365 days

Exactly two years and two months ago today I took Matthew to Musgrove Park Hospital in Taunton, he'd had a very high fever for a couple of days, but apart from looking a bit pale I wasn't concerned.  We were expecting to have a blood test and then come home.  As it happened, I had asked my Mum and Dad to come and look after Abi and Thomas as I didn't want to cart them to the hospital for what could be a few hours of waiting around.  Having been completely unprepared, I missed the concerned looks being exchanged between Drs, its very clear in retrospect now.  We'd only been on the ward a few minutes and after Matthews first examination by a junior Doctor, he came back with a senior Doctor.  They did not say a word to me to frighten me, other than they could not rule out a form of meningitis, but were very reassuring.  I popped home to get some clothes and the rest, as they say, is history.

Two years and two months later, I consider some of the ward staff my friends and I am on first name terms with the consultants.  I spend a lot of time carting Abi and Thomas to the hospital for hours of waiting around and know the hospital as well as my own home.

One week after diagnosis

Five weeks later

6 months later 2010

October 2011

 

 

He has been through so much in the last two years, more than many adults endure in a lifetime.  Recently, many people have made the comment only another year, the ends in sight, it will be easy now.    For Matthew, and for me, its actually quite the opposite.  The Leukaemia road is a long one, and we are two thirds through it, but this little boy has lost two years of normality, being able to join in all of the games his friends can, not being able to  play on the apparatus at school, missing out on some favourite foods and more recently it appears he is becoming insulin resistent when on steroids, which means excluding treats for the 6 days each month he feels like hell.  Each month of treatment is seeming to take more out of him, more pain, more nausea.  For him, knowing there is another 12 months ahead is like a life sentance. 

For me, its a worry, not that I'd ever tell him that.  I worry that he is not tolerating treatment so well.  Each month he seems to struggle more, physically and emotionally.  He has not been properly well since December 2011 before he had shingles, renal failure was a side effect of that treatment, yet another kicking his body took.  His bone marrow is getting tired, and I've been told it is more likely that they become ill in the third year.   The Dr's have all seen this before, to them its routine.  To us its not and somehow he needs to have the strength to get through the next year and come out as unscathed as possible at the other end.


365 days could be a very long time but with our little milestones on the way we will get there.