Tracey. She passed them along to the nurses to read. I had a complaint about my characterization of nurses, so I had to dig up the old email about the "Dark Night on 3B" just to regain a bit of favour. I think it drew one tear and a few laughs. Now it seems the nurses come to expect a little bit of humorous writing when they start their shift. The burden is too much.

For most of the weekend Spencer has been very low on energy and spends most of his time sleeping. When he is awake, he is generally coughing up this thick mucous stuff or sitting on his commode with diarrhea. His temperature has been hovering around 39, which I think is something like 104. They have two poles supporting two triple IV pumps for general fluids and antibiotics, a single pump for morphine, and another pump for food. He has a tube down his nose and funny glowing red monitor on his big toe that measures his oxygen level and heart rate. His breathing is often laboured. There is an oxygen mask on his bedside. He gets a dedicated nurse around the clock.

I think the only difference between this and intensive care is that they don't have a ventilator and heart resuscitation whatchamcallit at his bedside. That, and of course I get to park my butt in a comfy Lazy Boy. So from this I am supposed to find humour?

Alas, it's too much to ask. There is too much concern and worry. But at least I take comfort in knowing that he is still doing just about exactly as expected for stem cell patients. He's really not doing badly at all. His fever dropped a bit today. He even watched a bit of TV. Humour is still a little bit much of a challenge for me. All I can do is offer up a bit of advice that stems from guilt and regret that has built up over these last few days. If there is some good that can come of this, perhaps it will come from you being able to do for your children what I failed to do for Spencer in his time of need.

This one is really directed at the fathers on the list. Mothers will either lack the skills, or generally speaking, have hang-ups that will prevent them from doing this properly. I hate to generalize, but I find this to be the case. This is a skill development thing. It's really rather simple but it could have great effect. Here is what you need to do.

Teach your children to spit.

It sounds simple, but it is not. Believe it or not, there are adults walking around who lack this skill. Tracey, for example, never really learned how to spit properly. There are times when I have seen her needlessly suffer when there could have been a better way. She just finds it so disgusting that she never really learned the proper technique.

By now you realize I'm not talking about a simple gathering of the loose saliva in the mouth followed by a spray filled pthhhhh. No I mean it. You gotta teach em the full oyster. Anything less is really a disservice. You know the one I mean. The great hairy horker. That's the one. Starts with a deep nasal intake, mouth closed, those passages at the back of the nose making a deep resonating sound. From that you've got your primary coating the back of the throat. Next you follow it up with the great throat-clearing whack of an air rush that brings it all up. That's your secondary. Done right, it has a certain satisfying dryness to it all. Now for medical purposes you could stop the training right there. That's all you need. A little suction or let er run down into a spit cup and your done. The trouble is you can't train your kid to steps 1 and 2 and stop there. Nope, for them to excel they are going to have to train on stage 3. Otherwise they'll think it is gross and have no interest. You know it well. You get that plug roughly centered on the back of the tongue while you are taking a massive lungful of air. As it is rolling down the tongue, you’re bringing the lips together to create that venturi that will accelerate that puppy up for some truly satisfying distance. Done well it pretty much snaps from the lips. You can combine it with the shoulder and neck forward thrust technique if you like, but that's really not necessary.

So gather up the kids and go for a walk in the woods. Just tell their mom you're going hiking. She doesn't need to know the real purpose. Practice, practice, practice. Once they have a little success, don't worry; it's all the reinforcement they need. It's like the first time you really connect with a golf ball. You feel the satisfaction and you want to do it again. Once they have it mastered, your challenge will shift back into the familiar parent role of preventing them from doing it when you don't want them to.

The benefit for you is that you never have to listen to your children struggling with a nasty bit of mucous when they're feeling badly. It need never keep them awake at night. All you need are a couple of simple phrases.

"Honey, can you give me and Junior a minute alone together, I think I can help em out." and "Now Junior, remember what daddy taught you that day in the woods?"

The Mask

How am I doing?
It's hard to tell.
I wear a mask
It's hidden well.

Am I in pain?
You never know,
It could just be
I'm feeling low.

While many things
Could make me sad,
Please don't assume
That all is bad.

The smile you see
The laugh apparent,
Might be the mask
Clear, transparent.

How am I doing?
I cannot ask,
For in the mirror
I see the mask

It's not deception
There is no lie
From my face
You cannot pry

We're one it seems
Not sure it matters,
My greatest fear:
The mask: it shatters

Strange Phone Call

Terry: Hi. I'm calling from the Pediatric Oncology Clinic in Edmonton. We're setting up a chart for Spencer and I have a few blanks in the chart that I need to fill in.

Steve: Oh. OK. No problem. How can I help you out?

Terry: Well uhm. I guess will start with Spencer's medical number. Do you have his medical number?

Steve:

Terry: Uh. That's OK. I called this number; it just said "work" number. I thought it might be his mother's work number. We can fill this in when he arrives in Edmonton or I could talk to his mother another time.

Steve: Terry, you might hold some kind of stereotype that the mothers are the organized ones who keep track of all the important details and are most closely connected with their child's care. I just want to let you know that those kinds of stereotypes often exist for a reason. In this case, the stereotype is very accurate

Terry: Oh. OK. Well we can do this with mom at a later point in time.

Steve: No. No. I'm just giving you a hard time. I'm sure I can help you with the rest, I just don't have his medical number handy. What other blanks do you need to fill in?

Terry: I need his religion.

Steve: Are you familiar with "Yugio"

Terry: Yugio? That's the religion?

Steve: Never mind. Just put down "Pokemon"

Terry: Pokemon for the religion?

Steve: That would be fine.

Terry: Ahh. Ummh.

Steve: I can see you are struggling with this. Why don't you just put down "none".

Terry: OK. None it is. Now I've never met you. This might be obvious if we had met, but could you tell me his aboriginal status?

Steve: Hmm.. Let's just go with "none" again. "None" would seem to be a winner here.

Terry: OK. Good.

Steve So he has no religion and no aboriginal status. Tell me, if he was a good Catholic Cree would you treat him any differently?

Terry: Laughter. Oh no. I hate them all the same... That's the joke my husband always makes.

Steve: Oh good.

Terry: OK. Well go through your address here. Do you live at ....?

Steve: Completely correct.

Terry: His family doctor?

Steve Not really relevant. He hasn't seen him in a year.

Terry: We have to have his family Dr.

Steve: OK. It's Horvat. H-O-R-V-A-T

Terry: OK. I think we can deal with anything else when you get here. Thanks,

Steve: Terry. Wait. Hang on. Can you tell me why we are coming there?

Terry: I'm not on the medical staff, so I can't really comment. We are a pediatric oncology clinic. We have lots of kids who come here for all kinds of treatment.

Steve: Are you saying my son might have cancer?

Terry: Ummm. I can get someone from the nursing staff to talk to you right away.

Steve: It's OK. I know my son has cancer. He was diagnosed with neuroblastoma. I just don't understand why we need to come to your clinic and when we're having the MIBG over at Cross.

Terry: OK since you volunteered the information, I can tell you more. You're coming for a routine clinical visit. We've got you down for 9:30 for bloodwork and you meet one of the oncologists. 11:30 you're at Cross and then you have a follow up scan the next day

Steve: Oh. OK our flight doesn't come in until 9:30 so we won't make the appointment on time.

