A mother urges parents to “trust their gut” after noticing a sudden change in her baby’s eye movements that turned out to be the symptom of a rare brain tumor.
Laura Kelly and her husband Cheyne’s lives were turned upside down when they heard the news that their then 16-month-old son Noah has stage 4 pineoblastima brain cancer.
The pair knew something was wrong, but said doctors attributed Noah’s strange symptoms to a virus and problems with his eye muscles before an MRI finally found a tumor “the size of a small tangerine” in his brain.
Noah, now 19 months old, is Laura and Cheyne’s ‘miracle’ baby after struggling with fertility issues and two miscarriages for four years.
“It was such a miracle for us to bring Noah to Earth after a difficult fertility journey,” said the Sydney mother.
Parents of Noah Kelly (pictured) have spoken out urging moms and dads to ‘trust their gut’ after a change in their son’s eye movements was found to be a symptom of a rare brain tumor
Laura Kelly (right) and her husband Cheyne (left) had their lives turned upside down when they heard the news. Noah has pineoblastima stage 4 brain cancer at 16 months old
“There are so many beautiful children riddled with this devastating disease, but when it’s yours, it really hits and your whole world comes crashing down.”
In February, they noticed that Noah’s right eye turned inward. He then had trouble walking and became more irritable.
They quickly arranged an appointment with an ophthalmologist before Noah fell ill at daycare with 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,” said Laura.
“In the middle of the night, Noah was throwing up and we found him shaking with a fever, so we drove to ED at 3 a.m.”
The doctor assigned to Noah said his fever was due to a virus, but did not think it necessary to examine the problem with his right eye.
“They concluded his strabismus was due to a problem with his eye muscles and suggested it could be fixed with glasses or eye patches,” said Laura.
Noah has had five surgeries in just over two months and has begun chemotherapy to treat the tumor in his brain that is the size of ‘a small tangerine’
What is Pineoblastoma?
Pineoblastoma is a type of cancerous (malignant) tumor that grows in a part of the brain known as the pineal gland. It mainly occurs in children.
Symptoms of pineoblastoma include a buildup of fluid around the brain (hydrocephalus), headache, nausea, and difficulty with eye movement.
The cause of pineoblastoma is unknown, but specific inherited genetic variants in two genes, RB1 and DICER1, may increase the risk of pineoblastoma.
Diagnosis is based on the symptoms, clinical examination and imaging studies.
In addition, a biopsy is often done to examine a small piece of tumor tissue under the microscope.
Source: rare diseases.info.nih.gov
“They also sent us home, knowing we had to see the ophthalmologist in a few days.”
However, the consultation with the ophthalmologist raised the alarm when they said that there were no problems with Noah’s eye muscles, but that the optic nerve was swollen.
“This is a very serious matter, so we went straight back to the ER and put ourselves on the waiting list for an MRI,” Laura said.
The MRI found a large mass in Noah’s brain, and doctors ordered emergency surgery the next day to perform a biopsy and relieve pressure on his eye.
“It was terrible news to receive, and nothing a parent wants to hear about their baby,” said Laura.
“There was a 10-day waiting period between performing the biopsy and confirming the results. The hardest part was waiting.’
The results confirmed every parent’s worst nightmare: Noah had stage four pineoblastoma, a rare and fast-growing brain cancer.
The little boy has had more than five brain surgeries in just over two months since news of his cancer.
One of the surgeries was an emergency procedure he had to undergo just days after starting chemotherapy, which will make his recovery more difficult.
In February, the parents noticed that Noah was almost cross-eyed as his right eye turned inwards, then he started having trouble walking and became more irritable
An MRI found a large mass in Noah’s brain and doctors ordered emergency surgery the next day to perform a biopsy and relieve pressure on Noah’s eye
Throughout the turmoil, Laura and Cheyne made sure to cherish every moment spent with their son.
“It’s hard to see your whole life turned upside down, but you have to adapt quickly,” said Laura.
“Simple things like spending time together as a family and celebrating special milestones are affected because it’s hard to plan when Noah has recovered enough to do activities together.”
The parents are also grappling with the rising cost of living and interest rate hikes on top of Noah’s medical bills.
“Work has supported us, but once your leave is up, the loss of income you’re dealing with becomes apparent for such a long journey ahead,” said Laura.
“One parent’s income and career is suspended in order to move into a full-time role as a caregiver. The other parent is torn between being away from Noah versus finding time for work, which also results in lower pay.”
Laura and Cheyne spend every moment they can by Noah’s side, saying it’s an “easy decision” to waive both salaries during times when he’s healthy enough to leave the hospital.
Laura and Cheyne spend every moment they can by Noah’s side, saying it’s an ‘easy decision’ to waive both salaries during times when he’s well enough to leave the hospital
The parents are also struggling to cope with the rising cost of living and interest rate hikes on top of Noah’s medical bills as they live off one income
“Before he started chemo, Noah came home for almost a week and temporarily enjoyed a normal childhood where we saw him playing very cheerful and happy,” said Laura.
“His eyesight now appears to be back to normal and he had almost regained his ability to crawl and was attempting a few steps unassisted after being largely bedridden for the past two months.”
However, Laura and Cheyne feel the pinch and rely on the support of family and friends, two of whom have made one GoFundMe page to raise some much needed money 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 very grateful to all of our family and friends who have reached out and provided support,” said Laura.
“Whether that’s cooking for us or sitting with Noah while he sleeps so we can grab a cup of 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 learned from Noah’s illness is that parents should always trust their gut and instincts when it comes to their child’s health.
As parents, you know your child best. If you feel like something isn’t right, keep advocating for it,” she said.
“There have been a few times where we were rejected by medical staff and then something serious happened that might have been prevented.”