Saturday, 13 October 2012

It all goes wrong in Philadelphia...

People have commented a few times on my writing style in this blog, but I don't plan for it to be so emotive.  It's just my thoughts spilling out onto the screen, about what we are experiencing.  This post is gonna be a tough one, but is necessary to capture and explain these days when all our dreams turned to nightmares.

After 3 long hard months of fundraising with every ounce of determination we had in us, we made it to the magic number of £250,000.  That is a crazy amount of money - it took us 102 days to raise quarter of a million pounds. Unbelievable. The support for Oscar just seemed to snowball throughout that time, and we were truely overwhelmed by the effort made by everyone for our son. Family, friends, strangers - everyone rallied round and made it possible for Oscar to have the opportunity to get the potentially life saving treatment he needed.

We decided we wanted to go to the Children's Hospital of Philadelphia (CHOP), by all accounts it was the best place in the world to access this treatment, so that's what we aimed for.  There are cutting edge treatments and research studies going on here into this awful disease, and as you all know our quest has ALWAYS been to get Oscar the best treatment available.

It was confirmed on Monday 1st Oct by CHOP that we needed to be in Philadelphia that very week, to meet a cut off point for Oscar getting immunotherapy here.  We had 5 days to prepare to leave the country and our lives as we knew them behind, so that's what we did.  Emergency VISA appointments, discussions between hospitals across several time zones, gathering medical notes and medication, flu shots, dental appointments, career breaks.  Paying bills, confirming house and car insurances, booking flights, finding accommodation, specialist travel insurance...we did it all.

On top of all that Oscar was still completing his radiotherapy every morning.  Gary from McNeill Business Travel was fantastic and arranged all our flights, even securing escorts for us through from check in to boarding so we had help all the way and didn't need to queue.  We said our goodbyes and left on Saturday morning, so full of hopes and dreams and nerves about what lay ahead.

We travelled from Dublin to Philadelphia business class.  Oscar was very tired and run down after his 14 days of radiotherapy only ending on the Thursday, and we wanted to make this as easy as possible for him.  He was VERY tired throughout the flight, and for the couple of days after we arrived in Philly.  He didn't want to walk, and complained of a sore stomach.  We thought the journey had really taken its toll on him after just finishing that last block of treatment.  He was still playing and fighting with Izzie, using Skype to talk to everyone back home, just a poorer version of himself.

We went into CHOP for our first day of "pre-assessments" on Monday at 8.15am. Which was fine, as the kids were up at 4am!  They were cranky and tired and disagreeable, we felt it was gonna take them some time to adjust to their new surroundings.  Izzie was asking if she was going to Helen's (her childminder), Oscar wanted to go to his nannys house and for Nina and Mima (his aunties) to visit him.  It was a looonng day, but good - we talked about the treatment plan, looked around the facilities, and started apartment hunting online that evening.  We were all adjusting to the idea of life in Philadelphia.

We had more appointments in CHOP on Tuesday, but they started later.  We were having breakfast in our hotel, when one of the hotel workers came in to give us a message from the hospital, that the doctor wanted to see us earlier than planned.  We gathered our things up and went up to room to get ready to go out.  Oscar didn't want to walk back from breakfast, I carried him to the room.  There was a message on our phone that there was something they wanted to double check on Oscars heart, he needed a little bit of further investigation.  Hospital life is our norm, we thought very little of it, and headed in.

Oscar had a heart echo, and things quickly unfolded from there.  It's actually a bit of a blur to me.  We were told that Oscar had pulmonary hypertension, which is EXTREMELY rare, but likely to be a side effect from his chemo and stem cell treatment.  The blood vessels in his lungs have become very narrow, and his heart is working extremely hard to push his blood in through them.  There is a BNP blood test which measures the level of stress your heart is under, normal readings should be under 100, Oscar's was 2800, he was very ill and he needed to go to ICU.

SHOCK.  DISBELIEF.  HORROR.  ANGER.

