By Leena van Deventer
“We love you too.”
“Awesome. Tread carefully, mate. Look after yourself and stop if it gets too much.”
“Ok – I’m on it!”
“Eee! Be careful.”
“I’ll be OK. :) We’re in a good spot, might be an interesting way to reflect on the battle we’ve had and (more importantly) the triumphs so far.”
And with that, I asked my friend to play That Dragon, Cancer with me. My friend whose 6 year old son had a malignant brain tumour the size of a man’s fist.
This piece originally appeared 7/20/16 on Kotaku Australia.
I met my friend Phil Tann and his wife Jo through video games. We’d play Team Fortress 2 almost every Friday for around 2 years, with a group of friends we’d all met on a games forum. Video games brought us together.
Phil and Jo had a baby son, Alex. I had a regular spot on community radio and they would listen together. Over time, Alex would recognise my voice. They were in Adelaide, and I was in Melbourne. When I met them for the first time Alex said “I love you Leena”! and I loved him right back. When we think of 2 year olds we instantly think of the terrible twos, but this does a great disservice to their tremendous capacity for love and affection.
In 2012, a few months before his third birthday, Phil and Jo started noticing something was different about Alex. He was walking into things; Jo suspected he couldn’t see properly. He started vomiting for no reason.
They amassed 5 trips to the emergency department in 11 days. After those 11 days, they received a diagnosis that would make the stomach fall out of any parent: Alex had a cancerous brain tumour over 10cms long. The pressure this put on his brain gave him tunnel vision.
Eventually it would take his sight.
Alex is now six. He has suffered. Months of chemotherapy, weekly radiation treatment, infections, bilateral pneumonia. His hearing has been affected, but when I last visited the family, we still played hide and seek together. His laugh was still as infectious as ever.
Ryan and Amy Green are the family behind That Dragon, Cancer. They had a similar realisation with their son Joel. He started vomiting constantly and Amy knew something was wrong. Then their journey began.
Joel was soon going through many different therapies to try and recover from the cancer, and the Green family started thinking about making That Dragon, Cancer as a kind of memoir of this intense experience. Diarising. Sharing. Asking people to bear witness to it. They weren’t sure whether Joel was going to make it out alive.
“When we began making That Dragon, Cancer, we realised that we were living in a situation that no one we were close to had ever lived in. We didn’t have any friends who were raising a child that was dying,” Amy explained.
“We wanted to share the world we were living in, and the joy, sorrow but mostly hope that came with the specific circumstances we were dealing with. More than a tool for others, it was self-expression and an artistic outlet for our emotions and feelings.”
The game feels like a series of small testimonies to what happened during Joel’s treatment. A scene where he was suffering from dehydration and constantly crying is difficult to play.
It was difficult to create.
The Green family eventually decided against using Joel’s actual cries. It felt too confronting. The laughter and giggles are all his, though. We can watch Amy and Ryan disagree on this decision in the documentary Thank You For Playing, by David Osit and Malika Zouhali-Worrall. Ryan is steadfast; he does not want the player to hear Joel suffering.
Amy tries to unpack why he feels okay with using Joel’s laugh but not his cry. Ryan doesn’t know why. He doesn’t want to know why, and he doesn’t want to budge. Amy forgoes her gentle questioning to lean in for a cuddle.
“The transition from normal, happy life to OH FUCK was as sudden in the game as it is in real life,” Phil said.
In That Dragon, Cancer, the parents sit in a doctor’s office to receive Joel’s diagnosis. As reality hits home, water begins to rise in the room.
For Phil: “It was so overwhelming.”
“We cried a lot and I remember the fear and I remember feeling physically ill. I didn’t know whether to fall into a heap in the corner and cry, or vomit into the nearest bin. I did both.”
When treatment starts in-game, we see Joel being cuddled in his hospital room. His father looks out the window.
