Thursday, 18 October 2012

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.







40 comments:

  1. What a wee champ. If all of us could be even half the person Oscar is, we would all be awesome.

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  2. Praying for wee oscar everyday and for you and the rest of the family. You are all so brave and such an inspiration. #teamoscar x

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  3. I can't put into words the admiration I have for you both as parents, for Izzy and most of all for Oscar. He's such an aazing wee boy. xx

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  4. Well Leona here goes my first Tweet, see what that little man of yours has me doing!!!!!I'm just totally smitten with him and can't remember what my thoughts were before that fateful day we walked into your room in Chop. Now he is the only thoughts our household has and is always our topic for discussion! My two girls are in Awe of him. Love you little man!!

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    1. Oscar is a household name, every day everyone i know talks about him, he is unbelievable, keep us talking wee man, keep fighting x

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  5. So emotional, thinking of you all often! Keep at it all of you, don't know how you do it, thoughts and well wishes always xxxxxx

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  6. Leona ur blog has totally changed my outlook in life... I love my sons so much but i guess i take them for granted. Ever since big uncle liam asked to buy an oscar band iv been totally blown away by his bravery. I know oscar will never give up and i think his "FANS" will never give up.

    Keep fighting oscar uve got a country behind you x

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  7. The Knox family are truly inspirational. Leona, such beautiful writing under such duress. It gives me faith in mankind again with the outpouring of support for you guys home and away. I can't imagine what you and Stephen and little Izzey are feeling but I don't have to tell you that Wee Oscar is surely the toughest wee man to ever come out of Ireland. I have no doubt he will win this battle and then get back to beating Neuroblastoma. Thoughts and prayers are with you all as you continue your fight. Love from Chicago.

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  8. Amazing boy, amazing sister, amazing parents, amazing medical team. Amazing inspiration to all. Best wishes, safe trip home and speedy recovery!

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  9. Alison Patrick18 October 2012 15:12

    I can't imagine the situation you have been put in during the last week, but I am glad you have all got through it together as a family and hope that Oscar is able to get home to the rest of his family as soon as possible. Many thanks to all the people of Philadelphia for their support, it's amazing how generous complete strangers can be in someone's hour of need. I only hope that I would do the same for someone who was in a similar situation.
    Hope you are all keeping your spirits up - keep fighting Oscar xxxx

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  10. I am so emotional afta readin this..i no its a happier post but still pulls at my heartstrings. I have a lil girl myself and i dnt think i cud ever b as strong in this situation its so inspiring n great to see so much support been offered n givin..i hope lil Oscar continues to improve. Sendin all my love n support, christina xxxx

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  11. No words to express how delighted my family and I are to hear that Oscar is improving day by day. This wee man has captured my heart, such a brave boy, he is truly an inspiration to everyone. There are no words to describe how brave and strong Oscar is. I have no doubt that Leona and Stephen are so proud of him and Izzy courageous kids. #keepthefaith #nevergiveup xx

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  12. Oscar, you really are just amazing, I read about you every day and I cry every day just thinking about you.I pray that you get better, that you wake one day with no more illness, you are an inspiration to us all, you strong beautiful little boy!So keep getting stronger, safe journey home back to northern Ireland.
    Always in my prayers Leona, Stephen, Izzie and especially you Oscar we will keep the candle burning for you always xxxx.

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  13. Oscar your a champion. I'm praying for you all every day. Keep the faith.

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  14. Well done little man you and your family are always in our thoughts and prayers stay safe and KEEP FIGHTING xxxx

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  15. Gemma Shaughnessy18 October 2012 17:58

    Leona, I am so thrilled for all of you! Your family really are an inspiration! Yourself, Stephen and Izzie. Oscar has touched everybodies hearts with his bravery and AMAZING personality. He is inspirational, such a fighter! He just keeps going! It's so great to see so many people supporting #TeamOscar and I hope more and more people hear about his fight! Oscar really is SUPERMAN! Izzie is beautiful too! Keep fighting Oscar! Fingers crossed my uncle gets more donations this week for your appeal before the dub maraton on the 29th! Thinking of you all, Gem xxxx

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  16. Oscar is an absolute inspiration to everyone! After reading his story,it has inspired me to make the most out of life.I cannot imagine what you's are going through but I am sending all of my prayers to oscar and his family! You must be extremely proud of him and he is the ultimate fighter.