This can't really be happening.  Do you know what we did to get him here, to make immunotherapy a reality, and you're telling me that chance is gone?  He needs this, we want it.  Neuroblastoma can't be allowed to win, we have fought so hard, OSCAR HAS FOUGHT SO HARD.  "As far as neuroblastoma is concerned, know that you have done everything you possibly could have for your son".  NO!  Don't tell me that, it's so final, and unfulfilling.  This isn't over.  It can't be.

Quickly immunotherapy was the last thing on our mind.  It was clear Oscar faced a whole new set of challenges and dangers right here and now.  He very quickly needed help with his breathing, his lungs were collapsing and his heart was failing. Can you believe that?  That is exactly how it happened.  On Tuesday night he was spiraling downhill, flecks of blood were spraying out as he coughed.  Then out of nowhere he threw up a huge volume of blood.  A basin-full.  Things were deteriorating fast, I was alone with him in ICU, Stephen back with Izzie in our hotel.   I kept asking if I should get Stephen down, they kept saying "not yet".  We got Oscar settled, but his breathing was poor and his heart racing.  He was moved from small volume oxygen help to large volume of forceful oxygen through CPAP mask, with the aim of forcing his airways open.

Wednesday was a very tough day.  Things were getting no better, perhaps a little worse - they prepared us for the absolute worst on Wednesday evening.  Oscar may need full breathing apparatus, a tube inserted, and he wasn't likely to survive that procedure.  The nurses got 10-12 syringes of medicine drawn up, adrenaline etc, incase he crashed.  We were given a room in the hospital that night so we were both on site.

You've gotta remember we're here alone, with Izzie, and we were trying to take care of her too.  I did something I swore I'd NEVER do in my life, I let her go to play with the play specialists on her own.  Complete strangers in a foreign country, but we had no choice.  She was asking a lot of questions and witnessing stuff no 2 year old should experience, we needed to focus on Oscar and she needed a break.  My sister booked a flight for Thursday to come and help, we really needed it.

Oscar had a decent night on Wednesday night, after all that we were prepared for. He surprised everyone the following morning, with a good improvement in how his lungs looked on x ray.  However since then things have continued to be up and down.  One step forward but two back each time, and we just don't know what is going to happen.  He has brief moments where he will give us a thumbs up, his courage moves me to tears every time.  We tell him not to be scared, he's getting better, everything is fine, but I only wish we could believe that too.  His heart function has slightly improved, but his lungs are letting him down.  The doctors think he has been just "getting on" with his pulmonary hypertension for some time, the little warrior that he is, and it was never detected.  They think he picked up a respiratory infection, maybe the flight didn't help, and it just pushed him over the edge.  That is the only explanation they can offer for how we arrived here with a relatively well child, and within a few days are watching him fight for his life.

This is more than a cruel blow.  From what we knew, Oscar was close to, perhaps even in remission, we were aiming to get him immunotherapy to give him the best chance of long term survival.  25% of kids with his genetic disorder, Jacobsen Syndrome, die before they are 2 years old.  He beat that.  Neuroblastoma raised its ugle head, he survived almost a year of the toughest treatment available, and he beat that.  Now he has pulmonary hypertension (which is so rare there is no confirmed treatment plan), coupled with a respiratory issue.  Oscar is tough, he's a fighter, but there is only so much a little body can take.  Selfishly, we need more time with him, we need him to keep fighting.  Love you Oscar, and couldn't be more proud of you and all you have achieved in your little life so far.  Keep fighting little man Xx.

110 comments:

  1. Keep strong, and Oscar keep on fighting. You're a trooper and your parents should be so proud of you. Prayers with you wee man x

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  2. My thoughts and prayers are with you all! Keep fighting little Oscar- you are an absolute inspiration to us all!you have a wonderful family who love you and care about you! Lots of love xxx

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  3. This is so heart breaking to hear how such a young boy has been through so much in such a short time. I hope everything works out for u and ur baby boy. In my thoughts and prayers xx

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  4. Thoughts and prayers with you and your family.Such a brave little fighter.