Terry: No problem, if you're late they'll still see you.

Steve: We might be so late we might have to go straight to Cross and not see you.

Terry: That's OK we can set it up the next day.

Steve: He'll be radioactive. I hope that's not a problem for you.

Terry: I'm sure we've dealt with that before.

Steve: And another thing. We don't want bloodwork. Spencer had his bloodwork done yesterday and you should get those results rather than poking my kid full of holes.

Terry: No problem. You can bring that up with the oncologist. So we're all set. I look forward to meeting you. We'll see you on Tuesday then.

Steve: No you won't.

Terry: What? I'm sorry I must have misunderstood.

Steve: Oh. I just mean you won't meet me personally. Tracey and Spencer will see you on Tuesday. I won't be traveling to Edmonton.

Terry: Really. OK. We're just a short drive from BC. I would have thought you would come for something as important as this.

Steve: Terry, it's only a bit of cancer treatment not something really important. I have better things to do.

Terry: Oh. OK then. Well we look forward to seeing Tracey and Spencer.

The Monster

There's a monster. It lives in our house.

It moved in a long time ago. It must have been hiding in the walls because we didn't notice him for the longest time. But it was there. It's the funniest thing because I never really believed in monsters. I thought they were the stuff of fairy tales. Imaginary beasts that people made up to explain their fears. They weren't real though. Were they?

But now I know they are real. The thing about monsters is they're not just big and scary and with sharp teeth. Bears are big and scary with sharp teeth, but they're not monsters. The difference is that the monster has a malevolent streak. It's not there because it wants to eat your garbage; it's there because it means to do you harm.
Disney got it all wrong in Monsters Inc. Don't believe it. That's all imaginary. Those kinds of cute cuddly monsters don't exist. Steven King has it right.

The monster sometimes comes into our room at night and slithers underneath the bed. Its hot breath comes right through the mattress. It leaves me sweating, scared, unable to sleep. And then a chill settle's in like the window was left open on a January night.

We’ve tried to kill it a dozen times. Sometimes it seems like we’re winning, but still it won’t die. And even if we kill it, I have this terrible feeling it will come back from the dead like just like in the sequel to a bad horror movie.

It's a clever beast and follows us wherever we go. There’s no escape. We can never see it because it hides in the shadows, but it’s always there and has ways of making its presence known. We can’t live a normal life.

When we got the dog, we thought maybe he would scare the monster away. The dog is smart and brave, but somehow he doesn't see the monster. The monster, though, is keeping its distance. But somehow I think it might be smarter than the dog and just waiting for its moment.

Try to explain a monster to your friends. They can hear what we’re saying, but they don’t quite believe us. We still have all of our body parts, and none of us has quite gone insane. They’ve never seen the monster even though they’ve been to the house. Still they get the sense that something isn’t quite right. Some of them keep their distance. Now we just smile and say, "Oh the monster...he’s gone back inside the wall. We’re doing fine."

Sometimes our monster doesn't seem so scary. On a sunny day, when the kids run in the park laughing and playing, we forget that it’s back there waiting for us. You have to forget for a while, or it will get inside your mind and drive you over the edge.

There are professionals who know how to deal with monsters. Ordinary folks never meet them other than on a social basis. We feel better when we're with the professionals. They seem to know what they're doing. But at night when we are home alone, there is just us... and the monster. The chill returns.

There's a monster. It lives in our house. It lives in our boy.

Phase I Clinical Trial

N-BLAST List 2003 May 30; 1-12

High Dose PWD Therapy in Stage IV Neuroblastoma
Dolling SD, Scupper DG
Department of Oncological Humour
Institute of Applied Irrelevancies, Canada

Cognitive inactivity, coupled with a perpetual state of clinical involvement in Neuroblastoma patients, post stem cell transplant, is associated with a high degree of negative lifestyle progression and poor prognostic outlook. In this work, a time scaled dosimetry of Portuguese Water Dog (PWD) is introduced in conjunction with conventional cis retonic acid and low dose I-131 mIBG therapies. A randomized sample (1) of the Institute's population of stage IV patients (1) was selected for the trial. Pre-screening was implemented to ensure proclivity for canine fecal collection. In addition, clinical personnel were screened to ensure adequate hydration, nutritional and sanitation needs of the PWD modality could be assured. In this study, a scaled dose PWD therapy post transplant, was selected over the fixed high dose continuous therapy throughout the COG A3973 protocol. The pharmacological PWD preparation was selected at the 8 week post maternal decoupling stage and administered in 1.5 kg dose. Temporal scaling of the dose will continue through an interval of approximately 50 weeks whereupon terminal dosimetry in the 18 to 20 kg range will be achieved. This is the first report on early results in a longitudinal study that is expected to last about 12 years. Early results appear to be extremely promising. Patient interaction has been prolific. Capability for patient/modality tensile retention has been demonstrated. Spherical object retrieval on command is routinely observed. Linear oscillation of the forepaw is in development. Subject happiness level exceeds the control group. It must be stressed that this research is preliminary. Early toxic contraindications would appear to include mechanical disintegral involvement of the vertical window blinds and a propensity for locational misplacement with salival involvement in all forms of footwear.

To Whom It May Concern:

I don't want to strike a lot of controversy, or carry on a dialogue that is not appropriate for this forum. Let's just say that You and I havenever talked before, and there are a few things I would like to get off my chest. Obviously, this is a bit of strange way to reach You, but there are some really thoughtful people here with closer connections than me who might be able to pass along the message if it doesn't get there by a more direct route. And let's be frank, I don't know where "there" is or exactly who You are. But I think the things I want to say may be relevant in any case.

First of all, I have to say I'm a little bit upset about this whole Neuroblastoma thing. There has been a lot of suffering and pain and misery. It's a horrible thing to subject a child to, and it is really not pleasant for the rest of the family. The fear and anxiety are ever present. I would have much rather have had the heart ripped out of my body than have this happen to Spencer. I don't think it really matters whether You had any direct involvement, it happened on Your watch, and I am angry about that.

Enough said. Now for the more important stuff. There are actually a few things for which I am extremely grateful. Things that in the everyday course of life, I didn't think enough about or have a deep enough appreciation for.

Many mornings now, I wake up and see my boys sleeping peacefully and think it's a glorious day just because they are alive and here. Thanks.

The strength, caring, and love of Tracey is profound beyond words. For that, I am hugely appreciative. Thanks.

I don't really care if the grass gets mowed, or the meeting gets attended, or the car gets washed. It's a whole lot easier to select the little things which when added together are important in the grand scheme and not sweat stuff that really doesn't matter. And careers, money, nice cars and the like now rank among the small stuff for me. Thanks.

I enjoy it sometimes when the boys argue, carry on, or get excessively silly. It's a wonderful thing to have them so full of life and vitality. I have to work harder to get annoyed. Thanks.

I can listen to someone pour their heart out about the miseries and pains of everyday life, feel for them and have comforting words, but not be at all alarmed knowing what incredible capacity ordinary people have to cope with everyday misfortune. Thanks.

Friends and family have amazing capacity for love and caring and concern that you just don't necessarily see or appreciate every day. I do now. Thanks.

When life is at it's most unbalanced and extreme, somehow it's possible to gain a new sense of perspective which puts you in a better balance than you ever had before. Bizarre. Thanks.

