In October 2020, my 12-year-old son Toby was diagnosed with Fibrolamellar Hepticelular Carcinoma, a rare form of cancer that affects the liver. Unlike most cancers of the liver, it occurs with greater frequency in adolescents and young adults who are otherwise healthy. He died three months later on January 2, 2021. I would do anything to change that outcome, but I can’t. What I can do is try to help ensure that nobody else has to experience that kind of loss and pain.
I learned last year that Sick Kids has its own ride to raise money to fight kids’ cancer. This is the ride I’ll be participating in this year.
Last year, your kindness in support of Princess Margaret Hospital overwhelmed me. I thought I would be lucky to meet my conservative goal of $500. Instead, I was overwhelmed when people generously blew that goal by over 10 times, donating more than $5,200.
This year, I thought I would be a little more ambitious in seeking to raise $1,000 for the Sick Kids Foundation’s Great Cycle Challenge in August to allow them to continue their work in developing treatments and finding a cure for childhood cancer. This amount was met in less than 12 hours upon creating my Great Cycle Challenge profile!
Again, I’m floored. I’m so thankful to know such amazing people.
If you wish to make a contribution to this cause, please visit my profile page.
The start of this story technically goes back about 15-16 years, shortly after my second child was born. My wife and I came to an agreement that after recently having a second child fairly soon after our first, we should take a break before having more. We discussed options for birth control.
Decisions were made, procedures had, and — against the odds — we were expecting our third child, Toby, within 2 years anyway.
I made a decision to have a vasectomy performed. As far as Emily and I were concerned, we were finished with having children, now having had 3 close together.
We continue to experience many emotions over our loss. Those feelings include the sense of being cheated. Robbed. One of our children was stolen from us by fate against our will. We still have so much love to give to our kids. With that in mind, we re-opened the discussion of having more children.
We weren’t naive about our chances of success. Emily and I are both in our 40s now. But, with open minds and hearts, we started seeking fertility consultation in May 2021.
The first action for me to take was to have a vasectomy reversal, which I did in July 2021.
Emily and I then started having discussions with Newlife Fertility Clinic in August 2021. Emily was monitored and both of us underwent testing to assess feasibility — including assessing the success of my vasectomy reversal. By December, the clinic had all of the data it needed.
During that time, my benefits plan at work came up for renewal. This was a good thing because it allowed me to increase my coverage to pay for fertility medication, which it wouldn’t have before. The new coverage began in January 2022, and that’s when Emily began the process of ovarian stimulation and egg retrieval.
In March 2022, after going through embryo screening and selection, the embryo was transferred, and we had a confirmed pregnancy!
Whose Cookies Are They?
Here’s a scenario to consider.
You’re making chocolate chip cookies. You’ve done your best to prepare, but you realize that you don’t have any chocolate chips! Your neighbour has some and kindly offers them to you so that you can complete your recipe and make your cookies.
Question: Whose cookies are they?
This thought experiment was one that I and Emily had to consider during the IVF process. The reason is that my post-vasectomy reversal testing indicated that I was not a viable donor to produce an embryo. Secondary male-factor infertility: At one time I was fertile, but am no longer.
So, we turned to a donor bank.
In choosing this, we were required to meet with an IVF councillor. One of the things we talked about is the nature of fatherhood, and what it means to be a father to children that I did not offer a biological contribution to.
What is a father, anyway?
Fatherhood is just as much a legal term as a biological one. But the more relevant example, in this case, is a relationship between a male parent and a child. I will be the only father these kids will ever know. They will be my children, and I will help raise them to be the best people with all the love that I have, as best as I possibly can.
Although we had help, we took the time to make the way for these kids to come into the world.
They’re our cookies.
Through this process, I came to learn that sperm donation is seen as altruistic in countries like Denmark, where 90% of donors state this as a reason for donating. This hadn’t occurred to me until I found myself needing a place to turn to for help. So, guys, consider donating. There are often shortages in Canada. It’s an amazing gift to people that want kids.
At one point, I donated regularly. However, in 2019 I developed a chronic cough/throat clearing sensation. I’m still working with doctors to figure out the cause, or what works to reduce symptoms. In 2020, before a COVID-19 vaccine became available, this cough was problematic in convincing nursing staff that this was not “new or worsening”, and so my donation was refused. I decided to hold off until a vaccine was available, or the situation was otherwise more amenable for me to donate again.
That shook me to my core, and I’m still building up the fortitude to go outside and be in public again — never mind the pandemic. I wasn’t sure whether they would accept my donation. My cough hasn’t improved (or gotten particularly worse). But I am fully vaxxed + boosted, I haven’t left the country recently or otherwise done anything that puts me at high risk.
They did take my donation. That was really important to me, and was emotional if I’m totally honest.
