Wednesday, September 24, 2014

4 weeks back in Ireland this friday

It's hard to believe that this Friday we will have been back home in Ireland 4 weeks.
So much has happened but it still feels so weird being back. Its great to have family and friends around again which has been a great help to us in the current situation. 

Today we got to leave Crumlin for a few hours so we were able to bring Gavin home. This was the first time all 5 of us have been under the same roof in a very long time…Being in the same room and having dinner together was just amazing. The things we have all taken for granted before now all seem such a luxury and just make you realise how precious all these moments are.

Long days and nights in hospital have really taken it toll on us for the first time in nearly 3 years since Gavin was diagnosed.. we are wrecked. Sleep or lack of it really is a form of torture. The normal routine at the moment is one of us stays with Gavin every night, a couple of feet away from his bed. As many other parents will know that have had to spend time in hospital is that you just don't sleep. Between the BEEPS of the IV Monitors or nurses checking your child you have to be semi alert in case your child needs you. Also the sleeping arrangements change from ward to ward. We have a lazy boy chair which is luxury compared to what some other rooms and wards have. Some parents sleep on the floor with a so called 'mattress' (which is about 3" off the ground) or in a chair beside their child. But to be honest if I had to stand in the corner on one leg I would do it just to be beside Gavin. Steve Jobs will never know how much he has made people lives easier:) thank god for iPads and Netflix thats all I say…

So we rotate every other night to go home to our house and have a good night sleep in a bed and spend time with Conor and Lucy and my god is that good….I'd say it takes me less than 1 minute to be fully asleep once my head hits the pillow.
I read something a while ago that said you can never catch up on lost sleep no matter how long you sleep for when you can, I really believe that now…
But if you wake during the night it is hard to get back again. You head plays havoc with you, well mine certainly does. No matter how much you try and re focus on "happy thoughts" the bad ones still seem to win over. 

Last week 2 children who were patients in St. John's Ward lost their battle with Cancer. One was 14 and the other was just 6 years old. I also lost my uncle to cancer last week so overall you could say that it was a bad week.

Cancer effects us all, nobody is immune to it, no family has not had someone either treated or lost to it. 
It still baffles me every day the amount of money spent on research worldwide and their is still no cure.
Are we getting closer I really hope so…

So tonight I sit here, back writing the blog again, pondering on the last few weeks and months. Gavin is happy watching some movies, what time he will sleep or I will sleep is anyones guess, but whenever I will close my eyes I know that I am thankful for a great day today with my family and pray Gavin, Conor Lucy & Jayne will sleep well tonight and whatever tomorrows challenges brings we will face them together, as a family…and as a team.

As comedian Clive Allen always said 'Goodnight, and may your God go with you'

Saturday, September 13, 2014

Update on Gavin

Sorry for not updating everyone, we wanted to wait until we were back home and settled.

We arrived back home 2 weeks ago today. Once Gavin was comfortable after his operation in Arnold Palmer hospital, the staff and Make a Wish arranged an air ambulance to take us back home. Gavin was very happy to travel in a plane in his bed and was very comfortable all the way home thanks to JET ICU for the great trip. We were so well looked after by all the doctors, nurses and play specialist staff in Arnold Palmer and have made many friends so we thank you all for your help during our stay.

We were then picked up in Dublin airport by BUMBLEance and brought to Crumlin hospital with Gavin’s Gardai friends in front as they wanted to welcome him home. We have spent the last 2 weeks in the ICU Ward as Gavin had another operation last Monday. The surgical team and all the nurses have been amazing and really looking after Gavin very well.

We are now out of ICU and in another ward. Gavin is in great form as always and doing well. He is sitting up watching lots of DVD’s and keeping all the nurses entertained and me and Jayne…bossing us around which is great to see.

The plan now is for the surgical team to monitor Gavin over the next 10 days and see how everything is going and then hopefully we will be able to go home.

 As always Gavin is surprising everyone with how strong and resilient he is.  Thanks so much to everyone for all your messages and prayers keep them coming and our little SuperHero will be back flying around again soon.

“We would ask that any online or press media to be mindful of what quotations you print please as we need to be careful of Gavin’s brother and sister and what they can read”.