And finally, thank you for giving me the voice to talk about things like this, that I never would have talked about before. I feel better now. And if You are there and listening, we would sure appreciate a good outcome for Spencer.

Thanks,
Steve

Disturbed Child

People always ask how Spencer's brother Foster is coping. The truth is there are signs of stress. He’s had a lot of separation from Mom and Dad. On a good day, he gets an hour with one or the other of us, seldom both. Over time, it is starting to have an impact.

You notice subtle things in behavior. For example, his eating habits continue to diverge from the normal four year old diet. The other night I came home and our friend Donna said that Foster didn’t touch the chicken fingers and fries that were served for dinner. He did, however have three platefuls of sushi – enough for an adult. Is this normal for a four year old? I don’t know. Sometimes people tell me he didn’t eat much for dinner. Sometimes they can’t believe how much food he can pack in. Sometimes he has a cookie for a bedtime snack. Sometimes he likes green olives and a couple of crabsticks.

But hey, that’s just diet. Doesn’t indicate your kid has any problems - maybe just sophisticated tastes. I could live with that. But there are other signs. More disturbing signs. For quite a while we would put him to bed all nicely dressed up in his pajamas. You would go to check on him in the middle of the night and he would be buck-naked. He would come down in the morning with his pajamas on again. His explanation: “I just like to sleep like Dad does.” Now that’s disturbing. The trend does seem to have eased now that fall weather is here. Maybe he just has sophisticated sense of thermal control.

Ah, but there are other cracks. Real signs that deep trouble is lurking under the mop of blonde hair. Take for instance, his unnatural fascination with his Uncle John. It’s probably due to too much separation from Dad. John has become the reference standard against which all things are measured. “Daddy, who’s bigger that kid or Uncle Johnny?” “Daddy who’s larger, your truck or Uncle Johnny?” “Is Uncle Johnny bigger than Canada?”

And then at night as I tuck him into bed, “Daddy, who’s stronger, you or Uncle Johnny”. Oh, oh. This one needs a careful answer. Better not fumble it or it could have lasting implications. Johnny has about a 3-inch height advantage and though we may have roughly the same displacement, let’s just say that he has a higher density distribution.

“Well Foster… Uncle Johnny is a pretty big guy, but Daddy is pretty mean and tough.” There that ought to do it. No lies. No lifelong hang-ups about the inadequacy of his father.

“Daddy, I think Uncle Johnny is stronger.”

“Oh, and why would you think that Foster?”

“Because he’s an engineer.”

So all that is just a sign that he is well bonded with his uncle. Nothing to worry about. Well here’s one that convinces me it’s about time to bring Spencer home and get the family life back to normal. This one will have the Freudians frothing at the mouth. Tracey puts Foster to bed last night. A little while later she walks into the room. She hears him muttering away. On closer examination it seems as though he’s playing with his stuffed animals.

“Girl… Girl… Girl…” He is picking each one up, turning it over and doing a thorough inspection. “Girl... Girl...”

“What are you doing Foster?”

“Just checking Mom. They’re all girls”

Now surely that’s conclusive proof. Tell me that a normal, well-adjusted child, with no emotional problems would go and pull the penis off of each and every one of his teddy bears!

Termination Notice

(Posted on Spencer's hospital door)

Dear Consulting Staff:

Team Spencer hereby serves notice under the terms of the agreement that the need for your services in the matter of the stem cell rescue of Spencer is hereby no longer required. Termination of said services will take effect October 21st, 2002.

Sorry to be so formal, but you know how these things are. If I don’t get the wording right, some discharge lawyer will deem the termination to be non-binding and we will have to keep the boy here and practice NG tube insertions for a couple of weeks. It’s important to get it right.

Team Spencer would like to take a moment to commend you on your level of productivity and professionalism throughout this consulting engagement. Clearly you have handled similar such challenges in the past, and your experience and dedication to the task have yielded exceptional results for the organization.

We are pleased in particular with the recent productivity improvements in the plant as indicated by your daily metrics. The reduction in turnover can be directly attributed to your initiatives. The morale improvements and increased plant output are a sign of your good management.

We are reviewing your report, Fuel Mix Options for the Plant; A Post Stem Cell Report and are fairly confident that the regular management team will be able to undergo the conversion without further training. Just this evening, in fact, a bunker load of roast beef, potatoes and gravy, and broccoli and cheese sauce fueled an entire shift’s production. A full time conversion seems only days away.

We will continue to use your organization’s services as required. In particular, your outpatient clinical management program will be of interest. Hopefully, you have taken us past the point of need for your 3B program, but should the need arise in the future we will be happy to reengage your services there.

As always, we stand ready to act as a reference as you solicit new customers. Feel free to use our name in your promotional materials.


With Sincere Thanks,

(Signed Steve)


On Behalf of Team Spencer

Stem Cell Transplant: A Business Perspective

From: Steve, October 8, 2002

For those of you who missed the phone message yesterday (604-720-xxxx), we did manage to get Spencer's stem cells back in his body. This is a very good thing. There is always that uncomfortable interval after they have given your child high enough doses of chemotherapy to kill him and before the time they have injected the stem cells to save him. Thankfully, Murphy didn't show up anywhere in the process. Nobody had to deliver the message "We're still trying to find Spencer's stem cells, and we're hopeful, but it is not too early to start looking for an emergency match among registered bone marrow donors..."

I'm not exactly sure what goes on in the mind of a stem cell. Somehow they are able to make a market assessment about the opportunities available among red blood cells, white bloods cells, platelets and bone marrow, pick the area where they will yield the highest market return and then go about getting themselves the proper training to make something of themselves. And given that Spencer produced millions and millions of stem cells, the competition must be fairly fierce. Right now there is some kind of candidate selection process going on to fill the vacancies in the available bone marrow slots. I'm not sure I would be so willing to step up given the past track record of the employer - it's only been a week since he laid-off virtually the entire staff! I guess unemployment is pretty nasty since it's not like you get to go fishing or anything. They just leave you frozen in a bag. In any case, despite Spencer's bad public image within the cellular community, I'm pretty confident that he'll be able to fill all the vacancies with highly qualified individuals.

Now once all the organizational staffing issues are resolved and an appropriate orientation and training period had passed, the next big challenge is to get on with the job of production. White blood cells are the only ones that Spencer hasn't been able to effectively outsource from third party vendors. I think it has something to do with the proprietary nature of the work they do. You can easily write a spec for red blood cells and tender it to the lowest bidder. There is no problem getting platelets from a temp agency to cover your clotting shortfalls. However, you definitely don't want to bring in a bunch of rent-a-cop white blood cells to look after organizational security. They'll almost certainly botch the job and let some bad guy virus come in and start running the show. So that's the first job of the new bone marrow organization.

The new bone marrow, full of energy and frankly a little bit cocky after having made it through stem cell grad school, is eager to prove itself. They'll be pretty busy for the next couple of weeks. Gradually, capacity will increase and the factory will be able to ramp up the production lines for red cells and platelets to cover losses from turnover and early retirement. At some point internal production will be able to keep pace with overall demand, and the need for outsourcing will stop. That's when Spencer will get to go home again.

