Support OCF in their campaign to raise funds for childhood cancer research.
In December 2006, Melissa and Stephen Clarke were told their six year old son, Ben had cancer. Melissa describes the moment the oncology doctors came to tell them the news as reminiscent of the scene in the ‘Monsters Inc.’ movie when the ‘scarers’ enter the scare floor.
Ben occasionally complained of sore legs and Melissa and Stephen did their best to relieve the pain. Later he complained of pain in his tummy and so they took him for a check-up.
It was after tests that they discovered Ben had Neuroblastoma, stage 4, an aggressive and difficult to treat cancer that affects babies and children. There is no cure as such, but there are treatments and those treatments restore about 30 percent of children to health.
The treatment program is intense and painful. Family life and budget is consumed when a child is sick. The Clarkes entered this world on the day that Ben was diagnosed. Melissa says: “Even Ben could name all the drugs, the tests and knew what his side effects would be. Ben endured just about every side effect of chemotherapy that was written down plus a few that the medical teams were not expecting. We spent weeks and weeks at a time in hospital, either having chemotherapy or recovering from the side effects of it. Ben was very slow to recover, but maybe this was a good sign – if the chemo was knocking him around so much surely it was doing the same to the cancer.”
Treating a child with cancer is harrowing for the family and the professionals. Head of Oncology at The Children’s Hospital at Westmead, Dr Luce Dalla Pozza says: “ Children never give up”.
The doctors and nurses in the oncology units believe their job is to treat families, rather than individuals. They get to know them well and they share their experience.
Dr Michael Stevens, Consultant Oncologist at The Children’s Hospital at Westmead says: “The sad part is meeting parents of children who died 30 years ago and wondering how things might’ve turned out had they come along now.”
Ben underwent extensive treatment to attack the tumour in his body. Melissa and Stephen consulted him throughout the course of his illness about the action he wanted to take and each time he said he wanted to keep fighting, to try the next round of chemo or the next treatment offered.
In late 2007 the family received the heartbreaking news that the cancer was winning, that the time had come to leave hospital and have some fun. The family travelled to fun parks in Queensland and enjoyed a holiday.
Good friends, family, neighbours as well as strangers rallied together to renovate the family’s backyard so that Ben could have a pool party on his seventh birthday. He told his parents: “It was the best party ever”.
Melissa says: “ The day after his seventh birthday, he took a rapid turn for the worse. He underwent some radiation therapy for pain relief and required transfusions of blood products every two days. He had one last treatment with the radioactive iodine, so that we could have our final Christmas together.”
In the New Year, the Clarkes went to stay at Bear Cottage* in Manly. Ben and his younger brother Joshua loved it, and the family stayed on longer than the one week they had intended. Melissa says: “It was here that our beautiful, gorgeous son left us on Friday 25th January 2008 at 6.15pm.”
The Oncology Children’s Foundation (OCF) is an independent Australian charity that funds research into childhood cancers, particularly targeting those that are difficult to cure, like Neuroblastoma. OCF is determined to find cures.
Monday 15th, February is International Childhood Cancer Day. OCF’s flagship event- ‘Ring a bell for Ben’ is going national for the first time this year. Cathedral Bells will peal across the country to honour Ben and raise awareness about the importance of research. OCF’s mission is to give kids the opportunity to live their dreams. Melissa is an ambassador of OCF. In March, 2009 she and 20 friends walked the Great Ocean Walk in Victoria and raised $65,000 for OCF.
Melissa says: “Ben was so very brave and strong throughout his battle and it is ironic that his favourite games on his beloved xBox were all battle games… a metaphor for his own battles, which while so bravely fought were sadly unable to be won. I miss my Ben every day, his wicked sense of humour, his inquisitiveness, his companionship and his love.”
Ross Lewis, CEO of OCF says: “We want to see kids being doctors or nurses, labourers or firemen, whatever they want to be, but let’s at least give them a chance to get there.”
Professor Peter Gunning, head of the Oncology Research Unit at UNSW says: “It’s amazing to think that we’ve taken basic research and we’re about to create medicine that no one has ever seen before. I believe in the end that all cancers will be treatable.”
To support research into a cure for neuroblastoma, make a donation at www.ocf.com.au or call 1800 651 158.
International Childhood Cancer Day is Monday 15 February 2010. You can read more about the event: Ring A Bell for Ben and join the Facebook Group.
Find support from Essential Baby members in our Cancer Support forums.
