I’ve wanted to say a humble and heartfelt thanks to you all for so long …watching Mary’s Cancer Kiddies flourish and grow far beyond the seat-of-the pants operation that I began all those years ago. I could never have envisaged that MCK would touch the lives of so many people …and all through the efforts, incredible dedication and selflessness of those who work tirelessly for MCK – the driving force being the wonderful and irrepressible Julie van Laarhoven and Tessa Piper – and those individuals, organisations and companies who ensure that every child with cancer has the chance to live.
Take, for example, the extraordinary determination of Scott Thompson who, in October 2010, undertook a 250 km footrace across the Sahara Desert, raising US$30,000 for MCK. Scott is among many who have gone to extraordinary lengths to help children with cancer.
A lot of you probably don’t know me or how MCK actually began.
During almost 20 years as a reporter in Southeast Asia I witnessed and documented vicious cycles of poverty and conflict and the way it tore apart the lives of families.
In Vietnam, I once sat with a seven-year-old boy whose jaws were so plied with shrapnel from a landmine that he could no longer eat and was slowly starving to death. His most prized possession, his push bike, leaned against the wall outside as if he’d just jumped off minutes ago. It could have been a bike anywhere in the city suburbs of the developed world.
I witnessed a small boy with spina bifida who was tied to a bed in a dark shed because his elderly grandmother couldn’t care for him while his parents toiled all day on a meager patch of clay that yielded barely enough food to eat.
Also in Vietnam, there was the young mother who had two such badly deformed babies in the aftermath of a war she never knew. Her husband had killed himself because he couldn’t cope with the sight of his children, and the remainder of the village treated the family as freaks.
But what left such an indelible impression on me was the resilience of the human spirit over adversity and in often the most appalling conditions.
A teenager I met in probably the poorest province in Vietnam had been born with no arms or legs but taught himself to walk on his stumps and rode a bike through peak-hour traffic in Ho Chi Minh City. He even played soccer. Through sheer determination he became the second disabled student ever to attend a Vietnamese university. His sister, similarly deformed, was the first.
In Indonesia my husband and I were lucky enough to adopt two Indonesian children, both of who were not abandoned because they were not wanted but because of poverty.
Patrick and Novi Isabelle, now ten years old, were, and are, such incredible gifts. And they prompted me to want not just to make a difference but to give something back. I began to look for the opportunity.
To start with, I worked with cleft palate children and adolescents, raising awareness and money for surgery. Our daughter was born with a cleft palate and was most likely relinquished by her birth mother because she couldn’t afford the surgery. In 2000, it would probably only have cost the equivalent of $200 AUD.
Making a difference isn’t easy. It was a steep learning curve and I made mistakes. I intervened in the case of conjoined twins and persuaded the parents that their daughters would have a better chance of survival if operated on overseas. I argued with the hospital administrators over having the children operated on in another country where there might be better medical facilities and expertise, and I set about trying to achieve this. No takers. I was advised by several overseas surgeons that , even with the best medical care, one or both of the twins would almost certainly die if there was any attempt to separate them.
The parents withdrew their daughters from the hospital in the hope of them being operated on overseas. But I had reached crisis point. As a mother myself I felt that it was better for the girls to live as conjoined twins than to lose one or both of them on the operating table. But their father was adamant. His girls would have no quality of life at all if they remained conjoined, he told me, and he owed it to them to try.
I realize now that he was right and I should have supported him in that. Who knows better than a child’s parents? I had no right to try to persuade him otherwise.
The family eventually found a benefactor who paid for the girls to be operated on in Singapore. The operation was successful.
During this time, in 2004, I met Dr Endang Windiastuti, of the Hematology Oncology Subdivision of the Child Health Department at Rumah Sakit Mangunkarsumo. She led me into the non-infectious ward where row upon row of children with cancer – many in the advanced stages – languished on hospital beds. It was a pitiful situation. And the look of desperation and hopelessness on the faces of their parents has stayed with me.
Within a month at least four of them were dead. They were 6, 7, 9 and 2 years old.
Dr Endang is the sort of doctor who reaches into her own pocket to pay for a diagnostic test that could make the difference between the recovery and loss of a child. But pockets don’t run that deep.
I had really meant just to have a look that first day on the ward. But instead I came away promising to get the money for the diagnostic procedures for at least several children. How could I not? Trouble is, I had no idea where I’d get the money.
