“Being the parent of a child with cancer, it’s like being in a secret club that no one wants to be in,” says Shirley Keyes, whose daughter, Nicole, was diagnosed with leukaemia in April 2023 when she was five years old. Her diagnosis came about after she fainted in preschool.
“She fainted in preschool, and thankfully they called an ambulance,” says Shirley. “I was in work when they called me, and I went to the preschool. She became responsive after a minute or two and she was playing hide-and-seek with the paramedics when I got there.
“They tested her blood sugar, and she was found to have low blood sugar levels despite the fact she had eaten a big breakfast only a short time previously. I brought her to Portincula Hospital in Ballinasloe, as I was afraid she may have undiagnosed diabetes. Nicole appeared very well and when we arrived in the ED she was singing and dancing around. The doctor took Nicole’s bloods and informed us that the paediatric team would also need to assess her.
“They then had to take a second blood sample and send it to Crumlin for analysis as there were suspicious looking cells showing up on her initial blood film. Later that evening, the paediatrician in Portincula Hospital confirmed the devastating news to us that Nicole had indeed some form of leukaemia.
“While in Crumlin, the consultant said Nicole was approximately one to two weeks off becoming symptomatic. She ended up requiring blood transfusions, as it was described by the team that the cancer cells were literally spilling out of her bone marrow into her blood and affecting her normal blood cells.”
This marked the beginning of Nicole’s course of treatment, which included multiple trips to theatre for the injection of chemotherapy into her spine, and she also had to have a Hickman line put in for the administration of IV chemotherapy and various other medications.
“The initial phase of treatment was extremely harsh on Nicole, but we understood that it needed to be done,” says Shirley. “Nicole wasn’t able to walk independently, she would fall if left unaided, she experienced severe nausea, overall swelling from the steroids and joint pain. Her hair started to fall out a few weeks after starting treatment which really did trigger with us that she was indeed a ‘sick’ child.
“She had six months of IV chemo, with intermittent trips to theatre for intrathecal chemo after this she went onto maintenance therapy, which involves her taking oral chemo daily. Once a week we take her bloods at home and send them to Crumlin, her team then advise us on the therapeutic dose of medication for the coming week. She must remain on this chemo until May 2025.”
Shirley says that although going through childhood cancer was really tough on the whole family, they found great support from the Irish Cancer Society. Nicole is now back to being the energetic child she once was and is in senior infants, alongside her twin brother Aidan.
“She’s very good now, being on the oral chemo has just become part of her normal life and she even reminds us to give it to her. She’s full of energy, her hair has grown back, and earlier this year we were able to get her Hickman line removed so now she can do things such as swimming.
“We’re very lucky – she’s doing well in her treatment, and thankfully everything is going in the right direction.”
Nicole and her four siblings all participate in the music therapy strand of the Irish Cancer Society’s Creative Arts Therapy service, which allows the children to express themselves through music-based activities.
“We recently had our seventh music therapy session, and the kids love it,” says Shirley, who lives in Offaly with her spouse Noel and their five children. “I was afraid of the impact Nicole's diagnosis and my absenteeism while in hospital with Nicole would have on the rest of the children.
“Our whole household was disrupted, and the other kids all have different ways of dealing with it. They love the music therapy and Ciana the therapist. I don’t go to the session as they’re for the kids – but it provides them with a safe space to express their feelings. They enjoy the interaction, and it really resonates with them.”
The family also went to an Irish Cancer Society funded camp in Barretstown in October 2023 for families affected by childhood cancer. It was a moving experience, says Shirley, and it gave both her and Noel the opportunity to meet other families whose children had been diagnosed with cancer. They found that they could relate to other parents and their stories.
“The camp was absolutely unbelievable,” she says. “Even driving up to the house, we were all so excited. It was our first time away together as a family of seven, since Nicole was diagnosed.
“All the children were brought off for various activities, they got to play with toys, perform in drama shows, try their hands at archery and horse-riding to name a few. You just feel really content when you’re there. I’ve already decided I’m going to sign up and go back as a volunteer. It is truly a magical world.”
The Keyes’ also received the Irish Cancer Society’s Children’s Fund grant of €3,000 for families affected by childhood cancer, which provided some financial relief to the family while they were navigating their next steps after Nicole’s diagnosis.
“We’re both working parents, working full time, with a mortgage and bills to pay,” says Shirley. “I had to go on unpaid leave for around eight months, then you have the expense of going up and down to Crumlin and the cost of tolls and diesel, all while we were down a wage. It does have a financial impact on the whole family.
“The Children’s Fund gave us reassurance, because after your child gets a cancer diagnosis, the rug is pulled out from under you. The medical social worker in Crumlin guided us to apply for the Irish Cancer Society’s Children’s Fund as it is not means tested and it was an automatic approval for Nicole.
“To be able to access the fund following a simple application was phenomenal and an absolute gift. I can’t even put into words how grateful we were for receiving it during a time of need. We would always have been advocates for various charities throughout the years but to see where the money goes firsthand is a very eye opening and humbling experience.
“The Irish Cancer Society have provided phenomenal support to us as a family throughout Nicole's Cancer journey and this year she wore her Daffodil lapel pin with great pride. No one knows when the expertise, support and kindness shown by this great charity will be needed in their own homes.”
