Today the forest is dark

Beer tasting Rory and Rob Ms Whites

Today the forest is dark.  The trees are sad, and all the butterflies have broken wings (author unknown). 

We were devastated this week to hear that a young man who was going through treatment for osteosarcoma just ahead of Rory has new tumors.  Despite the best care and significant progress made during treatment sometimes cancer comes back.  It is called a recurrence or relapse.  A few of the original cancer cells survive to multiply and spread.  We feel devastated for the young man and his family.  There are options for him but none of them are good.  We feel angry such a cruel disease attacks the young who are just beginning their lives and inflicts pain and suffering on good people. 

Hearing your child has been diagnosed with cancer is devastating.  It levels the landscape of your life like an atomic bomb.  It is hard to breathe or feel or think.  You function on automatic pilot consumed by an all-encompassing fear for the life of your child.  Even worse is hearing the only treatment options available will not achieve remission.  I remember like it was yesterday sitting in a room with Dr Stephen and having him tell me the surgeons would not operate to remove the tumor in Rory’s jaw.  Quality of life and time were the only results treatment could achieve. 

The fear never goes away.  If your child survives treatment to go into remission you confront the fear every scan and every time they display an unusual symptom.  Rory was diagnosed with a second cancer 10.5 years after his primary diagnosis.  It is not possible to predict who will get a second cancer but certain treatments can put a person at higher risk.  Radiation therapy was recognized as a possible cause of cancer many years ago.  When Rory was diagnosed it was considered the big gun for brain cancer and necessary for survival.  We had no choice but to consent to it.  As we step day by day away from the end of Rory’s second cancer treatment we will continue to walk on a tightrope, because this is the only choice we have.

Rory spent Tuesday afternoon with Rob.  They went beer tasting at Ms Whites in New Plymouth.  There can’t be too many customers drinking beer with a straw!  The owner gave Rory a t-shirt to wear.  Rory thought it was fantastic.  Afterwards Rob said to me “sounds like the sessions are going in the right direction for Rory, what he wants to gain/experience”.  My reply was “Rory just wants to have the same experiences as others his age.  They are all the more precious because we don’t know what is ahead, or how much time he has”.  Rob is giving Rory experiences I can’t and it is pretty great.