Patient history
“Mom, I know I am dying. What is the point of spending more money on chemotherapy when we know it will not make the cancer go away! Please save the money for a business you can start when I am no longer here.” These words, spoken with such wisdom from a 14 year-old, finally brought home the brutal reality of the battle that was lost, young hopes dashed.
Background
Sylvia was a beautiful teenage girl who loved to write and adored drawing. She had a younger brother who unfortunately died from typhoid fever at the tender age of 3.
Sylvia’s own tragedy began at the age of 9, not long after the death of her brother, when she began to feel sharp tingling pain on the sole of her right foot. Pain killers were prescribed to manage what was initially thought to be a “growing” pain. However, in late 2006 when a growth the size of her palm appeared on the sole of her foot, Sylvia was diagnosed with Rhabdomyosarcoma from a biopsy. A course of chemotherapy and radiation therapy followed that lasted 18 months.
Unfortunately, at the end of the long treatment, the tumour was found to have not responded to the treatment. The doctor recommended amputation to prevent metastases, but was initially refused by Sylvia and her family. However, in February 2010, when all alternatives appeared to have failed, Sylvia gave in and agreed to amputation in her last attempt to keep the cancer at bay.
Not long after the amputation, Sylvia began experiencing difficulty in breathing and sharp pains on her chest. A series of chemotherapy was recommended to try to contain the cancer that had by then metastasized to her lungs.
Three months after the amputation when another series of chemotherapy treatment failed to have any impact on the aggressive cancer, Sylvia was taken home and admitted to Rachel House as our home care patient.
At Rachel House
On our first visit, Sylvia was in a significant amount of discomfort. She had difficulty breathing and was in a considerable amount of pain. Rina (Rachel House’s nurse) immediately obtained approval for her pain medications to be increased, both in dosage and in frequency, to provide relief.
In the first weeks under our care, Rina visited Sylvia several times a week to make sure her physical symptoms and discomfort were managed. As time passed, trust developed and a beautiful friendship was formed between Rina and Sylvia.
The last days through a teenager’s eyes
While physical pain was brutally real and death imminent, the true suffering that plagued Sylvia’s last days were those that she took to her diary. As Rina availed herself to listen, Sylvia began to share some of her fears and angst.
- How could she face her neighbours in her baldness? Why did she have to lose her hair on top of everything else?
- How can she help her mother earn money before she dies? As the eldest child in the family (by now, Sylvia’s mother had given birth to a baby girl), Sylvia felt that it was her responsibility to help with the family finances; she often said,” Other kids at my age would be able to start working and help earn money. But all I can do is use the money for myself!” She would often wish that death would come quickly to relieve the burden on her family.
- For Idul Fitri (Muslim New Year), can God please strengthen her remaining leg to allow her to kneel and pray?
Some fears were easier to manage. For example, we managed to find a donor who contributed a wig that looked absolutely stunning on Sylvia, and in exactly the old hair style she had. She was ecstatic! For the others, Rina could only hope to sooth her angst by listening, and by being a friend.
Journaling was an effective way for Sylvia to release some of her anxieties. However, she was most concerned that the content of her diary would cause more sadness for her mother. So pages were often ripped from her diary and stored insideher pillowcase, and some were given to Rina for safekeeping. It was then that Rina realized that Sylvia loved drawing – there were beautiful illustrations drawn on the pages of her diary.
At the time, we happened to have a young volunteer from a local university majoring in Arts degree. Rina introduced Cindy to Sylvia, and the two quickly became drawing buddies. The drawing became a therapeutic activity right to the last few days of Sylvia’s life.
As the cancer progressed, breathing became more and more of a problem. While she was obviously frightened and panic often set in reducing her to tears, Sylvia refused to be sedated, opting at all times to be fully aware of her surroundings. It was beautiful to watch how Sylvia’s mom would accord her daughter the right to make the decision at all times, having made certain that Sylvia understood clearly the implications of each decision.
On the fateful day when death finally arrived, Sylvia requested for Rina to visit. They spent a few hours together. She asked for her father to return home early from his work (as a hawker in the markets). In the late evening, surrounded by her family she fell into a peaceful sleep from which she never woke.
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