It was fifteen months before the cause of Riley’s change in health was identified. A happy, outgoing boy by nature, Riley started showing signs that all was not well in April 2017. The then nine-year-old boy started vomiting, having headaches and nausea and was sent home from school on a fairly regular basis. His concerned parents Louise and Jamie took him to a doctor to be checked out. The doctor checked Riley over and found nothing of concern so he was sent home.
As time went by, Riley’s health deteriorated. He became lethargic and irritable to noise and couldn’t keep up with his busy sports schedule. His parents took him back to the doctor on numerous occasions as his headaches, nausea and vomiting had not gone away. He had blood tests done which revealed nothing. Everything pointed to Riley being quite fine.
One night in 2017, Riley woke up with a splitting headache. His parents rushed him to Middlemore Hospital’s A&E. His vitals were normal and his headache subsided, so he was sent home. His parents suggested scans be taken but because he seemed fine they weren’t prioritised.
But things were not fine. Riley struggled to get through each day and his health fluctuated. More blood tests were carried out which came back clear and Riley’s GP determined that he was suffering from anxiety, so he was referred to a paediatrician and then on to mental wellbeing specialists for counselling.
Over several months, Riley soldiered on. He saw alternative health professionals but continued to suffer from headaches and vomiting.
Says Louise: “As a Mum I believed him and that it wasn’t anxiety so I tried other ways to figure out what was wrong. It was incredibly frustrating and worrying not knowing what was wrong. My poor son was enduring real pain, discomfort and stress but was being told he was fine. He started to feel like no one was really believing or listening to what he was saying so he endured it as best he could.”
Riley had to be taken to Middelmore Hospital’s A&E a second time in the middle of the night with an excruciating headache. Once again, he was told his vitals were fine and he seemed fine so he was sent home.
June 2018 rolled around and Riley was exhausted. On this particular weekend he had nausea, was vomiting and wanted to lie down on the floor. His parents rushed him to Middlemore again. This time, his vitals were unstable and his parents insisted that scans be taken. Louise and Jamie had decided they were not leaving the hospital until scans were taken. They waited three days for Riley to have his first MRI.
Scans taken, it finally became apparent why Riley had been so ill. He had a large tumour in the middle of his head, near his pituitary gland which was creating pressure on his brain and eye nerves and was blocking the flow of brain fluid around his ventricles.
Riley was immediately transferred to Starship in an ambulance with his stunned parents in tow. He was placed in the High Dependency Unit and prepped for major surgery to release the fluid build-up on his brain in the morning. The tumour had been detected just in time. Riley was on the brink of having a stroke or seizure.
“It felt like the world dropped out from under us,” notes Jamie. “We were in a totally foreign situation and incredibly worried about Riley but we had to try not to show it for his sake.”
After the surgery, Riley immediately felt relief. Two days later, Riley had more major surgery to remove as much of the tumour as possible. The surgery was successful and the tumour was tested to see what type it was. Much to the relief of his parents, it was a benign craniopharyngioma tumour. A shunt was then inserted in a third procedure to help regulate the flow of fluid around Riley’s brain.
Says Louise: “I’ve never seen my son so scared for his life as when he went into those operating rooms three times in a row over ten days. We all had fears that he may not come back to us with each operation, as there were serious risks involved with each procedure.”
Riley spent the next month in Starship’s Neuroservices Ward recuperating from the surgeries. More scans and blood tests were taken and Riley was introduced to a huge amount of daily medication. There were good days when he could deal with things and others when he would break down and hate everything and want to get away from it all.
After being discharged home, Riley spent a month resting and recovering before beginning a 30-day course of radiation therapy, which entailed travelling to hospital for treatment every week day for six weeks. The treatment was traumatising as the radiation treatments were focused on Riley’s head. A playlist of his favourite music was eventually created to help him keep calm and get through it all.
Prior to starting his radiation treatment, Riley and the family met Louise, their Family Support Coordinator. She told the family what to expect in the weeks and months ahead and was always very supportive and “wonderful to just chat with,” says Louise.
As Riley’s treatments and recovery progressed, Louise arranged petrol vouchers and holiday accommodation and invited the family to events arranged by the Foundation, such as movies, a speedway night and the circus.
Riley’s family were also well supported by their community in Beachlands. Within a couple of days of being diagnosed, a local friend set up a dinner and baking roster. Over four months, the family were brought dinners cooked by local ladies who dropped them off half an hour before dinner time. Riley also received personal video messages from television celebrities Jono and Ben, and musician Stan Walker. He also got to meet the All Blacks at Eden Park.
Riley finished his radiation treatment at the end of 2018. Unfortunately, his pituitary gland and eye nerves are damaged and his thyroid has been affected. He has suffered vision loss in both eyes and will be on medication for the remainder of his life to support the five hormones his pituitary gland now doesn’t fully produce. He will also have to contend with various other health issues along the way.
On a happier note, he has started going back to school part time and recently received a grant from the Foundation to purchase a guitar and have music lessons.
Some days we mourn the loss of the lifestyle and the child we had but mostly we are just so grateful that we have been given a second chance with Riley. We’ve been put on a different path and now have to navigate it as best we canLouise, Riley's mum