Unbroken

I asked for your counsel,

In a time of need I

Sought accommodation.

Expecting your support

I received nothing, but

A petulant reply.

If you truly knew me

You would have seen the scars

That so readily show

The battles I survived.

If you could not see those

It's understandable

You would be unaware

The help I asked of you

Was meant for another

And not at all for me.

David Chiles

March 2023

One Thousand, Two Hundred And Fourteen

Last night, like every other night for the past two and a half years, Rudi took his oral dose of 6-MP, or Mercaptopurine. Three little tablets, each more or less the size of a regular strength Aspirin, 6-MP is known as a purine antagonist, and is classified as an antimetabolite. In simple terms, it disrupts or impairs the ability of cancer cells to reproduce, after the drug is incorporated into the metabolic system or the cancer cells:

Mercaptopurine (6-MP) competes with hypoxanthine and guanine for the enzyme hyphoxanthine-guanine phosphoribosyltransferase (HGPRTase) and is itself converted to thioinosinic acid (TIMP). This intracellular nucleotide inhibits several reactions involving inosinic acid (IMP), including the conversion of IMP to xanthylic acid (XMP) and the conversion of IMP to adenylic acid (AMP) via adenylosuccinate (SAMP). In addition, 6-methylthioinosinate (MTIMP) is formed by the methylation of TIMP. Both TIMP and MTIMP have been reported to inhibit glutamine-5-phosphoribosylpyrophosphate amidotransferase, the first enzyme unique to the de novo pathway for purine ribonucleotide synthesis. Experiments indicate that radiolabeled Mercaptopurine may be recovered from the DNA in the form of deoxythioguanosine. Some Mercaptopurine is converted to nucleotide derivatives of 6-thioguanine (6-TG) by the sequential actions of inosinate (IMP) dehydrogenase and xanthylate (XMP) aminase, converting TIMP to thioguanylic acid (TGMP).

Don't feel bad if you didn't understand a word of the above description, which was taken from the FDA pharmacology website. I didn't understand a word of it either.

What was different about last night was the fact that those three little tablets were the very last three in Rudi's three year and four month chemotherapy treatment for T-cell ALL.   One thousand, two hundred, and fourteen days... of hell, at times, but mostly decent, or even pretty good times, all things considered (after the first year of misery was over, of course). 

I really didn't know how it would affect me, but it was anti-climactic. I was expecting in part a huge sense of relief, and a wave of emotion, as I have protected myself from that over the last three plus years.  But last night, there really was nothing, just a transition from a series of days where your child takes some pills each evening, and you try to remember to tick off a box, to a new series of days where your child no longer has to take those pills, and you do not have to tick off a box.

One Thousand, One Hundred And Sixty Eight

I feel guilty at times, not too often of course, but with growing frequency as time moves on.  The guilt I feel has nothing to do with anything I have done, or anything I have failed to do.  It is absolutely not related to anything I have control over. But it arrives, typically after the occurrence of a specific type of event:  The death of a child to cancer who I have learned about on this journey, or a significant downturn in their health, such as a relapse.

Today was one of Rudi's last few remaining clinic visits in his course of treatment, where he gets the usual workup by one of the pediatric oncologists at Grand River Hospital, plus Vincristine pushed into his port, and Pentamadine to reduce the risk of infection.  Part of the work up is taking his height and weight, and today he was 185 cm (likely taller if he didn't slouch), and weighed in at about 80 kilos. At first glance, he looks just like any fit, healthy fifteen year old kid, he could be a swimmer, a soccer player, a runner, or a hockey player.  In fact, the only thing that might indicate he is in nothing but perfect health is the bump a few inches below his collarbone where his port is located, and a couple of scars on his chest.

About an hour ago, the TLC Foundation (a London charity that helps children with cancer and their families) added a very sad post and photograph of a wonderful young girl who may not likely survive the next few days. Like many children with cancer she should have been treated successfully, gone into remission, and survived this disease, even at considerable cost. But instead she will die... How fair is that?   

And the guilt sets in, and fills me, and it makes me angry. Why? Why did Rudi have such an event free course of treatment? He fevered twice in three years, was hardly sick, and spent a couple of weeks in the hospital while his appendix decided whether or not it wanted to be surgically removed. That was it. And then there are kids who have the most miserable experiences during treatment where nothing seems to go well, and then they relapse, and sometimes they die.

