Monday, 2 September 2013

Relapse Treatment Begins...

I spent ages writing a full diary of exactly what is going on right now, but you know what, it was just too depressing so I deleted it all. 

The good news is that little Izzie started playgroup today, she was beaming from ear to ear, singing and shouting "mummy I'm SO excited!" on our way down.  And although we are totally devastated that Oscar's little P1 desk remains empty right now, we were still delighted to see him walk (with help) round to his little classroom on haematology ward last Thursday.  Very proud parents on both fronts.

As far as treatment goes, Oscar is enduring TVD chemo as the first line of attack on his relapsed neuroblastoma.  This is an extremely tough combination of 3 different chemo drugs, and so Oscar is suffering extremely tough side effects.  Most of our time will be spent in hospital.  We don't even know if the treatment is working yet, we are searching for positive signs every day.  He is still suffering symptoms of his disease such as extreme pain, and his morphine requirements are increasing every few days.  His hair has already started to fall out, which is upsetting him.  We had it cut short last week to try to make this phase less traumatic.

Things are very tough and Oscar is suffering quite a lot right now, however in true #TeamOscar style we are doing our best to gather all our strength to follow our little boys lead.  Oscar - be brave little soldier and surprise us once more. 

Thanks for all your lovely messages and offers of help, even if we can't always reply or our thoughts are elsewhere, none go unnoticed xxx

Saturday, 17 August 2013


We have been absolutely inundated with messages of support for Oscar and our whole family in this past few days, which has helped us to get through the emotional hurdle of beginning treatment once more. It's important for us to draw strength from somewhere, so we can be the strong parents Oscar needs us to be and will him to fight to get better. I was (briefly) sad while Stephen was (briefly) angry, as we learned of negative comments being posted online about how we don't spend enough time focusing on Oscar, use our son's illness to seek attention, and take advantage of people's good nature... However we quickly realised that nothing can hurt us more than the words "new disease" we heard, despite how much love they were delivered to us with last week.

We don't feel the need to justify ourselves or our actions, but I do want to get this off my chest. We started this blog, and our Twitter page, initially to update family and friends about Oscar's progress. It must have been a fascinating insight into what incredible children like Oscar, dozens and dozens of them here in NI just like him, face as they battle cancer. Hundreds, then thousands, of people began to follow. We shared the highs and lows, and lots of powerful pictures, to tell his story. We are well aware than he is "not the only child in NI with cancer", we have become close friends with many of those other families who quietly deal with this heartache every minute of every day. It is not our place to tell their stories, we tell Oscar's story, and are as proud of him and everything he has achieved as any parent could be.

The desperate need to fundraise, which we have explained in minute detail throughout our campaign, forced us to use every avenue we could to raise £250,000. Of course we sought media attention and absolutely worked ourselves to the bone to make it all possible, how could we have done it any other way? If we could go back to those days when no one knew anything about us, or had never heard of "Wee Oscar", we'd do it in a heartbeat. "Normality" is all we've been seeking to achieve since day 1.

Thanks to the incredible and unimaginable love shown to us and Oscar in our hour of need, we now have a lump sum held in his name with the registered charity Neuroblastoma Children's Cancer Alliance. This will open doors to us in treatment centres around the world IF we can identify a suitable treatment (together with his medical team) for him. At this moment in time, Oscar will receive treatment at hospital in Belfast, and so we have no intentions of/need to fundraise for him. We are extremely grateful to every kind-hearted person who has stated their willingness to do this, it often brings tears to feel such generosity. NCCA are always fundraising for many families in despair like we were last summer, donations are always welcome and will help some poor child with neuroblastoma. Several families here are fundraising to help them with the financial stress a childhood cancer diagnosis places on a family, and the potential need for treatment abroad. The childrens haematology ward in Belfast (which provides Oscar's care) is always in need of some piece of equipment or extra help. NICFC and CLIC Sargent are another 2 local charities depending on donations to help many families like ours. There are ALWAYS children's cancer groups needing financial assistance, but right now we are not asking anyone for that for Oscar. Thank you - you have bought us the luxury of focusing on his care at this time by showing such incredible generosity last year.

Once again I have waffled on, trying to make sure I've made everything clear. The most important news of today is that Oscar was in slightly less pain, had his first dose of chemotherapy, and is fast asleep (and snoring!) beside me right now. We will keep you posted on his progress, please keep us in your prayers and positive thoughts.

Thursday, 15 August 2013

Devastating news...

Can't believe I'm sitting down to write this piece - I haven't even recorded all the good news and happy times we've had over this past few months....

We've had some terrible news - Oscar's cancer has returned, the disease is extensive, and it's spreading rapidly. We found out 6 days ago that he had relapsed after suddenly developing symptoms during our last few days in Scotland. We saw the full extent of it in the scans he had today. It's not good, we are totally heartbroken and very frightened about what lies ahead. Our little man is in excruciating pain, not eating or drinking, and finding it very difficult to walk. The priority right now is to relieve his pain with regular and increasing morphine, and to decide on and begin a treatment plan ASAP. We have some very difficult choices to make, but more importantly Oscar has ANOTHER incredibly tough battle on his hands. Please please send every positive thought you have our way, and support our brave wee Oscar as he fights for his life once more.

Stephen and I are shocked, scared, and overwhelmed by this news. We thank everyone for their incredible ongoing support, but need space and time to deal with everything. I'm sure this goes without saying, but we ask for no media requests.

Thanks guys, lets get #TeamOscar back on the rollercoaster, and tackle this beast as the main man has previously shown us how. We love you so much Oscar x