‘I have lots of other things going on. I am not just the cancer girl’
Cancer is not going to stand in the way of this teenager, who is looking forward to a future of art and writing
Caoimhe McDermott, with her mother, Maureen, in her studio at home in Ballina, Co Mayo. Caoimhe’s positive attitude has helped her cope with being diagnosed with cancer twice. Photograph: Henry Wills
Maureen McDermott rolls her eyes when the Leaving Cert is mentioned. “The Leaving Cert is not a huge life event,” she insists. Her 19-year-old daughter, Caoimhe McDermott Quinn, is awaiting her exam results . “It is part of life. If it does not go the way you want, there is another way. There is always another way.”
Caoimhe is more tolerant of the national preoccupation with the exam, although it could seem ridiculous to someone who was diagnosed with cancer at the age of 12, and again when she was 16. “People’s life experiences are different. Their problems and their troubles are as valid as mine,” she says of those whose are traumatised at the thought of the exam results.
Caoimhe did her Leaving Cert on a laptop, as she was fitted with her prosthetic arm after getting bone cancer as a child. As a 12-year-old she was faced with the prospect of having her right arm amputated, but her mother’s theory that there is always another way proved true that time.
A few years after she faced down the bone cancer, Caoimhe was diagnosed with chemotherapy-induced, life-threatening acute myeloid leukaemia (AML). “We were told we would know within a month if Caoimhe would make it to her 17th birthday,” recalls Maureen. At that time, she was told that just three cases of AML at Our Lady’s Children’s Hospital, Crumlin had survived longer than 25 years.
As a mother who had set up a breastfeeding group, railed against junk food, and didn’t drink or smoke, she found herself being offered palliative care for a child whose cancer had been caused by the chemicals needed to fight an earlier bout of the disease. But Caoimhe and her mother seem instinctively to steer away from “why me?” syndrome.
“I got cancer when I was 12 and again when I was 16: two important times in [my] life, so it’s not that I want to forget about it. But I have lots of other things going on. I am not just the cancer girl, ” says Caoimhe.
No more cartwheels
Maureen remembers feeling that some medics were not taking Caoimhe’s problems seriously, and being surprised at the line of questioning some hospital staff were taking. Caoimhe’s parents were having marriage difficulties and “they thought she was looking for attention”, says Maureen.
But she demanded an X-ray, and when an orthopaedic surgeon spotted that the bone was grey, the cancer nightmare began. “A doctor who had been giving me a hard time apologised, and I remember saying, ‘Learn from it: trust a mother’s intuition.’ ”
Maureen says Caoimhe had just turned 12 when a consultant sat her down “and told her everything” but the teenager doesn’t remember much about that time in her life. “I knew that people with cancer died, but I was apart from the reality,” she explains. “It was disassociation. I don’t actually remember anything about the first cancer. I just sat on my bed and watched TV and got an American accent.”
She does remember the consultant asking if she had any questions about the tumour on her humerus, “and I asked would I be able to ride a bike”. She was told that her right arm would be hanging down and she would be able to move only her left hand. “My tumour measured 15cm. He started talking about amputation.”
The amputation of Caoimhe’s right arm was pencilled in for July 2008 and Maureen remembers people responding to her outrage by asking “Is she terminal?”. She believed that a teenager who loved art and dancing “might as well be dead” if she lost an arm.
And so the quest for a second opinion and another way began. The house was remortgaged and a limb salvage was carried out in Birminghman Royal Orthopaedic hospital. Caoimhe’s humerus was replaced by a prosthesis, saving her hand and elbow function, and much of her shoulder function. “I can’t lift my right hand over my head now. But I am not recovering: I have recovered,” says Caoimhe.
Leaving two small children at home while she and Caoimhe were in Birmingham was an ordeal, despite the support of her ex-husband, family members and good neighbours.
Before the surgery in Birmingham in 2008, Maureen had forged close bonds with other terrified parents in Crumlin hospital who kept vigil as punishing chemotherapy drugs poured through their children’s veins. “There were times when she was squeezed into a 20ft by 10ft room with a two- or three-year-old, where they had to fit fold-up beds for parents,” remembers Maureen. “Both kids would be on IVs and have a commode beside them, which the parents would bring into the sluice room to empty.”
