11 year nightmare

Today is the 11-year anniversary of Rory’s diagnosis with medulloblastoma as a 6 year old.  11 years ago our world was turned upside down.  Rory presented with two brain tumors so was classified as high risk.  His chance of survival was 50-65%.  Incredibly he beat the odds but survivorship has come at a huge cost.  All of Rory’s disabilities are a result of the cancer or its treatment; deafness, learning disabilities, hormonal failure, superficial siderosis and the list goes on.  He is currently fighting osteosarcoma (bone cancer) which was caused by radiotherapy in 2009.  The prognosis of patients with secondary bone sarcomas is generally poor.  We do not know whether the treatment Rory is enduring will buy him one month, one year or a decade.  We can only hope he remains on the right side of the percentage and that the cost of survivorship is not more than he, and we, can bear. 

Rory has been a pin cushion over the last couple of days.  He received the GCSF jab, which stimulates the bone marrow to produce granulocytes and stem cells and release them into the blood stream to boost his immune system, at the hospital on Monday.  The Testosterone jab (to replace what he is missing) was given at our GP today.  Rory visited Gabby the Physio at the Hospital this afternoon.  She gave him some gentle strengthening exercises to do. Rory is very wobbly and easily fatigued.  I caught him from having a fall this morning because he tried to move across his bedroom without the walker.  Rory’s physical ability in the future is very much an unknown.  Rory went to Inglewood High for a couple of hours this morning.  He is happy to be back as “everyone is there” but it is a real dilemma as to whether to send him to school.  Coronavirus is currently not circulating in our community (to the best of our knowledge) but to expose Rory to other people is to increase the risk he might have contact.  I know families around the world are isolating their CKs at home.  Current advice from Starship is to avoid contact with people who have travelled overseas and avoiding public gatherings.  However, it is very much an evolving space.  I am limiting the places in our community where Rory goes.  Visitors to 27A and B at Starship are now being limited to two carers and no siblings.  This will make it a challenge to care for Colt when we return.  Colt is back at school. He was a bit reluctant.  It is unknown what the impact of Rory’s treatment is on Colt but I think he also feels like he belongs in two worlds and in neither.