Mixed emotions

It really is a time of mixed emotions for all of us.  As we go about the usual routine associated with a week stay for methotrexate I find myself thinking repeatedly ‘this will be the last time’ for everything we do.  In the back of my mind is the question - or is it?  When Sean and I were talking quietly in the afternoon Rory asked “What’s going on …… am I going to die?” then promptly burst into tears.  Everything is so very fragile.  It feels like we have been on a harrowing journey which finishes at the top of a cliff and we risk falling off into nothingness.  I remember it felt very similar at the completion of Rory’s treatment for brain cancer 11 years ago.  There is a certain amount of routine and security when you live within the small framework of Starship and RM House, with short bursts at home.  Your life is reduced to only what is important for survival.  If things go wrong specialist support is at hand with very little delay.  Once children go into remission this support structure falls away.  The health and well-being of childhood cancer survivors post-treatment is managed from the regions.  It is a mixed bag.  The quality depends very much on how hard a mother works and finding one great doctor who will act as an advocate for your child.  Everyone assumes the journey is over and we will pick up life where we left off.  However, it is not possible to transition back to life as it was before the diagnosis.  We are not the same people.  We will all have to find a new normal. 

We met with Dr Stephen to talk through the monitoring and procedures for Rory for the next six months.  He will need a CT of his head, neck and chest every three months.  They will be watching his lungs carefully as this is where osteosarcoma commonly reoccurs.  We will see Dr Stephen in clinic in New Plymouth two to three times a year.  Rory’s port will be left in his chest for now and will need to be flushed every four weeks.  It will be surgically removed later in the year following his next scan.  Rory will need occasional blood tests and IV infusions.  In four months Rory will need to be re-immunised as chemotherapy has cancelled previous immunisations.

Today is Day 6.  Rory is expelling methotrexate at a similar rate to previous cycles so we hope he will be able to be discharged this afternoon.  On Thursday he had the beginnings of an Addisonian crisis.  In the morning his eyes rolled back then closed and he would fall asleep sitting up with his mouth open.  He would rouse for 5-10 minutes and then it would happen again.  He received two IV doses of hydrocortisone and was a lot better by late afternoon.  We made the decision not to give him the Zopiclone Thursday night in the hope he would pee more.  He did pass a bit more urine but was restless from 1am keeping himself and Sean awake.  He continued to require furosemide twice a day so it was a failed experiment. 

We have made sure to do some of our favourite activities in Auckland during our final week; window shopping in our favourite stores, early morning walks on our favourite paths and stopping for a snack at our favourite eateries.  Colt and I enjoyed a swim at the Tepid baths and Sean and Colt had a few hours of fun at Rainbows End yesterday afternoon.  We gave a gift of appreciation to Ronald McDonald House which has been our home away from home for a large part of the last nine months.  We are fortunate such a facility exists in Aotearoa to support kiwi families when their children are unwell and fighting for their lives.  There were hugs with Dr Stephen, Nurse Tracey and Dr Kath yesterday afternoon.  There was a lump in my throat.  It is hard to put into words what they have done for Rory.  They have played a major role in saving him.  We have trusted them, we have relied on them and they have become part of our inner circle.  We will miss them.  Dr Stephen congratulated Rory for seeing treatment through to the end, many teenagers don’t. 

Thank you to the Child Cancer Foundation for the tickets to Rainbows End.