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  5. Thoughts love and prayers for you all . Team Oscar x

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  6. You are all in my thoughts and prayers. God bless xxx

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  7. OMG brave little lad
    Mummy's worst nightmare
    My thoughts &prayers are with you all tonight
    Lighting candles for you
    God Bless you all& Keep Oscar safe xxxx

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  8. Your blog is deeply moving. As somebody who only became a dad in the last year I can only imagine how devastating the last few days have been for you. It's probably little comfort but you really are inspirational. I hope your fortunes change and Oscar continues fighting hard. Peter

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  9. Leona keep the faith x we are praying for you all and Sascha says hello to wee Oscar. Nicky, Stephen and Sascha xxx

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  10. Hey Oscar, Our beautiful boy from Glengormley!!! Keep fighting Oscar... You have proved every doctor wrong in the past...and for everyone that knows you, will know you are such a brave little boy.. The whole of Glengormley is behind you, INFACT the whole of Northern Ireland is behind you... And every single person that is following you are so proud of you and your family.. A million hugs and kisses wee love.. I'm praying for you every night.. xxxxxxxx

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  11. Martina Miskelly13 October 2012 at 23:43

    Oscar you and your family are in our thoughts and prayers. Keep fighting wee man. You are a true inspiration. God Bless.xxx

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  12. As a parent reading this is tearing my heart out.The wee man is a fighter and could not ask for better parents. My thoughts are with you and Oscar 24/7. God bless you all.

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  13. He's in everyone's prayers. Keep fighting little guy xx

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  14. Thanks for sharing this heartbreaking blog...Oscar, no doubt gets his bravery from his inspiring parents & like u he will keep on fighting x U r all constantly in our thoughts & prayers xx

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  15. Oscar's story is so touching and emotional that I can't help but be moved by it. I'm not a parent but you are doing an amazing job getting Oscar's fight out there as well as inspiring us to support you all. Keep the faith and keep using this blog to help process your emotions - just remember we are all here supporting you every step of the way.

    Keep fighting Oscar, you are such a champ!xx

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  16. Oscar I pray to God almighty that He will keep you and your family safe and strong. My heart goes out to you all. You are such a beautiful family. Saint Padre Pio please intercede with our Lord God and ask him to spare this wonderful child. Amen

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  17. I can't find the right words just in awe of your strength and hoping for brighter days for you all ((((hugs))))

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  18. thoughts and prayers are with you! Everybody who has heard of Oscar's story has been so touched by it and it is important you know we are all behind you every step of the way!!!!!! Please God give this family, especially Oscar, the strength to continue on and fight as hard as he can! xxxx

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  19. come on wee man keep up that irish spirit and keep fighting thoughts and prayers to all the family xxxxx

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  20. What a brave little boy. My thoughts and prayers are with you Oscar. xx

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  21. Get well Oscar.... Prayers 2 u and ur Family

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  22. What a moving blog. Known about the deteriorating health of this young bhoy for a while after it was on the news. Never read this blog before until tonight but it's so heart breaking to read this. You can do it Oscar!

    In my thoughts wee oscar! x

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  23. Dear lord i cant imagine wat your all goin through all i can do is pray hard that a miricale will happen god bess you all xxxxx

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  24. Oscar keep up the fight wee man! Your in everyone prayers. You are an inspiration to the whole world! God bless your mum and dad.

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  25. Tears r tripping me as I read this, life is so unfair, oscar has had a very hard fight, I'm sure he is extremely tired and wondering when it's ever going to stop, i am a mother myself & can't imagine how u's r feeling & what u have conquered as a family... U r an inspiration to others & it's clear Oscar gets his strenght from yourselves.. Keep fighting we man we r all behind u & so proud of what u have overcome... Team Oscar !! Sending our love & praying hard 4 u all.. From Followers in
    Carrickfergus xxx

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  26. My little had pulmonary hypertension between Belfast n gos they gave her maximum treatment n were great with her ,,,, love and prayers for Oscar get well soon little man xxxxxx

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  27. Thoughts and Prayers are with you Oscar and all your family at this intense time. You are a little fighter. Lots of hugs and kisses for you from the whole world. Please God give this little boy the power and the strength to fight on, and let us all see his beautiful smile again, a smile that would melt your heart. God bless you Oscar.xxxxx