Right now he's kind of dependent on the staff at Children's. They're kind of like one of these high priced consulting firms, a KPMG for the body in crisis. The Oncologist is kind of like a Managing Partner who does high level client interaction and directs the efforts of the rest of the team. The Nurses are sort of like Account Managers who listen to the clients needs and provide advice and direction to the rest of the team and feedback for the client. Then there are a bunch of tests protocols and drugs and so on that do the day to day work of organizational analysis, planning, implementation and so on. In short you end up with a bunch of paper and it costs a ton of money. Everybody is really happy when the whole thing is running smoothly again and you can end the engagement with the high priced firm.

Enough about the process. I'm sure you're wondering just how the boy is doing. Right now the balance sheet is in bad shape, revenues are down, but marketing and PR are still doing a good job, so you would never know that things are in crisis. (He's smiling, happy, and generally doing what boys do who aren't allowed to actually touch the floor let alone leave the room - video games, painting, math homework etc.) It looks like market conditions are such that we should be able to float a bond issue to get back to a position of liquidity in the medium term, and management has enacted austerity measures to get through the short term. (He'll probably have some ups and downs including nasty mouth sores for which they will give him morphine. A return to profitability with the resultant impact on shareholder value can be expected this fiscal period. (If all goes well he'll be back in good shape in a couple of weeks.)

Sorry to bog you down in all that medical techno mumbo jumbo. If you like, I can try and put this in non-medical terms to explain it better?


From: Steve, October 9

Last night we had a bit of labour unrest. As it turns out about three quarters of the platelets just up and quit their jobs and walked out. They were complaining of poor working conditions - particularly the high heat in the plant.

Those consultants were on top of their game though. I must say there is a good reason why we pay them the big bucks. They brought in some Tylenol to help cool the place down as kind of a short-term fix to make the working conditions bearable. A little bit of Tobermyacin is going to control the heat at source and will hopefully stick as a longer-term fix. Having restored order to the place they went out and brought in a whole new workforce of platelets. As I understand it, they didn't even ask the old ones back - just brought in replacement workers and they're getting the job done. It's always better to have consultants do your dirty work - helps the workers from getting upset with management.

I can't say that was the end of it though. Apparently there are others in the plant who are disgruntled beyond words. They resorted to sabotage. It happened at 3:30am. They struck without warning and did their evil deeds undetected. Their target was the primary fuel pipe coming into the plant. They just drove the thing right back out through Spencer's nose and that was that. Spencer was OK and undamaged in the incident. He woke up from the fuel soaked sheets and woke me up to show me the pipe hanging down. I thought the problem was with the pipeline company, but then he showed me that it wasn't even going into the plant and I knew we had an internal problem. The consultants were going to arrange for a new installation this afternoon. It's always terribly disruptive to productivity doing a new primary installation like that.

Things are pretty stable now, but the red blood cells were apparently going to stage a rally this afternoon. My guess is that they are organizing a walkout for tomorrow. No worries, we're ready to bring in replacements for them when the time comes.

The only other thing is that cleaning hasn't been doing their job. There has been a back up of material in the ventilation system. Doesn't sound too serious. They are going to do a chest x-ray just to be sure.

And that's that. The only other tidbits are related to stakeholder welfare and corporate governance. The board of directors decided they weren't gonna put up with the "chairbed" any more. It's neither a decent chair nor a decent bed. So the boardroom now has an extra cushy Lazyboy recliner. Now given the mood of the investment community, the board decided it was best to fund it themselves and donate the chair rather than screw over some stockholders. My guess is they'll get half of it back at tax time.

From: Steve, Oct 10

I must say things at the plant are still chaotic if somewhat predictable.

As expected, the red blood cells did have a rally yesterday. About 25% of them just decided they had had enough and took the early retirement package. HR was bringing in a bunch of new recruits this afternoon.

The new fuel pipe was installed with much less trouble then the first installation. They did the chest x-ray and verified that the fuel pipe position and determined that there was no problem with the ventilation system. The cleaners aren't doing their job, but they haven't messed anything up.

Nevertheless, we pretty much lost thermal control overnight. It hit 39 degrees and stuck there in spite of repeated introduction of Tylenol. The consultants have assured us that this is not a big deal and is pretty normal for an organization going through what we are. They've seen it all before and there is nothing to indicate that we are going to lose a lot of customers or face insolvency or anything like that. Just hold the course, keep paying them the big bucks, and everything will be fine.

Productivity is way down. Until the new red blood recruits get busy, Spencer just doesn't have much energy to do anything. It's expected that productivity should improve tonight.


Steve


PS: I think it's probably time to start a pool on what Spencer's blood counts will be each day. We can all make bets on what we think the counts will be the next day.

For your reference, today's counts are:

White blood cells: < 0.1
Hemoglobin: 60
Platelets: 44
ANC: 0

Now, just so we have full disclosure - remember the Hemoglobin number is pre-transfusion - bet on it increasing. Platelets are post yesterday's transfusion - bet on it dropping. Only fools would gamble on a change to WBC or ANC this early in the game. Get your bets in!

From: Steve Oct 11

OK. So evidently there is some problem with placing bets on the daily blood counts. Not one person submitted their wager for the day. I didn't even get any personal email on the issue. To help me understand where I've gone wrong, please indicate your choices from the list below. Respond with all that apply:

1) I'm keen on betting on the counts, I just thought I stand by for a couple days, observe the trends and then swoop in for the big jackpot.

2) I really don't have time for this sort of thing.

3) The prospect of betting on a child's blood counts, given the grave nature of the issue, is so abhorrent that I am beyond words.

4) Steve, I am seriously worried about your mental and emotional well being. Your reactions to your family situation are inappropriate and you should seek professional counseling.

5) I find this amusing and plan on sitting back as a passive observer. Keep going.

Thanks for your feedback!

Steve

From: John, Oct 11

1, 3, 4, 5.

John

From: Steve

Thank you John. A little biting. Somewhat contradictory. I do, however, very much appreciate the frank feedback.

Others?

Steve

From: Vicki

Biting? Maybe. Contradictory? Probably. I thought he just spends too much
time listening to Coco count.

Or maybe those were his predictions for the pool.

It might help to know just exactly what is involved in the big jackpot. You
know, tour the dream house before you fork over the big bucks for the
ticket; get your fingerprints all over the car on display in the mall;
picture all of the cash in an impressive metal briefcase -- that sort of
thing.

Cheers,
Vicki (who ain't gonna bet if we can't bet on the eosinophils - why do the
neutrophils get all of the glory?)

From: Steve

I see. So Vicki would like to drag us through a little lesson in histology rather than risk leaping into a gambling enterprise that might actually be discriminatory to a few of the leukocytes. I understand that neutrophils outnumber the eosiniphils by a ten to one margin. It's quite natural that you want to make sure that they are able to assert some minority rights here.

We need to be clear on something. First of all Spencer does not favour neutrophils any more than he favours lymphocytes. He is an equal opportunity employer. Now it just may happen that he has more neutrophils than any of the other white blood cells types, but that is simply a reflection of the security needs of the organization. This is definitely not a racial issue. Remember the stem cells have a choice as to whether they want to be a monocyte or hemoglobin or whatever when they grow up.

Now the Managing Partner sets the boundary condition that Spencer's Absolute Neutrophil Count must be greater than 0.5 for two consecutive days before he can be discharged. Now she doesn't actually care any more about neutrophils than she does about eosinophils. It's just easier to count the neutrophils and they always appear in about the same ratio. So by asserting that ANC is better than 0.5 there is an implicit directive that eosinophils will be at an appropriate level as well.

