Paul's House, the CLIC Sargent 'Home from Home' that we stayed in totally free of charge for our entire stay was amazing. It was extremely modern and clean, and made the whole experience so much easier for us all. There are no such Homes from Home in Belfast which means some families have to travel over 100 miles to get to and from hospital, sometimes daily. We know of one couple who have had to rent an apartment in Belfast just so they can be near the Hospital during their little girls treatment- a huge financial burden. CLIC Sargent are currently fundraising to build two Homes from Home here in Belfast. You can make a donation to this very, very worthwhile appeal here if you wish...
The MIBG therapy has totally wiped out Oscars bone marrow, and therefore his ability to produce red & white blood cells and platelets. This leaves him with no immune system. He got just two nights in his own bed before returning to hospital in Belfast on Thursday night. He was back in to get his stem cells (harvested from him some weeks ago) returned into his bloodstream on Friday morning. He is being kept in isolation to minimise the risk of him picking up any infections before the stem cells do their job and he begins to produce his own white cells again. Without white blood cells an infection could be fatal. He is on a 'clean diet' which means his food is specially prepared and he has to drink sterile water etc. Oscar being Oscar he is taking it all in his stride and is in great spirits. He has been doing lots of painting, watching DVDs, playing on the Motorola Xoom tablet etc and having lots of fun with the nurses when they call in.
As many of you will know, Oscar is on Twitter (kids are so advanced these days!!) and now has over 2100 followers! We try to keep the blog updated as often as possible but Twitter allows us to throw out quick updates and photos of Oscar in an instant. A BBC Journalist who had been following Oscar on Twitter got in touch with us and asked us to do an interview on Radio Ulster about Oscar and the use of Twitter to share his story. We agreed and a Journalist came out on Thursday morning. You can listen to it here.... (forward to 55mins)
For daily updates and pictures of Oscar follow him on Twitter @Wee_Oscar
Unfortunately Oscar is likely to be in for another 3 weeks or so. It is very difficult for us when he is in long term. A lot of people dont realise that one of us has to be with him at all times- we cant just go home and leave him to fend for himself! With Dad working full time, Mum stays with him during the week, and Isobella is juggled between our brilliant childminder Auntie Helen, her Supergran Granny Knox, and her crazy Auntie Davina! At weekends Dad comes straight in from work on a Friday to let Mum get home for a couple of nights in her own bed- and to see Izzie! Its a crazy, crazy way to live. Unfortunately we dont have any other choice.