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  28. praying for you all, come on wee man fight this, the world is proud of you,




    from scotland

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  29. Oh god this has brought me to tears.
    You must be stronger than you think to battle this with Oscar I pray that your family and little Oscar has the strenght and courage to battle on.
    God bless.<3

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  30. You are all in my thoughts, keep fighting Oscar we are all behind you, I hope and pray everything will work out for you, your a little star xx

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  31. We pray that all the angels and saints will guide, guard and protect you and your family and get you all home safe.God Bless xx

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  32. praying for You all!!! go team Oscar!! so sad reading this, stay strong. I cant even begin to think what you are going through, nor can I even think what to say. I'll pray for you all. You are all in my thoughts and prayers xxx

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  33. Your faith and strength is unbelievable, our prayers are with you! Get well soon wee man xoxo

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  34. Truely touched by Oscars story, praying so hard that he will make a full recovery. As a parent myself i can only imagine what you both are going through.Stay strong and keep on fighting xx

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  35. So sorry to hear this news. Many people are praying for your family. Stay strong, Oscar and family.

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  36. Roisin Newtownabbey14 October 2012 at 01:14

    Keep battling little man, I said a prayer for you today and ask god to keep you in his care. Your fighting spirit is an inspiration to us all and your parents must be so proud of you. xoxo

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  37. Such a brave, wee soldier you are Oscar, please continue to fight, I pray each night for a real life miracle that somehow you will make a full recovery and have a normal life. You have been through so much and I am in no doubt you are exhausted, if love could help you through this wee man, you would be skipping around Mallusk now. I pray that you fight this, because you are a fighter, and that with each day you will start to improve!! Strength, love & light to your parents, I have no idea how they are coping & also trying so hard to keep things as normal as possible for Izzie. God knew how strong your Mummy & Daddy could be when he give them an angel in you. Keep going you little trooper, we want to see you home here in Newtownabbey. I will pray for you & your family every day & night, you are an inspiration & I am sure your parents are so proud of you! You little star!! To Mum, Dad & Izzie, Team Oscar are with you all the way, may God Bless your beautiful family, love to you all xx

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  38. Don't let this beat you show them your fighting Irish spirit Big Man and do it for your wonderful family you are an inspiration to us all you have the courage of a lion God Bless you and your family our prayers are with you 24/7 keep fighting.
    Monaghanboy

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  39. Keep fighting wee man... ur going to win because we r all behind U x x. give ur mum and dad Big hug tell they r the best and ur all in Our prayers x c x x

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  40. oscar you special angel i pray to god that you stay strong and keep up your brave fight. may the angels watch over you and those wonderful parents you have you are such a special little boy god bless you all xxx

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  41. Only God knows what wee Oscar and his family are going through right now. Keep fighting kid. You and your family have been so strong and this strength has been shown throughout the support that has grown and grown. You'll never walk alone...

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  42. My prayers and all the positive thoughts I can are heading to you Oscar. My two year old son was diagnosed with neuroblastoma in July this year and is being treated in Crumlin Hospital. I have been following your story through the Neuroblastoma Alliance and you are an amazing little boy with amazing parents and you deserve to beat this and have a beautiful life with your parents and little sister. I will keep you in my prayers Oscar NEGU xxxx

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  43. Pure awful breaking my heart cant imagine what yous are going thru baby Oscar is a trooper ! im 22 & would love a tiny bit of his strength, keeping yous in my prayers lighting candles for yous xxxxxxx

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  44. heart rending, I hope for the best for Oscar.

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  45. I have been following Oscar's story from the start, and this blog has brought me to tears. I was so upset tonight, I cancelled plans. My heart is truly broken. Oscar is the most precious boy, and he has stolen hearts from around the world. God, it's time to mend and heal Oscar's heart, lung, and body. Keep fighting sweet Oscar.

