Finding out your child has cancer has to be every parent’s nightmare — something Emma Moran and her partner Alan discovered when their little boy Joey was diagnosed with a brain tumor, despite “never having been sick.”
Joey was a happy, wild boy who was always climbing the highest wall or tree – he always found a way to conquer it,” says the mother of three (Alan, 15, Joey, 10 and Kellyann, 4) . He was an absolute legend on the quad and full of mischief – but with a heart of gold. He loved spending every opportunity he got with his big brother and little sister and had never been ill.
“But on the first day of school in September 2020, Joey started acting very strange. He got out of the car and just as he was about to walk to the school yard, he turned around and tears ran down his face. He loved school so it came as a shock and his dad took him home. During the day he was extremely tired and later that night he threw up and said he felt weird.”
The little boy got sick again that night, but when his sister got stomach worms, they assumed they both had the same thing. But when the vomiting stopped, he became very upset about going back to school and asked his parents not to send him. He was due to have communion on September 19th and Emma thought he would be better in a few days. But he suddenly took a turn for the worse.
“On September 18, he sat at the end of the table and started to pass out in front of us,” she says. “He couldn’t hear us speak and since he was showing all the signs of a stroke he couldn’t interact with us and the right side of his body couldn’t move. We put him on the couch and he just seemed to freeze – so I called an ambulance and he was taken to the hospital straight away.
“He was really absent and was sent straight away for a CT scan – then he was taken back to an emergency room for a few minutes and the doctors told me he would be sent for another scan but was in safe hands .
“They said they needed to talk to me and as he was being wheeled out of the room I was overcome by a fear I had never felt before. They said he had another scan while an ambulance was on the way as there was a mass in his brain that was causing him to have the episodes he did. He would require emergency surgery and was taken to Temple Street Hospital in Dublin.”
Emma, who lives in Tipperary, was told it was very likely her son had an infection in the brain, but a doctor said it could be a growth. She had just enough time to call her husband to tell him what had happened and began the horrifying ambulance ride with her young son.
After testing negative for Covid-19, he was sent to the theater where surgeons planned to “drain” the infection from his brain. But unfortunately, they found the mass to be solid, and after samples were taken and sent out for testing, the news was not good.
“On September 27th, our whole world collapsed when we were told that Joey had grade 3 anaplastic pleomorphic xanthoastrocytoma (PXA) in the left anterior parietal region,” says Emma. “We were completely shocked and didn’t really believe our wild boy had cancer – we just couldn’t understand why it was happening.
“He had to have surgery to remove the tumor and a custom bone flap had to be put in place. We were told that he may have weakness on the right side of his body and may have speech problems.
“He had surgery on September 30th and had six weeks to recover before having to undergo radiation therapy (30 sessions over six weeks) – but just a few weeks into starting treatment he started showing the same symptoms, which he had first with and after an MRI. Our greatest fears came true when it was discovered that the tumor had grown back.”
Fortunately, as treatment progressed, the tumor stopped growing and after a period of recovery, he began chemotherapy in January 2021 – and although it caused “problems with his blood” and further surgery to remove the tumor was postponed, he underwent finally a second operation on his brain on May 26th.
This successfully removed both the tumor and other abnormal cells. And while he continued to have weakness on his right side, the little boy showed his determination and worked really hard, “shocking the doctors with his mobility and how well he was recovering.”
This was short-lived, however, as he again showed signs of language and mobility issues on June 30. And although doctors initially thought he had an ear infection, tests showed he had fluid in his brain and would need further surgery.
But while he recovered well, it wasn’t long before the cancer reared its ugly head and he underwent more chemotherapy.
“Chemo gave Joey hell, but with no regrowth, we were excited and started making things right,” says Emma. “He taught himself to play Xbox with his left hand, got his speech back, could walk again and was able to enjoy just being a kid.
“Then on November 1 we were told his tests were clear and everything looked bright and beautiful. We were at a real high point, and it was only then that the reality of the hardship our boy had been going through really began to hit us.
“His desire to be a normal kid again seemed likely and for three months everything was fine and we were so excited. But then it started again – and when I contacted the hospital they said if it didn’t get worse or if Joey was scared we should wait for the scheduled MRI.
“Since he didn’t have a headache or vomit, we thought it was just because he was overdoing it. But after the MRI we waited with horrified emotions and then I got the dreaded phone call that our nightmare was confirmed – there was growth in the same area again and Joey would have to repeat the same treatment all over again.
“We would not let cancer take our son. Although we’ve been told he may be without full powers (on the right), we agreed — as a family (including Joey) — that it would be better to do it. He said he wasn’t scared as long as we were all together.”
On March 4, 2022, Joey underwent another surgery and the family was delighted to learn that it was successful. But there were many side effects, including reduced mobility and speech, along with memory-related problems. He will not be able to undergo radiation therapy again, and further chemotherapy will only slow new regrowth.
The little boy also suffered a bout of Covid-19, during which he went through a 19-day period of isolation, and a tummy bug that caused him to lose a lot of weight. But he was able to return home to his family, where he now takes oral chemotherapy drugs.
However, there are still concerns as recent MRI scans showed a “glow”. And while his family is concerned about it, they’ll have to wait until November to find out if it’s scar tissue or further tumor regrowth.
“We’re now bringing in the palliative care team to help as it’s starting to have a massive impact on us almost two years later,” says Emma. “We’ve always been close family and have never called for help, but now we’re having an extremely difficult time waiting for the next MRI. I don’t know how we would have managed without my parents as they did everything they could to make this trip as easy as possible – we could never thank them enough.”
As they eagerly await more news, the mother-of-three would advise other parents to seek advice if they have concerns and not to worry about being seen as overly cautious.
“I would say to any parent whose child says something is wrong to take note and step in and take care of them,” she says. “Children are smarter than you think and should be heard. Joey had hearing problems when he was four years old, which he described as snails in his ears. He used to sleepwalk and get nervous night terrors – that might sound like childhood stages, but if you think things are a little off I would advise parents to follow up and push to be heard. Be aware of the signs of childhood cancer because we had no idea.
“Joey has given us the strength to push through as he’s staying on the positive side and not groaning or giving up. He keeps us from thinking negatively by holding on to hope and faith.”
Visit cancer.ie for more information
https://www.independent.ie/life/health-wellbeing/health-features/joey-was-never-ill-we-couldnt-believe-our-wonderful-wild-boy-had-cancer-our-whole-world-crumbled-42052448.html “Joey was never sick – we couldn’t believe our beautiful, wild boy had cancer. Our whole world collapsed’