Amy and Ryan Green’s youngest son Joel was diagnosed with Atypical Teratoid Rhabdoid Tumour (AT/RT) when he was just one year old. AT/RT is a rare childhood tumour of the brain and central nervous system. From this point on, Joel would spend hundreds of hours in hospital having his tumour resected along with bouts of radiation therapy that could last up to six months at a time. He had repeated periods of remission, all of which ultimately ended in recurrence of his cancer. Finally, after 4 years spent battling the highly aggressive cancer with multiple recurrences, Joel died on March 13, 2014, aged five.

When a child is sick, parents typically take on a huge amount of responsibility and difficulty in helping them. The siblings of a sick child can also be emotionally affected. Children with ill siblings tend to have feelings of confusion, fear and detachment.1 It is, therefore, important for parents to establish a clear dialogue, which is understandable and retains a semblance of normality within the household. Establishing similar dialogues with siblings is also important in a hospital setting, so too, is understanding the impact it can have.

Amy and Ryan would constantly ask themselves “How much do they understand?”, “How much time do they have?” and “Can they sense it?”. They noticed their children had realised that Joel was “different”. For example, they would remark “Joel is five but he can’t speak, but even two year olds can speak”. In response, Amy would tell her children “Joel is bad at some things and good at others, like everybody else”. Understanding that Joel struggled with speech, she instructed her children that “Joel loves ‘Mwahs’ (blowing kisses) and ‘Bye Byes’ (with hand waving)”. According to Amy, this allowed her to connect her children with Joel, with whom they had previously struggled to communicate. She believed it also made Joel feel less isolated from his siblings. Although Amy and Ryan engaged in not separating Joel from his siblings, as time pressed on, the gap between them ever widened due to the challenges and developmental problems associated with his illness and treatment.

Joel’s deteriorating condition resulted in increased hospital stays and time spent away from his siblings. They were curious about Joel’s condition and would ask “What is wrong with him?”. Ryan believed that “fear is the preservative of cancer” and that relieving some of the fear of the unknown would lessen the burden of the condition.

The family played a lot of video games, which Ryan used to explain Joel’s condition to his other children. “Joel is a knight and he’s away fighting a ‘dragon’ called cancer”, he told them. “Is the ‘dragon’ his tumour?” they would ask, to which Ryan would explain, “Yes and he’s very big right now, so that’s why Joel is away fighting for so long”. He described the doctors and other hospital staff as “super powers” granted to Joel to help him in his “quest to fight the ‘dragon’”.

However, Ryan still believed in being honest with his children, telling them that “Joel was not the first brave knight to fight this ‘dragon’. Many have perished before him but Joel has been fighting this ‘dragon’ for a long time”. This approach was successful in explaining Joel’s illness to his siblings while also helping them understand that it was possible that Joel could die. Another of Ryan’s sons, Isaac, was three years old when he remarked “The ‘dragon’ is going to win, because a baby can’t defeat a ‘dragon’”, showing that Joel’s siblings could understand the potential outcomes of his terminal illness without it being explicitly explained to them. Ultimately Joel’s parents managed to create a fantasy world which not only explained Joel’s illness, but also its potential outcomes in a way that their children could grasp.

Following Joel’s death, Amy and Ryan noticed that their youngest son, Elijah, struggled with where Joel had gone. Amy noticed that Elijah would search the house and ask questions like “Why isn’t he in your tummy?”.2 Amy chose to be direct in answering his questions, explaining that Joel was “in heaven”. Elijah struggled with this answer, they explained, and appeared further confused. Following this, Amy described herself as being terrified at how her children were coping with something like this at a young age.

While he was in hospital, Joel’s siblings were encouraged to visit him and his birthdays were still celebrated as a family. This established a strong connection between the siblings even though Joel was absent from the family home. To continue this connection and ease Joel’s passing, Amy and Ryan still celebrate Joel’s birthday and encourage their children to remember Joel during the best times. They visit a carousel because “Joel really, really loved carousels”.3 Amy uses these coping mechanisms to remember Joel, to “celebrate him” and his life, and to remind her children of the “fullness of life” that connects them to Joel. Amy explains to her children that “even in death, Joel is in heaven living a fuller life, this isn’t the end”.

Amy and Ryan began a campaign to celebrate Joel’s life in November 2014 and to raise awareness of his condition. They produced a documentary, released in 2016 and, in 2014, released an award winning video game called ‘That Dragon, Cancer’.4 In the game, they share a detailed and extremely personal perspective of Joel’s condition. The game paints a visceral and realistic portrait of how a child’s illness can be articulated to young siblings in a way that is fantasy yet realistic and human. The manner in which Joel’s family coped with his illness should encourage medical students and doctors to develop a greater understanding of, and an empathetic approach to, helping siblings of sick children deal with the burden of illness.

01. Fleary S, Heffer R. Impact of Growing Up with a Chronically ill Sibling on Well Siblings’ and Late Adolescent Functioning. ISRN Family Medicine. 2013;2013;1-8.

02. Joelevangreen.com [Internet]. Joelevangreen.com.2018 [cited 15 November 2018]. Available from: http://joelevangreen.com/

03. Green A. Parents’ perspective on explaining an illness to children with a sick sibling. 2018.

04. The Game [Internet]. That Dragon, Cancer. 2018 [cited 15 November 2018]. Available from: http://www.thatdragoncancer.com/