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  46. Oscar you have done amazing things before - just do them again! God bless you and all your family.
    Mark

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  47. Heart breaking....poor little man....hope he has the strenght to fight this too....he is in my prayers.......keep on fighting wee man you can do it xo

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  48. Oscar and your families strength is admirable!! Thoughts and prayers are with you all. Keep fighting wee man. X

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  49. Geraldine Fitzgerald14 October 2012 at 07:45

    Hang in there Leona and Stephen ur wee man Oscar is a wee fighter.
    He has made it this far and he is strong willed, i know he will keep on
    fighting, all r hope thoughts and prayers from all over r with u all
    at this time.
    Come on wee man we all know u can do, ur the champ of the world
    we love ya and r rooting for u.
    GO OSCAR
    XXXXX

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  50. Totally heart breaking. you have all been through so much. hang in there and please find the strength to keep fighting it. hope and courage is round the corner. you are all in our thoughts xx

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  51. Truly touched reading this, the thoughts of myself and my whole family are with you all. You are in our prayers wee man, keep fighting and you will win.

    X

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  52. Keep fighting Oscar! Know that so many are with you and Team Oscar! Love and hugs. Jenny and Andy

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  53. This is just so unfair...I really hope your gorgeous boy turns a corner soon.You are all in my thoughts.Keep fighting Oscar-you are such a BRAVE boy! Sian xx

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  54. I had to read your blog again this morning. I have 4 v young kids and it just pains my heart to read what you and your family are going through. Having faced a similarly seemingly hopeless scenario this time last year when all hope seemed to have gone, someone said to me that you have to believe that all will turn out ok because if we didn't believe what hope was there. I hope you can find the strength to overcome this massive hurdle - thoughts & prayers are with u all xx

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  55. God please put your arms around wee Oscar and make him well,bring him and his lovely wee family home xoxox Cmon wee Oscar,the whole world is praying for you xoxoxoxox

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  56. Thoughts are with ure family. Parents should be so proud of you Oscar AND THEMSELVES. You are doing a great job as Oscars parents. You really are doing everything possible. you all have been so strong.xxx

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  57. Keep strong for Oscar and all the family , we are all praying for him, he is a wee darlin xxx

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  58. Thoughts and prayers are with you all especially little Oscar xx

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  59. Thinking of u all at this difficult time.Oscar is a wee fighter & we r all cheering him on.He can beat this,we all believe in him.Big hugs & kisses 2 u all.Stay strong & stay positive.If anybody can do it, Oscar can X x x

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  60. We are all praying for you, the power of prayer is stronger than all treatment, keep fighting...keep hoping and most of all keep the faith. We love you wee man x

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  61. Such a brave family especially wee Oscar...its completely overwhelming, everything that has happened to you all in such a short time and how u have all dealt with it...you deserve so much more time together, a life time in fact. I will continue to think and pray for you at this very difficult time..if anyone can continue to fight, Oscar can xxx

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  62. My heart is breaking after reading your blog, thoughts and prayers are with oscar and your family xxx

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  63. It's very disstressing to read this. Kim is now clear but we thread the possibility of a relapse and situations you are going through. As a stranger I don't know what to say... our hearts go out to you. I learned that people, especially kids, are very resilient and keep fighting. Never give up, never let others give up. Kris

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  64. Keep strong Leona and Stephen, you know Oscar can beat this! He's not faltered before and he won't now. It must be so hard and even harder being away from home but this is just a blip, you'll be back in no time and Oscar will have that huge gorgeous smile back on his face again. Lots of love, Dee xxxx

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  65. Leona,as a mum reading this has broke my heart....It amazes me how strong you all are!!! I pray everynight for good news the next morning...I check in with Oscars Twitter...this mornings was heartbreaking to read.I send you all loads of love ...stay strong xx

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  66. I have been keeping up with your blog and the hearts of my family and I go out to you's. Young Oscar is so brave for such a young boy and you's are the best parents he could ever hoped for. I myself have studied natural health without the use of modern medicine for a long time now. For pulmonary hypertension I recommended this site http://www.earthclinic.com/CURES/pulmonary_hypertension.html. It has helped me and my family through many times when we were sick. Healthforce Truly Natural Vitamin C is the best natural form of vitamin C. You can find it here http://www.dvah.co.uk/index.php?route=product/product&product_id=1680 and natural l-lysine is here http://www.amazon.co.uk/gp/product/B000Z92AWC/ref=noref?ie=UTF8&psc=1&s=drugstore.

