Home safe and well, but up to our eyes!

Hi everyone!

We're really sorry we havent updated the blog for such a long time, but its been an extremely busy time for us since getting home from Philadelphia and we've just kept putting it off.  We literally cant seem to find any free time these days with Oscar being in and out of hospital several times a week for blood tests/platelet transfusions etc, and trying to keep on top of all the normal daily stuff.  Hopefully most of you are able to keep up to date with Oscar via his twitter feed @Wee_Oscar as we normally give a quick update every day or two & attach a photo.  You dont need a twitter account to view posts just click here.  This is just a very brief update because i know Leona wants to sit down and write a proper update of everything thats gone on since the last post.

In summary, we managed to get Oscar home from Philadelphia by air ambulance but he spent about a month in hospital after we returned as his heart was under a lot of stress and he was (and still is) on oxygen 24/7 to help dilate his blood vessels.  He is steadily improving all the time and his heart is improving.  We've got him home now and he and Isobella are having a great time playing & fighting with each other- a good healthy relationship!!! :-)  He has to run around with a big oxygen hose trailing behind him but in typical Oscar fashion he acts like its totally normal.  It doesnt bother him at all.

Oscar's hair is also growing back really well now which he is really excited about.  He wants to spike it up like Tree Fu Tom!  The kids are really looking forward to Christmas, and so are we.  We honestly thought that last Christmas would be Oscar's last, but he's still here and we are very grateful for that.  Many kids with neuroblastoma dont make it this far.  We are waiting for Oscar's heart to improve a bit more before we start persuing further treatment options.  But the important thing is that immunotherapy is still a possibility.  We will continue to fundraise to ensure Oscar can get the best possible treatment when he needs it.  Thank you to everyone who has supported us through this difficult time and who continue to fundraise for Oscar.  We love you all!!!

Stephen

Feeling lost, and a little defeated...

We've been in Philadelphia almost 3 weeks now, and what a crazy 3 weeks that's been.  Experiencing extreme emotions like we have done in that time really takes its toll on you.

Oscar is continuing to improve, we were moved out of ICU on Wednesday night down to the Cardiac Care Unit.  It almost feels like one foot out the door of this hospital!  The plans for a medical transfer (air ambulance) back to Belfast are being put in place, and we hope that with Oscar's slow, steady improvement, the final "yes" from doctors here is not too far away.  However, as much as we are looking forward to getting home, and especially longing to see little Izzie, the "goodbye" to CHOP and Philadelphia is definitely a painful one.  The realisation that the door is closing on the hopes and dreams we came here to fulfill, that is hard.

We were probably naive, we truly believed we could "fix" Oscar here, and give him the "normal" life he so truly deserves.  We were told before we came that immunotherapy mightn't be a reality for Oscar - we never really believed that.  This is the place that would make him better, take his pain away.  Take our pain away.

It goes without saying, the elation we felt when Oscar recovered from being critically ill, that really can't be put into words.  But now new emotions are surfacing.  We feel out of control - we felt in control when we worked hard to raise that money and buy him his life back, we could do that.  We feel lost - we don't know where this is going, more than ever we don't know what the future holds.  And we feel defeated - we were cheated of our chance to make Oscar better, once and for all.  These statements may not be factually true, but they are absolutely what we feel.

Please don't think I'm digging (once again!) for complements, messages of support, inspiring statements.  I'm definitely not.  And I doubt they would work right now anyway.  But this blog is a TRUE diary of Oscar's journey, and I feel compelled to make a record of our (almost) despair at this time.

The other thing I must note is our never-ending quest to figure out what Oscar needs, and make it happen for him.  That has not changed.  Fundraising will continue, full steam ahead, to try to ensure money is not the issue which denies him a shot at life.  We are back to the drawing board, and very much looking forward to fully assessing our new position with Oscar's fantastic and very supportive consultant back home.  We need some time to pick ourselves up, dust ourselves down, and prepare for the next step.  Whatever it may be.  As always, in the rare times that we feel deflated, we look to Oscar for courage to keep fighting.  He gives it to us in abundance!  I looked at our "TeamOscar" mailbox yesterday, and couldn't believe the fundraising efforts of many of you are still flooding in.  That inspires our fight more than any words of support ever could.

Final word to Miss Izzie this time - don't ever think you were left behind in all of this craziness, you weren't, you aren't.  We miss you so much, and can't wait to kiss your little face and feel your big hugs again!  Oscar tells us he misses you EVERY DAY, and that he is sad that you are not here, sometimes crying.  I've said before that nights where the 4 of us are under the same roof are the happiest times, can't wait to have them again Xx

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.