A mum is urging parents to ‘trust their instincts’ after noticing a sudden change in her baby’s eye movements that turned out to be a symptom of a rare brain tumour.
The lives of Laura Kelly and her husband Cheyne were ‘turned upside down’ when they learned their son Noah, then 16 months old, had stage 4 pineoblastima brain cancer.
The couple knew something was wrong, but said doctors attributed Noah’s strange symptoms to a virus and eye muscle problems before an MRI eventually uncovered a tumor in his brain “from the size of a small mandarin”.
Noah, now 19 months old, is Laura and Cheyne’s ‘miracle’ baby after battling four years of fertility issues and two miscarriages.
“It was such a miracle for us to bring Noah to earth after a difficult fertility journey,” Sydney’s mother said.
The parents of Noah Kelly (pictured) have spoken out to urge mums and dads to ‘trust their instincts’ after a change in their son’s eye movement was found to be a symptom of a tumor rare cerebral
The lives of Laura Kelly (right) and her husband Cheyne (left) were ‘turned upside down’ when they learned Noah had stage 4 pineoblastima brain cancer when he was 16 months old
“There are so many beautiful children who are riddled with this devastating disease, but when it’s yours, it really hits home and your whole world comes crashing down.”
In February, they noticed that Noah’s right eye was turning inward. He then began to have difficulty walking and became more irritable.
They quickly made an appointment with an eye doctor before Noah fell ill at daycare with a fever and lethargy.
“We had planned to go 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 fever, so we went to ED at 3am.”
The doctor assigned to Noah said his fever was due to a virus but did not consider it necessary to examine the problem with his right eye.
“They concluded that her crossed eye was due to a problem with her eye muscles and suggested it could be resolved by using glasses or eye patches,” Laura said.
Noah underwent five surgeries in just over two months and started chemotherapy to treat the tumor in his brain which is the size of a “little tangerine”.
“They also sent us home knowing we had to see the eye specialist in a few days.”
However, the consultation with the ophthalmologist raised alarm bells when they said there was no problem with Noah’s eye muscles, but the optic nerve was swollen.
“This is a very serious matter, so we immediately went back to the ER and were 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 affecting his eye.
“It was devastating news to receive, and no parent wants to hear about their baby,” Laura said.
“There was a 10-day waiting period between the biopsy being performed and the results being confirmed. The hardest part was the wait.
The results confirmed any parent’s worst nightmare – Noah had stage four pineoblastoma, a rare, fast-growing type of brain cancer.
The little boy has undergone more than five brain surgeries in just over two months since his cancer was announced.
One of the operations was an emergency procedure which he had to undergo just days after starting chemotherapy, which will make his recovery more difficult.
In February, parents noticed Noah was almost cross-eyed as his right eye turned inward, then he started having difficulty walking and became more irritable.
An 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 on Noah’s eye.
Through the turmoil, Laura and Cheyne made sure to cherish every moment spent with their son.
“Having your whole life instantly turned upside down is tough, but you have to adapt quickly,” Laura said.
“Simple things like spending time together as a family and celebrating milestones have been impacted because it’s hard to plan when Noah will be well enough to experience activities together.”
The parents are also struggling to cope with the rising cost of living and interest rates in addition to Noah’s medical bills.
“Work has been supportive, but once your leave is over, the loss of income you face becomes apparent for such a long journey ahead,” Laura said.
“A parent’s income and career is on hold to move into a full-time carer role. The other parent is torn between being away from Noah and finding time to work, which also results in reduced pay.
Laura and Cheyne spend every moment they can by Noah’s side and say it’s an “easy decision” to forgo both salaries during times when he’s well enough to leave the hospital.
Laura and Cheyne spend every moment they can by Noah’s side and say it’s an ‘easy decision’ to forgo both salaries during times when he’s well enough to leave the hospital
The parents also struggle to cope with the rising cost of living and rising interest rates in addition to Noah’s medical bills, as they live on one income.
“Before starting chemo, Noah came home for almost a week and temporarily returned to a normal childhood where we saw him in really good spirits and playing happily,” Laura said.
“His vision now appears to have returned to normal and he was close to regaining his crawling strength and has attempted a few steps unaided after being mostly bedridden for the past two months.”
However, Laura and Cheyne are feeling the pinch and are counting on the support of family and friends, two of whom have set up a GoFundMe page to raise much-needed funds for the family.
“The community around you is important in difficult times like these. Most people feel helpless in what they can do, but we are so grateful to all of our family and friends who have reached out and provided support,” Laura said.
“Whether it’s cooking meals for us or sitting with Noah while he sleeps so we can have coffee and get some fresh air.” The friendliness of strangers and small business owners blew us away.
One of the most valuable lessons Laura learned through Noah’s illness is that parents should always trust their instincts and guts when it comes to their child’s health.
“As parents, you know your child best. If you feel something is wrong, keep standing up for them,” she said.
“There have been several times where we have been turned away by medical staff and then something bad happens that could have been avoided.”
#Mother #baby #rare #brain #cancer #warns #parents #discharged #doctors