    To learn about natural remedies for all kinds of illnesses I go to naturalnews.com and mercola.com.

    Best wishes to you all.

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  67. You are right that there is no modern medicine cure for neuroblastoma but that doesn't mean there aren't other alternatives. I don't know if you are aware but there is website from a guy called Bobby who 10 year old son had stage 4 neuroblastoma and through natural treatment overcame it. I encourage you to go here and watch the videos of him talk about the amazing story at the cancer convention here. http://tv.naturalnews.com/v.asp?v=EE39503D2CB1E539432B2D229F72AC46. Bobby lives in UK and can be contacted via the number on his website. Please contact him I think he will be very helpful in this difficult time.

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  68. tears streaming down my face.... you have all been so wonderfully brave and strong. i have followed little oscar's story via friends' facebook pages for the last couple of months. sending all of you lots of love, hugs and as much posiive energy i can summon up.
    fight on little oscar - there are so many people with you in their thoughts.
    sarah in abu dhabi xox

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  69. Stay strong wee man we are all praying for you x

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  70. leona stephen its pauline here ,o m g your story regarding oscar has just broke my heart and im sure thousands of hearts also ,i wish there was something i could do for you both ,we here in our wee neighbourhood are all hoping praying for oscar to get better so you can get him back home were you all belong ,hopefully we will see you all soon prayers for you all love your neighbours pauline barry family xxxxx

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  71. Oscar what an amazing wee boy you are, you have overcome so much, you can keep on fighting!!. Praying so much for you and your amazing family xx

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  72. Caroline Griffin Strabane14 October 2012 at 13:30

    get better wee man....thoughts and prayers with you and your amazing family!

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  73. May God bless you all, you are all amazing.

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  74. I have never met you, but you are constantly in our hearts and prayers. My daughter, Tina Wallace, and her friends from Ulster Rugby ran for you last Sunday and money is still coming in. My prayer for you is that you will receive the Grace for each day and the kind of peace which passes all understanding. I am in awe of your courage and your closeness as a family. May God bless you and watch over you all. Your skills as a writer are amazing, especially under such stress.

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  75. absolutely devastated for you all, have u in my prayers and thoughts 24/7.

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  76. keep fighting wee man .. we are all praying for yous

    god bless yous all in our thoughts and prayers xxx

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  77. Every ounce of my body is feeling for you, padre pio will stay by your side. Stay determined and optimistic this will just be a hurdle, and hopefully soon you will look back lightly at it! X.

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  78. To all the Knox family, ur blog has brought me to tears, poor little Oscar, as if life wasnt hard enough on him, and now u all have to try to overcome this as well, ur son has stole the hearts of many, and is a truly amazing young man, as a mother myself my heart goes out to you both and your entire family... you are and will contuine to be in my thoughts and prayers, wishing little Oscar the health he truly deserves x

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  79. keep fighting you are a little giant of a guy!!

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  80. So sad and difficult to be far from home with a very ill child. Hoping everyone's thoughts and prayers will sustain you

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  81. So upset to hear that your son is so unwell, he's in my prayers - in fact, you all are. You're doing all you can as a family to get the right treatment and care for Oscar, keep strong, keep fighting the fight...x

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  82. To all of Oscars Family and friends, we the Clerkin Family are praying for you all at this time, as a mum of a cancer patient I can some-what understand what ur going through, my son was diagnosed when he was 11 with a rare form of cancer but thank God he is now in remission, the power of prayers and faith should not be under estimated, Archangel Michael please wrap your arms around Oscar, protect him and give him strength to pull through this, much love.xx

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  83. http://www.phassociation.uk.com/
    Hope this helps with questions and information for you all xxx

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  84. Love and prayers are with you all at this difficult time,we pray that god will give Oscar the strength he needs to fight this latest problem,Leona stay strong everyone is behind you all at this hard time.god bless you all.

