“I have started this diary to record as accurately as possible not only what I have seen at Rachel House but the way it has struck me emotionally. I first got involved with Rachel House because, after working in the corporate world for seven months, I found that I had developed a desperate need to find and do something more than purely continuing to work in a capitalist capacity without even considering what was going on in the world outside of glass walled offices. It was my dad that put me in touch with one of his old school friends, Lynna Chandra, a lady who founded a pediatric palliative care hospice in Jakarta, and suggested that I contact her asking if I could help out over the summer. It is thanks to Lynna that I have been able to see and experience the following events and I hope that I will be able to give you an insight into some of the amazing work that she and her team perform.”
Life, Interrupted: Facing Cancer in Your 20sBy SULEIKA JAOUAD
Emma Dodge HansonSuleika Jaouad
Suleika Jaouad writes about her experiences as a young adult with cancer.
I was so excited for what lay ahead, I nearly forgot to wave goodbye to my parents. Armed with a college diploma, my first job offer, a one-way ticket to Paris and a new pair of heels, I was ready to take on anything. Little did I know, I would be back in New York seven short months later. But my parents would not be taking pictures at the airport or chatting about my future plans. I would be in a wheelchair, too weak to walk.
In Paris, the doctors had struggled to make sense of my symptoms — anemia, fatigue and persistent infections. They ran test after test — I was even hospitalized for a week — but the results were inconclusive. I was just 22, but the doctors released me with a diagnosis of “burnout syndrome” and orders to rest for a month.
Lala, my daughter aged 6 and half, was diagnosed with advanced stage Neuroblastoma on January 12, 2009. At the time, we were still living in Canberra where I was pursuing further studies on a scholarship. When Lala had a relapse in April 2010, we (Lala, Chandra and I) decided to return home to Jakarta for family support. Through the assistance of some of our close friends in Canberra and the doctor who looked after Lala at the Sydney Children’s Hospital, we got to know about Yayasan Rumah Rachel (“Rachel House” or “YRR”) and the palliative care services it provides to children like Lala. In mid June 2010, I met with the pediatric oncologist Dr. Edi Tehuteru at Dharmais Cancer Hospital (“Dharmais”), who introduced me to one of YRR’s nurses, Alisda Sihotang.
It takes Susi two and a half hours to reach Rachel House’s satellite in North Jakarta. A long, tiring journey by motorbike through the heavily congested streets of Jakarta, but it is essential. Her motorbike provides a lifeline to her patients. It’s the only way she can pass through the extremely narrow streets
of the slums of North Jakarta. This is where a large percentage of Jakarta’s poor live, in haphazard, crowded housing. Most of her patients are young children with HIV due to the large number of drug addicts and high level of prostitution within the area. For Susi’s own safety it’s important that she blends into her surroundings, because she puts herself at risk each time she enters the slums.
|Age:||14 years old|
|Patient admission date:||20th July 2009|
|Patient passed away on:||31st December 2010|
“Sister Luki, I am calling to say I have missed you and all the nurses at the hospital…” This was a call that came in April 2010 that reconnected Zaidin to help.
Zaidin is 14. He has been fighting cancer for over 2 years. In the middle of his battle, his mother died from breast cancer leaving him and his younger sister with his father as the main caregiver.
By the time of the phone call, it had been almost a year since his mother had passed away, and more than a year since he received any treatment or had any contact with Luki, the head nurse of the pediatric ward at the National Cancer Centre who had taken wonderful care of him.
It was through that fateful phone call that Luki found out that Zaidin’s mother had passed away, and it was also not long after that call that Zaidin was referred to Rachel House.
|Age:||14 years old|
|Patient admission date:||May 2010|
|Patient passed away on:||November 2010|
“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.
|Age:||8 years old|
|Patient admission date:||21st November 2008|
|Patient passed away on:||20th July 2009|
Baz was 7 years old when he was first brought to our attention in February 2008. He had been sent home by his oncologist with poor prognosis of no more than a few months to live. He had neuroblastoma.
But as soon as Baz arrived home, he insisted on going back to school, refusing any visits by the oncology team and proceeded to live life as a 7-year old would.
Unfortunately in September 2008, as his condition began to deteriorate, he had to stop going to school.