“My baby’s soft spot looked different and I knew something was wrong”
By Practical Parenting team
January 30 2019
When little Ellie Walton was just four months old, her parents noticed that her soft spot looked different and slowly started bulging from her head.
Her mum, Sarah, says the day they found out what was happening to Ellie their lives changed forever.
After a cat scan and MRI, they were told that Ellie had a brain tumor one-third the size of her brain.
“I can’t describe the feeling of hearing the words ‘Your child has a brain tumor,’” she writes on Café Mom.
“It’s a roller coaster of emotions, and all I remember is crying, and asking God ‘Why?’ A question I still ask to this day.”
The family were told that Ellie would need surgery immediately, and that her chances of survival were very slim.
Ellie went through a nine-hour surgery and made it through, then required another surgery within the next few days. The prognosis was good, the tumor was not cancerous and she would just need three-monthly appointments to keep an eye on it.
Sadly, just three months later Ellie’s tumor had grown so much she needed another gruelling surgery.
After the third surgery, it become apparent that the tumor was still growing and Ellie was put on chemotherapy.
“By July of 2015, Ellie had already spent most of her young life in a hospital. We would soon hear more bad news,” Sarah said.
“The once ‘benign’ brain tumor was now highly malignant; the biopsy showed that Ellie’s tumor was now glioblastoma multiforme stage four. The doctors gave her a 5 percent survival rate.”
After more surgeries, radiation and chemotherapy, Ellie woke up one day in extreme pain. A visit to the hospital revealed that this time the tumour was on her brain stem and was fatal.
“We started Ellie on an immunotherapy drug to try and prolong life, but even by the time of starting it, she was sleeping 23 hours a day,” Sarah said.
“We spent the next month right next to her. Singing to her, telling her about the lives she had changed, and holding her hand. Even sleeping, she managed to smile, and to bring smiles to those around her, as the world watched her fight, and prayed for her miracle.”
Little Ellie tragically passed away just a few weeks before her fourth birthday. Her family have set up a legacy in Ellie’s honour called Love Like Crazy, to help support families during their time of need.