None of the families I saw had the money even for a diagnosis – an x-ray, a CT scan or blood tests. Couple that with the fact that the family had to purchase upfront any medicine and syringes etc needed to treat their child and it seemed a pretty hopeless situation.
Yes, there was government funding but you had to embark on a lengthy bureaucratic process, including writing to the hospital board, to see if you were eligible. We were talking about farmers, fruit sellers, bus drivers, the unemployed – some were illiterate, others didn’t have the correct documentation and others simply didn’t understand the process. Besides, there wasn’t time if they were to get urgent medical treatment for their children.
You could always pay upfront and then get reimbursed if you were eventually deemed eligible. But who had any money? By the time these families reached hospital, the cancer was usually in the critical stages, and the bread-earner had left or lost his or her job because he needed to bring the family to Jakarta to seek medical treatment. Most families had travelled from other parts of Indonesia. No such thing as sick leave or paid leave.
And this was the situation I worked with. At first I grappled for the money to pay for diagnostic procedures, it seemed way beyond my capacity to raise enough money to pay for surgery to remove the cancer or for radiation therapy or chemotherapy to treat the cancer.
From one day to another I didn’t know where the money would come from. I approached individuals, people from school, organizations, companies and eventually word spread. I would allocate a child to each sponsor …give them a picture of the child in whose life they were making a difference. And I found people really wanted to give. Whereas they were often reluctant to give money to a big charity where they might not see exactly how their money was spent, they now felt they could make a difference.
Eventually I was getting calls from people I didn’t know who wanted to sponsor a child. Some could contribute varying amounts each month, others a one-off donation. It all counted.
But it was still a race against time. One of the hardest things was asking a sponsor to pay for a child whose cancer was so advanced that there was nothing more that could be done. I needed to raise money to pay for the family to take the child home and to be able to buy sufficient painkillers for the child to die in peace. Donations also paid for the funeral. By the time a child died the family simply had no money left. Their other children had been pulled out of school or farmed out to relatives, household items had been sold or pawned, money borrowed from loan sharks at impossible rates of repayment, and jobs lost. Hopefully, donations might also stretch far enough to pay a small amount of money to get the family back on its feet after the debilitating death of their child. But that was often a luxury.
It was in this ward run by Dr Endang that I met Dr Edi Setiawan Tehuteru. He was about to set up Indonesia’s first children’s cancer ward at the Kanker Dharmais and he wanted me to do the same work I was doing at RS Mangunkusumo.
There was no way I could do it. How would I ever raise that sort of money? But Dr Edi was persistent and in the end I went “to take a look”. And of course I never turned back.
Dr Edi is a quiet achiever who believes that cancer must be treated with more than medicine. He has an unshakeable belief in the power of hope, and is universally loved by patients and their families. He is honest with them, explains exactly what needs to be done, and never gives up. And when he has exhausted all avenues of treatment, he informs the family so that they can decide whether to take their child home to die with dignity. Dr Edi has been known to go to the funerals of patients, visit families and take calls way into the night.
With Dr Edi, I embarked on the most meaningful thing I’ve ever done – the most rewarding and the most fulfilling. That’s hard for some people to understand. How could such a seemingly hopeless situation be fulfilling and rewarding?
I’ve always grappled to explain that. But recently, Lance Armstrong, the world champion cyclist who beat cancer, said it for me.
He says: “I saw more beauty and triumph and truth in a single day …they were human moments, not miraculous ones. I saw children with no eyelashes or eyebrows, their hair burned away by chemo, who fought with the hearts of Indurains.” (Spanish cyclist Miguel Indurain was the first to win the Tour de France five times in a row.)
But it was more than that. I learnt about hope. I often asked Dr Edi why he recommended chemotherapy and other treatments for children in such advanced stages of cancer when it might only bring more pain and misery. Wouldn’t it be kinder for these children to be allowed to slip away quietly? Wasn’t it fairer to tell the parents that the situation was hopeless and that the child should be allowed to go home and die? Weren’t they being given false hope?
But I knew nothing about hope. “There’s always hope,” Dr Edi would tell me. And then I saw it …children surviving against impossible odds, with overwhelming determination and resilience. How did they do that? I realized that the parents just wanted someone to try, to give it their best, to give their child a chance at life. And after that they could accept if nothing more could be done. And that was more often the case.
I saw that if the parents, particularly the mother, had a sense of hope then the child had a greater chance of surviving. And today that’s a scientific fact; people with cancer who have a sense of hope have a greater chance of survival.
