Michelle and Sophia's Story
“Sophia-Grace was constantly getting sick. I knew there was something wrong. Her eyes had sunken in, she was so pale and she just looked sick.”
At age three, Sophia-Grace Conway received her first cancer diagnosis after a brain tumour was discovered during a scan. The young girl then had two cancer recurrences, one in 2019 and another in 2020. After finishing treatment in 2021, she struggled with anxiety and linked in with the Irish Cancer Society’s Creative Arts Therapy service.
“She had eight art therapy sessions and now she’s doing really well, she’s a lot better,” says Sophia Grace’s mam, Michelle. “She didn’t talk to me much about what was going on, but she’d get very anxious going into school – she’d be crying or she’d get sick, but I know she opened up about it in art therapy.
“She had a great bond with the art therapist, and I could see a turning point with Sophia. When she went to school after going to therapy, she was a lot less anxious – it was like she was a completely different child."
Sophia-Grace’s first diagnosis came about after she kept being sick and complained of pains in her head, and it took ten weeks from her symptoms showing in October 2017 to her diagnosis with a brain tumour the following December.
“We got a hospital referral, and they said Sophia was dehydrated and had an ear infection,” says Michelle. “But she kept getting sick, and then she was complaining of pain in her head. She would wake up at 4am every morning, saying she had a pain in her head and then she’d get sick. Then it would happen again at 10am every morning. I could nearly set my watch to it."
"They said the tests they did weren’t showing anything. She lost a lot of weight and got a lot of headaches. The only thing she didn’t lose was her balance, so the doctors didn’t think it was anything sinister because of that."
“Then they said she had reflux and put her on tablets for that. But she continued losing weight and getting sick. She looked unwell and was really pale. This went on for ten weeks. We kept insisting there was something wrong with her, but they kept saying nothing was showing up in the tests they did.”
Michelle and her partner insisted on their daughter being sent for an MRI, but on the morning of the scan they were told the MRI wasn’t working that day, so they sent her for a CT scan instead.
“That afternoon, on the 8th of December, they rang us to say we had to come back into hospital straight away. Two doctors came into the room, they said they found a mass and they were sending Sophia to Temple Street. I was really angry, because we had insisted something was wrong with her, but they kept saying there wasn’t anything wrong.”
Sophia-Grace had successful surgery to remove the tumour and then went to Germany for proton beam therapy. She had two scans afterwards three months apart, which came back clear, but a scan in January 2019 showed a spot in a new area. She had to undergo surgery, and radiation treatment for six weeks in St Luke’s in Rathgar.
“She was still so young, so she was kind of oblivious and just got on with it,” says Michelle. “She used to say she was going there to get her ‘sleep milk’ and go to sleep for a while. She’d be skipping down the hall in St Luke’s and playing with the porter. They made a fuss of her. They gave her a name badge with ‘The Boss’ on it and brought her to feed the fish. They made it so fun for her.”
After that, Sophia-Grace again had two scans three months apart that came back clear. Then, in January 2020, a scan showed another new spot and this time, she had chemotherapy.
“Chemo was probably the worst of the whole lot of treatment she’d had, because she lost her hair and she was older at this stage, so she was more aware of what was happening.”
“She wouldn’t cut her hair when it started falling out. She kept strands of it and had bald patches. Half of her hair was gone, but it didn’t phase her, she got a wig and a bandana hat. She finished chemo on the 26th of February 2021.
“She still has side effects from her treatment. She lost half of her hearing due to the chemo drug she was on, she did get hearing aids, but she won’t wear them. She got a condition called Horner’s Syndrome, which caused her to have a droopy eye initially, which resolved.
"But it left her with one pupil bigger than the other, but this is only noticeable if you look very close at her eyes. She still goes to a clinic in Crumlin Children's Hospital, so she has a lot of appointments still.”
Sophia-Grace is now doing well, and Michelle said her family benefited from the Irish Cancer Society’s Children's Fund as it helped them financially when herself and her partner had to give up work during their daughter’s treatment.
“The Children’s Fund made a huge difference, because there were a lot of costs with going from our home in Nurney, Kildare, to Temple Street and St Luke’s. Myself and my partner had to stop working, and I became Sophia’s carer, so the extra money made a huge difference.”
Michelle is sharing her experience to encourage other parents to be persistent if they notice any symptoms of concern in their children.
“I would tell any parents who notice concerning symptoms in their children to be persistent, and go with your own gut if you feel something is wrong.
"We started to doubt ourselves near the end – we thought maybe we were overreacting or being overprotective. But we were very concerned that something was wrong with her, and we weren’t being listened to. Medical staff need to listen to parents more and take their concerns more seriously.”
