My name is Matteo“The experience has made us see brighter, hug tighter and love longer. We don't sweat the small stuff and live life as if it was our last day, every day.”
Matteo … what can I say about my little big man? He teaches me things every day and has no clue how amazing he is. He's a warrior and a true superhero to many. At the ripe old age of 7 he knows more about how one should live life than even the smartest adult. His 12-year-old sister will never forget the sight of his thin, tiny frame and dull yellow complexion as he fought his way through treatment. He had no eyebrows, no eyelashes or hair, yet Matteo fought on with a huge smile and a laugh that could be heard down the quiet halls of the Paediatric Oncology ward.
How did bladder cancer come into your life?
Matteo was just 16 months old when he had abdominal pain that was increasing with time. He would just scream and scream in pain – it was so hard to figure out what the heck was going on. Then there was blood, loads of blood in his diaper, but still the hospital had no clue what was happening. Four trips to the emergency room later, my tiny 20lb baby was in acute renal failure and they found a 5 x 7 tumour in his bladder. Life would never be the same again.
What was the initial cancer diagnosis?
He was diagnosed with Rhabdomyosarcoma (a form of bladder cancer) at 16 months old. After his first round of treatment the cancer returned in just 3 months so they gave him a much harsher second protocol (that would kill an adult). They waited. 3 months later the tumour was still growing so they decided to remove his bladder and prostate at the tender age of two and a half. At this stage he'd endured 45 blood transfusions, 25 platelet transfusions and 30 rounds of pelvic radiation.
What life changes have you made now you are affected by bladder cancer?
To talk about the changes, well, I could go on forever! Because Matteo is so young, as a family we tend not to focus on it as we have our ‘new normal’ and it is what it is. However, there were changes in friends, family and life which had to be done. No outside kids, no shopping malls, no public outings and living in isolation rooms became our life, and to a lesser extent it still is. But now we are totally used to it and again it is our normal.
What positives can you share about your experience?
For Matteo there is no positive yet, he is way too little and his fight is far from over. As his parents and as adults, the experience has made us see brighter, hug tighter and love longer. We don't sweat the small stuff and live life as if it were our last day, every day. Nowadays we are choosy about who we let into our lives – focusing on people who are positive and bring warmth and love into our lives. My momcology family (a group of mothers all coping with their children's cancer diagnosis) is my life. Cancer does define me because I live it daily with Matteo and his after effects. Also, his little brother Nicco was diagnosed with leukaemia at 2 years old.
How has Fight Bladder Cancer helped you?
As a mom, I cannot tell you how scared I was to see this tiny body snuggled into mine as I lay in his hospital bed with his huge eyes asking me “Why don't you help me? Why am I hurting?” Fight Bladder Cancer connected me with people who have been (and are going through) what he was. They could tell me how they felt and what to be aware of. I picked up so many tips, like take Gravol before radiation and how food might taste to him. Matteo lost his voice from all the trauma he experienced and at 4-years-old, still enduring gruelling medical treatment could still not speak, so Fight Bladder Cancer was his voice.
What advice would you give someone who has just been diagnosed?
Sit, freak out, be scared. Then FIGHT! Roll with the punches and get up. Never play catch up with pain or nausea. YOU CAN DO THIS. YOU GOT THIS.
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