Thursday 29 September 2016

Childhood leukaemia: 'We thought Caraiosa had tonsillitis but then our lives changed in an instant'

Published 14/09/2015 | 12:37

Caraiosa was diagnosed with acute lymphoblastic leukaemia in 2013. Here she is pictured in a dress given to her by Aoibheann's Pink Tie. Photo Credit: Lisa McConologue Photography
Caraiosa was diagnosed with acute lymphoblastic leukaemia in 2013. Here she is pictured in a dress given to her by Aoibheann's Pink Tie. Photo Credit: Lisa McConologue Photography

For Ethel Grant everything was very normal. Ten months previously, she and her husband Cathal had welcomed a baby boy to their bustling household. Their five children were happy and thriving and the mum was preparing to return to work after spending almost a year with her new baby.

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When her little girl Caraiosa, then two, fell ill Ethel didn’t think anything of it suspecting it was a case of tonsillitis which many of her children were quite susceptible to down through the years.

“All of our children would have had ENT troubles when they were small such as tonsillitis so when Caraiosa became ill I didn’t think that much of it,” said Ethel who lives with her family in Muff Co. Donegal.

“I thought she had tonsillitis and wasn’t worried. I brought her to the GP where she was prescribed antibiotics and for a few days she seemed to get better.”

However, a few days later Caraiosa bumped her leg in a small tumble but awoke in the night complaining of sore limbs.

“Caraiosa bumped her leg as toddlers do, but after she went to bed she woke in the middle of the night complaining about how sore her little legs were,” said Ethel.

“The next morning was my husband’s birthday and Caraiosa’s temperature had spiked so high and her limp had gotten worse.

“I took her back to the GP then and he sent me straight on to A&E in Letterkenny to have blood tests. By 11pm that evening Caraiosa had been admitted to Paediatrics.

“In Caraiosa’s own case, her symptoms looked similar to tonsillitis, she was very pale and she had three or four small bruises on her legs,” said Ethel.

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

November 13, 2013 was the day in which Ethel says she and her family were “plucked” from their normal existence into a world where suddenly one of their children was seriously ill.

“The following morning she had more blood tests done and within a half an hour the curtain was pulled around me and a nurse asked if my husband was on his way in,” said Ethel.

“I knew from her face that something was desperately wrong.

“I wanted them to tell me what was wrong straight away even though my husband wasn’t there,” said Ethel.

The mum-of-five revealed that the moment in which she had to tell her husband what was happening to Caraiosa was one of the most difficult she has ever faced.

“After they told me the news I called my husband to tell him our daughter had leukaemia and it was the hardest thing I’ve ever had to do.

“Soon after that I was in an ambulance with just my child and my handbag and my life had changed in an instant,” said Ethel.

Upon arriving in Dublin, Caraiosa was admitted to St John’s, the only paediatric oncology ward in Ireland, where doctors diagnosed her with acute lymphoblastic leukaemia.

“There’s such a fantastic team of nurses and doctors there and within two days Caraiosa had had a lumbar puncture, a bone marrow aspiration and a Hickman line inserted into her chest.

“In just a number of days we were plucked from our normal lives.

“We were told Caraiosa had acute lymphoblastic leukaemia, and her protocol of treatment would be a two and a half year long chemotherapy regime.

“It was quite daunting but we had an overwhelming faith in the medical team in Crumlin. I can really say that they are world class,” said Ethel.

Read more: Living with cancer: Orla is now gearing up for college

While it came as a relief that Caraiosa was in the best hands she could be, Ethel revealed that the effect of her two-year-old’s diagnosis on her other four children was upsetting.

“At home with five children we wouldn’t have been able to cope without all the support from our friends, families and our local community in Donegal.

“The children’s lives were torn apart and we would have been lost without all the help and support.

“During the first ten months of Caraiosa’s treatment, we’d be up and down from Dublin several days each week and it is a seven hour round trip.

“Although Caraiosa spent the first two weeks in Crumlin, much of her treatment was day case treatment in St. John’s Ward from one to three days a week and in our local hospital.

“It was a huge logistical challenge for us driving to and from Dublin...it’s a seven hour round trip. We were away from our children quite a lot.”

The resilient mum revealed that she and her husband have been honest with their children about Caraiosa’s illness from the beginning, which she said has been vital in their ability to get through this tough time.

“At the beginning when we didn’t know what was going on ourselves we told the children that Caraiosa has a very bad bug and she needed to be treated in Crumlin.

“Once she was discharged from Crumlin, we knew it was important to be honest with them.

“We sat them down and told them she had leukaemia and that it was a cancer. We didn’t want them to be afraid of the word.

“We told them the doctors in Crumlin would help make her better.

“It was hard on the children and when Caraiosa was away from them in Dublin. She’d long to come home to play with them and to see her brothers and sisters,” said Ethel.

Ethel revealed that she is eternally grateful for the support her family has received from Irish charities including Hand in Hand, Aoibhinn’s Pink Tie, Barretstown and The Childhood Cancer Foundation.

The family recently enjoyed a much-needed break thanks to The Cancer Fund for Children to Daisy Lodge, a facility which welcomes families coping with sick Irish children.

“Earlier this year we went to Daisy Lodge which is an incredible facility for families like ours. It’s a centre that’s just at the base of the Mourne Mountains with views of the sea and it really is five-star.

“When we all arrived we were incredibly exhausted and we were in bits. Daisy Lodge took us in as a family and treated us with such professionalism and discretion. There were play rooms for the children right up to the teens.

“We stayed for a week and it was wonderful for both Caraiosa and her siblings. We went to magic shows and movie nights and it was such a wonderful week for us,” she said.

Caraiosa’s mum revealed that the four-year-old is always striving for normality and said she was extremely proud to see her start playschool this September.

“Cara is still in chemo and just started playschool a few months ago in Muff in a place called Little Toby’s.

“She just yearns to be a normal little girl and hopefully she’ll be finished with her protocol next year.

The mum revealed that her family is looking forward to putting the difficult time behind them and hopes for Caraiosa’s treatment to be completed next year.

“Parents who are going through this are often running on adrenaline and you owe it to your child to be positive.

“Cancer stole everything from Caraiosa but she didn’t let it destroy her.  Her smile carried us through some of the tougher days. Her will to live spurred us on so much,” said Ethel.

“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.

“I have huge respect for parents who have lost a child to cancer. It’s something no parent should ever have to do,” she said.

The Cancer Fund for Children is currently conducting a Family Needs Survey across Ireland – North and ROI. Log on to cancerfundforchildren.com to take part.

Other charities mentioned in this piece

www.aoibheannspinktie.ie

www.handinhand.ie

www.olchc.ie

www.giveblood.ie

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