Now if Human Resources kept decent records, we could use whatever measure we like. We could bet on Basophils if we wanted to! But reality is that were not pulling this stuff out of a database. Somebody actually has to walk the plant floor and see who shows up for work each day. There are way too many employees to count them all so its done on a sampling basis. I know I know. Sounds totally inhuman. All the cells are just a number to us and we don't care about them as individuals. Blah, blah, blah. Well it's time to face reality. The truth is they're all just headcount and we don't actually care about the individuals. There I said it. We do care about them as groups though and do our best to keep the overall working conditions at a reasonable level. Anyway I'm off topic. So the consultant swings through the plant and does a rough estimate of the neutrophils because there are more of them and they are easy to count. They figure out the magnitude of their production/hiring challenge then produce the white blood cells according to the usual production mix.

So it's not that the neutrophils get all the glory. It's simply a money issue. If we want to pay the big bucks to have the eosonphils counted, believe me they are more than willing to do it. We will just end up turning over a portion of the prize pool to the consultants and that means lower jackpots for the players.

So let's submit our edollar and place our bets for tomorrow. Lowest total deviation wins. ANC and WBC are multiplied by 10. We'll put 50% of the take in Spencer's Disneyland fund and pay out 50% to the daily winner. A tie is a non winner and gets carried over to the next draw. Here are the real numbers for the week: (spreadsheet attached)


Ron:

6)

Poetry

Poetry

From: Rohn, Aug 22, 2002

Everybody

Now that phase 1 of the Go-Kart is done, it requires some sort of literary summary. This is not a one 'ohn job. The summary should be contributions from everybody and, of course, must be poetry. The best poetry is written with rules that must be adhered to, sometimes quite bizarre and sometimes quite standard like the Haiku 5-7-5 rule. So, of course, we will abandon rules. One rule that you might want to adhere to is making it rhyme. In my opinion, if it's poetry and it doesn't rhyme, it's crap (yeah I know). So if limericks are your specialty or you just can't get enough Cat in the Hat, put in an effort. In the end we can cut and paste them together into a collage of sorts. Spencer may want to read it some day, so you may want to watch your language (John B.), but I feel Spencer has earned the right to know and use a few swear words (I'm just his uncle). John B. please try to forget that there are many words that rhyme with weenie.

Rohn

From Steve: Aug 23

Last I checked, this was a go kart forum. I'm still allowed to write in prose, yes?

Imagine the scene. There are about a dozen friends and neighbours, some adults, some children standing at the bottom of the driveway. Daylight is slowly fading away. Headlights, marker lights, and taillights are now taking on certain brilliance. It's time to put the kart away for the day.

Dad, brilliant guy that he is, thinking that it would be a shame to have to push the kart up the driveway to overcome the slipping belt problem. Surely if Spencer does a couple laps around the gently sloped cul de sac and hits the driveway at speed just as he comes off the bottom of the turn, he will have enough momentum to make it up the driveway? Isn't that how they send spacecraft outside the solar system? Yeah that'll work.

The last of his friends takes her turn and Spencer buckles in and puts his helmet on. Instructions are given on the general theory and off he goes. Whoops. There's Papa at the bottom of the driveway with his cane. "Go around again Spencer! Don't go for the driveway!" Spencer goes around again.

Papa shuffles out of the way and everything looks clear. Spencer is coming around again at speed. He doesn't even think about braking. He's going for it.

Just as he is coming around the bottom there are about a dozen people simultaneously and instantaneously processing a number of thoughts. He does realize that he has to steer around the Pathfinder? He knows he has to make a hard left at the top followed by a hard right to stuff it into that little spot next to Mom's Volkswagen?

As the kart hits the curb, it's rigid frame without suspension drives the front wheels almost straight vertically. The front end of the car is quite noticeably airborne. A funny thing happens at that point. The steering force is noticeably weaker when the wheels aren't on the ground they really don't turn the kart that much. Just as the front wheels touch down the back ones hit and they become airborne.

A dozen mouths hang open. Dad begins to process that other thought, "Maybe this wasn't such a good idea."

The trajectory brings the kart along a path parallel to the Pathfinder. Still moving at nearly top speed, there are easily four inches to spare as if flies by. Thank goodness the uncles built the thing with enough mass that the curb barely affects the path the kart was on. As long as Spencer had it lined up right, he was going to be OK. Which of course brought us to the next problem. The back of the Volkswagen loomed large. It was a direct shot.

What saved the day was clearly the racing suit expertly stitched by Aunt Vicki/Leanne (can't remember who did what to whom). It's the kind of cool suit that gives a driver that invincible feeling in a moment of pressure.

A hard tug left. A hard tug right. The brakes jammed on. Small puff of smoke and one go-kart expertly parked in its spot.

A kid ready for any challenge unbuckles and gets out of his kart.

A dozen mouths still hang open.

Risk has been recalibrated.

From: Ron

Nobody does suspense like you do Steve. Now I'm afraid your going to have to make it rhyme.

From: Rob

My thoughts exactly. With a kinda hip-hop iambic pentameter suffused with just a bit of reggae.

From: Steve

Just a couple of comments:

Ron, that should be "you're" rather than "your".

I don't have to make it rhyme. Haiku is still an option right? Somebody send me the rules and I'll make it haiku.

From: Vicki

Haiku is a 17 syllable verse consisting of 3 metrical units of 5, 7, and 5 syllables. The purists among us will note that English allows a lot more to be conveyed in 17 syllables than can be done in Japanese, and that 11 syllables is more suitable approximation of the 17 Japanese in order to convey the same brevity and fragmentation. In this case 3-5-3 works nicely.

From: Steve

The Parking Job

A Brave Boy
He Drives Determined
All Are Awed


There. I think that about captures it. Was any of the suspense lost?

From: Rob

The Driver's Dad

Very odd
We enjoy his words
I like cheese

From: Steve

I Like Cheese

Three Small Words
Meet The Requirement
No Meaning

From: Rob

Requirement

One Too Many
What You May Ask Me?
Syllables

From: Steve

Haiku Warfare

Re-quire-ment
Syllables Just Right
I Like Cheese

Rob:

Losing the battle

Webster's is
A dictionary
It says three

Ron:

Brother who
never makes mistake
take flyin' leap

„« Ron, that should be "you're" rather than "your".

Rob:

Helping Steve

Flyin' is not
a one syllable
word Bro Rohn

Ron:

Flyin' is. Flying isn't. Next time read it allowed.

Rob:

I did. Slowly. I got two.

I'm a little worried about your mental state right now, Rohn, so I'll leave
the grammar correction on your most recent submission to Steve.

I also came up with a haiku last night that I wanted to post........


John Rohn John
Go Kart for Spencer
Three Great Men

Ron:

>I did. Slowly. I got two.

Must be your regional accent. Where are you from?

>I'm a little worried about your mental state right now, Rohn,

Thanks for the concern.

>so I'll leave
>the grammar correction on your most recent submission to Steve.

I don't think the fish are biting.

>I also came up with a haiku last night that I wanted to post........

>John Rohn John
>Go Kart for Spencer
>Three Great Men

I've put it in the collection. Hey John, you've got top billing!

