(brought over from the podcast thread)
worst day of my life when we were told that.
Red Kite however was fantastic. it started with a goodie bag that included an actual bag, a drink bottle, a blanket, a power bank, toiletries and a Coles voucher. Often, especially in Queensland parents come down for a day for the initial investigations and next thing you know they are stuck in the city for months. You don’t have things like Shampoo or a toothbrush and red kite provided that.
there was also a treatment diary where things like blood levels and weight could be kept as well.
we really appreciated this - the blanket especially became a part of our Go bag in case we needed to do emergency runs to the hospital (and we had a few. Those are do not pass go, do not collect $200 and jump any queue waiting for triage in the ED and go straight to the front of the line). I spent many nights under that red fleece blanket in the pediatric oncology ward.
there was also something more valuable than even a blanket - it was support. there were people we could talk to who have been though the journey and would listen to us and talk. that was the most valuable thing for me because as a father its hard to open up and the red kite support group really assisted that