“The moment where Joel was on his dad’s lap, with the chemo being administered… Sitting as a parent, willingly let[ting] someone poison your child is horrible. You know it’s going to make them REALLY sick, but you also know that the alternative is not one you wish to explore. I remember feeling trapped by this, scared and like a failure: I couldn’t protect Alex and I couldn’t fix it either. This screenshot really does depict the feelings well, you’re inside, feeling trapped, and outside looks amazing.”
Phil learned that while That Dragon, Cancer had difficult and heart-wrenchingly familiar moments, there was an odd comfort in knowing this is not an experience that only his family had to endure.
“There were a couple of moments where I had to deliberately skip through to the next because they hit really hard having been there, but on the whole I tried to immerse myself in the game. At my desk after the kids were asleep, headphones on, to really delve in deep.”
I was proud of my friend for continuing to play. I questioned why I’d asked him at all. He reassured me: this was an experience that had tremendous value. Being a parent myself, Phil even asked how I was going while playing, acknowledging that while I have no experience with a sick child, it’s still incredibly difficult to play and imagine this experience happening to my family.
He’d been through all this and he still wanted to make sure I was okay. I was gobsmacked. I felt guilty that this gave a man already dealing with so much emotional labour another job—comforting me.
We kept playing, together.
Phil and Ryan both felt like they were cut off from the outside.
“You feel like you want to go out, but you can’t … you could bring germs back in and make your child sick, your child may need you and you’re not there,” Phil said.
Both families had very different ways of dealing with this isolation from the outside world, with the Green family turning inwards toward their own faith and religion, and the Tann family focusing on the kindness of friends, family, and nurses.
“I felt a lot of guilt for not knowing, realising or recognising sooner that there was something seriously wrong with Alex. As a Dad … you feel like your role is to provide, protect and fix and I (through no fault of my own) can’t protect him from this fucking beast and I can’t fix it. I’m not a religious person so I’m not into praying or anything like that, so my comfort mainly came from friends and family.”
The Green Family are very religious. Its influence on That Dragon, Cancer is overt. Religion is unmistakably a huge part of their lives and their support systems.
Bearing witness is an important thing to many religious folk. Testifying to their higher powers, witnessing their faith, talking about it and being open with their pain and their trials. The Green family did this through the game.
“I think, sometimes, the most discouraging part about losing someone you love, is that the people who mattered so much to you are often forgotten by the world,” Amy said.
In the wake of That Dragon, Cancer’s release, hundreds of people have reached out and shared their own stories.
“It’s an incredible honour, not only that they would support what we did, but that they were willing to memorialise their children and their spouses and their siblings in our work,” Amy continued. “We’re very grateful that they joined us in building a shared memorial together.”
One particular person sticks in her memory. A man had recently lost his nephew, and wanted to play the game. “It wasn’t finished yet, but he wanted to get his hands on whatever was at a playable stage. I was hesitant because, at the time, only the Dehydration scene was done and it was a very difficult emotional scene. He still wanted to play, however, and it turned out to be a very cathartic experience.”
I asked her how she felt about Phil playing with me. I was concerned about whether he would have a cathartic experience or not. I was worried about hurting him, upsetting him, or making the indelicate comparison in lived experiences between his very alive son and this little boy who had finished his fight.
“Sometimes when people want to play our game … I almost want to dissuade them. When Joel was battling cancer, I didn’t like to read about children that were losing the fight. I didn’t want to spend much time contemplating how a big loss would feel. It felt like a time to just have hope, to just cherish him and every little thing he did.”
The Tann Family also have a way of diarising their experiences, in the form of posts on Phil’s blog. This serves as a way for both Phil and Jo to talk about their feelings and purge a lot of what concerns them, and also a way to keep everyone updated on Alex’s condition.
“It’s painful to have the same conversation twenty, thirty, forty times or more to keep everyone in the loop. That’s why we started using my blog the way we did.” For both families, it was important that people bear witness, and that their struggle isn’t happening in isolation.
