Lou Torresan

Earlier in our diagnosis I uploaded Vinnies bravery beads. He's now at 358 . That's the updated combined number of pokes and prods since the 18th of April. He still has around 70 more days of pokes and prods before this cycle ends and a new one begins. Its so fricken heartbreaking and at the same time, unbelievable and amazing what he has endured. For those new playing along at home each bead represents - blood tests, PIVC, CVL, Picc Lines, tests and scans, blood transfusions, wound dressing changes, chemos, lumbar punctures, insertion of an NG tube, hair loss, bone marrow asperates, major surgery and bad days.

For 50 something days Vinnies life has relied on numbers and medical abbreviations - The chances of survival for the BMT The size of the stem cell donation Engraftment confirmation The type of medication Amount of medication tba How long medication runs over What blood products needed and how often The grade of Graft Vs. Host disease Feeding input and output Chances of remission and 5 year survival rate And for the next 21 months Vinnies life will continue to be dictated by numbers and random letters.

For months, even years we have had to assess and plan for social events that have large groups due to Vinnies health and honesty, 9/10 we don't attend - The risks out weight the benefits. This.... this makes my heart so full. For 20 minutes he wasn't in hospital, he was a 5 year old child, with his family, doing what 30,000 other people in Brisbane were doing - Watching fireworks.

Here we go... On a side note note, it is absolutely terrifying when a doctor shows you on paper in numbers the chances of success, chances of survival and chances of palliative care becoming involved. My heart absolutely aches for each and every family that has been and will be in that situation. For me, it was just an overwhelming sensation and yet at the same time there was no way to describe what was felt.