Wednesday, 20 June 2012

The Oscar Knox Appeal Launches

Hi everyone, I've had a bit of a break from blog posts, but all fired up and ready to go again!  You know from our last post and tweets that we have finally made the decision to fundraise to ensure Oscar will definitely have access to whatever treatment he needs now or in the future.  I hope everyone knows we did not take this decision lightly, but we truly believe it is something we need to do.  Some aspects of neuroblastoma treatment in the UK are behind what is available in the USA and Germany - we just can't take the risk he may need something urgently that we can't access in time for him down to cost.  It would be like living on a ticking time bomb, always waiting for the worst to happen.  Which I suppose isn't too far from the reality for us right now anyway!  But at least we can do something about this one, and boy do we intend to...

Today we launch the offical Oscar Knox Appeal.  This is our campaign to raise money for Oscar's crucial immunotherapy treatment which should only be 2-3 months down the line.  It is currently not available in the UK for us, but along with other neuroblastoma parents we are desperately hoping this situation may change in time for our kids.  If it doesn't, we will need to move rapidly to seek and pay for treatment for him in either the USA or Germany, as of yet we haven't been able to figure out the most appropriate treatment facility.  If Oscar gets this treatment in time here, then any funds raised in his name will be held for him incase he ever needs further treatment outside the UK.  Even if Oscar manages to get into remission with his current treatment, there is a VERY high risk of relapse with neuroblastoma, which almost always requires urgent treatment abroad.

Please visit the official Oscar Knox Appeal page.

The JustGiving page can be accessed directly here.

A massive thank you to Neuroblastoma Alliance UK - they do incredible work on behalf of neuroblastoma kids and their families.  They have guided us and helped us every step of the way over the weekend with launching our appeal, and we look forward to running a highly successful campaign with them for our wee Oscar.

Sunday, 17 June 2012


Immunotherapy offers the first substantial cure rate for Neuroblastoma in many years.  Evidence has shown that children receiving immunotherapy have a greatly reduced chance of relapse and therefore a much better chance of long term survival.  It is absolutely essential that we get this for our amazing little boy!

At this moment in time, there are no options available to Oscar to receive immunotherapy drugs in the UK, however, they are more widely available abroad.  He was due to get this crucial final phase of treatment on the European clinical trial he was on, but he had to be withdrawn from the trial to have essential MIBG therapy in London recently.

Immunotherapy drugs are only available within clinical trials here.  Further clinical trials involving immunotherapy may open in the future, which Oscar may or may not meet the entrance criteria for, but we cannot afford to sit around waiting to see if this is the case.  Time that Oscar simply may not have.

We have ALWAYS put Oscar and the quest to get him the best possible treatment first.  This is why we have taken the decision to launch an 'Oscar Knox Appeal' to fund treatment abroad.  Although we know that this is a huge undertaking, we believe it is essential.  We have to know as parents that we gave him the best possible chance.  We can't lose our wee Oscar.

We will let everyone know more once we have our plans in place.

Thank you all for your continued support.

Stephen and Leona

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...

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

 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!


 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.