Tuesday 5 June 2012

MIBG Recovery and a Radio Debut!

Following MIBG radiation therapy, Oscar's radiation levels dropped enough to let him fly home on Tuesday, so we got a flight home that afternoon! Although we were dreading going to London, it turned out to be a walk in the park (literally at times).  Oscar handled the isolation brilliantly, and we each got to spend a lot of valuable one-on-one time with Isobella on our days off- something we hadn't really been able to do before.  She's an amazing little girl with an amazing personality.  And a joker just like her brother!!

Oscar with the Pilot after landing in Belfast

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...

http://uk.virginmoneygiving.com/northernirelandappeal

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)

http://www.bbc.co.uk/iplayer/episode/b01j8mpw/Evening_Extra_31_05_2012/

For daily updates and pictures of Oscar follow him on Twitter @Wee_Oscar

 Oscar leading the interview

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.


 DVD time

 Some shorts on ye!

 Hugs

 Painting!  All of us in the park! Totally un-assisted of course ;-)

A favourite past time- playing on the tablet

Tea & cookies!!! mmmmmmmmmmmm

A typical moment in a typical day!

Send Oscar all your luck, prayers, anything at all and hope that his blood counts recover soon before he catches something.  Although he is very well and in great spirits, these are decievingly dangerous times.


5 comments:

  1. Hi Great to see Oscar at home. I see he likes dunkin his choc-chips just like my wee granddaughter its the only way to eat them!!

    All the best Oscar with your treatment. Prayers and thoughts with you and your family Koxxy.

    Jude family xx

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  2. Great to see the pics!! Oscar I think your getting bigger!!! Sending you loads of good luck... Prayers... Big hugs and loads of love!!
    Nicky x

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  3. Best of luck wee man, just stumbled upon this site and will follow and hope and pray for you keep on roaring.

    Millwall Rob

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  4. Prayers and thougths are with you all, I really hope that all goes well and you are back home with Mun, Dad and little sister real soon. Your a wee star Oscar and you keep on fighting the way you have God bless you all....lots and lots of love coming your way :) xxxxx

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  5. Just heard your story wee man, Oscar you're a little hero, best of look tomorrow, my fingers will be crossed! Alan

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