Wednesday 13 December 2017

Childhood leukaemia: 'My son asked me if he was going to die and I said 'no you are not''

James Dennedy has been living with leukaemia since he was 11. Despite missing most of school over the last three years, the Junior Cert student, now 14, is still 'tolerant and good humoured'. His mum Amanda tells of the trials and tribulations of a child with cancer

James Dennedy at home with his mum Amanda. Photo: Steve Humphreys.
James Dennedy at home with his mum Amanda. Photo: Steve Humphreys.

Ailin Quinlan

It was the first week of August 2012 and the summer holidays were in full swing at the Dennedy family's Blanchardstown home, when 11-year-old James started to complain of feeling tired and having a headache.

Mum Amanda presumed it was the laid-back summer routine with its relaxed bedtimes that was at fault. But James continued to complain, and on August 7, she took her eldest son to the doctor.

Because of the headaches, the GP felt James might have a sinus infection, and prescribed an antibiotic.

However, as the days passed, James did not improve. Amanda, 47, brought him back to the GP on two occasions - once after he had thrown up at his grandmother's house - Amanda thought he was having a reaction to the antibiotic but the doctor advised that he continue with the course - and again when she noticed that he was becoming increasingly lethargic.

"He was so tired he couldn't stand," she recalls.

As they waited their turn to see the doctor, James reported feeling sick. Amanda brought him to the toilet. "He vomited in the toilet and suddenly he had this huge black eye - a big black bruise came out of nowhere and he looked like he'd been beaten up."

They were advised to go to Temple Street Hospital, where James had a series of blood tests. Dad John came straight to the hospital from work.

"As soon as John arrived in the hospital they took us into the room and told us James had leukaemia," Amanda recalls.

It was Monday August 13 and barely 60 minutes since she and her son had arrived at the hospital. The family were told that an ambulance was on its way to bring James to Our Lady's Children's Hospital, Crumlin, which specialises in childhood cancers.

Then, in the presence of his parents, James was informed that he had leukaemia.

"I don't think he understood completely. He asked if he was going to die and I said 'no you are not'," Amanda recalls.

The family were brought to Our Lady's Children's Hospital in Crumlin, and James' treatment began straight away.

"I didn't have time to be upset. I didn't lose the plot, because they (the medical staff) were telling you things, and you had to listen to what they were telling you," she recalls.

Over the next 10 days, James went through a battery of treatments, including blood and platelet transfusions. Next came eight months of chemotherapy, after which the youngster entered the maintenance phase of his treatment.

This involves daily doses of oral chemotherapy and hospital stays every 12 weeks for further tests and chemotherapy.

"He's been in treatment for three years now," says Amanda. In six months, James, now 14, will enter the hospital's after-care programme, from which he will emerge at around the age of 19.

It's been a turbulent time, she says: "James goes to school when he can. He's very bright but has missed most of sixth class, and first and second year and has just started his Junior Cert."

However, she says, he's been brave, good-humoured and tolerant, not even complaining "when some of the medications are very harsh."

However his bones have deteriorated because of the chemotherapy she says, and last year the courageous teen endured a bad fall in which he broke his thigh bone, shin bone and smashed his knee joint. Last May he fell and broke his hip and had to have surgery.

And the treatment has had other adverse effects: "His hair has fallen out four times. It's back again. The first time it distressed him but now he doesn't care anymore. He has been in a wheelchair a lot of the time and walks on crutches but cannot manage a long walk.

"He's doing as well as expected but it is very difficult," she says.

The unpredictable nature of his illness discourages any forward planning, says Amanda:

"At the drop of a hat you could be in hospital. In August he was in hospital, and in June and in May as well, each time for nearly a week so you cannot plan anything."

It's also expensive to be sick - costs like petrol, toll bridge fees, parking fees and long hours spent waiting in coffee shops all add up.

Little brother Ryan, 9, is familiar with the crises which make up family life when a child has cancer:

"We've dropped Ryan off at my mother's in his pyjamas, with his school uniform in a bag and a box of cereal under his arm because we are on our way to hospital," Amanda says.

"It's very unpredictable," she says, adding however, that they're managing to cope. "This is your life and you have to live it - we are living it and we are winning, please God."

Something that's helped, according to Amanda, have been the two family breaks the Dennedys enjoyed at Daisy Lodge, a special centre based near Newcastle, Co Down, which offers free support, residential and therapeutic services to families from all over Ireland.

The centre is run by Cancer Fund for Children, a charity based in Belfast, which works with around 350 children and young people at any one time.

Its services are aimed at children, teenagers and young adults aged up to 24 and their families who are living with cancer. The charity provides practical, emotional and financial support as well as free therapeutic short breaks for the whole family.

