PART FIVE (SEGMENT ONE) OF A SIX-PART SERIES
The classroom hummed with the familiar sounds of childhood — excited chatter between friends, bursts of laughter and the rustle of exercise books being opened for the day.
For most children, it was just another morning at school but for five-year-old Edeva Von Edith, it was a dream finally coming true.
Seated in a wheelchair among children her own age and surrounded by teachers, classmates and family members, Edeva was experiencing something she had spoken about countless times – she wanted to go to school.
It was a simple wish, one many parents might take for granted. Yet for a child battling an aggressive form of brain cancer, it was a dream that had almost slipped out of reach.
Standing quietly at the side of the classroom, her mother, Eleanor Von Macbuth, was filled with both a sense of happiness and sadness as she watched Edeva smiled, interacted with other children and embraced the experience she had longed for.
For a few precious hours, the scans, hospital admissions, treatment schedules and devastating prognosis faded into the background.
“That day, she was just a little girl experiencing something that is part and parcel of a childhood. She also got to experience what it is like to celebrate birthday in school,” she said.
It would become one of the family’s most treasured memories and one of the final gifts Eleanor was able to give her daughter before cancer claimed her life.
A child remembered for who she was, not what she suffered
Before cancer entered their lives, Edeva was simply Edeva — the youngest child in a loving family, a bright little girl whose laughter seemed to fill every corner of the home.
She had a way of bringing life wherever she went. Whether she was playing with her Barbie dolls, pretending to cook meals in her toy kitchen, or splashing happily in the swimming pool, Edeva embraced the world with a curiosity that made even ordinary moments feel special.
Her favourite foods were French fries, spaghetti and pizza — simple childhood favourites she would excitedly ask for with a smile.
At home, Edeva was talkative and expressive, always eager to share a story, ask a question or tell her mother about the smallest details of her day. Around strangers, however, she would quietly move closer to Eleanor, instinctively seeking comfort in the safest place she knew — her mother’s arms.
She shared a close bond with all her siblings, but her connection with Eleanor was something special.
Wherever Eleanor went, Edeva followed. If she could not see her mother, she would call out for her: ‘Mommy, Mommy, Mommy.’ The words echoed through their home so often that Eleanor would sometimes laugh and ask why her daughter needed her every five minutes.
Today, those constant calls are among the memories she treasures most because the house that was once filled with Edeva’s voice has grown heartbreakingly quiet.
“She was always looking for me. Back then, I never imagined there would come a day when I would give anything just to hear her call me ‘Mommy’ one more time,” she said.
Even Edeva’s name carried a meaning that would later feel profoundly fitting. According to Eleanor, both “Edeva” and “Edith” mean “gift from God.” It was a name chosen long before anyone could imagine the journey that lay ahead.
Although another pregnancy had not been part of her plans, Eleanor welcomed her youngest daughter as a blessing from the very beginning.
“She was my surprise baby, but from the moment I held her, I knew she was a gift. And for five beautiful years, she was,” she said.
When a mother knows something is wrong
The first signs appeared in 2024, when Edeva was four years old and began complaining of frequent headaches.
At first, Eleanor dismissed them as the kind of aches many children experience after a long day of playing or when they were feeling under the weather.
As the days passed, the headaches did not go away. Instead, new changes began to appear. The lively little girl who once filled the house with endless chatter became quieter, she was less energetic, less playful and often seemed tired.
Then came the moment Eleanor would never forget. One day, she noticed Edeva’s eyes suddenly turning inward and for a brief moment, they appeared crossed.
At first, Eleanor thought she might have imagined it but it happened again and again.
“I noticed her eyes suddenly becoming crossed, it wasn’t like that before. That was when I became really worried because my little girl no longer seemed like herself,” she said.
Concerned, Eleanor brought her daughter to several clinics. Each visit ended with reassurance that it was probably nothing serious. Doctors prescribed medication and advised the family to monitor her condition.
Yet despite the reassurances, Eleanor could not shake the feeling that something was wrong.
“As a mother, you know when something is different. Everyone was telling me not to worry, but deep inside, I felt something wasn’t right,” she said.
As the symptoms continued, Eleanor’s mother urged her not to wait any longer.
“My mum told me, ‘Don’t wait until it’s too late. Go and get her checked properly.’ Looking back, I’m grateful she pushed me to do it,” she said.
Determined to find answers, Eleanor took Edeva to a private clinic. This time, the doctor’s reaction was different. The concern was immediate and Edeva was referred for further assessment and a CT scan.
Even before the results arrived, Eleanor found herself confronting the possibility she feared most.
“I remember asking the doctor, ‘Could it be a brain tumour?’ I think a part of me already knew something serious was wrong,” she said.
The scan revealed a tumour in Edeva’s brain and an MRI later confirmed the devastating diagnosis. Eleanor still remembers staring at the image on the screen and the tumour was far larger than she had imagined.
“When I saw the scan, I was shocked because the tumour was so big. In that moment, it felt as if the world stopped, everything changed and the life we knew before that day was gone,” she said.