Keep 'em coming.

Steve:

The Fish

Quiet Fish
Bite When Allowed, Though
Not Aloud

Rob:

Outstanding

Steve:

Haiku Butchery

Elegant
Simple Form, Done
As Roadkill

Rob:

Critique

Simple Form
Unless I'm Confused
Three not Four

Steve:

The Critic

Now Critic
Truly Understands
Butchery
Rob:

The Butcher

Hack and Slash
Extraordinary
An Art Form?

Ron:

Crap

Pleases You?
If yes then it must
Qualify

Bone Scan

Today is Tuesday. So it must be bone scan day. This is a routine test, but with the potential for outcomes that are anything but routine, we don't treat it lightly. Remember the second bone scan? That's the one I treated as routine. Then I came home that night and Tracey had already taken the boys for passport photos because it looked like things were pretty bad. Disneyworld would be a rush job. And then two days later, we find out everything is OK. It was a wake up call.

From then on we had two new rules: 1) Whenever there is a test, hope for the best, but be prepared for the worst - nothing is routine. & 2) Amateur radiology is a highly entertaining sport, but in our family, it must be practiced with great care.

Spencer was injected with the preferred isotope of whatever at nine this morning. I joined them at the hospital around 11:00am for the scan. The scanner is a truly impressive machine. Children's was the first in Canada to take delivery of this particular model with the built in DVD player. Spencer gets strapped in to a rolling table while two large passive detection arrays slowly work their way down his body, following the terrain like cruise missiles in slow motion. As soon as his head emerged he was able to watch today's preferred video selection - Spiderman.

Now knowing full well that amateur radiology is not something we should engage in, you can't help but let your attention drift from the movie to the display screens over at the operators console. We could tell that things were looking pretty good. No return of those nasty spots on the side of his scull. Nothing glowing bright but the joint areas where new bone mimics neuroblastoma. Nothing to worry about.

Then a few bright spots emerge. The bladder full of isotope of whatchamacallit shines bright. No worries.

And then it came.

Pretty obvious even to us amateurs. At least one, maybe both testicles look fully involved. It'll be a few days before word gets back from the radiologist through the oncologist with the real story. But in the meantime, we just suck it in and wait for the news.

The scan is finished. The tech approaches us. She wants to do one more scan. Of course she does. She can see it too. The radiologist is going to want to have a closer look at the affected area. So much for routine.

She gives me a hospital gown and asks me to take Spencer to get changed. Haven't seen Spencer in a hospital gown in a long time. It's not a comfortable feeling. A little depressing frankly.

We come back and remount the machine. Somehow Spiderman seems more intensely enjoyable rather than irrelevant. I'm not sure why. It's kind of surreal.

The scan progresses. The tech confirms what she suspected.

Radioactive urine dribbles in the underwear.

Unanticipated Go-Kart Performance

I think Spencer always thought of the Go-Kart project as some sort of mechanical exercise which would ultimately yield some sort of object which he would be able to drive around outside. There is a certain pleasure in having control over something which weighs 15 times as much as you do. If you get to go along for the ride all the better. So it was a "good thing" as Martha would say.

I think what Spencer failed to anticipate was just how cool the whole thing is. When you drive a formula one all terrain electric go kart:

1. You get to park in the garage just like Mom.
2. You get to own the street out front and all the neighbors in their cars have to stop and wait for you.
3. People driving by slow down and stop just to look at your wheels.
4. You have your own mechanic who does important things like tension your belts.
5. All the neighbors come out and hang around in awe of your cool machine.
6. All the dad's want to drive it and they walk away with a silly smile when they do.
7. All of your friends treat you with a whole new level of respect.
8. Everybody wants to line up for a drive and you get to pick who does how many laps.
9. That little edge of pity you could hear in people's voices for the last few months has made a definite shift to envy.
10. Everybody wishes they had uncle Ohns just like you.

June 21, 2002

Test Driver Suffers Fall

From: Steve, June 21 8:49am

Wednesday is bath night. There they were in the tub. Foster expressed a desire for some cars to play with while they were in the tub. (Why do you need cars in a bathtub?). The cars were at the top of the stairs.

Spencer, full of energy, jumped out of the tub and ran for the top of the stairs. He thought Foster's cars were downstairs. Wet slippery foot hits the shiny hardwood on the top stair. All the choices have been made. Now it is gravity's turn.

We'll be back with Chapter 2 in a little while. I need to get my morning coffee...

From: John L, 8:50am

Not nice leaving us in suspense. That is Rohn's job. How is Spencer?

John.

From: Steve, 9:03am

Looks like the pot is still filling...

Chapter 2

The cry from Tracey is a strange muted cry, full of terror, but somehow quietly soothing "Spencer!!!"

And then it starts. It seems to go on for a long time. It begins as a slow rumbling. It picks up in tempo and volume as it goes. It's the sound of little bony limbs impacting unyielding varnished birch in an unstoppable cascade.

But it does stop. The stairs only seem to go on forever. Eventually there is the floor, the ultimate absorber of all that kinetic energy. The final sickening thuds of knees elbows and skull.

Coffee should be ready now. Back in a bit...

From: Steve, 9:09am

Rohn certainly introduced the genre to this forum. I give him full credit for it. I didn't mean to take anything away from Rohn. I admire his style and was really just trying to copy him, really as form of flattery.

You're right though. This was wrong and I'll stop now.

From: Debbie, 9:10am

Good Grief Steve!

You're driving me nuts! I haven't had any coffee either, but I need to get
to work in the next block. How is Spencer?


From: Ron, 9:12 am

John

I'll try to call Tracey and get back to you.

Rohn

From: Steve, 9:14am

You won't be able to reach her. She's at the hospital with Spencer...

From: Ron, 9:15am

Just got the answering machine; I'm driving out there.

Rohn

From: Steve, 9:15am

Do you really think I would take you through this horror story if it didn't have a good outcome?

From: Debbie, 9:20am

Steve

Okay, I have to be at work in 10 minutes now, and I'm totally distracted.
Are Tracey and Spencer really at the hospital because of the fall?

Deb

From: Ron, 9:23am

Although brother you are a perfect model of mental stability, we know that you are being tested, and we worry.

Rohn

From: Steve, 9:26am

No. They have a clinic appointment for routine bloodwork. You guys are letting your imaginations get carried away here.

From: Ron, 9:28am

In the words of Hemmingway:

I obscenity in the milk of thy unprintable.

You've got your poor sister worried half to death.

From: Steve, 9:37am

Ah. Fresh coffee.

Chapter 3

There is that convulsive intake of breath that is the precursor to a great sobbing cry. At least there is consciousness. The cry emerges about the same time that Tracey reaches the bottom of the stairs. I run from the family room. Tracey has her arms around Spencer. Her protective instinct is uncanny. "Foster is alone in the bathtub. Look after him."

"Is he OK?" "I don't know"

I run to the top of the stairs. Thank goodness Foster is still sitting in the tub and not engaging in his own slippery dangerous behavior. "Are you finished your bath?" Not yet. His hair is still dry. A turbo hair wash ensues. Foster is lucky he is not bald like Spencer. A quick towel wrap and it's back to Spencer.

Tracey is busy systematically feeling all the bones in his body. Femurs, tibia, ribs everything. It's all checking out. The pupils show equal dilation. The bruising begins. Did he get enough platelets on Monday to stop him from turning purple all over? It will be hours before we know.