In 2005 there was a seven-year-old boy who was going home to die. Dr Edi could do no more and he urged the boy’s parents to take him home to die with dignity, surrounded by his family.
This young boy, Bachtiar, had a brain tumour so advanced that it was pushing ridges into his skull. He could no longer talk or walk. As his father carried him out of the hospital, he waved me a victory sign. I think he knew he was dying and he accepted that.
It was early on that I met two boys who have given enormous meaning to my life. The first time I met seven-year-old Aldo he’d just had a tumour removed from his abdomen and he needed chemotherapy. But he then disappeared for a good part of the year because his family couldn’t afford the treatment. I had told his mother I would raise the money for his treatment but to no avail. There didn’t seem to be a record of where they lived and I wondered if I would see him again.
I did see Aldo again but his tumour had returned and was aggressive. Surprisingly, Aldo responded well to chemotherapy. I began to hope. I really hoped. I hoped to the point that I began to believe he’d come through this. In fact, I became so fond of Aldo that he came to embody everything I was working for. If he didn’t make it, I told myself, I didn’t see that I could go on doing this. It was almost a threat to a greater power.
Aldo did die. It was two days before his 8th birthday and his family had been planning a special party at which Dr Edi and I were to be special guests. On Aldo’s birthday, his family brought us his birthday cake …half for Dr Edi and half for me.
One day I had eventually found Aldo’s home. His family lived in what can only be described as a ramshackle hut of thin walls that seemed ready to fall around their ears. I can only imagine how it must have stood up to the monsoon rains.
Outside their home was a rubbish dump that overflowed into a canal. The stench was awful. But Aldo’s home was one of incredibly strong and warm people. One of hope.
A week before his death Aldo had been guest of honour at the inaugural Run for Life at Jakarta’s Ragunan Zoo, a fundraiser for the cancer children.
Aldo took a ride on the back of one of the participant’s bikes and an unnamed donor had paid for a new bike to be presented to him. He had a wonderful time.
I railed against his death and those of other children in an email to an American cancer surgeon who had always taken the time to offer comfort and explain cancer in children. He was another of those wonderful people that I never met but who offered tremendous support along the way.
I didn’t know where to go after Aldo’s death. Deep down I knew I wasn’t going to give up but it was a very low point.
And then suddenly out of nowhere there was the most remarkable, almost overwhelming, flow of donations, particularly for a bone cancer patient, Oki, whose treatment would cost more than double that of the other cancer children. It was as if Aldo’s death had precipitated something, and it was a turning point. For the first time I was getting enough money on a regular basis to see many of the children through treatment. Schools were getting involved, students visiting the children, and organizations wanting to donate money.
By then I had met seven-year-old Abiyyu. His mother had come to tell Dr Edi that although Abiyyu was responding well to treatment, he was withdrawing from treatment because the family simply couldn’t afford to go on. They had sold everything, even their furniture, to pay for his first couple of cycles of chemotherapy and she owed money to relatives and loan sharks. They simply had nothing left.
Today Abiyyu, who had advanced eye cancer and lost an eye, has completed his treatment and is in remission. He is the longest surviving tumour patient we sponsored. He occasionally sends me his artwork and I consider every day a gift.
There are so many other remarkable children that I could write about but I know that everyone involved in MCK has met more than a few of such children already. MCK’s regular newsletter is testament to this.
Thank you to everyone for making MCK what it is today …far beyond what I could ever have dreamed possible. Needless to say, I miss terribly being involved in MCK’s wonderful work.
The volunteers at MCK have worked so hard to attract donors and have raised an extraordinary amount of money to touch more and more lives. Child cancer patients now have better access to government funds, and this has enabled MCK to widen its own assistance in so many many ways to help child cancer patients and their families.
Just a final thing I want to add. The work that MCK is doing at RS Mangunkusumo’s neo natal ward is extraordinary and especially personal for me.
My 10-year-old son Patrick was a premature and critically ill baby born at the hospital in 2000 and abandoned by his parents because they couldn’t afford to pay the bill. I can only imagine their grief and heartache at leaving him. But I believe they had no choice. And I’m sure not a day passes when his mother doesn’t wonder whether he survived and where he is.
MCK is ensuring that this never happens again. It is raising money to save the lives of babies such as Patrick, to pay for their treatment and to ensure that families stay together.
Every child has the right to life and every mother has the right to take her child home.
Thank you MCK and all the wonderful people who make it what it is today. I’m incredibly proud to have made my humble contribution at the very beginning.
04 February 2011