The caped crusaders tackling childhood cancer

When Sandra Sargent brought her daughter Anna, then aged nine, to a supermarket one day in April 2013 to buy a birthday present to take to a party that afternoon, "she was whingeing and moaning, which would have been very unlike her".

Anna went to the party but was still complaining at home in Dundrum afterwards about a sore leg and her mother decided to take her to the children's emergency department at Tallaght hospital. They took an X-ray of her leg, after which the radiographer asked, "Where is Anna's wheelchair?"

Thinking that a bit strange, Sandra said she didn’t have a wheelchair. It was then a doctor came out and said she didn’t know what was wrong with Anna’s leg but it was something serious.

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Lisa Comer gets behind the camera. Photograph: Paul Gallagher

She was kept in Tallaght for five days, until they could get her into the children's hospital in Crumlin, where she was diagnosed with Ewing's sarcoma, a rare bone cancer.

It was devastating news “out of the blue” for Anna and her parents, who also have three sons, then aged six, 12 and 15. Looking back, Anna, now aged 13, says this period, before her treatment began, was one of the worst times.

“It was a very bad place for me to be in because I didn’t understand anything that was going on. I had never heard of anything like this happening to children.”

While she knew of the illness, it was through campaigns on breast cancer or older people having it, she explains. Now she thinks “it should be a bit more publicised that it can happen to children”.

Treatment

Initially it was feared Anna would lose her leg but surgeon and former Olympic swimmer Gary O’Toole was confident, says Sandra, that he could just take out the affected bone.

After six to eight sessions of chemotherapy, Anna’s fibula was removed in November 2013 and she spent six weeks in a cast from toe to hip. In January she started 28 days of radiotherapy at St Luke’s, which overlapped with a recommencement of chemotherapy.

This was “another low point”, Anna says, after the surgery, knowing she had to go through the same chemo treatment because it had made her very sick the first time.

Anna missed all of fifth class at national school but returned for sixth class. On the day of her 12th birthday, she asked her mother had she signed her up for CanTeen Ireland – a support group for young people aged 12-25 who have, or have had, cancer.

An average of 137 cases of cancer a year were diagnosed in children between 1994-2014, according to the latest National Cancer Registry report, published at the end of February. Now it's about 163 new cases a year, most likely due to improvements in diagnosis.

The report also shows that death rates for childhood cancer here are among the lowest in Europe. The five-year survival rate now stands at 81 per cent.

CanTeen, through weekends away and day support meetings, gives youngsters the chance to meet others who have gone through similar experiences.

"Cancer takes so much from them," says CanTeen co-ordinator Evelyn Griffith. "It does really devastate them and, self-esteem wise, it's so difficult.

“Hospitals look after the illness and get them well but they can’t give the kind of social support that we can. It’s teenagers supporting each other.”

Cultural needs

As part of its programme, CanTeen has been working for the past three years with the children’s arts and health organisation

Helium Arts

on the Two Suitcases project, in which youngsters get to make their own films with support from professional filmmakers and artists. The project was set up in 2012 and aims to address the cultural needs of teenagers living with illness, who may miss out on other opportunities to participate in such activities.

The feeling that she had missed out on a lot of fun things in her older childhood was one of the reasons Anna was keen to join CanTeen, as she had heard it was “pretty cool”.

“But then I had the question if we are just going to sit around in a circle and start talking about ‘it’ then I don’t want to join. But when I went on my first day trip, I just knew it wasn’t going to be like that.

“Everybody was smiling and laughing and it was as if we were all completely normal and nothing had ever happened because we were all so happy. We didn’t have to talk about ‘it’ if we didn’t want to.”

Anna is one of 10 CanTeen members who attended a weekend to shoot the latest Two Suitcases film – Planet of the Capes. It is on the theme of superheroes, devised at earlier workshops, and also features one "President Ronald Thump".

For Anna, it is the autonomy that she and her fellow teenagers have in creating such films that matters.

“We can all express ourselves and give our own opinions. Because when you’re sick you don’t have an opinion on what happens to you or what medicine you get. The option the doctor is giving you is obviously the best, so you can’t say anything.”

Experience of illness

Griffith can see CanTeen members’ experience of illness reflected in these artistic collaborations. Take, for instance, their exploration of the theme of superheroes. Some of them viewed radiotherapy and chemotherapy as a process from which they emerged stronger people.

“Rather than being weird or different because you have cancer, it has actually given you something better in your life,” Griffith explains. “They all said it is bad having it, but they wouldn’t change it; it is part of who they are.”

They are definitely more empathic than the average teenager. “They care about each other and look after each other so much. They understand what it is to be different, to be ‘the cancer kid’.”

Anna says she wanted to be “a normal person but because I wore a bandana, I was different. I was singled out.” She created and plays the superhero Cognita, whose powers include being able to read really fast, to turn back time and being the world’s cleverest person.

“I would love to be able to read, but I just get very disinterested very quickly,” says Anna. As for wanting to turn back time: “Because of what I had gone through, now looking back I have no doubt that cancer has changed me and other CanTeen members.

“A lot of us thought of ourselves as superheroes because of what we had gone through and achieved so much at such a young age.”

Two diagnosis

Lisa Comer

has come through cancer not just once but twice. She was only 15 months old when she was diagnosed with leukaemia in August 1997 and needed a bone marrow transplant. Then, eight years later, an inoperable brain tumour – probably a rare side effect of the total-body irradiation that she needed for the bone marrow transplant – was detected.

“The second time around I wasn’t supposed to make it,” says Lisa. However, the legacy of her illness and treatment includes diminished height, learning difficulties and a vulnerability to osteoporosis.

