(by Yolanda Tasya Amalia – Communications Assistant)
In the countless hallways of the homes visited by Rachel House’s nurses, where laughter intertwines with tears and resilience defines the atmosphere, a profound lifeline threads through the lives of children under palliative care.
In the tender embrace of Rachel House, this lifeline is symbolized by the provision of essential nutrition formula milk: a source of nourishment and hope for both the children with serious illnesses and their families. It acts as a lifeline for physical well-being, ensuring that these children receive the sustenance they need to thrive, despite their health conditions.
Sadly, not all children battling serious illnesses come from families who are able to afford these essential nutritional needs. This is where Rachel House steps in to extend a helping hand.
The Stories of Dimas and Gani
Dimas is a 12-year-old boy diagnosed with stage 4 nasopharyngeal cancer. When he was first admitted to Rachel House’s service in early 2023, the cancer had metastasised to his brain leaving him with sight only in his left eye. However, as of October 2023, Dimas is miraculously declared cancer-free, having completed a series of chemotherapy and radiation treatment.
Rachel House’s nurse, Dadan, has been the figure who accompanies Dimas on this journey. He also cares for another patient by the name of Gani.
Gani was just a little shy of 4 years old when he was referred to Rachel House in 2022. He was diagnosed with grade 3 ependymoma, a type of brain cancer. Gani has undergone three tumor removal surgeries, several cycles of chemotherapy and radiation treatments. Sadly, the cancer has not responded to these treatments. The probability of Gani receiving a fourth tumor resection surgery is slim as the tumor continues to grow rapidly.
Gani’s condition forced him into complete bed rest, where he could no longer engage in typical activities for a child his age. His world is restricted to the faithful company of his loving mother, and they share a life marked by hardship and loss, following the tragic death of his father a few years earlier from an accident.
For both of these children, Nurse Dadan takes great care in managing the symptoms and alleviating their suffering, either as part of the diagnosis or as side effects from the treatment, such as pain, mouth sores, or digestive issues, to help them live as comfortably as possible. Each visit, Dadan also checks and records details such as weight, height, body length, calorie intake, and coordinates with the nutrition team to determine the menu and nutrition sufficient for the patients.
The Importance of Nutritional Formula Milk
For Dimas and Gani, essential formula milk is one of the essential parts of their care. Patients undergoing chemotherapy and radiation treatments often experience severe side effects that require comprehensive nutrition in an easily digestible form to meet their calorie, protein, weight, and body resistance needs.
This is especially vital for Gani and other patients with reduced consciousness, who can no longer consume solid food and must rely on formula milk or other liquid meals as their primary source of sustenance.
After receiving donations of formula milk, both Dimas and Gani have experienced significant improvements in their nutritional status. Gani weighed 12 kg when he was first referred to Rachel House. In the following 5 months, his weight has gradually increased to 18 kg. Similarly, Dimas’s weight has improved from around 22 kg to 30 kg in 6 months.
Amidst this journey of rigorous treatments, their improved nutritional condition have brought joyful relief, providing a well-needed respite from frequent hospital visits to address side effects of chemotherapy.
While essential nutrition formula milk serves as a cornerstone of physical well-being, its impact extends far beyond that. Every cup of this precious milk holds the promise of comfort, care, and support. A constant presence of hope that is much needed in a world filled with uncertainty, offering these children strength and stability while they navigate the complexities of serious illnesses.
Undoubtedly, Dimas and Gani have become more energetic and less frail as their nutritional and dietary needs have been met.
“Dimas used to rarely smile because of the pain in his throat from the cancer,” Dimas’ father once said. “But look at him now; he smiles more frequently thanks to the care and attention of Nurse Dadan and Rachel House.”
Patients and their families are deeply grateful for the many individuals who care about them; aside from Nurse Dadan, there are community health workers from Rache Housel who assist them with health administrative tasks (like insurances etc) and accompany them to the hospital to meet their oncologists, and others on the logistics team of Rachel House to make sure medical equipment and medicines are delivered when needed.
“I still remember when the suggestion for a consultation with palliative care was mentioned for the first time; it was quite shocking to the patient’s family because it seemed like the end, and their child would not live much longer in this world,” Nurse Dadan shared. However, in reality, Dimas and Gani have survived almost a year, thanks to Rachel House’s support.
On this special journey of service, Nurse Dadan has had the privilege of witnessing the joy that comes from seeing the return of Dimas’ smile, and the closeness of a mother and son as Gani’s mother devotes herself totally to the care of her son. As for these children and their loved ones, every day is a precious gift, and nutrition plays a vital role in ensuring this.
The provision of essential nutrition formula milk is not just a gesture of care for Rachel House’s patients; it’s a precious lifeline of support for parents. It relieves them of the immense burden of worrying about their child’s nutritional needs, allowing them to focus on creating beautiful memories together. Nutrition formula milk gives parents the reassurance they need, knowing that their child’s quality of life is at the forefront of everyone’s minds.
When all is said and done, in the countless homes that Rachel House’s nurses visit, essential nutrition formula milk doesn’t just fill their cups; it fills their hearts with hope with a clear message: “We are here for you. We are dedicated to making each day as comfortable and fulfilling as possible.”
*Name changed for privacy.
