Monday 5 December 2016

'Doctors put her tummy pain down to constipation' - Dad of Cliodhna (4) who received life-threatening diagnosis

Cliodhna Pearson was diagnosed with neuroblastoma when she was just four years old. Her doting dad Alan tells our reporter of the importance of vigilance, early detection, and donated blood when it comes to childhood cancer

Arlene Harris

Published 15/11/2016 | 02:30

Alan Pearson and his daughter, Cliodhna, age 5, who has neuroblastoma. Photo: Damien Eagers
Alan Pearson and his daughter, Cliodhna, age 5, who has neuroblastoma. Photo: Damien Eagers

Of the 160 children diagnosed with cancer each year in Ireland, survival rates are positive, according to Dr Robert O'Connor, head of research for the Irish Cancer society.

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"Most childhood cancer is genetic and not caused by lifestyle issues," he says. "Leukaemia is the most common form found in children, but while childhood cancer can be aggressive as it grows more rapidly in youngsters, children tend to respond very well to treatment and currently around nine out of every 10 will be cured."

Cliodhna Pearson is one of those children.

Diagnosed with neuroblastoma when she was just four years old, the Dublin girl has spent most of the past year in hospital as she undergoes treatment. Neuroblastoma is a disease in which cancer cells form in nerve tissue of the adrenal gland, neck, chest, or spinal cord. It is the third most common childhood cancer after leukemia and cancer of the central nervous system.

Cliodhna's parents, Alan and Sinead (who also have two other children, Niamh and Darragh) have spent the past year by their daughter's side as they watched their bubbly, lively five-year-old bravely endure the most gruelling experience ever.

"Cliodhna has always been a very active child and was always full of life," says Alan. "So when she started having frequent high temperatures, we just thought it was normal childhood illness. After treating her with over-the-counter medicine, we took her to the GP who said it was probably a virus.

"However she didn't recover and then started to limp, which we initially thought was as a result of playing about. But Cliodhna isn't one to complain, so when she said she felt sore, we took her back to the doctor who referred her to the emergency department as he thought she might have had a problem with her hip."

Over the course of the next month, Alan and Sinead took their daughter back to casualty five times as they believed there was something amiss - but when the diagnosis was finally delivered, the couple were shell-shocked.

"Every time we took Cliodhna to hospital, we were told there was something minor wrong with her, but we weren't convinced and knew something wasn't right," says Alan. "She had tummy pains and an X-ray revealed a mass in her stomach which doctors put down to constipation, but we insisted on further investigations.

On October 16 2015, our little girl was diagnosed with neuroblastoma.

"To say we were utterly devastated would be an understatement. I remember noticing that there was a cup of tea in my hand - I had no idea where it came from and just wanted to get rid of it and get out of the room as quickly as possible. Both Sinead and I thought we had lost her, we thought this was it and she would soon be gone from us - we were heartbroken," says Alan.

Cliodhna, who was just four, was put on chemotherapy straight away and as the cancer was so aggressive, required very intense treatment in order to try and rid her body of the rogue cells.

"We didn't know what to say to Cliodhna as she was so young, but felt that she ought to know what was going on, so explained as best we could in a language she could understand," says Alan.

"She needed to start treatment immediately - chemotherapy and blood transfusions - and she was put on a clinical trial as we wanted her to have the most up-to-date treatment possible because the cancer was extremely aggressive.

"It wasn't only a solid tumour but was also in her bone marrow - she was going to have to be very strong.

"She was the most incredible patient right from the start. She had eight months of intensive chemotherapy but didn't respond well initially, so had four extra rounds until her bone marrow was clear. Then she had surgery to remove the tumour, followed by more treatment.

"She then had to undergo six weeks in isolation in order to have a stem-cell transplant and also had 14 days of radiotherapy.

"It's important to remember children in oncology wards are the highest users of blood transfusions in the country - most people think that when they give blood, it will be used to help someone who has been in an accident, but they aren't the only ones who need it.

"Young people like Cliodhna regularly need blood transfusions, so I would encourage people to consider donating some blood - for the sake of these children.

"Cliodhna has been through so much in the last year and it still isn't over as her next hurdle is immunotherapy, which she will undergo at the end of November. It's impossible to explain how much she has gone through and how fantastic she has been through it all."

For the past 13 months the Pearson family have had their lives turned upside down and there is more to come, but they are hopeful for the future.

"It's been a very difficult time and has been so tough for Cliodhna," says Alan. "But it has also been hard for our other two kids. We've had had so much support from friends and family and are lucky to have two sets of grandparents who have done everything they could to help us.

"Cliodhna has spent 70pc of the past year in hospital but she is a naturally positive child and takes everything in her stride. She went to school for the first time recently and was so excited to put on the uniform and go and meet her teacher - it was a huge leap for her.

"There is still a long road ahead, and we know that there will be good days and bad days, but despite the battering she has taken, Cliodhna is a very strong little girl and together with family, friends and her medical team, we will help her through this."

Professor Owen Smith, consultant paediatric haematologist at OLCHC, says there is a lot of positive news with regard to treatment for childhood cancers.

"The progress made in the treatment of childhood cancer has been a remarkable success story," he says. "From being an almost lethal disease 40 to 50 years ago, more than 80pc of children with cancer are now being cured. This progress has been the result of basic research and the testing of new knowledge through multi-institutional and multi-national randomised peer-reviewed clinical trials.

"The most common cancer in children, acute lymphoblastic leukaemia (ALL), has become the 'poster child' for cancer cure in childhoo, which has an overall survival rate of approximately 94pc in our most recent trial."

The expert says early detection is vital and once diagnosed, parents should keep informed.

"Unfortunately, childhood cancers are sometimes overlooked or misdiagnosed because early symptoms are mistakenly attributed to more common injuries or illnesses," says Professor Smith. "Therefore, we recommend that children have regular medical check-ups and that parents pay close attention to the development of unusual signs or symptoms that are ongoing.

"Knowledge is a powerful weapon in coming to terms with the diagnosis, but it also allows you to pick up on important treatment side effects should they arise."

Childhood cancer: the facts

• 80pc of childhood cancers will be cured

• Acute Lymphoblastic Leukaemia (ALL) is the most common form of childhood cancer

• Other types include brain tumours, lymphomas, sarcomas, neuroblastoma and kidney tumours

• Although some of these cancers may not have the same outcomes as with ALL, rates can be improved if they are diagnosed in the early stages of the disease.

• Possible symptoms include: Persistent high temperature, nausea or illness, often accompanied by vomiting, easy bruising, lump or swelling (particularly in neck, chest, armpits, stomach and groin), loss of energy and pale complexion, headaches, constant pain in one area, unexplained limping and weight-loss

* See cancer.ie, and to donate blood see giveblood.ie

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