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  17. Jeanne Fitzgerald18 October 2012 18:09

    I pray for you everyday. I love the Knox family! I live in Los Angeles, California and even here we know about Oscar and his brave fight. You are all wonderful people and you have changed lives by sharing your story. I am wrapping you all in a big warm virtual hug

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  18. You really are an amazing family I think we could all learn something from the Knox family. As for Oscar he really is an inspirational child. Hope things kepping improving. Leona I love reading you blog. I am a mum of 2 children aged 14 & 11 and I'm not sure I could cope if anything like that ever happened to them. They are both following Oscar & ask about him every day ! Thinking about you all xx

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  19. Thinking and praying for u all everyday... what a brave little boy and such brave parents. I have a little girl with few different medical conditions nothing compared to what we Oscar is going threw its takes u to read a story like this to realize how lucky we r in life. You as parents r doin a gr8 job and should be very proud parents. And as for Oscar what an inspiration to all keep fighting wee man hope u get home really soon x x x x

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  20. This boy deserves a hero's welcome when he gets home, what an inspiration to us all! Not just Oscar but his family for their unswaying faith in their son and overwhelming optimism. This really makes me reassess my priorities in life. Looking forward to getting you home wee man! xo

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  21. brings me to tears everytime I read your blog what an amazing brave little boy you have an your amazing parents you should be so proud of yourselves for all ur doing for your little man <3<3 xx

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  22. marian and aileen18 October 2012 18:55

    Leona although it was heartbreaking reading your blog that weekend it was also so inspiring and if possible we prayed harder than ever and your blog today shows it was worthwhile. My daughter and myself were privlaged to collect for Oscar in belfast and the photo today makes us so proud that in a very very small way we are part of team Oscar

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  23. This is the most amazing inspirational story I have ever followed. There should be a movie made and Oscar should be the story of his journey. How many people would be inspired by it? How many people would be comforted by it? How many people would be in awe of it? Keep going Oscar, let your journey continue with more chapters of love, inspiration, hope, and most of all a complete cure.

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  24. Well done Oscar we all praying for you keep up the good work .

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  25. I am overawed by the strength of ur little boy. His courage moves me to tears. He is truly blessed and the love of his parents is a lesson to all of us. Such strength, integrity and hope. I have two small boys aged 3 years & 18 months and cannot imagine what u have been through. U r a truly inspiring family. I will keep u in my prayers.xo

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  26. may the love of his family protect him forever ,may god and all the angels bless that brave couragious young man .. respect to you all

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  27. Leona I read your blog with delight that Oscar has fought back,he is an amazing young man and has fantastic parents and sister.i wish you all well and a safe journey home.god bless you all

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  28. I hold you all in huge regard. The wee man at the top. Legend. Doc

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  29. Totally overwhelmed by this aazing story of bravery, courage, determination, strength and hope. what an amazing family....little Oscar is one incredible little boy!! Im sure i speak for everyone following thi story and beyond, we are all prayer for you all and are 100% behind you on your journey, Oscar is defying the odds everytime an is a little miracle. Every so often in life we hear something that trully warms and captivates our hearts....and little oscars journey has don just that....one little boys fight for life....and the qualities he possesses is truly amazing!! i hope Oscar goes from strength to strength, it seems nothing is going to keep this little fighter down. stay strong, keep going, and know that we all are behind you, your a lesson to us all, on the amazing power of human spirit!!God bless an your all in my prayersxxxx

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  30. Delighted to read the most recent story ----I will continue to pray that his Guardian Angel will guide,guard and protect him and get you all home safely.God Bless you all xx

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  31. My prayers, my thoughts and my love goes to this beautiful little fighter. Safe travelling and speedy recovery to Oscar. He has proven his strength and strong will and so too have you, his fantastic parents and sister. God bless each and everyone of you xxx

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  32. truly an amazing little boy, my children & I are following his journey day by day, he has stolen our hearts & we are praying for him to get well soon. Oscar is an inspiration to us all, and as for his parents, words cant described the admiration I feel for them, plus wee lizzy too, ahh bless her, wee dote!!! The superman photo made our day :-) reading the blog was heartbreaking but amazing. God bless xxxx

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  33. Oscar-you are an amazing little boy!! I am so thrilled for you all that he has done so well.I check in several times a day to see how he is doing.Much love to you all

    Sian xx

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  34. Absolutely incredible!! I literally am close to tears everytime I read about or see a pic of Oscar which is quite a few times a day as the wee champ has taken over Facebook lol we R all praying R cotton socks off xxx

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  35. Moved to tears.....Oscar obviously gets his strength from his parents dont know how i would cope in this situation. Keep on fighting such an inspiration to all xxxx

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  36. I cry everytime I read this, or look at the photos of Oscars progress on facbook or twitter. I cry for joy that he is such a fighter and is determined to never give up. I hope some more luck comes his way very soon. To think about about the amount of people behind him is unbelievable. #keepfighting #TeamOscar

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  37. Soooooooo Glad to hear the good news. A wee CHAMP such a fighter go Oscar keep it up. We praying for you all. Dont know how you do it Leona the way you write the blog would make a stone cry.. Keep fighting Oscar. Love and best wishes to you all xxxx.

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  38. Wow Leona, I'm always blown away when you write. You guys are AWESOME ;0) you truly truly are. Oscar is so inspirational and his story really changes your outlook on life. I hope your all home safe and sound soon, Dee xx #TheKnoxFamilyAreMyHero's

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