Friday, 26 October 2012

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


20 comments:

  1. Leona, the emotional rawness with which you write always manages, at the very least, to put a lump in my throat and a tear in my eye. Wishing, hoping and praying for your beautiful son. Oscar and Izzie are two amazing children, brave and inspiring, the apple doesn't fall far from the tree. Wish you all the best and do not give up hope, Oscar has come too far.
    Love, prayers and positive thoughts xxx

    ReplyDelete
  2. god bless you all love psuline barry barry emma orlaigh little sophia xxxxx

    ReplyDelete
  3. keep writing your blogs and tellin everyone how your feeling, its helps people see what yous and your little boy and girl are going through, and it inspires everyone that has been touched by little oscars fight to get better, i dont know yous at all, and i can say for sure yous are truly amazing people and i like reading and seeing the pictures of how much a little boy can fight an illness as bad as his, being a parent to a 2.5 year old boy it touches my heart so much that its so easy how anyone can end up in your position, lifes cruel sometimes but you have to give it 100% and yous most definetly are, ours prayers and always for yous, keep fighting god bless, x

    ReplyDelete
  4. an amaing wee man and even more amazing parents.....true ,heartfelt emotions to make the rest ofus realise tht we should all be grateful and blessed for what we have......keep up the fight oscar, everyone is praying ....god bless you all xx

    ReplyDelete
  5. Wish I could give you all a big massive hug xox.The whole world is praying and fighting for you,he's such an amazing wee boy!!!You are a lovely wee family and soon you'll all be back home together.All our love,Anne.Love you, wee Oscar xoxoxoxoxox big hugs!

    ReplyDelete
  6. God will take care of you all and everyone is praying for you all especially Oscar

    ReplyDelete
  7. thinking of you little man stay strong and keep fighting the nasty C you are a true little star xxx and thinking of your amazing family xxxxx

    ReplyDelete
  8. One thing you definitely should be feeling is PRIDE - not only for raising such an exceptionally strong and instantly likeable child, but for all that you both have done, and are doing, for him. It's truly amazing, and an inspiration to everyone. God bless xo

    ReplyDelete
  9. Oscar is a beautiful child and is blessed to have outstanding parents and family. I live in the USA and follow your wee man daily and have friends and family praying for him also. Please know you have much love and support here also. God bless and give you strength. xxx

    ReplyDelete
  10. marian and aileen26 October 2012 at 15:40

    leona we know your not fishing for compliments or for anyone to tell you how wonderful you are but writing these blogs keeps everyone in touch with how you really feel and the raw emotion of it all. I would love to give you all a big hug Oscar and you three have made me realise more than anything how fragile life is. love hugs and prayers marian and aileen

    ReplyDelete
  11. one door closes and another will open. Oscar is such an inspiration he is a great wee man you have everyone's support and prayers. Its a great privileged to read about your journey and hopefully it helps you along the way. Keep the faith.x

    ReplyDelete
  12. I love to read your blog and admit that I cry each and every time. Keep strong and God bless you all.

    ReplyDelete
  13. Hi Leona i have been following Oscar's journey as we are going through a similar one, our son Joshua was diagnosed with ALL leukaemia aged 10 months in March 2011, he underwent 7 months of intensive chemo then a bone marrow transplant in Sept 2011, all was going ok until we were told josh had pulmonary hypertension, so i know the seriousness of this condition let alone when fighting cancer also, we were told Josh would probably not survive the weekend, he was put on increased oxygen and a drug called sidenafil (which is actually viagra) and over the next few months joshs heart got better and we were finally discharged on 16th of dec. All was going well until Jsoh relapsed in Feb this year, we were told nothing more could be done to save Josh as it was too soon after his 1st transplant and his leukaemai had come back bad, so we were sent home with Josh expected to last just weeks, he was put on holding chemo to try prolong his life but somehow this manged to put Josh back into remission, so he was able to get treatment now, the doctors told us they did not know how Josh would respond as he had been through so much the previous year and his heart was just back to normal, but here we are today after Josh having received another 6 months of chemo and his 2nd transplant on 4th of Oct he is doing well and so is his heart, Through our faith, determination and countless numbers of prayers our boy is still here today when he shouldnt be, Never ever give our hope, Keep the Faith x x x

    ReplyDelete
    Replies
    1. thats wonderful news. im sure you have felt like leona does today many times and seeing your reply will give hope. will pray for your all. xxx

      Delete
    2. sending wee Josh our love and prayers too...big big hugs wee Josh xoxoxox

      Delete
  14. hi guys love from pat pauline andSeán in Drogheda still with you all.

    ReplyDelete
  15. never think that by writing this blog that people feel you are digging for complements, the story of wee oscar is truly inspiration and it is an honour for us that you are allowing us all to follow your family and all the ups and downs that you face.

    wee oscar is a fighter however he clearly gets it from his mum and dad as you are all amazing. stay strong and it is truly a privilege to read your blog.

    ReplyDelete
  16. What a special boy. So brave, so exceptional, so loving, and precious. It was a true privilege to meet you all. Praying for miraculous healing, peace and rest for your souls on this journey. <3 Meridith, RN

    ReplyDelete
    Replies
    1. Thanks Meridith!
      It was lovely to meet you too!
      Thanks for looking after Oscar so well in Philly.
      Stephen

      Delete
  17. Your family's strength has led me to begin praying. I pray for Oscar every night. Your family is an inspiration to me to be strong, and to never give up. I hope if you ever make it to Philadelphia again I have a chance to meet you, I regret not hearing about this story until after you left town.

    ReplyDelete