By the time we learned that Toby had liver cancer, his liver had already failed. During his assessment, we discovered that cancer had already spread to his lymph nodes, which meant that he didn’t qualify for a liver transplant. It had infiltrated too much of his liver for a resection. Normally, aggressive chemotherapy would have been recommended, but as his liver had already failed, he wouldn’t have survived it.
We had no options. There was nothing we could do to help him. To save or extend his life.
Totally. Fucking. Helpless.
Had chemotherapy been an option, he would have needed blood platelets. Platelets that nearly anyone can donate. How fucked up is it that by the time I was able to donate again, it’s too late to save my son?
But, it’s not too late to extend or save another child’s life. Children that are going through chemotherapy right now. Children with parents that I hope never ever ever have to experience what I have.
You can help these children too. And everyone else that’s going through chemotherapy or experiencing any other number of situations that require platelets, or a blood transfusion.
For the last few years, I’ve held the notion that if you don’t agree to set any New Years Resolution, you’ll never be disappointed with yourself.
But if I’m totally honest, I kind of am disappointed with myself.
Not that I could have done anything differently in 2021. I’m still adjusting as best as I can from the loss of my son Toby. But I’ve also noticed that as I protect myself from feeling overwhelmed from the PTSD associated with this loss, I’ve also separated myself from people and causes I care about.
As I feel and see winter melting away, welcoming a new Spring, the resolution I’ve made for myself is to try to participate again in things that bring me joy, and to try to allow joy into my life again — with the guilt and grief that often comes with it.
I already know it’s not going to be easy. It’s also not always easy to say “no” to the things that aren’t particularly joyful. But there are a few things that stand out that I’d like to try focussing more on:
Exploring Web development and design thinking.
Engaging with my local cycling advocacy in Brampton again (BikeBrampton). They’re good people.
Developing non-partisan models and policy ideas that empower communities. (I’m trying to be very particular with this one, as advocacy can easily eat up a lot of personal time and isn’t always a joyful task).
Enjoying the journey of exploring interesting ideas — just like Toby used to do.
As I was writing my last post, there was a moment where I had to think about about what featured image I wanted to use. I didn’t really have one, so I just picked my profile picture. It worked, I guess, but I don’t think this is a sustainable approach. Ideally, I’d like to have a unique image for every post.
But this sounds like a lot of work, and I’m lazy. Perhaps WordPress can offer an assist?
I’m thinking of adding a feature to my theme to automatically generate a post image, save it to the Media library, and then append it to the post. I think all of the elements I need are already available:
PHP can create image files, and upload them the WordPress upload location.
The theme should be able to create an “attachment” post type with the image details.
Then, upon successful upload, append the attachment ID to the post I’m authoring.
As far as the substance of the images themselves, I’m thinking it should be easy enough to retrieve a profile picture of the author, or the header image/colour from the theme, and put that into the image. The excerpt of the post can be used as a text overlay. Give it a nice trendy layout and, voila!
I’ll get to prototyping something when I can. Should be fun!
1 year. 12 months. 365 days. 8,760 hours, since I last told Toby that I love him. Since I heard him say he loves me. Since I’ve heard anything come from his voice at all.
It still weighs on me, clearly. I understand from other parents that have also lost their children that this is normal. It could take years to feel “normal” again, if it happens at all — which brings me to the point of this post.
I’m making, and have made, some changes.
Brampton Cycling Advisory Committee
In September of 2021, I formally resigned from the Brampton Cycling Advisory Committee. I think the letter I submitted with my resignation explains my reasons best.
“The death of my son Toby to cancer has forced me into a position where I have been re-evaluating everything in my life. One of those things is a greater emphasis on spending time with my family. … I don’t feel that I have the same energy or mental fortitude that I did when I applied for the committee. I’m not the same person that I was — the person that was appointed to serve this committee and the City of Brampton.”
Don’t get me wrong: I still think bicycles are awesome. But my style of advocacy, for better or worse, was confrontational. This was intentional. The reason was not just to be a pain in the ass (though that was kind of fun for a while), but because growth takes time in politics, undoing growth happens quickly. Transparently challenging ideas is a fast way to evaluate whether they hold any water, even though, generally, people don’t like being challenged.
The reason why I mention this is that I’m actually an introvert. Any speaking engagement I’ve ever been to has relied on careful preparation, anticipation, and attention, which left me feeling exhausted at the end every single time. I simply do not have the energy for that anymore — or at least for now. While advocacy was something I certainly cared (and still care) about, perhaps because I’ve already invested so much time in it, I don’t know that it’s something that brings me joy. It feels like an obligation, somehow. An obligation that feels misaligned with my priority of spending time with my family.
Because of the often confrontational nature of my advocacy, and observing a phenomenon called “doxing”, there were certain things I kept mostly private — or at least wasn’t very vocal about — including my full-time employment because of instances I observed where friends were reported to their employers over disagreements on Twitter.
I want to start changing that up a little bit. My work has been an important part of my life too.