Standing just four feet one tall, she can’t avoid being noticeably different, even if her cancer is long gone. So for her, choosing to play Superwoman in the film was escapism.

“Acting as a superhero got me out of my normal, everyday life. I go through day-to-day drama at college – people giving me grief about my size and stuff.”

She recalls a guy “coming up to me and saying ‘oh look at you, you are a little shrimp’. But a friend said ‘Hold on a second, I know what she has been through, so back off now.’”

Lisa is doing a Step Up course at Rosslyn Park College in Sandymount, where she is very happy.

“When I was in secondary school I thought I had to always wear a mask. But when I went into my college, it was ‘they get me’. They have been there, done that, worn the T-shirt. I could take my mask off, discard it and put it in the bin. It’s gone and it’s not coming back.”

Salivary gland

Unlike Lisa, nobody looking at

Leah Murphy

(15) from Cork would know she has undergone surgery for cancer. Hers was a parotid tumour – a cancer in her salivary gland that was diagnosed in November 2014, when she was 13.

“She was tired and a little lump started growing in her neck and I actually thought she had mumps,” says her mother, Katie. Then it was thought she had a stone in her salivary gland, as that type of cancer is very unusual.

“They don’t have any chemotherapy that works on it, so they just remove it.” Radiation therapy would normally be given to older people but because Leah was so young, she explains, it wasn’t advised. “So it was literally watch and wait.”

Leah goes for regular check-ups, says Katie, who believes she will never be able to relax about her daughter’s health but is determined to not treat her any differently because of it.

“We just felt if everything was normal, she would not be as worried or as upset,” she says. “So this house was very normal, very fast.”

Having drawn a blank in searching locally for support services tailored to teenagers, Katie found CanTeen on the internet.

“The difference in her after she has been away with CanTeen is just phenomenal. She is in great spirits,” says Katie who feels it is only very recently that Leah is back to her normal self, partly because “she has had really good luck in the last few weeks”.

The Make a Wish Foundation organised a trip for Leah, along with her parents and brother, to Los Angeles to meet the cast of her favourite TV programme, Criminal Minds, at the beginning of March. And in April the Transition Year student is off to China on a UCC study programme.

Leah plays a journalist in Plant of the Capes and says she enjoyed how the making of the film gave her "a chance to be creative". Although she doesn't think cancer is a big part of her life – just something she got over – she agrees that she is probably more mature as a result.

Just as Leah was not allowed, says Katie, “to play the cancer card”, nor was Anna cut any slack either. Sandra recalls the consultant saying at the time of diagnosis that “at the end of all this, you want a happy, healthy child who is not over spoiled”.

She resolved at that moment to continue to treat her daughter just like her three sons and, if she was bold, she would be chastised.

“We didn’t make any allowances for her.” She was spoiled rotten in other ways, by those outside the immediate family, “but when it came to the discipline end of it, there were no favours”.

“Definitely not,” echoes Anna.

Planet of the Capes will have its premiere at a free public film and music showcase at The Sugar Club in Dublin on April 1st. Booking information on helium.ie For more information on CanTeen Ireland, see canteen.ie or tel 01 872 2012.

swayman@irishtimes.com

Being a superhero

Script mentor Ben Murnane (32), who has had a chronic illness from childhood, certainly identifies with the “superheroes” theme chosen for the latest film in the Helium Arts

Two Suitcases project.

“I was very excited when I heard that was the theme for this year, as it chimed with some of my own experiences growing up. One of my main interests has always been superheroes.”

Murnane from south Dublin was nine when he was diagnosed with incurable Fanconi anaemia and, at age 16, he had to have a bone marrow transplant.

“When you are going through all that and living with a weak body and don’t have a lot of confidence in your own body, this fantasy of a new body, the perfect body, which for me was certainly the Superman archetype, has maybe an additional power.”

He has, generally, been very well since the transplant, although he has a high risk of developing cancer and has had one “brush” with the disease, when a basal carcinoma had to be removed from his nose. Life expectancy for somebody with Fanconi anaemia is now 33 “but the good news is that every couple of years, it goes up”, he says.

Fanconi anaemia continues to be a big part of his life – "maybe in a way that I didn't expect". It led to the writing of his 2008 memoir, "Two in a Million", which in turn became a pilot for the Two Suitcases film project that he now works on. Its name is derived from a nurse's comment to him that "when you go into hospital, you take two suitcases with you; one to carry your clothes and another to pack away your dignity".

Then a speaking engagement at a Fanconi anaemia fundraiser in Canada resulted in him meeting his fiancee Sandra.

“What is wonderful about our relationship and the fact that we both have Fanconi anaemia is that we don’t have to talk about any of it because we kind of understand.”

While he saw superheroes as escapism, he also identifies with the view of CanTeen members that surviving cancer has given them special powers.

“In many ways I have been very lucky to have the experience – coping, living and, in some ways, overcoming a serious illness, because I think you learn so many things about life.” It makes you focus on its transience.

“I am always surprised or astonished that people aren’t constantly aware of their mortality. How could you not feel this great sense of urgency that life is this immense gift?

“I hope that I am filling the day with the things that I want to be doing. There can be a hedonistic aspect to that as well but I try not to look at it that way. If I had 10 years, what would I want to do with those 10 years and how am I working towards that today?”

However, he’s sceptical of “live in the present” rhetoric “because the present means nothing unless you are looking towards a future”, he adds. “Living in the present can be making sure you are working towards the future every day.”

Planet of the Capes film trailer: https://youtu.be/Z0_bXYlOcvw