A mum is urging parents to ‘trust their gut’ after she noticed a sudden change in her baby’s eye movements that turned out to be the symptom of a rare brain tumour.
Laura Kelly and her husband Cheyne’s lives were ‘turned upside down’ when they received the news their then-16-month-old son Noah has pineoblastima stage 4 brain cancer.
The pair knew something was wrong but said doctors put Noah’s strange symptoms down to a virus and issues with his eye muscles before an MRI eventually uncovered a tumour in his brain ‘the size of a small mandarin’.
Noah, now 19 months, is Laura and Cheyne’s ‘miracle’ baby after they struggled through four years of fertility issues and two miscarriages.
‘It was such a miracle for us to bring Noah earthside after a difficult fertility journey,’ the Sydney mum said.
Parents of Noah Kelly (pictured) has spoken out urging mums and dads to ‘trust their gut’ after a change in their son’s eye movement turned out to be a symptoms of a rare brain tumour
Laura Kelly (right) and her husband Cheyne’s (left) lives were ‘turned upside down’ when they received the news Noah has pineoblastima stage 4 brain cancer at 16 months old
‘There are so many beautiful children that are riddled with this devastating disease, but when it is your own, it really hits home and your whole world comes crashing down.’
In February, they noticed Noah’s right eye was turning inwards. He then started having difficulty walking and became more irritable.
They quickly arranged an appointment with an ophthalmologist before Noah became sick at daycare with a fever and lethargy.
‘We planned to travel to the Emergency Department at Sydney Children’s Hospital Randwick around 8am the next morning to find out what was going on,’ Laura said.
‘In the middle of the night, Noah threw up and we found him shaking with a fever, so we drove over to ED at 3am.’
The doctor assigned to Noah said his fever was due to a virus but didn’t see any need to look into the issue with his right eye.
‘They concluded his cross-eye was due to an issue with his eye muscles and suggested it could be resolved using either glasses or eye patches,’ Laura said.
Noah has had five surgeries in just over two months and has started chemotherapy to treat the tumour in his brain which is the size of ‘a small mandarin’
‘They also sent us home knowing we were due to see the eye specialist in a few days.’
However, the consultation with the eye specialist raised alarms when they said there wasn’t any issues with Noah’s eye muscles, but that the optic nerve was swollen.
‘This is a much serious matter, so we immediately proceeded back to ED and get put on the waiting list for an MRI,’ Laura said.
The MRI found a large mass on Noah’s brain and doctors ordered emergency surgery the next day to perform a biopsy and relieve the pressure impacting his eye.
‘It was devastating news to receive, and nothing any parent wants to hear about their baby,’ Laura said.
‘There was a 10 day waiting period between the biopsy being performed and confirming the results. The hardest part was the waiting.’
The results confirmed any parent’s worst nightmare – Noah had a stage four Pineoblastoma, a rare and fast-growing type of brain cancer.
The little boy has undergone more than five brain surgeries in just over two months since the news of his cancer.
One of the operations was an emergency procedure he had to have just days after starting chemotherapy which will make his recovery more challenging.
In February, the parents noticed Noah was going almost crossed-eyed as his right eye was turning inwards then he started having difficulty walking and became more irritable
An MRI found a large mass on Noah’s brain and doctors ordered an emergency surgery the next day to perform a biopsy and to relieve the pressure impacting Noah’s eye
Through the turmoil, Laura and Cheyne have been making sure to cherish every moment they spend with their son.
‘Having your whole life instantly turn upside down is a tough one but you need to quickly adapt,’ Laura said.
‘Simple things, like spending time together as a family and celebrating special milestones have been impacted as it is difficult to plan when Noah will be well enough to experience activities together.’
The parents are also struggling to deal with the rising cost of living and interest rate rises on top of Noah’s medical bills.
‘Work has been supportive, but once your leave has run out, the loss of income you are facing becomes apparent for such a long journey ahead,’ Laura said.
‘One parent’s income and career are put on hold to change to a full-time carer role. The other parent is torn between being away from Noah versus finding time for work, which also ends in a reduced wage.’
Laura and Cheyne spend every moment they can by Noah’s side and say it is an ‘easy decision’ to forgo both salaries during times when he is well enough to leave hospital.
Laura and Cheyne spend every moment they can by Noah’s side and say it is an ‘easy decision’ to forgo both salaries during times when he is well enough to leave hospital
The parents are also struggling to deal with the rising cost of living and interest rate rises on top of Noah’s medical bills as they are living on one income
‘Prior to starting chemo, Noah came home for nearly one week and went back to temporarily enjoying a normal childhood where we saw him in really in good spirits and happily playing,’ Laura said.
‘His vision now appears to be back to normal and he was close to regaining his crawling strength and attempted a few unassisted steps after being mostly bedridden for the last two months.’
However Laura and Cheyne are feeling the pinch and relying on support from family and friends, two of whom have created a GoFundMe page to raise some much-needed money for the family.
‘The community around you is important in tough times like these. Most people feel helpless in what they can do but we are very grateful of all our family and friends who have reached out and given support,’ Laura said.
‘Whether that be cooking meals for us or sitting with Noah while he sleeps so we can grab a coffee and get some fresh air. The kindness of strangers and small business owners has blown us away.’
One of the most valuable lessons Laura has learned through Noah’s illness is that parents should always trust their gut and instinct when it comes to their child’s health.
‘As parents you know your child the best. If you feel something isn’t right, continue to advocate for them,’ she said.
‘There have been a few times we’ve been turned away by medical staff and then something serious happens that may have been prevented.’
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