For the last 11 years, I’ve been a full-time employee, in some capacity or another, for the AIR MILES Reward Program. Most recently, my role was “Sr. Content Specialist, Publishing” for Marketing Shared Services. For many years, I was able to put some of my design, and a lot of my development skills, to work within this role. But not full-time.
I recently accepted a new role, starting in January 2022, within the AIR MILES Program of “Developer, Productivity Tools”. With this move, I hope to get myself back into a headspace of designing and developing useful products for the AIR MILES marketing team, full-time.
My family has decided that it’s time for a change of scenery. We’re co-purchasing land in Northern Ontario, and will be documenting the process of creating new dwellings there — ultimately with the intent of monetizing the content to help pay for “nice to haves”. We’re calling this project Papineau Homes. We’ve already released a few videos, mostly introductory stuff. We don’t really have a release schedule yet, but I encourage anyone who is interested to subscribe to the Papineau Homes YouTube channel for updates.
The pandemic has continued to take its toll on cycle training lessons for The Bikeport. I’ve been continuing to offer a service agreement for data aggregation with BikeBrampton, and starting to prototype other services that could be offered province-wide as I prepare to move to Northern Ontario. I’m also looking for ways to make it easier to manage an online shop using affiliate marketing and drop shipping services.
Other Development Stuff
Gradually, I’ve been getting back into web development. I’ve released a WordPress theme on GitHub that I use as the parent theme on all of my websites. However, I feel that the pièce de résistance of my recent development effort is converting a proof of concept I had for web typography framework, and producing a WordPress typography plug-in with it. In my mind, if you feel inclined to check out these projects, these should be considered perpetual alpha versions. I update and support them as I need to, they’re not intended for general use on WordPress sites. If they were, I would have submitted them to the official WordPress repository. 🙂
I’ll try to remember to write more on these projects later.
In the meantime, a fair amount of personal development time is going into creating my own personal finance software, using custom WordPress post types. *LOL* I’m just not happy with solutions on the market right now. Especially when it comes to creating reports on my finances that I want to see but cannot have, but could create myself for free. I might share some screen captures of that work later, but it’s definitely intended to run on personal web servers on local computers only!
My God. Has it been 7 years since writing a post on this site?
I guess it’s been easy to forget about. Other platforms like Twitter, Facebook, Medium, etc. make it easy to post and share content quickly and efficiently. Although, Facebook has increasingly become more of a dumpster fire.
But I guess, sometimes, there are some things to say that need to go, I dunno, deeper — with many parts. I think this is one of those posts.
Back in Christmas 2014, the last time I apparently wrote a post on this site, my son Toby would have fairly recently turned 6 years old, being enabled in his love for Lego.
This hadn’t changed by the time he was 12.
7 years later, in 2021, we’ll be experiencing our first Christmas without him. He died of a rare liver cancer, fibrolamellar carcinoma, on January 2, 2021.
I miss him every day. So, so much.
On August 29, 2021, I did my first of what will likely be many more fundraisers to raise money for cancer research: The Ride to Conquer Cancer. Unlike previous years, due to the pandemic, participants were encouraged to either participate virtually, or participate in a physically distant ride. I took the opportunity to plan a ~50km ride around Brampton, a sort of trip down memory lane, to remember important locations that impacted Toby’s life.
Summary of Locations
The ride starts at “Toby’s Way”, a section of recreational trail in Brampton named in his honour.
Place of Birth
Toby’s delivery was a home birth. It seemed fitting to re-visit this area of Brampton early in the ride.
The cost of daycare, especially after Toby was born, had a huge impact on our lives and the decisions we would make later regarding our “cost to work”, and eventually living car-free for 10 years.
Helen Wilson Public School
Toby’s first kindergarten school experience, a short cargo-bike ride from our house.
Brampton Public Library, Four Corners Branch
Toby was a prolific reader. I would often stop at the library on my way home from work to pick up and return books for him.
Bramalea & Chinguacousy Park
“Canada’s first satellite community”, this part of what is now Brampton had a huge role in Toby’s life. His cousins lived here, and he visited often. When his older siblings went to school here, he enjoyed breakfast with his mother after the school drop-off (before we sold our car). He would then enjoy dance parties later during after-school pickup. Eventually, he would go to school in this area.
Dorset Drive Public School
Following his older siblings’ footsteps, Toby attended this French immersion elementary school from grades 1-5.
William G. Davis Sr. Public School
Before ending the ride, the final stop is William G. Davis Sr. Public School. This school is significant to my family. It was attended by myself, both of my brothers, and Toby’s older brother. September 2020 was Toby’s last school experience, before collapsing in gym class one day and needed to be taken home, a few days before waking up jaundiced when his liver failed from what we later learned was cancer.
The entire ride was live-streamed. I wore a microphone to record my narration as a rode around Brampton visiting each location, reflecting on the significance of each place in Toby’s life. It’s over 4 hours long, but if you wish to see them, they’re here: