By Moza Adilen | Communications and Fundraising Officer
The unwavering familial love and hope are the lighthouse in the violent storms of life in Alby’s journey with Acute Lymphoblastic Leukemia (ALL). In this story, we witness the family’s determination and fortitude in the face of the tragic realities that confronted them. The family's journey illuminates the multifaceted struggles—physical, emotional, financial, and social—that families endure within the realm of childhood cancer. We hope this story raises global awareness of the challenges inherent in childhood cancer, and ignites empathy and compassion.
At Rachel House, we recognize the pivotal role of families in the wellbeing of children living with serious illnesses. We support families like Alby's, equip them with essential skills and knowledge to navigate the labyrinth of childhood cancer. We invite you to join us in kindred solidarity, to celebrate the power of familial love and hope. As our donor and supporter, you become an integral part of crafting narratives that are imbued with courage, empathy, and unyielding love for families confronting the arduous journey of childhood cancer. Together, let us inscribe stories of unwavering strength and enduring compassion.
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"How can we care for our dying child at home?"
Not every child experiences an idyllic childhood. Alby had been grappling with health issues since he was two years old. It all began with a lump on his neck 4 years ago. The doctors suggested that the lumps might be mumps and would resolve on their own. However, the lumps continued to grow, as well as other symptoms that began to manifest.
In beginning of July 2023, Alby's health started to exhibit dramatic and concerning changes. The lumps started to affect his ability to speak, his appetite, and tragically, his consciousness. Following extensive medical investigations and biopsies, Alby was given a diagnosis of Acute Lymphoblastic Leukemia (ALL) in early September of 2023. Notably, his leukocyte count had skyrocketed to 800,000 (far above the normal range of just 10,000); this abnormally high leukocytes resulted in blood thickening and the rupture of blood vessels in his brainstem. Due to the brainstem hemorrhage, Alby has remained in a comatose state since late September of 2023.
This sparked a sense of guilt in Alby's parents, as they questioned if they had overlooked symptoms and could have done something to prevent this tragic outcome. However, despite grappling with those feelings of guilt and uncertainty, they remain steadfast in their commitment to Alby's comfort and happiness. Their main hope is for Alby to wake up and rediscover the pleasures of childhood surrounded by the love and warmth of his family.
Clinging to this hope, they decided to take Alby home. However, plagued with fears of the unknown, they asked Eka, Rachel House's nurse, "How can we care for Alby at home?"Eka assured the family that she will be by their side. So, with the support of Eka and Rachel House's team of nurses and community health workers, the family began their journey of caring for Alby at home.
Alby’s condition sadly continued to deteriorate rapidly. He started to experience seizures that worried his parents greatly. “Will he die while having seizures? Is that even possible?” asked Alby’s father.
Nurse Eka gently and carefully explained the possibilities of someone dying from seizures, particularly if it is a grand seizure; she also explored the other scenarios and symptoms that may be fatal for someone in Alby’s condition. During these challenging times, Alby's parents came to the realization and accepted that as God had entrusted them to take care of Alby in this mortal world, Alby would eventually return home to Him. This acceptance brought them peace, and eventually, the acceptance that the end might be close for Alby.
A Rose as a symbol of my undying love and enduring hope
Alby’s beloved sister, Aara, was clutching on tightly to miracles. “When will he wake up, Mom? Is it going to be soon? I miss him so much. I miss playing with him.” The 9-year old Aara peppered her parents relentlessly with these questions. She refused to leave his side for long, and often laid in bed next to him to watch videos on their parents’ phone, as if they were watching them together, just as they had done in the past.
One day, when Aara came home from school - without saying a word, she laid herself down next to her brother and placed a shiny object in the shape of a rose in Alby’s hand.
A rose as a symbol of her undying love and her enduring hope that one day, Alby will wake up and they will continue their sibling adventures together.
When the end finally arrives - "how do we move on with life?"
Yet, fate's capricious hand weaves its own intricate design. On November 28th 2023, Nurse Eka received a text from Alby’s mother, with news that Alby was showing signs of further deterioration. Facing the difficult situation that befell their beloved son, both parents have accepted the possibility that their son might pass away soon. Eka tirelessly guided Alby’s parents during this final process; they both expressed their gratitude for Eka’s faithful presence.
After a long battle for his life and a full three months of being in coma, Alby took his last breath on November 30th.
“Alby is no longer sick; he is now healed. Praise God. I am just grateful that he died in my arms; I got to hold him in his last hour. It was a beautiful and sad moment to experience as a mother, but in all honesty, I would not have asked for a different way for him to die. All our effort and love in taking care of him while he was sick led to this moment. I will cherish this forever," said Alby’s mother.
In addition to providing medical care and support for Alby (and his family), Rachel House’s team also provided grief and bereavement support for Alby’s family. The grieving family is doing their very best to stay strong together and continue their daily activities. While it has only been a few short months since they said their farewell to their son, the family is learning to live their lives without him. Alby's mother has started baking again and selling her baked goods, while his father has started his own company. The family believes in their hearts that Alby would have wanted them to continue living their lives.
By Moza Adilen | Communications and Fundraising Officer
By Nurul Aini | Volunteer Storyteller
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