There were no shower facilities for parents but Maureen was always careful to put on her face before the doctors did their early-morning rounds, if only to reassure her daughter. “I realised that if I was up and dressed and had the make-up on, I was keeping things normal for her.”
Unwell after clean bill of health
Before the diagnosis, she says, “I was so tired I did not want to get out of bed.” One night Maureen came home and found Caoimhe asleep, sitting up in bed. Her hip was so sore that she could not lie down.
Doctors were not optimistic when the AML was diagnosed but once more Maureen went into battle mode. Caoimhe’s survival depended on just one dose of chemo. If it made her leukemic cells drop substantially, to below 20 per cent, she could have the bone-marrow transplant she desperately needed. “I remember thinking, Why can’t they just give me a second dose?” says Caoimhe, but this was not an option.
It was November 2012 and as Caoimhe struggled through the punishing episode of chemotherapy, Maureen put up the Christmas decorations early, fearful of what lay ahead.
Once again friends rallied and a series of fundraising events were organised throughout Co Mayo. Maureen was adamant that if the transplant was feasible it would not happen in Ireland, partly because she “had made so many friends in St John’s ward in Crumlin who had lost their babes that I could not face going back there”.
Seemingly to everyone’s surprise, the chemotherapy worked and the bone marrow biopsy showed that her leukaemic cell level was below 1 per cent.
Maureen discovered that University College Hospital London had a specialist centre for young adults with cancer who needed transplants, and a friend gave her the money to fly over. The rollercoaster continued when a bone-marrow match could not be found. “All the family were tested but none of us was a match,” recalls Maureen.
A double umbilical cord transplant became Caoimhe’s only hope: as an adult, she needed two cords. Ten years earlier, when her sister, Aodhamair, was born, Maureen had asked for her baby’s cord to be stored but it wasn’t possible. The search was successful: one of the donor umbilical cords had been frozen for 13 years, and the other for eight.
“The first day after the transplant was the worst day of my life,” says Caoimhe. “I had such pain and cramps . I was screaming that I was going to die. I eventually fell asleep at the bottom of my bed.
“After a week I was fine for a while, but then the pain got really bad again. I was too sick to care. I watched cooking channels all day. I watched a lot of terrible daytime TV.”
As a child, Caoimhe devoured books, but for a long time after the surgery she could not read. “Then I started to reread Harry Potter. It was like comfort food. I remember I used my Kindle and phone as a security blanket so that I would not have to talk to people. I did not want people to look at me. My social skills went out the window.”
Certain details from this period of her life stand out. “I cannot stand the scent of lemongrass because my mum used it to scent the room with it. I cannot stand a certain shade of orange because it reminds me of the chemotherapy.”
The teenager says that after months in the London hospital she became institutionalised. “Mum used to take me out in the wheelchair to Hyde Park, but I felt very anxious there.”
Maureen remembers feeling torn emotionally and physically as her two younger children – Fergus, who was 14, and 10-year-old Aodhamair – were cared for by their father during the five months they spent in London. “It was traumatic for all the kids. The whole family dynamic changed. I spent up to €800 a month on phone calls.”
Caoimhe is philosophical about the cards she has been dealt. “I try to be positive. Being positive can change so much about how you see the world and how it affects you. If you think everything will turn out okay, then it will. You tell yourself this will be fine: you will manage.”
Maureen says simply: “She is an amazing girl.” The family celebrate every occasion, she says. “Life is a privilege. Everything is celebrated here. We bring people around and make the most of every occasion. The house might fall down around us but when it comes to Christmas and birthdays, we celebrate.”
Future of art and writing
“I would like to go to a new place and have my own life. I view this as something to get over, [in order] to get on with the rest of my life. The stuff I am going through now is nothing compared with what I went through,” says Caoimhe.
“I am not going to dwell on what happened. I am not ignoring it. It is like reading a book and then putting it away. You might read it again but it isn’t your favourite book.”
Maureen says doctors should learn from their story that it is important to listen, and that parents should never be afraid to seek a second opinion. “A doctor has 100 other patients as well as your child. People should always get a second opinion. She could have lost her arm. You have to fight for your child.”