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Oscar Knox Update – 31 October 2012

Oscar arrived back home in Belfast on 27 October after doctors in America discovered a condition which prevented him having crucial immunotherapy treatment. He is now continuing his recovery at Belfast Hospital.

The hospital bills in America and the cost of getting him home have used up all of the funds raised so far. Oscar’s stay in intensive care in Philadelphia is expected to cost around £400,000. The air ambulance, with its specialist crew and medical equipment, cost £42,000 for the flight back from America.

His family have vowed to continue fundraising to raise the money needed to get him further treatment as soon as he is well enough.

His parents will be assessing further treatments in the United States and Germany, to work out which one is best for Oscar. Each protocol has different qualifying criteria, so Oscar’s parents will need to talk to experts and Oscar’s own oncologist to find out which treatment will offer Oscar the best chance of beating neuroblastoma.

Oscar’s mum Leona said: “We’d like to thank everyone who has raised funds for Oscar, the team in Philadelphia and Neuroblastoma Alliance, who helped us get Oscar home, but we need to ask people to carry on fundraising to help us give Oscar the best chance of living a long and disease-free life.”

 Oscar Knox update 16 October 2012

Thanks to the kind support from people like you, Oscar travelled to America a week ago with the aim of beginning six months of specialist immunotherapy treatment.

However, when he was assessed at the Children’s Hospital of Philadelphia, doctors discovered that he had a serious and previously undetected heart problem. He is now in intensive care.

Doctors hope to stabilise wee Oscar until he is well enough to travel back to the UK. There are other clinical trials which could help Oscar and when they are back, the family will reassess future potential treatment options.

Oscar’s dad, Stephen, said he wants people to continue with their fundraising. His stay in intensive care and medical repatriation to the UK will be very costly. For example, we know that one day in intensive care will cost from $10,000 (£6,300).

"Any money that's raised for Oscar will be used to help him get better, and ultimately may go to any little kids who desperately need it. We are going to keep on fundraising and we will see how it goes."

Thank you for your continued support.

Oscar is fighting stage 4 neuroblastoma, an aggressive childhood cancer. Oscar needs immunotherapy treatment to help stimulate his immune system, so that Oscar's own body should be able to recognise and attack the neuroblastoma if it was to return. This is always a worry with this deadly disease, where the relapse rates are high. Oscar’s parents Stephen and Leona said, “Oscar is such a positive happy wee lad, he is always smiling and everyone who meets him falls in love with him. Despite what he is going though he always has a huge big smile on his face. The treatment abroad that Oscar needs costs as much as £250,000. We ask everyone to please do whatever they can to help give our son the chance of life, and ensure we get him the treatment he desperately needs.”

Oscar was born in September 2008, first child to Stephen and Leona Knox, a precious and much longed for son. Oscar now has a beautiful little sister Isobella, better known as Izzie, who was born in July 2010. The two children are very close companions and love playing together. Oscar loves Scooby Doo and Tree Fu Tom. They both love Peppa Pig, and one of their favourite games is chasing each other around the house, squealing with laughter at their own little version of hide and seek. Everything was perfect until September 2011, shortly after Oscar started at playgroup.  He was making new friends and having a great time, but suddenly everything changed. Oscar became tired, withdrawn and just not himself.  He would sit around on the sofa a lot more than usual.  He woke up most nights distressed and crying, and sometimes appeared to be in pain when he was picked up.

Just as Oscar’s parents were becoming quite concerned he suddenly stopped using his left arm altogether. He was taken to Accident and Emergency 10th October 2011, and after a series of tests doctors informed his parents that they suspected he had leukaemia. This was a terrible shock for Stephen and Leona.

Oscar’s family spent the following 6 weeks with Oscar in severe pain and going through test after test, each of which was inconclusive. Finally, on 24th November, Stephen and Leona received the devastating news that cancerous cells had been found in Oscar’s bone marrow, and the task was to now determine the type and source of that cancer. On 30th November, it was finally confirmed that Oscar had Stage 4 high risk neuroblastoma, which had spread right throughout his little body. 

Oscar immediately began 80 days of intense chemotherapy as part of a clinical trial. This treatment was extremely tough and he was very ill at times. It had great success in that it cleared most of the neuroblastoma, but Oscar needed to be taken off this trial in order to receive further specialist treatment in London. This meant that he was no longer eligible to receive a vital part of the clinical trial treatment, immunotherapy.  

This is a huge setback for Oscar, as this potentially life-saving treatment has shown demonstrable success in preventing relapse. Children with advanced stage neuroblastoma have a significantly decreased chance of being cured, even with intensive therapy. This is despite the fact that many patients reach the end of their treatment with no detectable disease. The immunotherapy treatment is needed to help stimulate Oscar’s immune system, so that Oscar's own body should be able to recognise and attack the neuroblastoma if it was to return. This is always a worry with this deadly disease, where the relapse rates are high.

At this moment in time, there are no treatment options in the UK which would give Oscar access to the immunotherapy that he desperately needs to give him the best chance of life. Parents have been waiting since March 2010 for a new immunotherapy trial to open that all UK children with neuroblastoma can take part in. However, they are still waiting.

All funds raised for the Oscar Knox Appeal will be used to cover his potentially life-saving immunotherapy treatment abroad and any associated costs. It would be amazing for Oscar if the long anticipated UK trial were to open very soon, and if Oscar was eligible to take part, but there is no guarantee that this will happen within the short time frame that he needs it. Should the UK trial open in time for Oscar to get the necessary treatment here, then all funds raised for him will be kept in his name and used for any future neuroblastoma treatment. Should there come a time when Oscar no longer needs these funds, they will be used to help other children like Oscar. Please donate what you can to help Oscar beat neuroblastoma for good.

Stephen and Leona said, “Oscar is such a positive happy wee lad, he is always smiling and everyone who meets him falls in love with him. We are so proud of him; he gives us so much inspiration and puts so much into perspective for other families. Despite what he is going though he always has a huge big smile on his face.

The treatment abroad that Oscar needs costs as much as £250,000. We ask everyone to please do whatever they can to help give our son the chance of life, and ensure we get him the treatment he desperately needs.”

Oscar’s friends and family aim to raise as much money as possible for the life-saving treatment. Please, do what you can to help save Oscar and other children like him.

Please follow Oscar on Twitter @Wee_Oscar - Oscar’s parents use Twitter as a source of support, and also as a way to promote good causes. It is updated daily on what Oscar is up to and how he is doing, especially throughout hospital treatments.

You can also read updates from Oscar's parents on his blog. This is a Mum and Dad’s view as their son fights for his life.