Sinéad Wood thought she’d throw a party as soon as her son finished cancer treatment. She thought she’d begin living life to the max once Cillian finally closed the door on the rigorous treatment regimen he has endured for three and a half years, after being diagnosed with T-cell lymphoblastic lymphoma at age seven.
But it hasn’t worked out like that. Her 10-year-old said goodbye to chemo and steroids in July – and the Wexford mum of two feels anxious. “I panic. I worry the cancer’s going to come back. I gave Cillian chemo every single night for two years – so I had to know his blood counts every night. Now I don’t know what his blood counts are and I’m worried something’s wrong.”
Nor does she know whether he’ll have long-term effects from chemo. Cillian had very intensive chemotherapy for nine months post-diagnosis. She knows it can affect survivors for the rest of their lives. “We’re in unfamiliar territory. I don’t know what to expect. Even this morning he has a small rash under his eye and I’m not sure what that means.”
And while Cillian coped well with chemo, steroid treatment was challenging. “He was in a wheelchair for nine months while on high-dose steroids. Physically, he lost his ability to run. He has a twisted foot. They made him bloated. He put on a lot of weight.”
With the help of a parent peer-to-peer support programme run by Irish Cancer Society, Wood discovered the uncertainty she’s feeling is normal – one of the hardest times in a cancer journey is when treatment is over.
The devastating impact of childhood cancer is often misunderstood, underestimated. “The challenges can be many, including physical, emotional, cognitive, financial, and psychosocial. And they may present at the time of diagnosis, during treatment and into long term survivorship,” says Mary Claire Rennick of Childhood Cancer Foundation Ireland (CCFI). This organisation, along with CanCare4Living and CanTeen Ireland, recently organised the first-ever conference in Ireland on Childhood, Adolescent, Young Adult Cancer and Survivorship (CAYAS).
Held on September 11, the aim was to connect patients, survivors, parents, families, advocates, health care professionals, researchers and policy-makers. Collaboration within the CAYAS community was emphasised, as was “keeping the lived experience at the heart of the conversation”.
More than 350 delegates attended the virtual conference “from all over” – Ireland, the UK, Europe, US and Australia. “It was acknowledged there are huge unmet needs when it comes to cancers in the CAYAS group,” says Rennick.
Every year in Ireland, some 320 children/adolescents/young adults (aged up to 24 years) are diagnosed with cancer. Between 180 and 200 are under 16. Leukaemia is the most common childhood cancer, accounting for one-third of cases. It’s closely followed by brain and spinal cord tumours – seen in one in four cases. After that, lymphoma affects 10%, neuroblastomas affect about seven per cent, while kidney and bone tumours account for about five to six per cent and there are many other less frequently occurring cancers.
Childhood/adolescent/young adult cancers tend to be very different to adult cancers, says Dr Sarah Curry, consultant paediatric oncologist at National Children’s Cancer Service, based at Children’s Health Ireland, Crumlin. “With adult-type cancers, there can be lifestyle factors – smoking, prolonged sun exposure. That’s not so for childhood cancer. Tumours might look the same as an adult cancer under the microscope – but they tend to behave and respond differently to treatments.”
When you break down the stats, six families are thrown into the frighteningly new world of childhood cancer every week in Ireland. “Most childhood cancers are acute. Your child is unwell but you never expect to hear they’ve cancer. It’s this devastating diagnosis, and you’re immediately thrown into a world you’ve never come across before,” says Rennick whose child developed leukaemia.
She never suspected that it was “lurking in the background” of her daughter’s viral infection. “Within a couple of hours, Alice was diagnosed and in treatment for a rare leukaemia.”
For Wood, Cillian’s cancer journey began after the big snow of February 2018. He developed a cold that didn’t clear, soon he had difficulty bending to put on his socks and when he almost fainted while on a drive with his grandmother, he was brought to A&E. “They did an X-ray and saw fluid on his lungs. They thought it was pneumonia.”
