The Helena Effect

by John KirkSeptember 20, 2019View more posts from John Kirk

I don’t use the word “super-hero” lightly when I talk about my daughter, Helena. While they have their origins, they also have an extra something special that sets them apart. My daughter is someone special; she is a cancer survivor, an advocate bent on obtaining the best care for children with cancer in our country and she is a super-hero.

Our Helena was born into a world of geeky fandom. Her first words were “Mum” and “Dad” – but a very close third were inspired by a head bust of the Lord of the Sith from Star Wars himself, Darth Vader. However, in her infant’s voice, she pronounced it “Dar Dader”.

She then followed up on the discoveries of other statues and comics and all the usual nerd-culture bric-a-brac you’d expect to find in my den. She met Cthulhu (“tooloo”), the dread god of H.P. Lovecraft’s horror series; she knew who Wolverine was and yes, with our last name being Kirk, she could recognize William Shatner and Leonard Nimoy by the time she was four.

Picture of Wolverine

I was a proud geek dad. I still am.

When Helena was three and half, she was diagnosed with High-Risk Acute Lymphoblastic Leukemia. It was, as one would expect, a devastating diagnosis. She presented symptoms of lethargy that would somehow seem to disappear by the end of the day and she had an ear-ache, which we were treating with antibiotics. We had to take her back to our pediatrician who psychically knew that there something wrong. She asked us to get bloodwork.

By the next morning everything in our world changed with the news that Helena needed to get to the emergency department of The Hospital for Sick Children (aka: “Sick Kids”) here in Toronto.

We have been ever grateful that we live in the same city as one of the best pediatric hospitals in the world.

Helena’s treatment plan would last for five years. Half of that time would see her get over 840 days of consecutive chemotherapy, surgeries, spinal taps and other procedures, some of which were very painful.

Helena often experienced great loneliness. During the periods of immunosuppression, she would be unable to have playdates with other children. A cold could be devastating to her so her mother and I were often the only playmates she would have for days and weeks at a time. When I was caring for Helena full time, I relied on my love of fandom. We watched films and cartoons; read super-hero comics, built LEGO together and I read science fiction and fantasy stories like Lord of the Rings and The Hobbit to her. While she was lonely for another kid, these were still some very happy moments that bonded the two of us together.

This wouldn’t be surprising news to any parent of a child with cancer. They know all too well the solitude, the sacrifice and suffering of their own superhero children’s limits of endurance and their incredible ability to find joy in their times of trials. That in itself has to be their greatest super-power.

Helena was no different in this respect, but she really never gave into despair. Despite her emaciated little body, her immune-suppression and her hairless head, Helena made people smile and laugh simply through her sense of eternal optimism. She was inspiring. Too often we heard people remark on how she managed to leave everyone she met with such a sense of happiness.

We called it “The Helena Effect”. Her teachers could see it; our neighbors and friends knew that Helena wasn’t made different by the cancer, but that she was different, in spite of it.

By the time she was six, we talked about the importance of her care; how so many people worked together to help her get better and how important it was for us recognize that by giving something back to the organizations and people who supported her in her battle with cancer. We volunteered at events and it was around this time that she began to speak to organizers and media people about her cancer.

She was invited to become a media ambassador for Sick Kids and to speak in public at fundraising events for the hospital. She then began to speak for other organizations like the Starlight Foundation, Camp Oochigeas (an overnight camp for children with cancer) and Childhood Cancer Canada. She developed confidence and enjoyed being in front of a camera and interacting with members of the Media and celebrities. She left all of these people with her personality and they were inspired to do good things like volunteering their time or financially sponsoring the organizations Helena represented.

(This is a video commercial Helena was in talking about her cancer and the care she received at Sick Kids. https://www.youtube.com/watch?v=MVHMWU03ObE)

As Helena grew healthier, we began to visit comic conventions and comic shops together. She was getting stronger and despite her cancer, she never felt like she had to hold anything back. She was a confident kid whose personality continued to make an impression on the people she met.

Including comic creators, to my joy. Helena met and made impressions on talented and legendary creators like George Perez, Walt Simonson and the late Joe Kubert.

Joe Kubert’s career spanned fifty years. He was a legendary artist and comic book writer who set up his own school of comic book art. His sons Adam and Andy, renowned comic book creators in their own rights were with him on this visit to Toronto as well. I had completed a couple of celebrity interviews for a website I was writing for and we stood in line to get some of Joe’s work to get signed.