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  85. Praying to GOD that he will heal little Oscar, keep fighting wee man everyone thinking of you. I think your the most amazing little boy I have ever read about and I'm very proud of the fight your putting up, So strong and an inspiration to us all. Come on Oscar you can do it!!! xx

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  86. This wee one hasnt left my head from.meeting him during his treatment i just pray everything is ok and he can fight such a cruel disease.... my thoughts are with you all x

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  87. my thoughts and prayers are for little Oscar and all his family may God bless you all

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  88. Thinking of you all at this difficult time ,Love and Prayers ,Keep fighting Oscar,you are a true inspiration

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  89. please take strength from everybody who reads your blog and all who have followed the story of brave Wee Oscar, people all over the world are praying for you, please please keep going and god bless you all

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  90. This is the WORST blog I have read to date......I have read them along but this is the most heart rendering yet. You can tell it has been written straight from the heart. This time last week everything was so rosey and bright and 1 week later look where we are now. My heart goes out to the whole family and also the Oscar team. Please God take care of this family and turn this situation around and make Oscar well again.Bless the hands of all the medical staff involved and give them the knowledge they need to work with this little star, keep everyone strong. God bless everyone xxxx

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  91. Have you ever heard of, or thought of Sodium DCA. Very effective and harmless treatment with success rate of 70 - 90 %. It has been used in children for decades for congenital lactic acidosis, and in 2007 was seen to work on cancer cells. Since then it has been through quite a few private clinical trials and is used by medicore cancer care centres in Canada.

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  92. Thinking of you all! In my thoughts and prayers, can't read this without breaking my heart crying! May your angels be by your side giving you all the strength you need to help you through!
    Ciara xx

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  93. Devastating, Stay strong Stephen & Leona, we all know Oscar will keep fighting, our thoughts and prayers are with you all. May God bless all of you.xxxx
    Sandra & Bill Baker and all the family.

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  94. God love you and bless you

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  95. Keep strong Oscar and family...praying for you all xxx

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  96. You seem a remarkable family, and Oscar such a special wee child. God bless you all x

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  97. Leona, Stephen, Oscar and Izzie. I cant keep you all out of my thoughts. You are in our prayers constantly. May God bless you all.

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  98. As a parent my heart is sore for you both and it broke my heart reading your last update on Oscar. I hope and pray with all my heart and soul that Oscar can come through this. Leona, Stephen and Izzie, take care and keep strong. Oscar, keep fighting you amazing little boy xx

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  99. Oscar, keep fighting wee man. You are all in my thoughts and prayers constantly. God Bless xx

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  100. Leona, Stephen and Izzie, such an emotional story, my thoughts are with you and I hope God gives little Oscar the strength to fight his way through this, he is such a brave little soldier, God bless you all xxx

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  101. Leona, I really don't know how you guys are staying so strong but you are, I'm a mess just reading about it. Keep on fighting all of you, keep strong, my thoughts and prayers are with you all.

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  102. Thinin of use all and i hope wee oscar pulls through this... god bless xx

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  103. still praying hard for our little friend we feel as if we know you personally and hope that you are soon home safely with mammy daddy and izzie Im sure your family here cant wait to see you again love and prayers marian and aileen

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  104. Praying for your little guy and your family. I saw your post on twitter. I have PH as well. I am sure you are doing research or have done some about pulmonary hypertension. CHOP is a really good hospital and your son is in good hands!
    I hope that they relayed to you though that pulmonary hypertension is usually diagnosed later rather than sooner, so if you didn't know the symptoms and to look out for it, you would miss it, like in your case and in a LOT more cases.
    If you have facebook, I hope you can connect with other parents that have children with PH. It is a wonderful support group, a place to vent and get advice all at the same time! And I believe that they are a few kids with PH that are seen at CHOP too, so maybe you could make a connection and meet with another PH parent!

    Keep fighting Oscar! You know have 3 RARE disease's! Wow, you are amazing! ♥

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