An update on Oscar

Today, we received the update from a team of cross specialist doctors in both Leeds and London that, following the MRI scan, the cancer in the fluid within Oscar’s spine and surrounding his brain has spread. The impact of the new chemo drugs hasn’t worked. Additionally, Oscar has become weaker and other symptoms are being controlled by a range of drugs throughout the day. Despite everything we’ve tried and researched, the aggression of the relapse is now too far for us to safely continue with very harsh treatments. It is with deep sadness that we now care for Oscar and make him as comfortable as possible at home surrounded by people who love him dearly.

Despite the last 14 months, Oscar has lived a full life and done more than many kids do in a lifetime. With his brother, we travelled around the world in 2007. He lived in Denmark and speaks fluent Danish. He was supremely gifted in sport and was set for great things in both tennis and football. He was a joyful boy with a huge smile and loyal personality. He has lots of friends and an infectious personality. Even this year while going through chemotherapy, Oscar raised considerable sums of money for Candlelighters and won a Child of the Year award in York.

To his brothers, he is the best they could have. Marie and I are sad beyond belief. Oscar is such a wonderful boy and has brought us nothing but happiness.

To all that have helped so far on this journey, thank you. We can’t express how much we’ve been overwhelmed by efforts and generosity, both big and small. As people continue to raise and donate money, we feel that it is important everybody understands the new phase of our journey with Oscar as this may impact future plans. If you want to continue with planned events in the spirit of our brave and inspiring boy, we will leave the fund raising page open.

From the outset, we were keen to ensure that funds not used for Oscar would be redirected to help other children in similar situations to this one that Oscar has faced. We will continue to liaise with the Brain Tumour Charity to discuss the help they require to search for a cure for brain tumours in children.

As a testament to Oscar’s kindness, bravery, genorosity and selflessness, this seems a fitting legacy.

Marie, Ian, Oscar, Sebastian and Lucas

Golf Day on Friday 30th May at Sandburn Hall

There is a golf day to help raise funds for Oscar on Friday May 30th. Ideally looking for teams of four but if you want to enter as a single, it’s no problem as we will form teams from any single entrants.

Details as follows:
• Coffee & Bacon butties on arrival
• Range Token & Course Guide
• 18 Holes of golf (4 ball better ball stableford ¾ handicap)
• Prizes for first 3 Teams & 2 nearest pin & a longest drive
• 2 Course meal in Grand Function Hall
• Prize Presentation & bar available until 11pm
• Cost for the above is £50/player (£200/team).

Payment & confirmation of names/handicaps by Friday 16 May.

Any queries please contact Steve Fenwick on advancestocks@btconnect.com.

A day at the hospital

Oscar spent most of the day in Leeds. Morning spent having MRI scan and then him getting over that. Spoke at length with his oncologists and the peer review will happen in the next 24hrs with two of the UK’s top specialists in children’s brain tumors. Fingers crossed.

Last night’s MUFC social media support for Oscar helped to generate 9000 visits and at least £10K of donations. Additionally today, fans from Liverpool FC and Leeds United tweeted about Oscar which is great to read and see – thank you to all of them – showing the bond sport can generate in a cause like this

There are at least 50 events being organised within our village alone and it is a great support to us all when we hear about the efforts people are going to. Words can’t express our thanks to everyone.

But, we’ve also seen support from all parts of the World where Oscar’s story is beginning to inspire people to send us notes of encouragement and where he’s hit a chord with people. Those that know him personally can testify to that.

Thanks, Ian, Marie and the boys.

Oscar’s story goes global

What a day. Oscar has been very sleepy and settled. Marie has been spending a lot of time making sure he’s comfortable and searching the world for doctors who have some expertise in Oscar’s condition.
Today we decided to push for formal second opinions so we got in touch with teams at the Great Ormond Street and Royal Marsden. With our doctors in Leeds we’ve managed to get THE top brain tumour specialist to review Oscar’s notes. We hope to gain more insight and hope this will lead to additional cutting edge treatment for Oscar.

Oscar MUFC

Late this afternoon we received an email from Manchester United to tell us they’d help promote Oscar’s fundraising as well as seeing some other things they could help with. At about 6pm they went on Twitter and Facebook about Oscar to over 70 million followers! Then all the kind donations started to flood in from United fans all around the world. Just brilliant and Oscar gave us a small smile when we told him. Wonderful!

We have also had contact for some other “big names” which we hope to confirm soon.

To everyone who’s donated, planning events, sent us notes of support, baked cakes….THANK YOU! It keeps us all fighting.

Car Boot Sale – Sunday May 11th

Anyone looking to do a clear out of toys, books and games?  A small group is planning to do a car boot sale at the Auction Centre on Sunday May 11th and donating all proceeds to Oscar’s Fund.  The more the merrier.  It’s a 6.30am start and an opportunity to get the kids involved in fundraising too.

