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.