Monday, 1 April 2013

April Fools - Its no joke

1st April, a day traditionally spent playing practical jokes and making fun.

1st April to me forever will be the day that our lives changed forever. The day we first heard the word Retinoblastoma.

2years ago today we were told our precious few week old baby needed to go see a specialist centre in Birmingham to check their fears and confirm that Harry had retinoblastoma. And sadly, even though our appointment was before 12noon, it was no joke. Nobody going to jump out and say 'fooled you'

Now I'm not going to dwell and live in the past too much. But there are certain dates and milestones in Harry's life that are extremely difficult to bear. I can still feel the pain I felt as I walked out of our local ophthalmology dept at the hospital, hoping beyond hope they were wrong. It was a surreal feeling, like I was floating above and looking down in on our lives. Not really real as things like that always happen to someone else. And yet we are now that someone else.

This is Harry a few minutes old, and that snuggly newborness sadly didnt last long. The memories of having a 'normal' newborn are hard to muster. There was only a few weeks of blissful ignorance of what lay round the corner.

This is Harry on the 8th April 2011, the day his diagnosis of Bilateral Retinoblastoma was confirmed. One of the most calm and serene pictures we have of him. He looks as if he is praying, he was an angel that day. He moved from life as a 'normal' baby to one of a child fighting cancer. Years of treatment and check-ups will be the life he will know.

Harry today, a beautiful cheeky little boy who brings light to all he comes across. His determination has overcome his massive disability. His extreme lack of eyesight hasnt stopped him and that is why I am not dwelling too much on the past.
Yes, he has made it through chemotherapy and the life threatening illness that came with it. Yes, he has had over 20 general anaesthetics and the risks that each one has brought and will continue to bring for the years ahead but....

CANCER, Harry is proving just what a tough little cookie he is and is ahead on points in the battle. Each visit to Birmingham brings them head to head and 'ding ding' Harry is making a gap in the points between him and cancer. He has had six clear visits now and is at 8weekly visits which is fantastic.
There is no point living in the land of ifs and buts. The 'what-if' scenario doesnt help. Harry has cancer and we have to get on with it. It has moulded him into the little character he is, he is our little Harry superstar and we love him to a million pieces.

So, April 1st, its no joke. Its deadly serious. And unlike April 1st, the joke doesnt end at 12noon, its neverending.