My life as an undercover volunteer
Secret Millionaire – Channel Nine 9.30pm 29 Oct.
Episode Four: Features Naomi Simson
I caught the train early to Brisbane, once at central I trekked out to the Children’s Cancer Support unit (CCS) near the Children’s Hospital. The CCS is an accommodation and support service for the families of children with cancer – Marg the family liaison officer showed me around the facility – she is a warm hearted ‘mother’ figure to all.
I was nervous, I knew these children would be ‘different’ – many years ago I had held a friends hand during her oncology treatment so therefore had some experience with the devastation left for chemo patients. I was worried that I wouldn’t be myself with these kids – seeing their illness before seeing them.
Marg invited me to join the parents and children for a morning tea. I introduced myself as a mum whose kids were busy at school so I had a bit more time on my hands to do some volunteer work.
I was a woman of a 1000 questions wanting to know the services and operations of the facility. There are often many siblings of patients staying in the accommodation. We sat around a big play table – with books, and video’s and toys everywhere – I bit like a play group. As a volunteer my role was to play with the children (now this I am good at) – it is a few hours break for the parents. They are there, but are able to talk and have a cup of tea. Having a child with cancer is a 24 hour a day – every day job. It is hard to finish a sentence let alone get out and do a grocery shop.
I sat on a child’s chair after meeting most people and began to play with a sibling Helena (aged 3) of a Cairns based family, we did a jigsaw together.
Maddison kept a close eye on proceedings from the other side of the room. I chatted with parents about where they were from. One woman from Mackay was just starting her journey – her 2-year-old Thomas diagnosed with leukemia just a few weeks ago. I met Jared a 15 year old (brother of Helena) had been in and out of the CCS since 2006, a break to his arm during a basket ball match had revealed his bone cancer.
Charlotte had only been in Australia (migrated from UK in February 2008), when Katie (2) was diagnosed in November with Leukemia. Her mother has come to Australia – it is only a few weeks since Katie was so ill that they thought they would loose her. But today she is in bright spirits – just as easily tomorrow she could take another turn. These children cannot be more than 10 minutes from the hospital, which is why the accommodation service is so important.
I moved to the other side of the room to chat to Andrew, father of Maddison, (aged 4). She’s a cutie; clasping a bright pink bottle of nail polish. Her taste buds are ruined during treatment – so she has a tube inserted into a nostril down into her stomach to drip a liquid formula for sustenance. It is more than a year since she has eaten anything. She lost her hair, eyebrows and eyelashes during her first chemo – eight months ago. She is now partially deaf, lost a liver, and a kidney, – but Maddy is a trooper with a determined spirit.
I can see Maddison eyeing off my hands. When I offer for her to paint my fingernails she is truly excited – I see joy in her little eyes. There is something so wise about her. She moves tentatively, almost like an old person. She paints each nail with relish, paint up and down my fingers, we both giggle. She is delighted. I ask her if she does a pedicure as well. Luckily I have worn thongs. We become buddies as she makes my toes outrageously pink.
We sit to wait for them to dry, she wants to go to the park. But she has her first round of radiation therapy this afternoon. So she invites me to the play ground outside her flat provided by the CCS. When we get their I play football with Katie.
Maddison has pushed her dolls pram down the path and then sits to one side to watch us play. She has no more energy. I go to chat more with Andrew her Dad. He and Maddy’s mum Fran, had met at work, Andrew has taken a year of leave without pay to nurse Maddison while Maddy’s mum works to support them all.
I am amazed as I watch him administer medicines to Maddison the note taking required is extensive. He then begins to list all the treatments and ailments that Maddy has had so far – and she still has a long haul.Two bone marrow transplants, chemo, operations, transfusions, the list goes on and on. At some point as I look between us – Maddison has snuggled in a blanket and dropped her head onto her dad’s lap. She is murmuring ‘Medicine Dad’. ‘Not until 2.00 Maddy’ he replies – his heart breaking more. I listen as he lists more and more things that Maddy has endured my eyes mist over.
Here is a man who one year ago was like any other Dad, taking his kid to the beach and mucking around with her. Now she is as brittle as a china doll. He laments it is a 1 in 400,000 chance that this could happen.
To demonstrate the number of treatments – he brings out some necklaces. Six long ones, he said that every time Maddy has had a treatment or was admitted to hospital she would place a bead on the necklace. Every colour of the beads represent a different treatment, some of the larger beads the transplants, a special one for the loss of her hair. It is just so vivid in that moment how much this child has endured there are hundreds and hundreds of beads on these necklaces.
I ask Andrew about his life. The fundraising done by his work colleagues and Maddy’s preschool meant that they have been able to keep their house. But the hatch back car will have to go because Maddy, the wheel chair and all the other things they must transport just don’t fit. He says they have to watch every penny. Everything now goes on supporting Maddy.
Maddy invites us into her home to see what the CCS provides. She is so tired – she lies on the couch. As I farewell Marg I ask how does she cope when they loose some of the children. She says that she knows that the CCS unit has provided a better experience for the families, which gives the child more love – and that is all one can hope for. But it is never easy. 90% of all they have is donated. Fundraising is a huge proportion of the CCS activity. Just to keep the houses going.
As I go to leave, tears are streaming from my eyes. I feel so absolutely helpless. These dear sweet-hearts dealt a bad hand suffer so greatly – and they have not even had a first day at school yet. I want to take the pain away, to fix it, to make it right – but I am no fairy godmother, and no amount of money can change the diagnosis.
Andrew dreams of seeing his girl go off to her first day of school – that is a dream that is still too far away to even contemplate. I ask if he and Maddy come to the Gold Coast on the weekend could I visit them again.
The rest of the day is almost a blur. I learn more about other great things that people are doing. But my energy is all about how can I contribute not just set Andrew & Maddy up but the many other family’s that are there now and in the future.
I think of little else during the evening in the ‘green neon hilton’. My life, and my healthy children seem so very precious and so very far away.