I have always maintained that there are no guarantees that life will be fair, however that should really only apply to less important things, such as whether your baseball team wins the championship, or whether you get accepted to your first choice of university, or whether you end up buying a lemon for a first car. Not about who gets to live, and who does not.  Fuck this disease.

One Thousand And Seven

Tuesday was Venturers for Rudi, and as Katherine was going to her parent support group meeting in Kitchener, I took Alexander with me to Stratford to pass the two hours of time between dropping Rudi off and picking him up.

I needed some gas for the van, and Alexander had suggested we visit Tim Horton's (for his very own donut, perhaps?).  On driving out Ontario Street, we passed Dairy Queen, and Alexander suggested we could skip Timmies and go there instead. I suggested that if he came up with three good reasons for visiting Dairy Queen, we could get dessert...  Naturally I got three good reasons, with a fourth as an added bonus!

After some regular octane fuel for the van and high octane fuel for us, in the form of medium sized DQ Blizzards, we headed off to Stratford Public Library to check things out.  Alexander led me downstairs into the kids section, which we had all to ourselves.  We explored the shelves, but eventually Alexander got over to the young kids play and reading area, and began building a wooden block barn with henhouse, so I came over and lent him a hand.

The familiarity of that room began to grow on me now, so I asked Alexander if he remembered the times we came here in the past, those evenings when Rudi was in Scouts, and Katherine was at Orchestra in Kitchener. We would always visit this room in the library, and I would read him books and we would play, for an hour or more, until we had to leave to pick Rudi up.  Our occasional Tuesday nights out, which ran for at least a few years, ended in the late spring of 2014, but because of Rudi getting sick, they never started again.

And on that thought, for about the thousandth time, I began to feel overwhelmed, and the almost hollow feeling, the foamy surge before the crashing storm, began to rise up in my chest. And the Lilliputian army of men and beasts, thousands strong, set to work in an instant, Timbers felled into line were braced and bolted, sections of palisade were heaved and pulled upright, and made fast against bastions of stone, ditches were dug and earthworks raised  And just as the work was completed the explosion of emotion began to break against the walls.  And for the thousandth time, the hastily assembled defences held fast and stood tall, and I was able to not break down and cry.

And then the questions started to fill my mind. What has Alexander lost in three years? Anything? Has he been neglected? have we been kinder or more favorable to Rudi? How will the last three years affect him? Or will he be affected at all? 

Nine Hundred And Forty Eight

Strength. When you have a child with cancer, you see references to that characteristic commonly enough, in social media posts, blogs, and links to articles about children with cancer and their families. They can be direct and straightforward: "I am amazed at how much strength you have...", or indirect and more subtle:  "I have no idea what you are going through, or how I would even manage..." 

But are we actually stronger than parents whose children never get such a catastrophic diagnosis? I don't think that's the case at all. But there is one difference: We have had that strength tested, while those who are not in our place have not. And like so many who have gone before us, we have passed that test, and moved on. And all those who follow us will be tested as well, and they too will pass.

So contrary to the way many people think about strength, and what it takes to endure a journey like this that is presented to us, we are not super human, or brave, or exceedingly strong in any fashion. We have been presented with something rather nasty and horrible, and we are simply getting through it, doing what it takes to survive. We have been tested, and have passed... And in the unlikely event you are ever tested, I am quite certain you will pass as well.

Nine Hundred And Two

My son has T-Cell Lymphoblastic Leukemia. Apart from the fact it simply occurs as a random mutation of white blood cells in the bone marrow, there is absolutely no other known cause.  It certainly was not caused by eating "Five cancer causing children's snacks made from petroleum", including frosted strawberry poptarts, M & M's, gummy fruit snacks, Cheetos, or  Teddy Grahams.

After two and a half years of treatment, commonly known as Chemotherapy, it is becoming evident he will be a long term survivor of childhood cancer. And contrary to popular ignorance, apart from Chemotherapy, there is absolutely no other known cure. If not for modern Chemotherapy, he would have died about two years ago. much like virtually every child who died from leukemia up until the middle of the twentieth century.

