He did it!

He did it, Oscar did it!  He fought his way back from the brink, and is doing remarkably well.  Sorry for breaking so many hearts with that last post - it was raw emotion spilling onto that page.  Last Wednesday night we were told to prepare for the worst, and we did.  We made sure Izzie spent some time with Oscar, and we each said our private goodbyes.  It would be distasteful to talk about it any further than that, but it was surreal, and heart wrenching, to say the least.  We made those preparations over the weekend too, very bleak days.  The doctors here wanted a discussion with us about "when is enough enough?" - that was very traumatic.  When IS enough enough?  When do you give up on your child?  An IMPOSSIBLE scenario to comprehend, and one we NEVER want to face again.

We weren't being asked to turn off machines, but it was explained to us that the treatment Oscar was receiving wasn't working, and the next step was for them to insert a breathing tube, a traumatic procedure that he wasn't likely to survive.  Did we want to put him through that trauma, when it was likely to end in his death?  Or do nothing and let him slip away?  Arghhh.  I made a few frantic phonecalls home, and everyone said don't give up on him.  We certainly weren't giving up, but we actually felt like his little body had had enough this time, and we didn't want to have to agree to anything that would add to that pain.  After everything he has come through, the fight he has put up for his life, it was cruel for his fate to be placed directly in our hands.  We know how it must have seemed to those doctors - a critically ill child, with a rare genetic disorder, a rare cancer, and a rare heart and lung disease...that child doesn't have much of a chance.  But it's Oscar, and he beats the odds to achieve the impossible, and you can't give up on him.

Thank you Oscar.  Thank you for not letting us face that final decision, and for fighting as hard as you did. 

Oscar struggled on through Sunday, just about holding his own.  On Monday things showed a slight improvement, his heart was working a little better and his collapsed lung showed small signs of opening up.  On Tuesday all our wildest dreams came true, when the doctor came in and said "his chest x ray looks AWWWESOME" - words I will never ever forget.  Oscar was interacting with us, up out of bed, and wanting to play.  Incredible. 
Nurses said we could try him with clear liquids, within an hour he was nibbling grapes and pancakes.  We tweeted pictures of his progress throughout the day and everyone was astounded - most of all us.  We know he's a fighter, we've watched him battle his way through a year of neuroblastoma treatment you wouldn't wish on your worst enemy, but we just can't believe what he's accomplished this time.  Up out of bed, eating and playing, hours after spending almost a week critically ill.

I won't bore you with all the cliches, and words we often use to try to express our admiration of Oscar - you already know.  He is an incredible human being, and we are proud to be his parents.  He has taught us many life lessons, and although we wish so hard that we didn't have to learn them, we are better people for it.  Little Izzie is already showing some of the courage and strength of character we see in Oscar, and we are so proud of her.  Although we try to shield her from it, she has witnessed and experienced a lot of pain, tension and heartache throughout Oscar's illness, especially this period in Philadelphia.  She adapts to whatever situation she finds herself in, and never loses her playful nature.  An amazing little lady.

Throughout these worst days of our lives, we also experienced the best of human nature.  The incredible work being carried out in CHOP PICU on a daily basis is phenomenal.  The sickest of kids with the most complicated of medical conditions are treated here.  Every decision made by the medics is a "life or death" one.  They give it their all.  To work in that highly charged environment, and have such courage in your convictions, takes a very special person indeed.  The heartache they witness is almost unbearable.  We have witnessed 5 "code blue" episodes, where an alarm is activated because a child has effectively died.  The staff here instantly drop everything and RUN to attempt to save that life. 

CHOP is a "teaching hospital", and we have experienced the benefit in that.  On ward round every morning up to 15 people (each with their own speciality) gather to discuss Oscar's case and current situation, and invite us to join them.  Medics put forward their ideas, and the best way forward for Oscar is debated.  They are not afraid to "think outside the box", nor to face criticism.  The VDR machine (and the technique which was used) was only used once before Oscar.  This was an experimental process, and it saved his life.  The machine sends a high pressure shot of air in through the mask Oscar was wearing, and while it does that, it vibrates to encourage his airways to open up.  It sounded like a pneumatic drill.  The doctors said Oscar might struggle to cope with it - he wore that mask for 40 hours straight and barely complained once.

The spirit of the Irish community here in Philly also has to be seen to be believed.  The first people to reach out to us were 2 lovely ladies, Aisling and Fidelma.  They arrived at Oscar's room on Sunday, with a hamper of food from home, and a large bunch of helium balloons for Oscar.  They had been following his story on Facebook and Twitter, and felt the need to help in some way.  It was emotional for me, seeing those kind faces.  Since then, more and more lovely ladies and gentlemen have stopped by, offering us their homes, cars, money, mobile phones, food parcels, home cooked meals, presents for the kids, things for me and Stephen to pass the time.  It is an experience I will never forget, and if I ever see an opportunity to pass that kindness on to another family in distress, I'll be the first one on my feet to do it.  It adds to our sadness of leaving Philadelphia so soon, we think we would have really loved it here.

So what next for Oscar?  We don't know.  His future is very uncertain.   Immunotherapy in CHOP, which we had worked so hard for and pinned all our hopes on, is no longer an option.  His neuroblastoma treatment has been put on the back burner until his heart and lung condition is stabilised.  We will be flying home to either Belfast or Great Ormond Street Hospital in London via air ambulance as soon as all the necessary preparations are complete.  Meanwhile Oscar lives to fight another day, the 3 of us alongside him.  And we will never give up.