"The social worker at the hospital referred us to the centre. We had a good time and it was a great way to relax together as a family," says Amanda.

Since 1997 Daisy Lodge has offered free short breaks to families from the Republic referred by the social work team at Our Lady's Children's Hospital in Crumlin.

However, the charity, which is supported by the Rory Foundation set up by golfer Rory McIlroy, doesn't offer a 'holiday' in the traditional sense.

It's a place where families can relax and spend time together during or after cancer treatment, benefiting from its range of expert psycho-social services, explains CEO, Gillian Creevy.

"Most families who come to us are exhausted, frightened and worried for the future. We want them to have an experience of our work at Cancer Fund for Children and at our facilities where they will feel safe, have confidence in us and know that we are going to give them the best of care.

"At Daisy Lodge we have created a nurturing environment, a place that welcomes families who tell us they are quite simply 'running on empty' but who leave us feeling refreshed, stronger, more resilient and better able to cope with whatever lies ahead.

"The setting, standard and quality of Daisy Lodge reflects the value and importance we place on children, young people and families who come to us for help.

"Our families describe it as a lifeline, a place in their own words, where they can feel normal, belong to a community, where they can better understand what they are going through.

"They describe it as a safe place where they can unblock difficult feelings in a secure and supportive environment.

"That's why during September, Childhood Cancer Awareness Month, Cancer Fund for Children will be campaigning to support even more families whose lives have been devastated by cancer and we need your help."

The organisation is currently carrying out a Family Needs Survey across the island of Ireland to, says Creevy, determine the "unmet needs" of families with a childhood cancer diagnosis.

"We want to be told by families directly what services they need which will help us plan."

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Telling your child in stages

Telling your child that he or she has cancer is one of the hardest things a parent can ever have to do, says Dr Paul D'Alton, Head of the Department of Psycho-oncology at St Vincent's University Hospital.

"Our natural instinct is to protect our children from things, including bad news, and we can often think that by not telling them, we are helping them, when in fact, the opposite is true.

"Children respond to information when it is given in a way that they can make sense of."

The difficulty is, he explains, that if children are not given the information, they tend to fill in the blanks themselves - and often in terms of the worst case scenario.

The disclosure of a cancer diagnosis doesn't have to happen in one conversation, says D'Alton - it's recommended that this conversation happens in stages.

"The advice is to drip-feed it, or give the child little pieces of information as time goes on," he says, adding that the information must be presented in an age-appropriate way.

"What you say depends on the age of the child. What you tell a child under the age of three, under the age of six and under the age of 12, for example, will be different, so you have to adjust your information to the child's cognitive level."

Begin, he suggests, by saying that you're aware that the child is unwell and that the doctors and nurses are trying to work out what is wrong.

The next stage of the conversation is that you're all now aware that the child is very sick.

The next stage could be a discussion around the fact that your child has been diagnosed with cancer. "Use the word cancer - don't avoid it," he says.

It's important to first assess what your child understands about cancer and what it means to them - once you know, you can build your information on this foundation, he explains.

Once the situation has stabilised, it's important to try to keep family life as normal as possible.

"Cancer is very much a family illness. It is important to keep an eye on the children, and keep their routine as normal as possible. Involve all your children's teachers and school - it is essential that they know," he says.

You can expect a range of responses from a child following a diagnosis of cancer - children may regress, for example.

"You may see the return of thumb-sucking or bed-wetting, behaviour you thought had ended. This may happen, not only with the child who has cancer but their siblings."

Another response is that the siblings, or the child with cancer, may think that everyone is sick.

"The other children need to be reassured that other family members do not have cancer," he said.

According to the Irish Cancer Society, a small number of children and teenagers with cancer can become depressed.

Parents should watch out for signs of depression - the child may become quiet or moody or have eating or sleep problems. In some cases they may become uncooperative with cancer treatments.

Anxiety usually occurs in younger children, while depression is more common in teenagers. Some signs of depression can happen as a response to normal development.

If you notice that your child is becoming depressed, it is advisable to get help for them without delay.

The parents of children diagnosed with cancer should contact the Irish Cancer Society and avail of its website and online nurse support, as well as any other relevant resources that may be available.

"It's important for parents to understand that they do not have to do this on their own," he advises.

"There is advice out there, both through the Irish Cancer Society and through other agencies - so avail of that advice."

* Dr Paul D'Alton is Head of the Department of Psycho-oncology at St Vincent's University Hospital, President of the Psychological Society of Ireland and Adjunct Lecturer at the School of Psychology, University College Dublin

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