Of course, if everything on the internet were true, we would have opted out of conventional treatment and put Rudi on cannabis oil concentrate, lemongrass smoothies, asparagus tea, and consulted with a holistic doctor who would help him meditate to kill his cancer cells, and within a year he would be cured. But everything on the internet is not true, so much like the sad case of Makayla Sault, had we done that, he would be dead.

But the issue with the internet is much of what is on it is actually complete and utter nonsense, or plain out lies, like the commonly touted "There is a cure for cancer, but pharmaceutical companies are making so much money on drugs they are suppressing it". There are so many ways to counter this complete stupidity that I hardly know where to begin... Cancer, either childhood or adult, in some way will affect everyone, at some point in there life. Are the people who believe this claim really going to believe that an exective or major shareholder with a pharmeceutical company who has the cure going to let their loved one die to keep their profits? And the pharmeceuticals who produce chemotherapeutic drugs are going to be the same ones who find the cure and suppress it? I could go on, but I will just have to explore the hundred or so refutations to that load of utter shit in another post.






http://www.cancer.org/cancer/leukemiainchildren/detailedguide/childhood-leukemia-what-causes

Eight Hundred And Seventeen

Harrington... Uniondale... Welburn... All names of otherwise pretty little settlements along the Maplewood Sideroad between Tavistock and London... And all places I would not miss if they happened to be totally wiped off the map. The countryside is beautiful year round, fresh new pale greens and yellows in spring, rich deeper greens in summer, vibrant with reds and oranges and the golden corn in fall, and stark, crisp, and white in winter. And all this beauty on this particular road brings to me is sadness, fear, melancholy, and despair.

The drive tonight started about 6:30 in the evening, fully dark, the air cool and damp, with cloudy skies. I had a passenger to accompany me on this drive, Alexander, now nine. I let him bring along his Nintendo DS, as drives like this leave me more contemplative than cheerful, and I did not want him bored for a whole hour.

A few minutes out of town I turned right on the Maplewood, and looked to the south. The familiar glow of Woodstock was directly to my left, and even though it was well over sixty kilometers away, ahead and to the left the glow over London was easy to see. The little blue Echo happily spun through the gears, seemingly eager to get us to our destination, and I settled into fifth at about a hundred clicks. All was dark, the moon obscured, the only lights from the occasional farms and houses we passed by.

The previous morning Rudi had been running a fever, so we had gone to the Kitchener Oncology Satellite clinic to have him checked out. Multiple sets of bloodwork from the port in his chest and his arm were taken, and a complete workup by the Pediatrician on staff. His white blood count was extremely low, and he had no neutrophils, so no ability to fight off any infection. He was started on saline, and soon after an IV broad spectrum antibiotic to keep any possible bacterial infection in check.  Other than looking grey and tired, the only other evidence of him being sick was a slight pain in his gut... The doctor was asking Rudi about how much or how little pain there was, and suggested that may be a concern. I replied that he had chosen a perfect time to get appendicitis!  Later that evening, after an ultrasound and  X-ray had revealed only a slightly inflamed appendix, Rudi and Katherine had been transported via ambulance to Emerge at Victoria Hospital in London for further assesment and possible treatment.

Through Harrington the road was wet with a light drizzle falling. I coasted through the chicane leading toward Adam's goat zoo and the microwave tower south of Belwood Lake, and passed a vehicle heading in the opposite direction. There had been virtually no other traffic on the road tonight, an apt parallel to our lives over the past two and half years. No matter what help, support, and love you receive, and we have received lots, as a parent you still drive this road completely and utterly alone.

Six Hundred Ninety Three

At the very front of Rudi's binder is a laminated page clearly marked "Paediatric Oncology Fever Card". It is basically a pass to move him to the front of the line at any hospital emergency department in the event he runs a fever. If that happens, no matter where we might be, we simply walk into an emergency room and present the card.  Absolutely everything going on there is then put on hold, and whatever staff resources are needed to begin Rudi's assessment and treatment are devoted to him... Cut your thumb dicing tomatoes, and you are fourth in line?  Sorry, you are now bumped to fifth!  Broke your arm falling off your bike and you are next to be seen?  That's a shame, you get to wait an extra twenty minutes!

