The Girl Who Gave Me a Rainbow
By Carol Duncan - 7th July 2010
I've done some tough interviews in my 20 year broadcasting career. Politicians, world leaders, superstars, mums, dads, kids, cops, rich, poor ... people with joyous stories to celebrate, people with tragedies to share. For Starlight Day this year, I did an interview with 12 year old Dainere Anthoney. It was both a pleasure and a heartbreak, but to me this is what my job, and my privileged position is all about.
Dainere came into my life earlier this year when a friend asked if I might be able to help with a contact at Dainere's local ABC station in Canberra about her Starlight Foundation wish. Dainere's wish was simple. No trips to Disneyland, no meeting her favourite popstar or television star ... something far more elegant, and difficult, than that.
One of the many side effects of Dainere's treatments for medulloblastoma - a malignant and aggressive brain tumour - is that both her speech and hearing have been affected. Talking became more difficult for her, so she started to write. And write she certainly does! Dainere's blog is extensive, detailed and personal, and I strongly recommend you read it for yourself. And please leave a comment, she loves it.
This is where her wish came in. She wanted her words, her journey, published in book form. And through the love and generosity of many people, her wish came true and Dainere's book, You Have To Go Through A Storm To Get To A Rainbow is now available in Borders and Angus and Robertson bookstores, or through her website. I personally have to thank all those wonderful journalist friends around Australia who answered MY call to 'make a fuss' of this little girl, and her dream. You know who you are, you do your profession proud.
The lovely Jayne Azzopardi from Channel 9 was just one, she had Dainere everywhere, including the National Nine News and The Footy Show, my ABC colleagues on both radio and television also came to the party, and it delighted Dainere - it is what she wanted to do because she is donating the proceeds of her book to brain tumour research.
Yvonne Anthoney, Dainere's mother, says her daughter has strength and wisdom beyond her years, "She's the most incredible and precious little girl you could ever meet, she is so courageous. We're really proud that she's our daughter and how she has handled this whole situation since she was diagnosed."
Dainere is a wonderful writer, she is only 12 years old but she knows both the meanings of, and how to spell, some truly terrible words.
Medulloblastoma, for one.
She writes a large new entry on her blog every few days, details of the exciting and joyous, details of her treatment and her agony of living with a brain tumour. "Each day she wakes up and she says she's going to make the most of each day, she always finds the bright side of whatever she's going through." says Yvonne, "
When did Yvonne realise something was wrong with her athletic little girl, the girl who loved cross country running? "She had been sick since the year before, after running the cross country, she got a chest infection and she never seemed to pick up. It got to the stage where she started to vomit of a morning, and started to have falls. She became weaker and weaker, she fell off her bike and down the stairs. We had numerous visits to the doctor and finally to the paediatrician who sent her out of the room and told us he could see a mass behind her eyes and sent her for an MRI. It was a whirlwind from there. From Canberra Hospital she was rushed to Sydney that night on a light aircraft, operated on the next day and in intensive care, unable to breathe for herself. She was then diagnosed with a high-risk medulloblastoma as it had spread. She had to have 32 treatments of high-dose chemotherapy, the highest they could give her, but there was still tumour remaining after that. She had another four high-dose chemotherapy treatments and a stem cell transplant. There is still tumour remaining but we have to remain hopeful - we have to be - what else can we do? We've been given this journey, you can't just lie down and dig yourself a hole, you have to keep going."
"We look at our lives from a different perspective now and each day is more precious than the day before."
Dainere finds it very difficult to speak. The words are there, but she struggles to get them out. But she did want to tell me about the day the first box of her book arrived, "It was magnificent - I wanted to jump up and down even though I can't!" I knew she was excited because I had seen a photo of her that day, with the box of books. Dainere is a very particular young lady but that day she let herself be photographed without her beautiful wig. So what has it been like since the book was launched, "It's been very busy with lots of special visitors, even politicians. And I got to meet Benji Marshall. Lots of people have wanted to come over."
Why did she want to write? "It was hard for me to talk, so I just started writing my blog. I like it when people leave comments." Dainere is hoping that we will continue to tell her story, and help sell her book, to help other people. "I hope it inspires them and helps raise awareness about brain tumours."
This is what Dainere wrote about me after our interview, "Then in the afternoon after I had had a sleep again we talked to Carol from ABC Newcastle she is one of the people who worked so enthusiastically and with a heart of gold on my book. It was just awesome to actually talk to her and I felt like I was talking to an old friend. She is so tender hearted and I really liked her. The story will be on ABC Radio Newcastle tomorrow." "Love is understanding through difficult times, being able to laugh to keep from crying and always being there for each other." [Editor's note: Click Here to access the audio of the ABC interview.)
You are a remarkable young lady, Dainere, and I am honoured to call you my friend. Thank you for letting me tell your story.
Photo credit: Luke Arms - Luke travelled to Canberra to do a photo shoot with the family. As a gift. Thank you, Luke. Your photographs will be treasured by the family.