Within minutes the boy has recovered and wants to finish his bath. Everything is OK.

This morning Spencer shows me the bruise on his knee. "Look Dad. It's the same colour as Foster's new Gameboy Advance."

From: Ron, 10:01am

Oh good then. Glad he's OK. Boys will be boys. How was your coffee?

From: Steve, 10:19am

Coffee was excellent. I'm now on my second cup.

Really sorry if the suspense exceeded the group's tolerance threshold. It was really a little disconcerting. I thought I might do maybe 5 chapters, but I felt undue pressure to conclude the story quickly. I think the writing suffered as a result.

Did you really mean to obscenity in the milk of my unprintable? I am not really sure what the implications of this are. Does this mean that we are going to have find excuses why we can never be together at family dinners? Or do we both go, but just not talk to each other? Can the boys still exchange birthday gifts? I sense that this is a fairly profound expression of contempt which must permanently alter our relationship, but I am looking to you for guidance on how we proceed from here.

Thanks,

Steve

From: Ron, 10:50am

I don't know; ask Hemmingway. I'm just inserting this crap so that people will think I'm highly literate. I think we should discuss it over beer, and I promise not to obscenity into your beer.

Brother Rohn


From: Steve, 2:41pm

Chapter 4

The injured tissues acted as sponge soaking up free floating platelets. The damaged bone marrow unable to keep up the supply. A routine clinic visit turned out to be anything but routine...

Tracey: "Can you come down to the clinic and look after Spencer while I take Foster to his preschool graduation?" Of course I can. The platelet count came back dangerously low. Another transfusion is required.

We play two player Mario Kart on the Gameboy while we wait for Transfusion Services to bring the yellowy bag of platelets. Spencer consistently completes the time trial in 58 seconds. I start out at a minute seventeen. Gradually I work my way down: a minute fifteen, a minute thirteen, a minute ten. The platelets arrive; the transfusion begins. A minute nine. Spencer gets distracted by the blood pressure pump on his arm. He misses a corner and bogies to 1 minute 2. We are only seconds apart now.

"I am going to play Pokemon now, Dad." as he shuts off Mario Kart.

I was only a race or two away from winning one. I want to rip out his kidneys. Then I realize that I can't rip out his kidneys because his platelets are low. It wouldn't be good for him.

"No problem, Spence. You go ahead and play Pokemon"

May 21, 2002

From Ron:

Steve's message was a little more detailed Sunday night, and if you didn't tune in, it is transcribed here. It gives an idea of how strong Spencer is and what incredible parents he has:

Good evening. It's Sunday night. The boys are in bed. Had a good day today. Spencer had several of his friends stopped by and we went out to have a look at this Go-Kart project that until this point has been a virtual project for Spencer, but today he got to see welded steel and actually got to sit in the seat of the thing. He was a bit overwhelmed by it all but thought it was pretty cool.
Anyway it's been five weeks since this stuff all started and if we look at the last month it's been a big one for Spencer:

4 emergency room visits
4 hospital admissions
2 rounds of chemotherapy
1 blood transfusion
2 times under general anesthesia
1 lumbar puncture
2 bone marrow biopsies
1 tumor biopsy
1 central line insertion
1 chest xray
1 ultrasound
1 CT scan
A kidney function test
1 MIGB ... still don't know what that stands for
A bone scan
2 echocardiograms
A hearing test
Had his temperature and blood pressure taken about 200 times
30 blood tests
1 fevered neutropenia
1 major allergic reaction
3 encephalon insertions
12 pokes
1 bald head

and he's probably spent half his time staying in the hospital, and you know what? He's one tough kid. He's doing great; the smiles are more common than the tears, and the good days outnumber the bad days. I think it really helps that all of his friends and family and our colleagues and what not are all so supportive and we thank you for that and we're doing good. In spite of everything that has happened, you know what? We are only just beginning. We've got a long way to go and we're up for it and we're doing good. Thanks for calling.

Nagging Question

Since diagnosis, the changes for Spencer have been quite dramatic. You can=t go through six rounds of chemotherapy, a stem cell transplant, major surgery and six months in and out of the hospital without it having a fairly profound effect. He is a lot tougher and has aged well beyond the six months accounted for by the passage of time. Nevertheless, he is still very much the wonderful boy that he was when this all started.

Now for me, the changes have been a little more subtle. OK, well some not so subtle. The coloured Mohawk for example, perhaps indicated a sudden and dramatic shift, but it quickly gave way to a more socially acceptable sheen that is sported by a broad cross section of society with or without overactive testosterone.

Now since I was messing with the hair, the little goatee and mustache seemed like a fine addition. Piercings were a fairly natural follow-on contemplation, though I could never quite decide on which ones to get. Vicki's suggestion that I just get them "all" seemed like a good idea, but once I discovered what "all" truly entailed, fear of pain won out over curiosity.

Then there was the whole weight thing. Spencer would have a round of chemotherapy. He would shed a few kilos. The family diet would adjust so that just about everything included a cup of whipped cream. He would put on a few kilos; I would put on a few kilos. He would have another round and loose a few kilos; I wouldn=t. Another fat filled frolic and he puts on a few kilos: I put on a few kilos etc. The ratchet effect has left me at all time high for body mass.

The next bit is a little sensitive, but would really be obvious to anyone who cared to think about it. You see, the only time Tracey and I actually see each other any more is when we change shifts at the hospital. There=s really no longer any private moments if you know what I mean.

But she is a sweetheart. Just the other day, she was thinking of me and brought me back some slip on shoes. They're the perfect thing for when you=re up ten times a night in the hospital and you can=t actually touch the floor. My immediate reaction was, "These are girlie shoes. I can't wear girlie shoes!" And then I tried them on. Turns out they are the most comfortable shoes I've ever had. I love them.

So none of these things are terribly alarming individually. Collectively though, you add it all up and it's a little scary. You've got a man drifting into middle age who starts shaving his head bald, grows a beard, puts on 20 pounds, starts wearing women=s shoes, and stops having sex with his wife. What does it all add up to? That's right. Sounds like a classic case when you view it all with an objective sense of detachment.

Late onset homosexuality.

Now don't get me wrong. I have no attraction for men, but I=m starting to get a little concerned. There=s this guy who runs the coffee shop downstairs. Bald head, little beard and moustache. Has a voice that runs an octave above normal. I have an idea what his sexual orientation might be. I'm not being judgmental. He seems like a wonderful person. But lately he's been smiling and laughing a lot when I come around. In the past week he's given me two free cups of coffee. I thought it was just because I'm such a good customer, but now I'm starting to wonder.

So generally confident in my sense of self and particularly my own sexuality, I find I now have this nagging question. If I can take a detached look at myself, connect the dots, and draw the obvious (though erroneous) conclusion, what are the rest of you thinking? As my trusted friends and family, I look forward to your frank feedback.

Thanks,

Steve

Informed Consent

By now you are used to the familiar style. Deep sense of drama that sucks you along for a page and a bit followed by a quirky twist that tickles the funny bone. This isn't one of those, and if that is what you are hoping for, you are likely to be disappointed. Of course there is no way you are going to believe me here at the beginning. You've been fooled before. Fair warning. I had to advise you of the risk before we begin. It's your choice whether or not you care to read on.