Surgery, treatment and a fight no child should face
Because the tumour was placing dangerous pressure on Edeva’s brain, doctors moved quickly to perform emergency surgery.
For Eleanor, the hardest part was not the diagnosis. It was watching her five-year-old daughter being wheeled away into the operating theatre.
Just before the doors closed, Edeva reached for her mother’s hand tightly, as if she knew something frightening was about to happen.
Looking into Eleanor’s eyes, she softly pleaded, “No, Mommy…”
The words shattered Eleanor’s heart because she was also terrified but she knew her daughter was looking to her for strength. So, she swallowed her fear and smiled.
Before the surgery, Eleanor gently placed holy water on Edeva’s forehead and prayed over her. Then she leaned close and whispered words she hoped her daughter would carry with her into the operating theatre.
“I told her: ‘You are a strong girl, just like Mommy. You’re going to be okay. God is with you. Mommy will see you later.’
“Those were the last words I said before they took her in,” she recalled.
To prepare for surgery, doctors shaved Edeva’s beautiful hair. It was another painful reminder of how suddenly childhood had been replaced by hospital beds, machines and uncertainty.
The first operation lasted through the night and into the early hours of the morning. Surgeons managed to remove approximately 70 per cent of the tumour. However, complications later required a second major operation.
During the second procedure, surgeons successfully removed around 97 per cent of the tumour. A small portion remained because it was attached to the brain stem, making complete removal too dangerous.
When the surgeries were over, Edeva was transferred to the Intensive Care Unit (ICU).
For days, Eleanor sat beside her daughter’s bed, watching monitors beep and machines breathe life into the little girl she loved.
“Edeva remained unconscious and every minute felt like an eternity, every small movement brought hope and every delay brought fear,” she said.
When doctors finally told Eleanor her daughter was stable enough to be transferred to Paediatric Oncology Ward 2A, she believed the worst might be behind them but she was wrong.
However, when Edeva finally opened her eyes, she was no longer the same little girl who had walked into the hospital and the change was devastating.
“It was like having a baby again. The child who once ran, laughed and talked endlessly could no longer sit up on her own.
“She could not walk or feed herself. She struggled to speak and even swallowing had become difficult,” she said.
For nearly three months, Edeva survived on liquid nutrition delivered through a feeding tube.
Eleanor said simple things most children do without thinking suddenly became challenges she had to relearn from the beginning.
“Watching your child learn to do things she already knew how to do before was one of the hardest things I’ve ever experienced,” she said.
Yet despite everything, Edeva never stopped fighting. Over the months that followed, she endured treatment that many adults would struggle to face.
“She underwent 33 sessions of radiotherapy, each requiring sedation because she was too young to remain perfectly still during the procedure. She later endured eight sessions of chemotherapy,” she said.
In total, Edeva underwent two major brain surgeries to remove the tumour and three additional procedures, including the insertion of a VP shunt to relieve pressure on her brain and the insertion and eventual removal of a chemotherapy port.
Eleanor said the treatment took a heavy toll as Edeva lost her appetite, her body grew weaker and some days she barely had the energy to smile.
The return of cancer and the beginning of goodbye
After nearly a year of surgeries, hospital admissions, radiotherapy, chemotherapy and rehabilitation, the family finally allowed themselves to hope.
The hardest part seemed to be over, the scans looked encouraging and Edeva was slowly recovering.
For the first time in months, Eleanor dared to imagine a future beyond hospital walls but that hope would not last.
About two months after Edeva completed her final cycle of chemotherapy, Eleanor began noticing changes that felt painfully familiar.
The little girl who had fought so hard through treatment became quieter, she lost her appetite, she seemed weaker and fevers began appearing without explanation.
And once again, a mother’s instincts told her something was wrong.
“I knew that feeling, it was the same feeling I had before her diagnosis. Deep down, I was terrified,” she said.
Further scans revealed the devastating truth that the cancer had returned and this time, it was no longer confined to one area as it had spread extensively throughout Edeva’s brain.
Eleanor said the family sat in silence as doctors explained the results, the battle they had fought so hard was no longer one that medicine could win.
“The doctors told me there was nothing more they could do to cure her. If we chose another surgery, there was a chance I might never see her wake up again.
“Even if everything went well, the time it could give us would be very short,” she said.
As a mother, Eleanor faced an impossible choice: fight on with more painful procedures or spend whatever time remained simply loving her daughter. In the end, her decision came from a place of love.
She said she knew she could not bear to put Edeva through more pain for a chance that offered so little.
“I didn’t want to hurt her anymore. She had already fought enough and given everything she had,” she said.
So instead of choosing more treatment, Eleanor chose time to hold her daughter, to hear her voice, to create memories and to love her without hospital machines, operating theatres and endless procedures standing between them.
“People called her brave, but brave doesn’t even begin to describe who she was. She was the strongest person I have ever known.
“She never complained or gave up. She fought every surgery, every treatment and every painful day with a courage I still cannot understand,” she said.
To be continued… In the next segment, Eleanor reflects on Edeva’s final weeks, the memories that continue to sustain her family and how she is learning to carry the weight of loss while honouring the little girl she will forever call her gift from God.
