PART FIVE (SEGMENT TWO) OF A SIX-PART SERIES
When treatment could no longer offer a cure, Eleanor Von Macbuth made a decision rooted not in surrender, but in love.
Rather than filling her daughter, Edeva Von Edith’s remaining days with more procedures and hospital visits, the family focused on creating memories — beach outings, birthdays, favourite foods and simple moments that allowed a little girl to simply be a child again.
This segment follows Edeva’s final chapter, a story not defined by cancer, but by a mother’s determination to make every remaining day count.
A family’s final memories
After Edeva was discharged into palliative care, the Sarawak Children’s Cancer Society (SCCS) continued to walk alongside the family during their most difficult days.
The organisation provided practical support, including medical supplies, oxygen equipment, pillows, blankets and an inflatable air mattress to keep Edeva as comfortable as possible at home.
Staff members regularly checked on the family through phone calls, messages and home visits, ensuring they never felt alone in their journey.
The family brought Edeva to places she loved, they went to the beach and listened to the sound of the waves, visited shopping malls and sometimes they simply drove around the city.
Eleanor said photographs were taken everywhere they went, not because they knew they were creating memories, but because they wanted to celebrate every moment they still had together.
“Every smile became precious, every laugh became priceless and every day became a gift,” she said.
Despite doctors initially believing Edeva had only days or weeks left, she remained with her family for another month and a week.
One memory that still makes Eleanor smile through her tears is on Edeva grandfather’s birthday.
Edeva looked at him and made a special request of wanting him to shave his head and become bald just like her.
“Without hesitation, her grandfather agreed. For a moment, laughter replaced fear and Edeva beamed with happiness.
“It was a small act of love, but we will never forget,” she said.
Five days before Edeva left this world, the family brought her to see the Christmas lights at The Spring Shopping Mall.
Eleanor said Edeva was extremely weak by then where she could no longer speak and spent most of her time resting quietly.
Yet as the colourful lights illuminated the giant Christmas tree, Eleanor could see something in her daughter’s eyes.
“She couldn’t tell me how she felt anymore, but I knew she was happy. I could see the excitement in her eyes,” she said.
As the family stood together beneath the glowing Christmas tree, they took photographs and quietly cherished what they knew were precious moments.
Looking back, Eleanor believes it was one of the last times Edeva truly enjoyed an outing with her family.
At the same time, Eleanor said faith had been a source of strength throughout Edeva’s journey, and she wanted her daughter to experience one final Mass.
Despite her fragile condition, the family brought Edeva to church. Wrapped lovingly in her family’s care, she attended what would become her final Mass.
“I wanted her to be close to God. I wanted her to know she was surrounded by love, prayers and faith,” she said.
Among all the memories from those final weeks, one stands out above the rest.
One day, Eleanor and Edeva were alone at home then unexpectedly, she spoke: “Mommy, I want an egg.”
Eleanor’s heart lifted instantly and she rushed to the kitchen and prepared it as quickly as she could.
“I was so happy to hear her ask for something,” she recalled.
When the egg was ready, Edeva could only manage a few small bites.
Neither of them knew it then but those would be the last words Edeva would ever speak.
As the days passed, Edeva’s condition continued to deteriorate but even then Eleanor never stopped hopping.
“As a mother, you always believe there will be another miracle. A part of you never stops hoping,” she said.
Then came the morning she will carry with her forever.
When Eleanor woke up and looked at her daughter, she immediately sensed something was different.
Edeva’s lips had turned blue, her tiny fingers felt cold and her breathing had become shallow.
“In my heart, I knew,” she said.
Family members quietly gathered around her bedside and as Eleanor cradled her daughter in her arms, she found herself saying the words no parent should ever have to say.
Through tears, she gently stroked Edeva’s face and whispered:
“Go in peace and serve our Lord, my baby.”
“Mommy is not going to make you stay.”
“You are free to go and be happy up there.”
“Always remember that Mommy loves you.”
“Don’t worry about Mommy, okay?”
“Rest well, my baby princess.”
In that moment, Eleanor gave her daughter one final gift: permission to rest, to stop fighting and to be free from the pain she had carried for so long.
Surrounded by the people who loved her most, Edeva took her final breath.
For Eleanor, there is comfort in knowing that some of Edeva’s final memories were not of hospitals, treatments or pain.
Today, those memories remain among the family’s greatest treasures because even as time was running out, Edeva was still living, smiling, loved and creating moments that her family will carry in their hearts forever.
Learning to live with grief
The days and months that followed Edeva’s passing were among the darkest periods of Eleanor’s life.
She said there were nights when sleep seemed impossible, mornings when simply getting out of bed felt like a battle and moments when the weight of grief felt so heavy that breathing itself seemed difficult.