The next day, Cillian was sent by ambulance to Crumlin. Sinéad and Cillian’s dad, Eoin, still thought it was pneumonia. “They put him in the heart ward. Again, I was naïve, thinking it was because there was no room in the hospital. They did lots of tests. Within two hours they told us it was cancer. I said ‘is the fluid from pneumonia?’ The doctor said ‘it’s from the tumour pressing on his heart and lungs’.”
Recalling those shattering moments, Wood says: “We fell to the floor. We fell down. Cillian was still very happy, chatting to the nurses, laughing – and a doctor was telling us he had cancer. We thought we wouldn’t sleep that night but we were so tired we blocked it out and slept. It was the last good night’s sleep I had.”
Wood describes entering a very private world, a hard-to-explain world to anyone who hasn’t experienced childhood cancer. “It was all go, go, go. So many words you’ve never heard before. For every procedure he had, you had to sign a form, knowing he could die from this procedure. I didn’t know what a lumbar puncture was, or how strong his chemo was. It’s very scary.”
Since the 1960s, overall survival of children with cancer has doubled. “Now we expect more than 80% of children and teens to be long-term survivors,” says Dr Curry. Multiple factors lie behind these better rates. “Supportive care has improved – all the additional things we do to keep a child well during treatment, like prompt evaluation and treatment of infections, and use of blood product transfusions.”
Other factors include multi-disciplinary team approach with experts from different disciplines recommending best treatment protocol; new information gleaned from clinical trials and more accurate diagnostic techniques.
But harsh treatments can exact a high lifelong cost. “It’s important to say many children finish treatment without major significant impact. Long-term physical consequences depend on type of tumour and type of treatment,” says Dr Curry.
She gives examples of children with osteosarcoma possibly needing limb amputation or those with liver tumour perhaps requiring liver resection (removal of a piece of the organ) or transplant. “Children may have long-standing fatigue and organ impairment. Depending on the type of cancer and therapy, long-term the person may have sub-fertility, infertility or early onset menopause.”
Minimising the side-effects comes down, she says, to giving the right patient the right treatment at the right time. “We’ve certain medicines we can give alongside chemo that can minimise side-effects e.g. Dexrazoxane to certain patients who may be at risk of long-term heart function impairment as an effect of chemo.”
Dr Curry says it’s widely acknowledged that one of the biggest regrets for childhood cancer survivors is around fertility. “Many would’ve been unaware the diagnosis/treatment would impact fertility.”
Adding that oncofertility is a developing field, she says when doctors see that cancer/its treatment poses risk to the child’s future fertility, they always discuss it with the family – and with the child, depending on the level of maturity.
“We offer post-pubertal boys the option to use the sperm bank prior to certain treatments. And a new initiative in the last 12 months has allowed us to offer post-pubertal girls the opportunity to undertake egg retrieval and cryopreservation. It’s funded by Merrion Fertility Clinic and the Irish Cancer Society, but going forward we hope the HSE will fund it.”
But the great shining hope for real recovery from cancer lies in genome sequencing. And this is set to begin in Ireland this year for all childhood cancer patients diagnosed from that point on – as well as current patients who relapse – says Prof Owen Smith, national clinical lead for childhood/adolescent/young adult cancer at the National Cancer Control Programme.
“The cure rate for all childhood cancer is about 85%. This is great news – we’re improving outcomes. But at the same time we still have knock-on side-effects of treatment. For 40 years we’ve been scratching our heads about why some children develop more side-effects than others,” says Prof Smith, citing the example of 10% of girls over 10 requiring hip replacement following leukaemia treatment.
“Who are these 10%? Can we pick them out prior to treatment? We believe we can – by sequencing the patient’s genome and looking for the genetic variation that causes susceptibility to toxicity. We can then modify treatment.”