Jonno Greening Joins Oscar’s Fighting Fund

Jonno Greening Joins Oscar's Fighting Fund

Jonno Greening Joins Oscar’s Fighting Fund

Jonno Joins Oscar’s Fighting Fund:

Nottingham Forest midfielder Jonathan Greening is risking losing his beloved locks by getting involved with a very worthy cause and he needs help from The Reds’ faithful.

Eight year old Oscar Hughes was diagnosed with a brain tumour in February 2013 and despite a year of gruelling treatment and recovery he recently relapsed to the life-threatening disease.


Read more at http://www.nottinghamforest.co.uk/news/article/jonno-joins-oscars-fighting-fund-1510795.aspx#gkphGCqSSMlkKiMb.99

 

http://www.nottinghamforest.co.uk/news/article/jonno-joins-oscars-fighting-fund-1510795.aspx

Big appeal to help Oscar Hughes – York Press

Big appeal to help Oscar Hughes, of Dunnington, who has suffered brain tumour relapse

York Press

Oscar Hughes, of Dunnington, York, who has suffered a relapse from a brain tumour

THOUSANDS of pounds has been raised in 24 hours for York schoolboy Oscar Hughes after he suffered a sudden relapse in his recovery from a brain tumour.

Read more on the York Press:
http://www.yorkpress.co.uk/news/11172522.__150k_appeal_to_help_brave_Oscar_Hughes__nine/?ref=var_0

Staying positive

Been a tough couple of days for Oscar. The drugs to help with the relapse have made him very sleepy and pretty much bed-bound. Additionally we’ve seen a few more seizures which are very scary and also mean we’re by his side 24hrs. We have some brief moments where he’ll sit up, eat a few grapes. We’ve both also sneaked some cuddles in.

Our friends and family have continued to provide first class support and there was a meeting in our village night where 50 or so people met up to plan fund raising events.

Twitter has been growing in support for Oscar’s fund and we’ve had retweets from musicians, journalists, politicians, chefs, footballers, tennis stars and all sorts of people from around the world. At the moment, this site gets almost 1500 visits a day. All of that is a source of inspiration to keep being positive.

It goes without say to everyone who’s donated or is fundraising a BIG thank you from Oscar and us!

Ian and Marie

The roller coaster ride from hell

The last few weeks have been unbelievably tough and already it feels like the roller coaster ride from hell.

After hearing the diagnosis that Oscar had relapsed with leptomeningeal spread, our world was once again shattered. We were sent home from hospital that Saturday with the plan to meet with our oncologist the following week. We had a strangely normal and peaceful night with Oscar, and the following day we went out for Mother’s Day lunch with some family. Oscar had a lovely meal, although he was a little tired. We had promised him an electric scooter because he went through with his MRI the day before without a general anaesthetic – which after the troubles he went through during radiotherapy was nothing short of a miracle and a testament to Oscar’s strength and stubbornness!

Oscar and I left the family at the restaurant and went to Argos to look for the scooter. Upon leaving the store without the much wanted scooter (no stock!) Oscar mentioned his left hand was tingling – I immediately knew that something was up. I got straight on the phone to the hospital as Oscar started having the same stroke like symptoms as he did days earlier. The difference was this time it didn’t seem to stop. Ian rushed home and together we went to hospital.

Oscar didn’t improve at all that night and this was the first realisation of just what a precarious situation we were in. Weirdly, particularly considering the history of Oscar’s disease, this was the first time I let it cross my mind that we could lose him. That feeling didn’t subside as the doctors gave him strong doses of steroids, which they said would hopefully work within 24-48hrs, but somehow didn’t.

They doctors felt that although Oscar couldn’t move the left side of his body, he was strong enough to have an ommaya reservoir inserted into his brain so that intrathecal chemotherapy could commence. Ian and I felt (and continue to feel!) strongly that Oscar is a fighter and anything that can be done to help him fight needs to be done – yesterday! In his usual “I will do things when it suits me” time, it took 72 hours and by Thursday morning he was sat up in bed demanding Rice Crispies and playing PlayStation!

We had started chemo that Wednesday with Oscar very unresponsive, but from Thursday onwards he was wanting to know why on earth he had a scar on his head and how they had managed to do another brain op on him without him knowing. He also happily greeted his cousins from Denmark and UK. It is amazing to see what it does to our little man to see and be near his family and friends – sometimes works better than all the medication!

We took Oscar home that Friday, still on strong steroids and promising to return Mon/Tues for more chemo. This is now the regime – every three weeks Oscar has five days of chemo straight into his brain. From Wednesday onwards we started weaning Oscar off the steroids but found it was happening much too fast. And this is where we are now. Oscar has suffered two seizures in the last four days as we try and get the meds right. It is scary and painful for Oscar (and for us) to watch, but we will get it right.

We are encouraged to keep going as we see all the support we have around us from friends, family, colleagues, our children’s friends and friends of friends of friends. Even after this last seizure, there is hope….

Marie