Mother of baby with rare brain tumor warns parents after being discharged by doctors

A mother is telling parents to “trust their guts” after noticing a sudden change in their baby’s eye movements, which turned out to be a symptom of a rare brain tumor.

The lives of Laura Kelly and her husband Cheyne were “turned upside down” when they received the news that their then 16-month-old son Noah had stage 4 pineoblastima brain cancer.

The couple knew something was wrong but said doctors traced Noah’s strange symptoms to a virus and problems with his eye muscles, before an MRI finally discovered a tumor in his brain “the size of a small tangerine”.

Noah, now 19 months old, is Laura and Cheyne’s “miracle baby” after four years of struggling with fertility problems and two miscarriages.

“It was a miracle for us to bring Noah to earth after a difficult fertility journey,” said the Sydney mother.

“There are so many wonderful children stricken with this devastating disease, but when it’s your own it really hits you and your whole world falls apart.”

In February, they noticed Noah’s right eye turned inward. Then he had difficulty walking and became more irritable.

They quickly made an appointment to see an eye doctor before Noah fell ill with a fever and lethargy at daycare.

“We had planned to go to the emergency room 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 was throwing up and we found him shaking with a fever, so we drove to the emergency room at 3am.”

The doctor assigned to Noah said his fever was due to a virus but saw no need to investigate the problem with his right eye.

“They concluded that his squint was due to a problem with his eye muscles and suggested it could be fixed with either glasses or eye patches,” Laura said.

“They also sent us home, knowing full well that we had to see an eye doctor in a few days.”

However, the consultation with the ophthalmologist caused alarm when she said 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 were put on the waiting list for an MRI,” Laura said.

The MRI detected a large mass in Noah’s brain, and doctors ordered emergency surgery the next day to perform a biopsy and relieve the pressure on his eye.

“It was devastating news and not something any parent would want to hear about their baby,” Laura said.

“There was a ten-day wait between taking 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 type of brain tumor.

Since the news of his cancer, the little boy has undergone more than five brain surgeries in just over two months.

One of the surgeries was an emergency procedure that he underwent just days after starting chemotherapy, which will complicate his recovery.

Despite the turmoil, Laura and Cheyne have made sure to cherish every moment they spend with their son.

“Turning your whole life upside down is a difficult thing, but you have to adapt quickly,” Laura said.

“Simple things like spending time together as a family and celebrating special milestones are being impacted as it’s difficult to plan for when Noah will be well enough to enjoy activities together.”

Parents are also struggling to cope with the rising cost of living and interest rate hikes that add to Noah’s medical bills.

“The work has been supportive, but once your leave is up the loss of income you face becomes apparent for such a long journey that lies ahead,” Laura said.

“One parent’s income and career is put on hold to move into a full-time caregiver role.” The other parent is torn between being away from Noah and finding time to work, which also results in less pay .”

Laura and Cheyne spend every moment by Noah’s side, saying it’s an “easy decision” to forego both salaries if he’s well enough to leave the hospital.

“Before Noah started chemotherapy, he came home for almost a week and temporarily enjoyed a normal childhood where we saw him play very cheerfully and happily,” Laura said.

“His vision now appears to be back to normal and he was on the verge of regaining his ability to crawl and was attempting to walk a few steps unassisted after being bedridden for most of the past two months.”

Feeling the need, however, Laura and Cheyne depend on the support of family and friends, two of whom have created a GoFundMe page to raise much-needed money for the family.

“During difficult times like these, the community around you is important.” “Most people feel helpless about what they can do, but we are so grateful to all of our family and friends who have reached out and supported us,” said Laura .

“Whether it’s cooking meals for us or sitting with Noah while he sleeps so we can have coffee and get some fresh air.” “We were blown away by the kindness of strangers and small business owners.”

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 a parent, you know your child best.” “If you feel like something is wrong, keep standing up for them,” she said.

“There were a few times that we were turned away by the medical staff and then something serious happened that might have been prevented.”