I live in Canada. In my province, the third Monday of February each year is a statutory holiday called Family Day. As I am publishing this story on Family Day 2022, I thought it apropos to share a story about a family who impacted me while I tried to help them on their short cancer journey.
In late 2019, I met a twenty-six-year-old man with locally advanced rectal cancer. The term locally advanced means that he had a very large tumour that started in his rectum and grew to the point that it was invading into surrounding structures in his pelvis. He was in a lot of pain from his cancer.
This young man’s case was discussed at our multidisciplinary tumour board rounds. Difficult cases are presented at these rounds to try to come up with a consensus on best recommended treatment plans. There are usually several medical specialties involved in these discussions including medical oncologists (chemotherapy doctors), radiation oncologists (radiation doctors), surgeons (the scalpel wielders), and radiologists (doctors who interpret X-rays, CTs, MRIs, etc).
It is generally considered true that the only chance of cure for rectal cancer patients is if their cancer can be completely cut out at one point or another. At the time of his diagnosis, my patient’s surgeon did not think she could remove his cancer because it was too big. Therefore, the best recommendation was to try to treat his cancer with upfront radiation and chemotherapy; this was the only long-shot chance to shrink his tumour to the point that he might be able to have a curative surgery.
For six weeks this man had daily radiation treatment to his pelvis; during this time, he was also prescribed chemotherapy. A CT done shortly after completion of this treatment demonstrated his cancer had shrunk enough to take him to the operating room. Unfortunately, even though his surgeon did the best surgery she could, some cancer was left behind inside of him. Surgery would not be curative.
Best attempts were made thereafter to see if his cancer could be controlled. There was still an outside chance that different chemotherapy could shrink the cancer that remained in his pelvis for another surgery to be possible. Our team managed to access a clinical trial for him, giving him experimental immuno-oncology drugs. Sadly, all too quickly his cancer was causing unsurmountable trouble. He ended up in severe kidney failure as his cancer blocked off his ureters (the tubes that carry urine from the kidneys to the bladder). The only solution to this was inserting nephrostomy tubes on both sides which essentially allowed his urine to drain into bags that hung on the outside of his body. These ameliorated his kidney failure briefly enough that he could try a standard combination treatment used in advanced colorectal cancer called FOLFIRI. After one dose of FOLFIRI he became too ill to get any further treatment. He died fifteen months after his cancer diagnosis.
What I haven’t said yet is that this young man also had a rare genetic condition. I will not name the condition here as it is rare enough that if I did, I might forfeit his anonymity. I am not an expert in his genetic syndrome. In fact, I didn’t even know what it was before I met this patient. People born with the syndrome he had can have a constellation of distinct features including a chance of blood vessel issues, musculoskeletal changes, unique facial features, and mild to moderate cognitive or learning challenges.
Though my patient was very functional and could take care of most of his activities of daily living while he was well including eating, drinking, personal hygiene, toileting, and many other day-to-day tasks, he was not able to live independently, and he required a legal medical decision maker. This is where his family came in. He did not have the ability to make complex medical decisions for himself. His mom and dad did this for him.
His parents, or on occasion just mom, were with him at every visit. I would speak directly to my patient and ask him questions. I looked at him, not his parents, while I told him about the treatment I was recommending and about the side effects we had to sort through. I asked him to tell me how he was feeling and what he thought he wanted. He would answer me to the best of his ability. I believe his parents and I tried to not let him be a passive bystander in what was going on. But often, when I questioned him, he would glance over at one or both of his parents expectantly, as if sending a telepathic message to please answer for him. I watched this man look to his parents to make sure he was safe and taken care of. And each time, his mom and dad would encourage him to answer for himself; sometimes he did but when he didn’t, they stepped in to answer on his behalf. He was safe. He knew he was. I knew he was too.
It was evident to me that this man’s mom and dad had many conversations with him out of my ear shot, explaining his cancer, explaining treatment, explaining death. I can’t imagine how very hard those conversations were.
I know this man’s parents were his advocates, his champions. His mom and dad decided what treatment he would and would not get based on their experiences and their knowledge of what he would want, how much pain and suffering he could endure, and what was best for their family. These parents were the people who decided if he would do radiation and chemotherapy, if he would undergo a surgery, if he would participate in the clinical trial, if he would get nephrostomy tubes, if we would try one last chemotherapy combination, and ultimately, when their son would be kept comfortable to die as peacefully as possible.
I can’t imagine how difficult it was to be these parents – to make these choices for the person you created and brought into this world, who you watched grow up for twenty-six years. I can’t imagine being the parents who survive and thrive in the hard work, challenges, and triumphs that undoubtedly are part of life with a child who has a genetic syndrome, only to also be dealt the hand of a terminal cancer diagnosis.
I can tell you that when I looked into the eyes of mom and dad to tell them the treatment for their child’s cancer did not work, that his cancer was growing, I saw devastation. When I had to tell these parents the experimental drugs caused too many problems and that we could not continue, I saw crushed hope. When I had to tell them there was nothing more to try because their son was too sick, I felt their hearts crumble.
I admire this family. I recognize they walked together in fine balance, trying to give their son space while knowing their ultimate responsibility as parents and guardians. Of course, they wanted to do their best for him. Their best, in the end, was to love him in all the ways only they could, while he lived, during his death, and now through their memories of him. I hope they know they did an exemplary job.
I believe my patient was prepared for the inability to get more treatment. I had the sense that he knew he was soon to die. I like to imagine this man had a good death surrounded by love. I trust his parents know they are superheroes – their strength limitless.
Author notes:
I am a mom. My son is fifteen; my daughter is twelve. I love my not-so-little-anymore humans more than they will ever know. They make my heart happy. There is not a day that goes by that I don’t say thank you that I am their mom.
I think about the families of the patients that I serve all the time. These families have a great impact on me and how I want to show up as a mother. When I think about the losses of my patient’s families, I squeeze my kids a little closer, a lot harder, and for just another extra second or two to breathe all of them in. I drive home a little faster to share every possible moment of connection with my kids. I find myself watching them walk away from me when I drop them off somewhere until they are out of sight, just so I can make a photo memory for my heart of how they look right then and there. I try my best to be in the moments with them even when we are just doing normal day-to-day stuff. I have so much curiosity and anticipation waiting to see what’s going to happen next with them. And I want to be fully present when it all happens.
My work experiences impress upon me that I don’t want to miss a single thing with my kids. I’ll gratefully take it all with them – the joy, the disappointment, the pain, the surprise, the growth, the setbacks, even the eyerolls. I will most especially take all the love that comes from being their mom. I thank the families I encounter in my work for helping me have this perspective and for helping me make my own family experiences as rich as they can be.
If you happen to live in a place with a Family Day, I hope you spent a minute or hour, or better yet, the entire day with your family; if you don’t, I challenge you to make a Family Day of your own.
How did you spread love within your family today? I would love to know.