So Rudi was not feeling well after dinner, and Katherine took his temperature, high thirty sevens.  According to protocol, a second reading in that range in a twenty four hour period and we would have to run him into Kitchener.  He went to lie down, so over the next few hours checked him a couple of times, once under, and once over the threshold. He appeared under the weather, and had a headache and the sniffles, more than likely suffering from the common cold.

An hour later, with a temperature in the thirty eights, we phoned London to reach the Oncologist on call, to let them know we would head in to Kitchener.  As Kitchener has an Oncology day clinic and a Paediatric unit, we wanted to know if we should go to Emerg, or bypass it straight to the Paediatric unit. After an hour of phone tag between us, two docs in London, and the Kitchener staff, who had a bed, didn't have one, and had one again, we were sent straight to the inpatient Paediatric unit, where we would be expected.

We were buzzed in after arriving, and met by two nurses, and eventually the Doctor, and over the next hour Rudi had bloodwork taken, and a whole bunch of questions asked about how he was feeling, in addition to vitals done. Because the Paediatric unit in Kitchener is not an Oncology unit, and the Doctor not an Oncologist, his Doctor in Kitchener had to conference with the Oncologist in London to go through all the results and confirm treatment.

About five hours later, with bloodwork showing he was not neutropenic (still had some immune system left) and his fever falling, he was given two Tylenols and we were allowed to go home.  It was two-thirty in the morning, and he slept all the way back to Tavistock.

Five Hundred And Forty Three

I was handed the envelope by a gentleman who looked about my age, or perhaps just a few years older. He was greying a little, with a wider face and square jaw, classically handsome, but with hints of a tiredness in his appearance. He was dressed in faded jeans and a rust coloured cotton shirt, wearing black oxfords. The envelope was blank except for one word, one name rather, my own.  I opened it after the drive home, and read it while standing in the kitchen.

My name is Robert, and I am the father of Melissa, who is a long term childhood cancer survivor. Melissa was diagnosed with B-Cell Acute Lymphoblastic Leukemia about twelve years ago, and completed her chemotherapy treatment after a little over two and a half years. She is now seventeen years old, and is doing absolutely wonderfully now!  As a family, we have traveled a road that may be quite similar to the one you now face, and we would be happy to give you and your family whatever support you need.  Please feel free to call me anytime at 519-725-1234, or email me at robertsmith@yahoo.com"

I could feel it, the wave approaching, the lightness in my chest, and the foaming surge, but I fought hard, and pushed it back. The last time was about three months ago, at the cottage after watching Rudi fly out by Medevac helicopter to Ottawa with his mom, two days before his actual diagnosis.  For three months, we had mostly overcome our fear, and much of the emotional upheaval associated with your kid getting diagnosed with cancer. And now this, exactly what I needed, more than just about anything. Someone who has a very good idea where we are going, and is holding out their hand

But sadly, 'Robert' and 'Melissa' do not exist, and the letter does not exist, and that person holding out their hand and offering it that early on in our journey does not exist.  That is not to say we did not meet 'Robert' or 'Melissa', as we have, and many others, just that their names, and specific circumstances are different, but would it not be nice to get a letter as simple as that within the first month or two of your child's diagnosis?

Seventy Seven

It was an absolutely glorious day, the mid day Autumn sun still very strong and high in the sky, and it was easily warm enough for shorts and a tee shirt, even though it was well into September. I had just walked across the street from Ronald McDonald House to deposit a cheque and get some cash at the very conveniently located Bank of Montreal Branch. 

I arrived at the doors just before an older man in a dark blue suit, tall and solidly built, who nonetheless was clearly feeling the heat, beads of sweat on his temples, his reddish grey hair cropped closely, and he had a graying well groomed goatee. I opened the outer door, went in first and held it, then opened and held the second door and let him pass ahead. He thanked me, and as we got into a fairly long line of clients for the tellers, he told me to go ahead, as I had arrived at the building first.  I noticed the business deposit book in his hand, figured he may be pressed for time, and politely declined:

"You seem to be on business,"  I said, pointing to his deposit book. "I have been forced to stay for a while across the road, so have all the time in the world, really."

He looked across the road where I had pointed, and smiled.  His eyes, I noticed then, sparkled brilliant blue.

"Ahhh, it has been quite a while since I have been there... RMH correct?  Close to fifteen years actually now, but my wife and I spent the better part of a summer there."

"Oh! so you know it well then?" I replied, 

"It was much smaller when we were there, of course, They added the big addition on about five years ago or so... Our son had B Cell leukemia, got it just after he turned four."

"Oh wow.... Our son has leukemia also, T cell, He got sick in June, and was diagnosed early in July this year."

"So he is almost through consolidation now?  You should be able to go home soon then, then things will start to get better."

"That's the plan, and I hope so." I replied.  "And if you don't mind...ummm" I had no good idea how to be tactful asking about his son, but I had to know. He did not say whether his son had survived or not.

"Oh Jonathan!" He laughed, heartily. "Just finished first year at University, two inches taller than me, and more of this... and much less of this!" He answered, in turn squeezing his bicep, and patting his gut. I could not help but laugh. "He plays hockey, does well in school, has a wonderful girlfriend, He is great!"

"Well, that is good"

"It is yes. But it wasn't back then, when we were at your stage.  You are following a road that very few are permitted to travel. But you will travel it, and eventually you will come to the end. And you'll be able to look back, and see how far you have come, even though it was extremely difficult."

"Well, I do hope so, That is what I have to believe."

"And years from now, you might even meet someone, walking into a bank perhaps, and let them know that they will also likely be successful as they travel the road themselves!" He smiled, "Take care, and good luck!"

He was at the head of the line now, and one of the three tellers had just become available.

"Thank you!"  I replied, "Very much."

He laughed again, "No need at all, I know you'll pass it along."

Four

It was about one o'clock in the morning, and the Paediatric ICU was nearly dark, save for some task lighting at nurses stations, and the countless LED monitors and LCD display screens giving the whole place an eerie, dim glow. It was my second night with Rudi at CHEO, and I did not need sleep, even though I had probably only had about twelve hours of it over the previous four days.  I could hear him breathing gently, muffled though, under his breathing mask. A hose and a couple of tubes led away from the breathing mask, an IV tube trailed away from his arm to a wheeled support rack, and a tube from his chest dropped off the bed to his 'zombie briefcase' which was still collecting the puke coloured liquid being drained from his collapsed lung.

I sat, and thought, as there was absolutely nothing else to do.  How did we get here? For what wrongdoing was I being punished? I mean, Rudi was not old enough to have done anything in his life to be punished for, so I was able to eliminate that as a possible cause. Was there a box I forgot to tick, the one that requested my preference for a cancer free child? Perhaps there was a God, and he just has a sick fucking sense of humour? Or perhaps the diagnosis could have been a lot worse, and this will be an easy path? I had no answers, I just knew I was completely, unequivocally afraid.

At least two hours passed, until I noticed a strong smell of shit. In his sleep Rudi had had diarrhea, and had completely messed his hospital gown and all of the bed sheets. I gently stripped off the bed sheets and his gown, and found a half dozen face towels, which I wet, to clean him and the bed up. After getting him out of bed, still not fully awake, to completely clean this legs and body, and he and the bed were cleaned and dry, and all the clothing tossed in a hamper, I made the bed, found him a gown and dressed him, and helped him lie down again, to continue sleeping.

One

"Mister Chiles?  If I could talk with you and Rudi's Mom for a few minutes, there is something of more concern than your son's collapsed lung."

Katherine and I looked at one another. She appeared concerned, but really not worried at all, the nurses probably did not have a great idea of what was going on, other than Rudi's collapsed lung, a rare but not completely unheard of occurrence in tall, healthy teen boys. We stepped together into a small room adjoining the emergency department, and the doctor pulled up Rudi's chest x-ray on the computer. You didn't need a medical degree to see just how bad things looked. His left lung was simply not there, and his trachea and esophegous were pushed well to the left side of his chest, running toward his stomach in a distorted and twisted question mark. Running vertically down the center of his chest, taking up well over one third the total width of his chest cavity was a brilliant white mass, which completely obstructed the image of his spine.

"As you can see, Rudi has a pleural anuerism, a collapsed left lung, clearly evident here, however the large mass in his chest is his lymphatic system, which is normally not this size. I have sent this image to the radiologists at CHEO, and they have returned with an initial assesment. I can't provide a diagnosis here, but he has to be transported to either CHEO or Sick Kids in Toronto immediately."

