Tag Archives: Final Journeys

Terminal Cancer, Day by Day

What to Tell the Kid

2 Comments

I’ve been preparing Isaac for his daddy to die for months now.

The subtle work had already been done: my librarian mom stocked his bookshelves with books about feelings, death and saying goodbye about a year ago.

But sometime this summer I realized Isaac was spending too much time watching YouTube videos of dads playing with their kids. Specifically: The Axle Show. Isaac would watch this show on our iPad while his own dad napped through the afternoon. I realized I had to explain why Brock wasn’t playing with Isaac the way other dads played with their kids — or even spending as much time with Isaac as I did, even though all three of us were home.

So I started by explaining to Isaac that his dad was sick. Not the normal kind of sick that Isaac or I got sometimes — a different kind of sick. It was the kind of sick where, although some days his dad might feel better, Brock would never get better.

And, eventually, his daddy would die.

And then of course Isaac asked if he would die, and if I would die, and I said yes, everyone dies eventually, but Isaac and I wouldn’t die for a very long time, until we were very old (I hope!).

Keep in mind — Isaac was three when we were having these conversations, so I would say something and then he’d get distracted by a Hot Wheels car, and then a week later he’d ask about the dying part and I’d answer and then he’d want to play in his sandbox.

My research into kids and grief said that there are four key questions/messages that need to be dealt with, sometimes over and over again. They are:

  1. “Did I cause dad to get sick and die?”
  2. “Can I catch it?”
  3. “Can I cure it?” (Isaac loved to play doctor and give his dad medicine.)
  4. “Who will take care of me when dad dies?” (I tell him every day that it’s mom and Isaac, together forever.)

Once we had the “sick” conversation, Brock and I noticed Isaac saying he was “sick” more often. We would remind Isaac that he was healthy-person sick, and that he would get better.

Oh, I just remembered Isaac saying this on a camping trip this summer:

ISAAC: “When I grow up, I want to be a daddy and get sick.”

That destroyed me and Brock. It’s hard to be a grown up and respond properly to stuff like that.

It was very tempting — at many times over the past year — to send Isaac to stay with my parents and sister’s family in Invermere so that I could focus on Brock. But Maggie Callanan’s Final Journeys emphasised the importance of children being part of the dying process, both to help them with their own grief and so that adults could model grieving behaviour appropriately. Luckily my mom came to stay with us for five whole months this winter, and Brock’s parents and brother’s family took Isaac for play days on a regular basis this summer. I was able to take care of Brock as he became sicker, and Isaac was still active and having fun.

Isaac was here when his dad died at home last week. He was the first person to come into the room to say goodbye (which was his choice — I wouldn’t have made him do it). Then he went back out to play.

In the week since Brock died, my sister and dad have been staying with me: we try to have consistent answers for Isaac’s questions, which he asks at random times.

He wants to know where his dad went. (“Daddy died, remember? He’s going to turn into dirt, and flowers and trees will grow out of the dirt.”)

He asks when his dad will be back. (“He died, so he won’t be coming back. But your mom is here to take care of you and we are here too.”)

These spontaneous questions are like little paper cuts. But it’s our job to answer him truthfully and patiently.

I’ve read that children who lose a parent have to re-deal with their grief from different angles over and over again as they grow up. The questions and challenges Isaac has around his dad’s death as a four-year-old will be different from those he has as an eight-year-old, or a fourteen-year-old, or a young adult. I’ve dreaded this ever since I read it.

I am putting together a “Box o’ Brock” for Isaac, full of Brock’s favourite clothes and books and his special coffee cup. Brock wrote a letter to Isaac that I’ll include in there, and his friends are going to print out their epic Facebook Messenger conversations, which capture so well Brock’s voice and brain. We will always have photographs of Brock on the walls, and I’m already reminding Isaac of what Brock would say in certain situations (“It’s important to carry your own soccer gear. Dad says the best athletes do that.”).

As hard as Brock’s death is on me, his parents, his brother and his friends, no one is more destroyed by this than Isaac. He has lost his dad, who would have been a proud coach, teacher and role model. Brock wanted them to take piano lessons together. We were going to learn Latin, as a family “secret language.” Isaac would have learned how to skate backwards like an NHL star, and how to throw a baseball properly.

Isaac doesn’t understand yet what he’s lost, and my job is to support him as he grows older and begins to realize.

And I hope four-years-old is old enough to remember his dad.

Terminal Cancer, Day by Day

Early Exits

15 Comments

On Monday, Brock was so unusually sick that I texted his doctor to describe the symptoms. Brock had slept for over 24 hours, he was so out of it that he could barely speak when he became conscious, and he’d managed to tell me that he felt flu-sick, which wasn’t his normal cancer-sick. Also, there was a hard, angry-red lump on his chest that was getting redder and angrier.

Brock’s amazing family doctor arrived within the hour and diagnosed Brock as having an infection. It was quite bad, and might be septic.

Brock sweated in our bed while his doctor explained the options to me, my dad and Brock’s brother in the living room.

We could:

  • take Brock by ambulance to the hospital so Brock could be given antibiotics by IV (which might not cure him);
  • stay at home and try to treat him with less-effective oral antibiotics; or,
  • we could nothing.  Brock would die from the infection, at home.

Fear not, you normal, healthy people: these would not be your options if you had an infection. You would be whisked off to hospital without the couch consultation.

Brock’s situation is unique because he is already dying. And when you know that a cancer death is looming, our health care system allows you the option to take an “early exit” (as Maggie Callanan calls it in Final Journeys), if you would prefer not to linger.

But knowing this, reading about early exits, and discussing advance care options and Do Not Resuscitate orders with Brock did NOT prepare me for the emotional tsunami of being in this situation.

Obviously I don’t want Brock to die. I want him to live for as long as possible. But I also don’t want him to suffer, and being in a hospital has many downsides for someone as weak as he is. Would they let me stay with him? Would he be comfortable, away from his collection of pillows and Lazy Boy recliner and memory foam bed? Would Isaac miss us too much, and would I be able to be with Brock at the hospital while also giving Isaac the attention he needs at home?

If I chose to keep Brock at home with oral antibiotics, would his family and friends judge me for that decision? Would I have regrets and blame myself if he died?

Luckily (oh so luckily!!) Brock and I had already discussed all of this. He’d made his wishes clear: as long as treatment meant he’d continue to have quality of life at home afterwards, he wanted that treatment. He didn’t want to spend the rest of his life in a hospital, but this infection didn’t carry that risk. He’d be treated, and then (if the antibiotics worked) he’d be back home with us, back to the Brock he’d been 24 hours before. If the antibiotics didn’t work, he would die in the hospital.

I didn’t have to consider all the options. I didn’t have to solicit advice from anyone. I just conveyed Brock’s wishes, and our course of action was clear.

It’s Saturday now, and I’m writing this with Brock sleeping beside me in our bed. He had four courses of IV antibiotics and we spent three nights in the hospital, me curled at the foot of his bed like a cat. He’s on oral antibiotics now, and the angry red rock of infection inside his chest has practically disappeared.

I am so grateful that he told me what to do, long before we faced that decision. I’m grateful that he endured the painful ambulance-stretcher trip to the emergency room, and restless nights in the hospital. We could have lost Brock this week. Instead, we’re spending a lazy Saturday together.

No regrets.