Journey

Rory has 214 Beads of Courage, given since the start of treatment for osteosarcoma (bone cancer) in September.  The beads provide a physical story of his journey recognising his strength and courage.  Each bead represents a treatment (white is chemotherapy, black is injections), an experience (yellow is nights in hospital) or a milestone (bumpy is 100 Beads Club).  The Beads of Courage programme is administered by CCF (Child Cancer Foundation).  Cancer kids (CKs) deserve every one of the beads they receive.  While other children are out in the world being children CKs are in hospital for extended periods of time receiving toxic and extreme treatment in the hope it will save their lives.  They are often left with significant disabilities.  They are robbed of so much.  The fear cancer will return does not fade with time.  The Beads of Courage are an acknowledgement CKs are special, they are something tangible to show for all they have endured.  Rory already has 1200 beads from treatment for medulloblastoma (brain cancer) ten years ago.

We have made it home.  It was a very slow morning on Saturday.  We watched the clock tick by minute after minute until the fluids were stopped at 12.15pm, his port was de-accessed (external needle and lines removed) and Rory was able to be discharged from Starship.  This chemotherapy cycle Rory has had little appetite and felt nauseous.  I was getting concerned this would continue but after a couple of decent nights sleep (12 hours each) he is a little better today.  Rory received the GCSF injection yesterday morning.  This will boost his immune system over the next couple of weeks while we are home.  Rory says the greatest thing about being out of Starship is the ‘freedom’.  I am hoping he will be well enough to go to school for a couple of hours tomorrow morning.  He will be neutropenic with no immune system by Thursday.