“We sometimes call it a testimony game,” Amy told me. It rings true for both families. This notion of testifying that these children exist, that they are loved and taken care of, is a fundamental bind between these two families.
“We appreciate when someone says that a part of the game really represented how they felt in similar circumstances. It reminds us that some parts of our journeys are the same, even when the exact details are different … it’s okay to be human and have doubts and worry.”
I kept thinking — and it’s scrawled over all my notes: “A video game did this”.
To be closed is to be isolated – to be open is to find connections with others. A video game did this for my friend and his family.
I asked Phil what he thought about the complaints: the fact some people believe That Dragon, Cancer is exploitative.
He wondered if those people have seen, been involved with or had a child go through cancer treatment.
“In some respects it does feel like a really hardcore game. No certain outcome, it’s unpredictable and if you make the wrong decision you lose. You might just lose anyway or you think you’re going to lose but for some reason you don’t. You’re on 1HP, keep taking hits but don’t die. I feel like That Dragon, Cancer is a new way to tell a story and will hit a different audience to a book, movie or TV show and awareness will help people understand.”
Faith plays a big part in both of these family’s stories. For the Greens, it’s their unshakeable faith in God. As a non-religious person I found that foreign, but ultimately warming. I was so glad they saw the world in a loving and hopeful way. They didn’t go through their ordeal in closed isolation.
For the Tanns, it’s an optimistic faith that eventually people won’t need to go through this anymore.
“Hopefully, one day, cancer will be a thing of the past. ‘You’ve got cancer, take 2 of these and call me in the morning if symptoms persist!’ I’m so glad he can see the world in such hopeful ways, and not close himself off to isolation.”
When I first thought about showing this game to Phil and Jo, it wasn’t as simple as a quick and crass connection between, “Oh their child had cancer in the game? I know a kid with cancer!” It felt like a way to connect with my friend by saying, “I don’t know what you’re going through, and it must be awful and lonely, but these people might.”
I wanted to bring these two families together in the hopes that they may feel even the slightest bit less alone, and if a video game can do that, then let’s try, openly and gently.
I asked Amy if they made the game for people who wanted to know what their cancer journey was like, or if it was for families who had shared that journey with them and also had experience with childhood cancers.
“In many ways what we had in mind, rather than a specific audience was the idea that we wanted to share our experience and the things we were learning with other people.”
“Phil understood intuitively: I feel like it was their outlet as part of the mourning process to help enlighten people outside of what becomes quite closed circles during treatment and recovery to what actually goes on.”
At the end of my discussions with both families, I asked the same question. What would you like to say to The Green Family/The Tann Family?”
“Phil: I am [grateful], if for no other reason than to bring awareness of the battles kids with cancer go through to a new audience. It would have been very tough to do so I admire you for being a part of that and have no idea how you did it. I’m sure there will be families out there that have felt alone, so I hope they see this and get some comfort from it.”
“Amy: I hope your family can cherish all of the moments you share together and we will pray also for a miracle for Alex and for your family.”
Through tears, I texted Amy’s message to Phil, and crossed my fingers (my version of praying) that he would find it helpful.
“That message from Amy … wow … for someone who lost their child to this hateful disease to wish us well as we continue our journey means more than I could possibly put in words. I think there is an unspoken empathy between parents of kids who are/have battled cancer, regardless of the outcome. Their well wishes are hugely touching and really do mean more than words can express.”
A video game did this.
The Little Heroes Foundation has been an enormous support for the Tann family through Alex’s journey with cancer, and have gone above and beyond by setting up an initiative called Alex’s Playground. Children undergoing cancer treatment often cannot visit communal playgrounds due to ill health, or fears they could come in contact with potentially deadly viruses and infections. This initiative is raising funds to supply families with their own backyard playgrounds so their children can play safely and close to the comforts of home.
Payment for this article has been donated directly to the foundation, and you can give generously to this worthy cause here.