The mother of a little girl diagnosed with Acute Lymphoblastic Leukaemia (A.L.L) two years ago, has stressed the importance of “trusting your instincts” in relation to your child’s health.
Ethel and Cathal Grant’s daughter, Caraiosa, from Muff in Donegal, was just two and half years old when she was diagnosed “out of the blue” on November 13th, 2013.
Caraiosa, who is now four and half, received months of chemotherapy and treatment in Dublin’s Crumlin Hospital and Letterkenny General Hospital and continues to do so.
Ethel Grant spoke to the ‘Journal’ as part of the Childhood Cancer Foundation’s ‘Light It Up Gold’ campaign for September, Childhood Cancer Awareness month.
She commended the support her family received from the local community and their families in the days and months which followed Caraiosa’s diagnosis.
Ethel also told of the “phenomenal” support they received from the “amazing” voluntary-run groups and charities across the country, such as the Childhood Cancer Foundation.
She added how there is a strong need for government and public bodies to fund these groups, as well as provide practical and logistical supports in areas such as counselling and therapy for children and their families.
Stressing how this was her family’s story, Ethel told how “nothing was out of the ordinary” with Caraiosa until she took mild tonsillitis.
This didn’t ring any alarm bells as all of Ethel and Cathal’s five children had been susceptible to tonsillitis. Caraiosa received an antibiotic from the doctor and improved a little.
However, the following night, Caraiosa then began to complain of a pain in her leg -which she had bumped while playing earlier.
When she woke up the next morning she had ‘rigor’ - shaking which accompanies a sudden spike in temperature.
Ethel said: “I thought: ‘This doesn’t seem right. My gut instinct told me something was wrong. That’s something I heard from mothers time and time again in Crumlin. There’s always that gut instinct and I would tell all parents to trust it. If you think there’s something wrong, keep going back and get it checked out. If you still think it’s wrong, go back again.”
The family’s doctor sent Caraiosa to A&E in Letterkenny where she was sitting up in the bed and playing.
Ethel said: “The only symptom she seemed to have was the tonsillitiis - which we now know it wasn’t. She was also was a bit pale and had three or four small, black bruises on her leg, which aren’t that unusual for a child who’s running around playing.”
However, a nurse in the hospital told Ethel the consultant wanted to see her.
“I’d this overwhelming instinct it was cancer,” said Ethel.
Doctors in Letterkenny confirmed they believed this was the case and in the same day, Caraoisa was in an ambulance to Dublin.
Her family then entered the “surreal” world of St John’s Ward in Crumlin hospital, the only paediatric oncology ward in the Republic of Ireland.
Chemotherapy began almost immediately, firstly in the ward for two weeks and then at the St John’s Day ward
It was estimated that Caraiosa’s treatment would last two and a half years.
“Everything goes through your head,” said Ethel.
“You’re seeing two and half years in front of you and you’re wondering how you’re all going to cope with this. Every child has a different story, but for us, for the first ten months, if you weren’t in Crumlin, you were in Letterkenny. Or, you were getting ready to go to hospital or thinking about it. It takes over your whole world.”
Ethel told how they had wonderful community support in the months that followed, as well as from their family and friends and from Cathal’s work, E&I Engineering in Burnfoot.
Ethel also stressed the “unbelievable” support of voluntary organisations across the country, such as Aoibheann’s Pink Tie, Hand in Hand in Galway and the Northern Ireland Cancer Fund for Children.
Aoibheann’s Pink Tie was set up by Jimmy Norman in memory of his daughter, who sadly passed away. As well as offering practical and financial support nationwide, they also provided Caraosa with a princess dress, to make her feel beautiful and invincible and a ‘chemo duck,’ which had a hickman line, also known as a ‘Freddie’, just like her.
Hand in Hand,’ based in Galway, offers practical support, such as home help for a few hours a week.
“They gave me the gift of time,” said Ethel,
“I was able to spend some more time with my other children, instead of worrying about cleaning the house.”
The family also enjoyed breaks in the “fantastic” Daisy Lodge in Co.Down, organised by the Northern Ireland Cancer Fund for Children which is a therapeutic short stay facility and in Barrettstown Camp in Co Kildare which is a camp for rebuilding lives affected by childhood cancer. These allowed them to enjoy activities and relaxation as a family.
They had been unable to do this when Caraiosa was undergoing chemotherapy as she was not able to mix with large groups of children such as in the cinema or at a swimming pool, due to fear of infection.
Ethel said these trips were also beneficial to Caraiosa’s siblings who were also deeply affected by their sister’s illness.
She added that there is a huge need for support for siblings, as well as counselling and play therapy.
All of these issues are being highlighted by the Childhood Cancer Foundation, which, as well as raising awareness, also advocates for stronger and better services for children with cancer and their families. The group was set up by parents of children with cancer.
Caraiosa is now in playschool and receiving maintenance chemotherapy once a month in Crumlin and nightly at home and will continue to do so into next year.
Ethel, who said she receives strong support from other parents she met in Crumlin and on online support boards, said that like all children she saw in St John’s Ward, her daughter is “incredible.”
She said: “You are never, ever going to be the same after walking into St John’s Ward. It changes everything. You value the small things in life so much - just to be at home now with our five children together is a gift.
“The children of St John’s Ward are incredible. They never, ever give up. They suffer so much - the side effects of treatment and the pain - a pain beyond which the strongest drugs can reach. Their eyes tell so much, their faces hollow and their eyes huge but so full of hope. Their eyes see beyond the years they’ve seen too much, felt too much. They fight like a child as only a child knows and they carry us, their parents. Even on the worst days, Caraiosa made us stronger.”
She added: “I’ve always lit candles over the years but now I always light three. Three candles: love, strength and hope. Three candles ...one for the fighters, one for the survivors and one for the angels of St Johns ward, never ever to be forgotten.”
To support the Childhood Cancer Foundation, you can wear its gold ribbon, light your building up gold, share its posts on the ‘Light It Up Gold facebook page’ or sharing # gold through social media.
You can find out more about the foundation on www.childhoodcancer.ie