I looked again at Katherine. She appeared calm, but I could see the worry now, and confusion. It's not everyday that you go from a pretty damn healthy kid with what you think is seasonal allergies, to being told they have to go immediately to the nearest children's hospital.

CRAPS - Eight The Hard Way

I was standing in the middle of a long stretch of straight, nearly flat road. It had probably been a nice highway when it was last paved, with asphalt that was smooth, tight and virtually black, wide shoulders, and freshly painted lines, but that was at least a decade ago;  the pavement now had a very light grey pitted appearance, with numerous expansion cracks forming chains of small octagons that crisscrossed the road; there were small weeds growing from cracks in the shoulder, and the road markings were now faded and worn.

I was looking south, across a stark, dry landscape of short grass prairie, all golden yellow and tawny sand, the sun high in the sky and a little to my right. A series of low, smooth, rounded hills rose in the distance, beginning directly south of me, and trending to the west. The sky was an expanse of pale blue, with scattered cumulus clouds drifting slowly to the east.  It was a place I had only been once before, but for some reason I was familiar with it... I knew it well enough.

In the distance, through the shimmering midday heat, I watched as a figure walked toward me, his form wiggling erratically in the haze.  He came slowly, with no sense of urgency, picking what seemed to be a random path as he walked north toward the road.  Over the next ten minutes I watched as he came closer and became more clear: He was overdressed for the heat, wearing dark pants with a long dark grey great cloak, and a low, wide brimmed hat.

"Son... of... a... bitch", I thought to myself purposefully, yet at the same time quietly hissing the words out loud. "What the hell is he doing here?"

A few minutes later he was picking his way through the low wide depression that served as a ditch, and walking up the shoulder of the road.

"Good afternoon, son" the cloaked man said, quite calmly, with no hint of emotion, no flair.

"Why are you here? We don't normally meet like this" I replied. My acknowledgment of him was tacitly understood.

He looked me in the eye, and turned his head slightly. His skin was well tanned, lined with wrinkles, and his stubble was at least a week old, or more. "We have business, you and I, son... Well, something of that fashion, at least."

He knelt down, squatting on his haunches, cupped both hands together and shook them quickly, then just as quickly pushed them forward and separated them, and two dice tumbled to the asphalt. They hopped around for a moment, rolled toward me, and then stopped. Each showed six black dots.

"Boxcars!" He exclaimed, hinting at surprise.

The old man reached forward, picked up the dice, then slowly rose to face me, and handed them to me.

"Hold on to these son, your turn to roll will come soon."

At that moment, I heard the unmistakable blast from the air horn of a semi trailer, and I snapped my head quickly to look to my left. About a hundred yards away I saw the chrome polished grill and diagonal slash of a Volvo tractor-trailer bearing down on me at full speed.  I watched, helpless, and completely unable to move, as the massive rig raced directly toward me, too dumbfounded to even think about screaming as the truck closed the distance to  me, and then hit me full force.

Darkness.

Silence.

Cold.

For what seemed an endless time...

And then out of nothing, all of the tiniest molecules of my being began to find one another, to reassemble, faster, and faster, coalescing again into a form, the same form they had taken seemingly ages ago.

Then, within only an instant, there was light, dazzling in its multi coloured brilliance, and sound, a cacophony of horns, strings and other instruments, and heat, soothing, penetrating warmth.

I was standing again on the road facing the old man, the horn of the semi trailer still blasting full strength, it's pitch now taking a more muted, minor tone. I glanced to the right, and saw the back end of the trailer now racing away from me. No time at all had passed.

I looked at the old man, he was still standing in front of me, not particularly surprised, or distressed.

"Looks like its your turn now" he said.

"Wait, that bastard, shouldn't he have stopped?" I replied, interestingly far more incredulous that the semi driver had failed to stop after hitting me, rather than my entire form being vapourized, then virtually instantly reassembled out of ether.  I looked at the man, he was waiting, patiently, I knew what to do. Getting down on one knee, I shook the dice in two hands briefly, then tossed them forward. The tumbled near to his boots, and stopped.

"A pair of fours" the old man announced, solemnly "That's an eighter from Decatur"

"What the fuck is that supposed to mean?" I asked

"It's a roll of eight the hard way, just one of a number of random outcomes when you roll two dice, son... It has more meaning than that now... It looks like he might just get lucky."