Twp brothers and a hippocampe

Hippocampe Sam Rory Awakino II

It feels like the world has gone mad.  At night when I close my eyes I almost anticipate it will be over when I wake in the morning.  But it isn’t so.  Our world has narrowed over the last six months and we live on the razors edge as we try and keep Rory alive.  We have forced fear and despair down time and time again.  With the advent of the corona virus hysteria now also lies just under the surface.  It is tempting to give in to its power.  Statistics from China indicate outcomes and virus severity for cancer survivors is worse than the general population and for patients on active treatment it is worse again.  Rory’s life feels like a game of Russian roulette.  To improve the odds in his favour we have narrowed things even further.  The next fortnight is a run on birthdays in our family.  This week Poppa Honnor is 82 and on Friday Rory turns 18.  We have stopped close contact with everyone but the people living in in our household.  Rory cannot have a couple of friends to birthday dinner and we have cancelled family lunch for Poppa.   It will be hard not seeing Poppa in the weekend, to hug him and tell him we love him on his birthday.  I am worried for my parents.  Even though they are well they are vulnerable because they are in the 70+ age bracket.  If they get corona virus I will have limited ability to help them.  It is distressing.  We are working though things with Sam and Caitlyn.  They spend half their time at our home and half their time at Caitlyn’s.  They are also both working, Caitlyn in an office.  This means Sam and Caitlyn both have close contact with a new set of people which we are unable to control.  They are both speaking to their employers.  We are very much taking things one day at a time and trying to close as many doors as possible.  My mother said to me “You can’t protect Rory from everything” but I am going to do absolutely everything I can to try. 

On Saturday the Hippocampe gave us back something which cancer has tried so hard to steal from us over the last 11 years, time as a family exploring the outdoors.  We drove north to Mokau and walked along the coast at low tide to the Awakino River.  It was a fine, warm afternoon and very peaceful.  People were horse riding and fishing.  Sean managed to spear a flounder.  It was a gem of normality and an opportunity to shutter out the world.  Sam and Caitlyn came with us and it was lovely to be together as a family.  I couldn’t help but wonder how many more opportunities like this we are going to get over the next few months. 

Rory and I are back at the Children’s Ward (2B) at Taranaki Base this morning.  Rory has had a blood test.  He is still neutropenic.  His haemoglobin and platelets have declined further.  He will be having a transfusion of platelets but his haemoglobin is not quite low enough for red blood cells to be given.  Over the weekend he has been tired and very cranky.  There has been intermittent bleeding from his nose.  Thankfully there have been no symptoms of an Addisonian crisis or infection (touch wood). 

Thank you to our neighbour Susan who dropped us off a bottle of hand sanitiser and disposable gloves.