The programme will run at National Children Cancer Services and will also involve genome sequencing of the patient’s tumour, to find its Achilles heel and develop precise, targeted treatments. The whole approach re-defines what we mean by ‘curing cancer’, says Prof Smith. “Is it just being free of the cancer? Or is it being cancer-free with no long-term toxicities? I would contend it’s the latter.”
Of course, childhood cancer impacts across the spectrum, including psychologically and emotionally. Dr Curry says the impact can vary with age. “With very young children we might see behaviour regression, not wanting to comply with treatment. School-aged children may withdraw into themselves.”
Adolescents she sees as a unique group – neither small adults nor big children. “At a time when they’re trying to gain independence, the lack of control associated with cancer therapy is a real struggle that can manifest in non-compliance with treatment or severe anxiety.”
Wood says Cillian smiled through treatment. But now back in school and in fifth class, she sees him struggling, trying to find his personality as the boy who doesn’t have cancer. Both he and his twin brother, Oisín, have missed so much – holidays, after-school activities.
“Cillian struggles to make small talk. All he knows is hospital, nurses, chemo. When his friends are talking about football, he’ll bring up hospital. I think he’s worried, trying to remind people this is what he went through and don’t forget.”
At CCFI, Rennick says families need a whole suite of supports, including psychosocial, educational and financial. “Teachers need guidance as to how to deal with the situation. That guidance isn’t there. If a child has attended school intermittently or been absent during treatment, they need home teaching supports. A whole range of psychosocial support is needed, such as access to play therapy, counselling.”
While the three charities representing CAYAS came together to organise the recent conference, they also work closely together otherwise, particularly in advocacy. All three are committee members of the National Cancer Control Programme, set up to put in place recommendations of the National Cancer Strategy 2017-2026. “The previous cancer strategy had no mention of children at all. The current one has recommendations for improvements to supports and services,” says Rennick.
It’s all grounds for hope in the daunting world of childhood cancer, just as genome sequencing shines a ray of hope. And Sinéad Wood too: the mum at the coalface, who finds solace in her boys’ bravery. “Cillian’s very funny, very clever. During treatment, his attitude kept the family together. And Oisín never complained that he couldn’t go outside when Cillian’s white blood cells were low, or when he was dropped to a family member at 3am because we had to take his brother to hospital. I’m so proud of that boy too.”
September is Childhood Cancer Awareness Month and CCFI has launched Gold Ribbon Conversations, a podcast series that explores various aspects of childhood cancer.
Produced and hosted by Sinead O’Moore (from ‘Everymum: the Podcast’), Gold Ribbon Conversations spotlights families’ experiences during diagnosis, treatment, survivorship and bereavement, as well as hearing from medical and emotional experts in the field.
Episode 1: Nikki Bradley
Nikki was diagnosed with a rare bone cancer aged 16. As an adult, she shares the impact of this adolescent diagnosis and treatment on her mental, emotional and physical health and on her fertility. A motivational speaker, she has completed physical challenges and champions the power of mindset.
Episode 2: Sinead Wood
Sinead’s son, Cillian, has undergone cancer treatment for three years. But as it ends, suppressed emotions begin to surface.
Episode 3: Cathy Bermingham
Cathy’s son, Max, sadly passed away in 2019 aged eight, having been diagnosed with neuroblastoma when he was two. Cathy has been supported in her grief through connecting with other parents who understand loss, and by celebrating the life of her young son. She hopes to now support other parents in their grief.
Episode 4: Rebecca Walsh
Rebecca is a play specialist in CHI at Crumlin and works with children/families through medium of play to help them understand their diagnosis and treatment. The episode highlights that treatment is more than just physical – children heal, grow, process and develop through the power of play.
Episode 5: Dr Sarah Curry
Consultant paediatric oncologist Dr Sarah Curry talks about the connections she and her team make with patients – the joy of good news, and the compassion when they deliver bad news.
Podcast series available wherever you listen to podcasts.