Informed consent. It's the foundation of all the non-emergency treatment and diagnostic procedures that they do at the hospital. Whether it was created as the outcome of some enlightened medical care philosophy or it was thrust into the healthcare realm by an overly-zealous legal system doesn't really matter. Inherently, you have the right to choose. Nobody can do anything to your child without your OK. The decisions belong to you.

So how does it all start for the typical cancer family? Some hideous sequence of events brings you to Children's hospital. The first things they need to do are tests. Lots and lots of tests. "Yes we would like to do an ultrasound, x-ray, CT scan, bone scan, more blood tests, and an MIBG to accurately diagnose and stage your child's disease." Yes you get to choose whether or not to subject your child.

Inevitably follows some definitive diagnosis and a treatment protocol. The reams of chemotherapeutic agents all have side effects. "This one causes baldness,that one causes high frequency hearing lossYthis one can affect the kidneys, that one can affect the heart, nausea is a common side effect,etc. etc." You listen with a sense of bewilderment and some amusement. You have a choice but don't even bother to ask about the alternative. You already knew the first time you heard them say the word "cancer".

Depending on what you're up against, surgery might be part of the game. A general anesthesia alone sounds like a bad risk. Once the surgeons fully detail all the potential complications of what might happen when your kid's particular tumor is removed, you sometimes wonder about the benefit of being informed. It doesn't leave you with a sense of comfort, but at least you have the choice.

Then there is the bone marrow or stem cell transplant. Now that meeting is a happy one. Let's contemplate the potential major organ failures: kidney, liver, lungs, bone marrow, and very occasionally, the heart. "Oh and of course there is some risk to the brain but generally not unless the other organs go first. Oh yes and of course there is infection. Your options are bacterial, fungal and viral. They are all potentially lethal, but we do our best." Strangely enough, they don=t even mention hair loss as an adverse side effect on this one. Remind me again of the options please, I have a choice to make.


These are all the impossible choices. Not that it is impossible to choose one way or the other. It just feels impossible to believe you are in the situation to begin with. Impossible to believe that you might eventually reach a point where you might want to consider option B.

But it's not all high-drama. Every day there are a bunch of informed medical decisions to be made. Would he like this medicine in liquid form or can he take a pill? Gravol now or should we wait and try to space it between the ondansetron doses? Platelets are low today, but not real low, we could hold off until tomorrow to transfuse if you can come back to the clinic then? He's losing weight; we should consider an NG tube. And on and on and on.

These are all the meaningless choices. Not meaningless in the sense that they are unimportant. Do a good job on all the day-to-day stuff and it can have a big impact in your child=s comfort and your peace of mind. Make all the wrong choices though, and it won=t likely have any effect on the final outcome. In that sense, they're all meaningless.

So of all the impossible and meaningless choices that you get to make, is control just an illusion? Isn't it just one great train ride you are on and at some point you pass a switch in the track that determines your final destination?

That might be true. But there is one other choice you get to make that does have a lot of meaning. It may or may not affect the destination, but it certainly does affect the ride. It's not even an obvious choice because nobody will ever present it to you. You don't have to sign the consent form. You don=t even have to announce your decision.

You get to choose how miserable you want to be.

OK. Life sucks. Your kid has cancer. But every day you get to choose if you want to be pessimistic or optimistic. You get to choose whether you want to be a victim or your kid's biggest champion. You get to choose if you want to endure the day or have some fun and make the best of it whatever it brings you. You get to choose what example you want to set for your kid. And you get to choose whether you want to teach your kid that he has a choice of whether or not to be miserable.

It's a choice that you actually get to make a dozen times a day in different circumstances. And you don't always have to make the "happy" choice. Sometimes it feels really good to just have a bad moment and tear the head off the incompetent idiot who appears not to have the skills to issue your parking pass.


Once you realize that you actually do have control over just about everything in your life except perhaps the impossible choices and impossible outcomes, it makes the journey a whole lot easier.

You might still be lumbering down the railroad, but if you believe you're flying the space shuttle, you might actually have a better chance of reaching escape velocity. And it's a whole lot more fun to eat astronaut food.

November, 11 2002

A Dark Night on 3B

Since the time of Spencer’s diagnosis there hasn’t been any really bad news. From the outset, you expect a journey with ups and downs - positive progress and setbacks along the way. But really, it’s all been good, so far. Up till now.

Sure, there has been a scare or two. There was the bone scan that Tracey saw that had her pretty much convinced that the cancer was spreading rapidly. She took the kids for passport photos hoping we would have a chance to squeeze in Disneyland. As it turned out, the contrast was just set a little differently in the machine. The doctors were pleased with the scan as they pointed out to us a few days later.

There was round 3 of chemo - that nasty event which henceforth came to be known as “The Vomit Festival.” Truly unpleasant, but nasty as it was, we knew it was just part of the treatment. The 15% of his body weight that he lost came back again in just a few short weeks.

There was that one summary that I did where I actually itemized all the tests, pokes, treatments, etc that Spencer had undergone in a month. It was truly alarming. The numbers have since doubled or tripled or gone up ten times, but they are all just steps on the path.

Last night was different. I should have known it was coming, but somehow we’ve avoided it all this time.

The ominous signs were there earlier in the day. Spencer’s roommate, an eleven-year-old boy, was having a difficult afternoon. He just wanted to stop his chemotherapy and go home. I don’t blame him, at some point you just get fed up. You can bet his mom was having an equally tough day.

Elsewhere in the ward things were much worse. Tracey relayed a story that they asked for the hallways to be cleared for a “private transfer”. A brave kid didn’t make it all the way to a cure.

All the signs were bad.

It happened at 12:20am. I know the time to be accurate. My watch is synchronized with both my GPS and that time signal they have on CBC radio. It wasn’t Spencer’s nurse who came. They sent the most experienced nurse - the leader on the ward – the one who has dealt with all the toughest situations with grace and dignity. This was to be one of her rougher assignments.

She woke me with a smile. The smile was meaningless. That is not to say it wasn’t a genuine smile or had a ring of insincerity. No. The smile is just part of a professional uniform that is worn. It reflects something deep in the character of an oncology nurse that allows them to help people through the most difficult time in their lives. It is genuine. It is sincere. But you know that with the smile and professionalism can come words that can unglue your very soul.

The oncology parent is a different breed as well. They too are professionals. They deal with the meanest roughest stuff that life can possibly throw at you and do it with grace and style as well. They check their kids into hospitals with life threatening infections and their major concern is that they might be too late to fill out the menu for the next day’s meal choices. I am one of those oncology parents. I can be woken from a deep sleep, see the smile, and be mentally prepared in an instant for what follows. My reaction will not be one of shock or horror. The words can slip through my mind and then rip through my gut, but I won’t come unglued – at least visibly.

And then the words came. There was something a little bit strange about the delivery. It came with a bit of a giggle, almost, but not quite, a violation of that professional code that exists between parents and oncology nurses.

“Your snoring…it’s so loud that she can’t sleep,” she says nodding to the mother on the other side of the room. “Do you think you could sleep in the playroom? We’ll come and get you if Spencer wakes up.”

Thursday, October 2, 2003 1:18 AM CDT

This page has just been created. Please check back for additional updates.

Click here to go back to the main page.

----End of History----