Life ‘flipped on its head’ for Dublin parents when daughter Zoe fell ill on a family holiday
David and Emma Mills, originally from Swords but now living in Donabate, are parents to Tom and Zoe. Last summer, they went on a family holiday where Zoe became quite unwell. However, they initially put it down the heat and lack of routine.
“Zoe was born in September 2022, and she was a great baby. There were never any issues and she met all our milestones,” David said.
“We went on a family holiday. She was a little bit off with her feeding and sleeping. We put that down to being away and didn’t really think much of it.
“We came home, and we thought she was going to get better by being back in a routine. But as the week went on, she was getting worse.
“On the August bank holiday weekend, we brought her to the GP who advised us to take her to the hospital. We didn’t think anything, we thought it would be just a routine check-up.
“The next week, she was getting worse by the hour, so we brought her back on Wednesday, August 9. They did a couple of tests, they did scans on the Thursday morning and brought us down to a room. I still remember shivers going through me.
“Being called down to the room, we knew something wasn’t right, but we still never thought it would have been the diagnosis we got. Our life just literally flipped on its head. Nothing else mattered.”
Zoe’s mum, Emma, added: “You don’t ever, ever expect to hear that word about a 10-month-old baby. It’s just really hard.
“Tom is her big brother. At the time she was diagnosed, he was due to start Junior Infants two weeks later. Our world turned upside down and his world was also completely turned upside down during a time when he was meant to be all excited for starting school.
“He’s brilliant with her, he’s a proper big brother looking out for her and minding her. We had to try and keep things normal for him too.”
Baby Zoe was diagnosed with stage 4 neuroblastoma
Zoe had been diagnosed with stage 4 high-risk neuroblastoma, an extremely aggressive childhood cancer.
“We were in Temple Street that Wednesday and Thursday. Then she was brought by ambulance late Thursday night to Crumlin,” David said.
“They told us there’d be a bed in St John’s Ward, which is the cancer ward, and she’d be starting treatment the following day.
“They’d to put an intravenous line into her and they did bone marrow aspirates. There were a number of things that were done on that Friday in Crumlin to prepare her for the treatment. She started chemotherapy at about 6pm on the Friday evening.
“In the space of one week we went from what we thought was a child with a bit of a bug to being on chemotherapy. We were just landed with this complete and utter shell shock; we went from zero to 100 miles an hour.
“We spent seven weeks in the hospital, Zoe was so unwell. She was in ICU for a week, it was very, very tough with one of us constantly in the hospital with her.
“Even when she did get home, she had to go on chemotherapy every 10 days, so she’d to go back. But there were so many different things going on with her. We might have got home after one round of chemotherapy, but two or three days later, she could have a temperature, and we’d have to go back in.”
Now, Zoe is currently doing her best to stand up, take a few steps, say a few words, and even sing along to her favourite movie, Frozen.
She is getting used to her hearing aids, which were necessary after the hearing loss caused by chemo, and communicating better every day. Her feeding tube is still in place and still required for her nutrition and daily medication.
She is full of personality and fun, and extremely determined. Her parents are hoping immunotherapy will be the final stage of Zoe’s frontline treatment.
They’re hoping there will be no evidence of disease in her post-treatment PET scan later this year.
But they believe the next stage is to bring Zoe to neuroblastoma maintenance therapy which aims to prevent the disease returning. This treatment is only available as clinical trials in the USA.
“It’s maintenance therapy and the idea is that it prevents relapse,” Emma said.
“With high-risk neuroblastoma, which is Zoe’s diagnosis, the relapse stats are awful and particularly in the first six months and even into the first couple of years. These maintenance therapies are targeting recurrence with the aim to prevent it coming back.
“It’s been a long road. The first phase of chemo was really tough and handing her over for surgery was awful as well. The transplant was particularly bad on her, it left her completely floored and lifeless.
“High-risk neuroblastoma has a very high relapse rate, and limited treatment options if relapse occurs. This makes the longer-term survival statistics unthinkable, so we’ve set up a GoFundMe to get Zoe the treatment she needs.”
You can find out more about the fundraiser for Zoe here.
