Leanne Robertson, 40, Logan Reserve, Qld Dear Sophie,
Sitting on my lap, you flashed your sunny smile. 'I've never seen a five-week-old babble away so much,' my friend Jenny marvelled. All mothers think their babies are special. But there was something that set you apart from the rest, Soph. 'She's always so happy,' I told your daddy, Tony, 39, proudly. Your sister Stacey, three, adored you. 'What's that?' you'd ask constantly after you started talking and walking at nine months. 'It's mango,' I said. 'Try some.'  | But you refused to eat solids. So I took you to the doctor who referred you to a paediatrician. 'She's a happy baby but she has no appetite,' I told him, bemused. He sent us to Brisbane's Royal Children's Hospital for an MRI scan. After the tests, doctors showed me a scan of your brain.
'It seems her lack of appetite is a sign of diencephalic syndrome,' one of them said. 'It's caused by a brain tumour.'
'A tumour?' I asked numbly, hardly believing my ears. 'She isn't eating, but there aren't any other problems.' |
'We need to do a brain biopsy to find out more,' the doctor explained gently. Kissing you as you went to theatre left me in tears. Tony was away working and I felt so alone. The op took five hours. 'I'm sorry, but Sophie has a five-centimetre tumour on a part of her brain called the diencephlon,' a doctor confirmed later 'It's the part responsible for hunger and emotions. It's why Sophie's always happy but won't eat.' He explained it was a rare but benign tumour. 'So it's not cancer,' I sighed, relief washing over me. 'Can it be fixed?' 'Not quite,' the doctor said. 'Because of its location, the tumour can't be removed. Sophie needs chemotherapy to reduce it.' A week later, you started chemo. And, amazingly, you were hungry for the first time. But then you started getting clumsy. 'Why's Sophie always tripping over?' Stacey asked. 'I don't know,' I fretted. More test results made me shed fresh tears. The tumour was making you blind.
By your second birthday you were legally blind and although I know you would have loved to see your newborn brother, Luke, you adapted amazingly well.
'Hold hand please,' you asked if you felt unsteady. After 18 months, doctors stopped your chemo. Your tumour seemed stable. But weeks later you complained of headaches and when you had a seizure, doctors gave us the bad news. The tumour hadn't shrunk. 'You'll be lucky to have two weeks,' a doctor said. 'How could a benign tumour come to this?' I sobbed to him. 'Benign doesn't mean harmless,' the doctor explained. 'It means slow-growing.' The hospital arranged palliative care and you came home. All you did was sleep. Desperate, I gave you supplements and vitamins. Two days later you woke up. | 'Hello, sunshine,' I smiled, kissing you. Within weeks you were happily playing dress-ups with Stacey. Your amazing recovery astounded the doctors as much as me. But they couldn't tell me if things would get worse again. 'Every child responds differently,' a doctor said. The doctors gave you low-dose chemo, and I kept up the vitamins. You thrived. Unfortunately your daddy and I split up around this time but it was a good year for you, Soph. You seemed healthy. At age four, you started preschool, and a year later you were still going strong and ready to start primary school. It was a day I never thought I'd see. I was as excited as you. |  |
'I'm going to learn to read braille, Mummy,' you chattered proudly.
Wednesday was still chemo day and on weekends we went to the beach. 'The water's this way, isn't it?' you asked before heading off for the shore. You loved everything about the beach, especially the TV program Surf Patrol. There was one volunteer lifesaver from the Gold Coast you particularly liked. 'I love Peter,' you sighed as you listened to Peter Anderson's smooth voice. That's when I had an idea. 'Why don't we join Nippers?' I suggested. 'Yeah!' you screamed with delight. That Sunday we drove to Surfers Paradise, where Peter Anderson patrolled. 'Hello Sophie,' Peter said, tying the surf-lifesaver's cap on your head. 'Mummy, Peter's such a sweetheart,' you sighed. Nippers was the highlight of our week, and when Channel Seven's film crew came to shoot another series of Surf Patrol you were one of the stars. 'Cool,' you cried, over the moon. Now though, at six, you had started getting headaches again and you were napping in the day. 'You know Mum, I've had a great life,' you told me one day. 'Have you, Soph?' I asked, choking up. Just a week later you snuggled close. 'I'm glad I picked you as my mummy,' you whispered. Your words tore at my heart. You knew what was going to happen. And by March this year I knew you wouldn't be leaving hospital. Stacey and Luke went to my parents and I stayed at the hospital with you. 'I want to turn seven,' you whispered. 'You will,' I said. 'I promise.' We planned your party together and on March 31 we celebrated your birthday with family and friends. By now you couldn't speak or move much, but as we cheered you raised one little arm off the bed. 'Happy birthday, Soph,' I whispered. Nine days later your breathing slowed and I held your hand as you took your last breath. Soph, I knew you were going but it was still a horrible shock for me. More than 300 people attended your celebration of life, including Peter - your lovely lifesaver. I didn't cry until I showed the video taken by your teacher when you were five. 'What do you want to be when you grow up, Sophie?' she asked. 'An angel,' you replied softly. Darling Soph, now you have your wish. You are an angel watching down on me, Stacey and Luke from heaven. We still miss you every day. You spread love and laughter everywhere you went. Soph, I know one day I'll see your beautiful smile again and until then I'll imagine you splashing happily around, like at Nippers, and always know you are my special ray of sunshine. Love you forever,
Mummy |
