By Rebecca Florensia | Volunteer
When we hear the term “palliative care”, most of us would associate it with end-of-life medical care. This is essentially true, but it’s also much more than that, especially for the children at Rachel House. Our nurses and community health workers experience this firsthand and see how palliative care gives a new chance for hope when all seems lost.
Erwin, a shy sixteen-year-old boy, was first diagnosed with ALL Leukemia when he was just 2.5 years old. Chemotherapy was his constant companion until he was 10, when the doctor declared him clear of cancer and he could go back to school. Life had started to look up, but sadly for only a few short years.
In September 2020, the cancer cells that had robbed Eriwn of a big part of his childhood returned with a vengeance. His mother had to bring him back for treatment, even during the heightened risk environment of the pandemic. While the initial series of chemotherapy left him with violent reactions of nausea and vomiting, the new oral chemotherapy treatment has only a side effect of a voracious appetite. This, however, presented an added challenge for a mother who is already struggling to make ends meet.
Erwin has been under his mother’s care since his parents went their separate ways. His father had since remarried and stopped providing financial assistance to Erwin and his mother. Juggling between work and Erwin’s radiation and chemotherapy treatment, all alone without support, has been his mother’s struggle for many years. Eventually, they had to move in with her family, even if this means having to share a crowded space with eight others.
The story of Erwin and his mother’s struggles finally reached one of Rachel House’s community health workers, ibu Eny, through her niece who attended the same school as Erwin. Ibu Eny quickly responded and visited Erwin to assess the family’s overall needs. While Erwin is progressing smoothly through his treatment, it was clear that his mother needs a shoulder to lean on. The journey has been long and arduous for her, battling alone with hardly anyone that she can talk to. The loneliness and financial worries are taking a toll. She talked about feeling desperately alone as her family does not ask much about Erwin. The weekly cost of transportation to the hospital of around Rp. 500,000 per week (at Rp. 140,000/- per return trip), has meant that she was having to choose between feeding herself or getting Erwin to the hospital for his treatment. They would sometimes borrow her father’s motorbike when it is available or use the public transport for a cost-saving option, but not a safer option for Erwin.
These worries of escalating costs of transportation have thankfully been put to rest now with Rachel House’s assistance, making available transportation for patients like Erwin to access treatment they need.
Accompanying Erwin for treatment has also meant that she has had to take leave from her work. With limited income, it means often going without food while waiting for Erwin at the hospital. This is a common occurrence for many of our patients, leading Rachel House to start the practice of leaving a sum of money with food providers at hospital canteens, so that parents of our registered patients do not have to go hungry while taking care of their children.
At Rachel House, we believe that our children’s wellbeing is totally connected to the caregivers’ presence; children need to lean on their parents as they traverse through pain and suffering brought about by their illness. This is why in our work, supporting parents and ensuring their wellbeing is one of our key priorities.
Ibu Eny once asked Erwin, “Do you miss school?”. He replied shyly that he misses his friends most. Before the pandemic, his teachers, friends and their families would visit Erwin in the hospital to cheer him on with the treatment. With the pandemic, this is no longer possible. Knowing how alone Erwin and his mother are, Ibu Eny visits and calls on them frequently to check on how they are doing, making sure they have all their essential needs. Ibu Eny has become a place for Erwin’s mother to confide in, particularly when the bumpy roads seem to go on forever.
A mother’s love for her children knows no boundaries. We constantly look in awe, as we do now at Erwin’s mother and her immense sacrifice for her son. For Erwin, his mother’s unwavering love is the only constant in his life, she is his guardian angel. For us at Rachel House, we will do all we can to support her, so that she can continue to be there for him. Adding life to whatever time he has on this journey we call life.
By Lie Marlina Eva | Volunteer
By Natasha | Communications & Events Officer
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