As we were in the line, we noticed a sign that said that Joe would be generously raffling off a commissioned sketch with the raised funds going to Sick Kids. Helena got excited in line and that attracted the attention of one of the handlers. She proudly declared herself to be a Sick Kids Ambassador and so they brought her over to meet Joe who asked if she would draw the winning ticket.

Joe and Helena must have spoken with each other for about half an hour. It was wonderful for me to see a giant in the comics industry completely enjoying a conversation with this little six year old girl. I don’t know everything that they talked about but Joe asked her who her favorite super-hero was. Without any coaching, Helena answered “Hawkgirl”.

With a proud smile on his face. Joe told Helena that he created Hawkgirl back in the 1950’s. After Helena drew the winning ticket, they hugged and she left saying “Bye, Grandpa Joe”. Joe passed away the following year.

Signed drawing of Wonder Woman from George Perez

Signed drawing of Wonder Woman from George Perez

Helena speaking with Joe Kubert

Helena speaking with Joe Kubert

This is one of the purest and sweetest memories I have of my daughter during her treatment.

Helena is now thirteen. She is heading into high school at the time of this writing. She is an honors student, a blue belt in Hapkido and Karate and she still likes to describe herself as a geek. She loves to tell people about the time when she met William Shatner and she proudly flashes the Vulcan salute from Star Trek.

But Helena’s voice is now being heard at the highest levels of our government. Being a childhood cancer survivor means that you had friends who didn’t survive. Helena has lost many of these cancer warriors and though the Canadian health care system is the envy of the rest of the world, there are still some inequalities in the way that kids receive treatment for their cancers in Canada.

After being chosen by Sick Kids to be their 2017 Children’s Miracle Network representative to the CMN Conference in Florida, Helena got a chance to visit our nation’s capital, Ottawa, and meet with members of government including several Members of Parliament, the Minister of Health, the Minister of Science and even the Prime Minister. She used this opportunity to ask for changes in the federal government to ensure more kids survived cancer like she did.

Continuing her work, Helena has her own advocacy group called “Helena’s Hope”. She put her own website together (www.helenashope.com) and has the support of eighty more Members of Parliament and Cabinet Ministers, thirty leading childhood oncologists and 31 cancer organizations. Her goal is to allow kids greater access to research-driven therapies, clinical trials, more specialized and precision-medicine procedures no matter where they live in Canada or how much money their families have.

Helena was asked to speak at the All-Party Women’s Caucus last year. She has also participated in high-level roundtable discussions between various cancer organizations, other advocacy groups and government agencies. She recently spoke at the Rally for Kids with Cancer fundraising event in July for both Sick Kids and Camp Oochigeas. Introduced by the CEO of Sick Kids Foundation, Ted Gerrard, her speech was only part of a very successful event, but the “Helena Effect” was in full force (https://www.youtube.com/watch?v=Zj88MYPppLM&t=11s).

As much as I love the idea that my daughter got a sense of enjoyment out of following nerdy pursuits, and I may even be entertained by the fact that perhaps she got some sort of inspiration from the heroic ideals in comics and fantasy, Helena came into being a superhero in her own. My pride withstanding, I wish I could take credit for supporting her but the truth of the matter is she chose to walk this path on her own. The Prime Minister of Canada told her to not stop doing what she is doing and she isn’t, in fact she has an army of people supporting her from Coast to Coast now.

Helena’s super-power is her unstoppable sense of commitment. She believes that we can all do better and that belief is what stands out in her speeches, her presentations and her conversations with politicians and health policy advisers. Her perspective is simple and indisputable: she survived and she needs help to make sure that more of her friends do as well. She speaks truth to power and reminds them that she is just 13 years old, and they have the power to make the changes so that more Canadian kids will live long, healthy lives. She calls on leaders to be super-heroes and to use their power for good.

Like I said, my daughter is a super-hero … and this is her origin story.

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John Kirk is a popculture journalist, who immerses himself in the world of Star Trek, super-heroes, and everything a fan of nerdculture would love. John has interviewed many of the creators and personalities who live in this world and whose work can be found in publications like the Eisner Award-winning comics journal, BACK ISSUE, and websites like Trekcore.com or Popmythology.com. If it’s geekworthy, John probably knows it and has written about it.

Follow John on Twitter: @capjkkirk

:-)