'Fear walks with us' - living with child cancer

  • Deborah Condon

Posted 16/08/2013

Most parents are well used to their children getting sick from time to time. From the common cold - which young children are estimated to catch eight to 10 times a year - to chest infections, coughs, chicken pox - the list is endless.

However, there is one illness that the vast majority of parents probably never think they'll have to deal with - cancer. But the reality is that every week in Ireland, parents will have to sit in a doctor's office and be told possibly the scariest words they will ever hear - ‘your child has cancer'.

According to the latest figures from the National Cancer Registry, in 2010 alone, almost 240 children up to the age of 19 were newly diagnosed with cancer - that is at least four diagnoses a week. Two-thirds of these were aged 14 or under.

While childhood cancer is considered rare, one in every 300 children in Ireland will be diagnosed with the disease before the age of 20, while one in every 450 will be diagnosed before the age of 15.

Cancer is currently the leading cause of death from disease in children here.

Majella Walsh from Ballyheane near Castlebar in Mayo has sat in that doctor's office and been told those devastating words. In 2008, her son Jack, who was just seven at the time, was diagnosed with a medullablastoma, which is a type of brain tumour.

"I knew something was wrong, call it mother's instinct, but I just knew," she said.

There had been a few symptoms, like Jack getting sick in the morning, but after he developed a turn in one of his eyes, Majella and her husband decided to bring him to an optician.

"The optician immediately referred us to an ophthalmologist in Galway, who ordered an MRI straightaway. That night we were in an ambulance being driven to Beaumont Hospital in Dublin," she explained.

The scan had revealed a tumour in Jack's young brain, although it would be another few days before they would find out what type of tumour it was. In Beaumont, another scan was ordered and this revealed that the cancer had also spread to his spine.

"Our world fell apart. I felt like I couldn't function in those early days," Majella said.

One week later, on June 18, 2008, Jack underwent a nine-hour operation to remove the tumour from his brain. While he understood he was going for an operation, according to Majella, he did not understand the seriousness of it.

"He took our hands and walked down to the operating theatre with us. We were in absolute bits, but he didn't know how big this operation was," she said.

Jack spent a few weeks in Beaumont Hospital recovering and then got to spend a few weeks at home before his radiotherapy and chemotherapy treatment began.

Radiotherapy came first.

With this type of treatment, X-rays are used to treat cancer. When having radiotherapy to the brain, one of the main ways of doing this is with the use of a treatment mask. This see-through mask covers the entire front of the head, including the face and neck. It keeps your head completely still while you undergo treatment.

Jack underwent six weeks of radiotherapy and Majella describes it as ‘an absolute nightmare seeing your child lying there with this mask on'.

Jack then underwent chemotherapy in St John's Ward in Our Lady's Hospital for Sick Children in Crumlin, Dublin. He underwent high-dose chemotherapy for four months. This included three different types of chemo meds.

Again, this was a very difficult time for the family. There was ‘a lot of sickness, a lot of infections' and Jack was so ill, he could not even get out of bed on Christmas morning to see what Santa had brought him.

For each chemotherapy session, he would be isolated in a room for five days to reduce the risk of infection.

"He couldn't leave the room for that five days, but after that we would be moved to the Ronald McDonald House because we couldn't go back to Mayo in case he got sick. So for three weeks out of each month, we were in Dublin," she explained.

The Ronald McDonald Houses are on the grounds of the hospital and they provide accommodation for families with seriously ill children in the hospital.

The chemotherapy was administered via a hickman line - a tube that goes into the chest and remains there even between treatments. Among children with cancer, these lines are known as ‘Freddie' and Jack's Freddie remained in his chest for a year-and-a-half.

During this time, Jack's older sister, Megan, who was just 10 when he was diagnosed, stayed a lot of the time with her grandmother in Mayo, but Majella said she and her husband took turns going back to spend time with her.

"She was obviously very upset as well and we had to give time to both children," she said.

Finally, Jack's treatment finished in March 2009 and today he is cancer-free. Majella pointed out that he has a number of side-effects from his treatment, including some hearing loss, thyroid issues and growth hormone deficiencies. Some of these will require lifelong treatment.

However, she emphasised that ‘they will take those things over cancer any day'.

Up until last year, Jack underwent scans every three months to check the cancer had not returned. He now has these scans every six months.

Majella described the staff in St John's Ward as ‘the most amazing staff I have ever come across in my life'.

"Every child had a smile on their face despite their sickness."

She is also hugely appreciative of her family, friends, neighbours, employer and her husband's employer, who all provided huge support.

And Jack?

"He is a great child, quiet but very kind. A child in the area recently developed cancer and all he wanted to do was go and buy him a train set so that he could see the look of delight in that child's eyes."

However, Majella admitted that cancer still hangs over the family.

"I'll never be the same person. We feel like the marathon is behind us but fear walks with us every day. If Jack is sick, the first thing we think of is cancer. I was very naïve until this disease came knocking on our door," she said.

This is why Majella has become involved with Light It Up Gold (LIUG) Ireland, which is made up of parents who have, or have had, children with cancer treated in St John's Ward in Crumlin.

Their goal is to create awareness of childhood cancer. LIUG was started in the US by Tony Stoddard, whose five-year-old son died of cancer in early 2012. The movement has now spread worldwide and in September, which is Childhood Cancer Awareness Month, famous buildings and landmarks around the world will be lit up gold, including in Ireland, the Mansion House and St Patrick's Cathedral in Dublin and Eyre Square fountain in Galway.

According to Gillian Smith of LIUG Ireland, while survival rates for childhood cancer have improved in recent years, one in five children with cancer will die within five years of their diagnosis.

An average of 34 children died from cancer every year in Ireland between 2005 and 2010 and even when a child reaches the milestone of being cancer-free for five years, they are still at an increased risk of their original cancer recurring, as well as secondary cancers or other major health issues as a result of the treatment they must undergo.

Ms Smith pointed out that while St John's Ward, which is the main cancer ward for children in Ireland, is currently being upgraded, this has been funded entirely by public donations and a further €2 million is needed to complete the renovations.

"Successive governments have failed to deliver a new children's hospital to give sick children the first class facilities they need. Our short-term goal is to finish St John's and to ensure that children diagnosed with cancer in Ireland have facilities equal to those in other developed countries," she explained.

The parents' long-term goal meanwhile is to ‘raise awareness and funding towards research'.

"The side-effects from cancer treatment can be as devastating to children as the disease itself and we would like to see more money spent on research to develop less invasive and more effective treatments," she explained.

Raising awareness of the disease is vital, something which Majella agrees with.

"It's great to see the pink ribbon for breast cancer everywhere, but we need to see gold now too."

For more information on Light It Up Gold, email info@lightitupgold.ie or click on www.facebook.com/lightitupgold or www.lightitupgold.ie

Child cancer ward relies on charity


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