“There were days when I wanted to stay in bed and cry, but I still had two children who needed their mother. They were grieving too, and I knew I had to keep going for them,” she said.
Finding the strength to continue was not easy, but Eleanor said there came a moment when she asked herself a simple but life-changing question.
“Do I want to be healthy, or do I want to let grief consume me? I knew I had to be strong, even though being strong was the hardest thing I had ever done,” she said.
That was when she made a conscious decision that she would fight for herself, just as Edeva had fought for her life.
Not because the pain had disappeared, but because she knew her daughter would want her to keep living.
She began taking small steps whereby she started going for brisk walks then she registered for a gym membership and she eventually discovered hiking and camping.
What began as an attempt to escape the pain slowly became part of her healing journey.
“When I hike, I see so many similarities to life. The climb is difficult, sometimes the trail is steep and exhausting.
“There are moments when you want to give up but when you finally reach the top, there is a sense of pride and satisfaction because you know what it took to get there,” she said.
For Eleanor, every mountain became a reminder that struggles can be survived one step at a time.
She said spending time outdoors helped clear her mind, gave her space to think, cry, pray and to simply exist with her grief.
“Life after losing Edeva is like climbing a mountain. Some days are harder than others but I keep moving forward,” she said.
Eleanor is honest about one thing: healing does not mean she is okay.
“People see me smiling and think I’m okay. The truth is, I’m not but only God knows what is in my heart,” she said.
Even today, there are moments when the grief arrives without warning: a song, photograph, memory or familiar place and suddenly the pain feels as fresh as it did the day she lost her daughter.
“There are still times when it hurts so much that I cry when I’m alone. I don’t think a mother ever stops missing her child,” she said.
A mother’s message
While Eleanor finds it difficult to speak about Edeva without tears, she is choosing to share her daughter’s story.
She knows there are parents sitting beside hospital beds right now, waiting for scan results, praying for miracles and wondering how they will survive another day.
Reflecting on her journey, she said one of the most important lessons she learned was that no family should face childhood cancer alone.
“There were days when I felt completely exhausted physically, mentally and emotionally. There were moments when I thought I had to be strong all the time because I was the mother.
“Looking back, I realised it is okay to ask for help, to cry and to admit that you are struggling. What we are going through is something no parent is ever prepared for,” she said.
Throughout Edeva’s illness, support came from many directions — healthcare workers, family members, friends, volunteers and organisations such as SCCS.
While none of that support could change the diagnosis, it reminded the family that they were not fighting alone.
For parents who are currently caring for a child with cancer, Eleanor’s advice is simple: not about treatments or medical decisions but about love.
“Take as many photographs and videos as you can. Go on little outings whenever your child feels strong enough, hold their hand, listen to them and treasure the ordinary moments.
“One day, those ordinary moments will become your most precious memories. Sometimes we become so focused on treatments, medications, appointments and scan results that we forget to appreciate the little moments happening in between,” she said.
If she could see Edeva one more time, Eleanor knows exactly what she would say.
“I would tell her how much Mommy loves her, how much I miss her every single day and how proud I am of her,” she said.
Eleanor said cancer may have taken Edeva’s life, but it will never take away the impact she left on those who loved her.
“People see me smiling and think I’m okay. The truth is, I still miss her every single day.
“I always look up because I know she’s up there. I know she’s watching over me and I know she’s no longer suffering,” she said.
As painful as it is to let her go, Eleanor takes comfort in the thought that the little girl who endured surgeries, chemotherapy, radiotherapy, needles, pain and endless hospital stays is finally at peace.
Although Edeva’s life lasted just five short years, the love she left behind is immeasurable.
“For me, Edeva will always be what she was from the very beginning—a gift from God and a gift I will carry in my heart for the rest of my life,” she said.
Forever five
Today, Eleanor still finds herself reaching for her phone to look at Edeva’s photographs.
Sometimes she watches old videos just to hear her daughter’s voice again. Sometimes she sits quietly and remembers the little girl who once filled her home with laughter, questions and endless calls of “Mommy, Mommy, Mommy.”
The bedroom may be quieter now and the toys may no longer be scattered across the floor but the love Edeva left behind remains everywhere. In every family photography, memory shared, prayer whispered and in every step Eleanor takes as she learns to live without her.
“People say time heals, but I don’t think a mother ever fully heals from losing a child.
“You simply learn how to carry the pain,” she said.
There are still days when she looks up at the sky and wonders what Edeva would look like now, what her voice would sound like, what dreams she would have chased and what kind of young woman she would have become.
Those are questions she will never have answers to.
However, one thing she knows for certain is that five years, she had the privilege of being Edeva’s mother and that is a gift she will carry with her for the rest of her life.
“I miss her every day and I always will. But if love alone could have saved her, she would have lived forever,” she said.
