Wednesday, 16 April 2014

"Your son doesn't do giving up"

Since 17th March Oscar has been going through hell, and so have we.  Up until that point he had had approximately 5 months of relative stability - minimal treatment, maximum fun, and his neuroblastoma had been held at bay.  Throughout that time he remained on morphine to manage the pain his disease caused him, but you would never have known.  He lived life to the full.  However, it has been our experience that neuroblastoma tends to pull the rug out from under your feet the moment you begin to count your chickens.  Such a cruel, ugly and despicable disease it is.  And the heartbreaking truth is that now, after 2 and a half long years of trying, it is finally beginning to win.

In the past 4 weeks Oscar has suffered more pain than we could have imagined, and more anguish than any 5 year old should ever know.  He would scream and cry in agony that simply could not be eased, while morphine, sedatives and anti-anxiety medications were pumped into him 24 hrs/day.  In the quiet times he said things like "I don't want to be a boy anymore", "I don't want to be me".  We were pushed to the limit of what any parent could tolerate in terms of watching their child suffer.  Oscar is now on an extremely high dose of diamorphine, more than nursing staff have known adult cancer patients to require, and thankfully those days are behind us.  It is a miracle that Oscar is awake, and functioning, but that is our wee Oscar all over.  I said to our wonderful consultant a couple of weeks ago "I don't think Oscar is going to give in to this diamorphine" to which he replied "Your son doesn't do giving up".

You must appreciate that, as always, we have explored every avenue possible to give Oscar every chance he could have to beat this monster.  With all options studied in depth and discussed through tears, we took the decision to move our family into the Children's Hospice.  Although this was an extremely difficult choice, it has been without doubt the best one for us as a family and in particular to meet the needs of Oscar and his little sister Izzie.  It is so important to us (and to Izzie) that she can be close to Oscar, and to us, which is just not possible in a hospital environment.  We still do not know what lies ahead, or how far ahead these questions might be answered.  We simply have to wait to see what move his neuroblastoma makes next.

If you didn't watch the BBC NI documentary on the Children's Hospice, you really should.
search for "True North S02E04 - Children's Hospice" on YouTube.com
We did, and were so impressed by the staff and services available, but it is nothing compared to the experience of actually being here.  The kindness and compassion shown to every person coming in through these doors is phenomenal.  The staff looking after Oscar on a daily basis are like angels, with hearts of gold.  Nothing is too much trouble, and nothing is impossible.  Oscar's every request is met with a smile!  Lovely home cooked food for every meal, endless cups of tea, fun and laughter and messy play at every opportunity.  Right now there is no place better we could be.  It is also such an eye opener to see how this invaluable sanctuary manages to operate on very limited funding.  Teams of volunteers are in place every day to keep everything ticking over, and donations seem to account for a lot of materials on site.

It must sometimes seem like we have made every aspect of our journey public knowledge, but this is far from the truth.  We were anxious to make sure that after we made the move to the Children's Hospice we would remain in control of what is known about Oscar, but any fears we had were unfounded.  It feels like a haven, our privacy is completely respected, and we have been given space and time to be a family.  Everything we could wish for at this time.  Oscar and Izzie absolutely love it here, they call it "The Holiday House", which means absolutely everything.

Once again, we are so grateful to everyone who has supported or helped us in any way.   Particularly the amazing teams in both the Children's Hospital and now the Children's Hospice.  Nothing can take our pain away but some people really make a difference.  From the bottom of our hearts, thank you.  Oscar and Izzie - you deserve our biggest thanks.  You are amazing people and we love you more than words can say xxxxx

106 comments:

  1. Awk that's lovely to know that you are all spending time as a family and not separated.keep fighting wee man. Thoughts and prayers with you and your family. XX

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  2. Our thoughts and prayers are with you all as always.

    The Broons & TCN.

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  3. You truly have an inspirational and courageous little boy,God bless you all

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  4. Thought's & Prayers are with the 4 of you every day ♡
    Nicky

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  5. Leona I'm in tears here.. Words fail me because as a mother I can't begin to know how this is for you yet can sympathize as if it were my child I would be the same.. Wishing u, Stephen, Izzy and your family all the love and strength in the World!! Keep strong and God bless.. Xxxx

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  6. God bless you wee man.xxx

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  7. God bless your beautiful boy and special family. XXX

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  8. Oscar glad to see you still fighting little man, won't be long untill you are up on your feeet again! Your such an inspriation to most people oscar ! Your family are giving it there all to have you out and about! Love You Little man!<3 From Nikita Conway

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  9. Thoughts and prayers are with your lovely , brave wee family at this time.x

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  10. Keep fighting ur a hero wee man we all love u xx

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  11. What an inspirational young boy, we attend childrens hospice with our son caelainn for respite and every word you said is true, we were one off the families who took part in the documentary, god bless you all xxx

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  12. God Bless you all at this time x x

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  13. Thank you for sharing. God bless your wee family xx

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  14. God Bless you wee Oscar, your such a wee fighter & I pray that you will keep fighting this horrible disease & win the fight. You & your family are in my thoughts always....Stay strong Oscar. Lots of love, hugs & kisses to you all xxx xxx xxx xxx

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  15. thoughts and prayers for a special wee man who has touched many a heart in northern Ireland and throughout the whole world. get well soon wee strong man and god bless to all of the family.xxx

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  16. Michelle McCaul16 April 2014 at 23:42

    Omg this has just broke my heart reading this u are such a strong family in my thoughts always xo

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  17. Thinking of you all each and every day, sending you all our love xxx

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  18. God bless you wee man. We all want to see you fight this <3 xx

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  19. As I keep saying its not over till the final whistles blows and oscar hasnt blew it keep fighting little man xx

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  20. Thoughts and prayers are with ye and that amazing little beautiful boy xx

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  21. Thoughts are with you's keep fighting wee man

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  22. i pray for oscar and i no he will do this keep going

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  23. Your an inspiration wee man. My little boy was diagnosed with nephroblastoma about 3 weeks ago, he's one year old and has been having chemotherapy. It's been tough recently but seeing you fight so hard really inspires us never to give up and stay strong. Thank you and God bless.

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  24. samantha mcateer17 April 2014 at 00:02

    keep fighting wee man god bless you

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  25. love to hear the hospice is being kind to you. i work for the hospice and truly love my job and hearing families say such kinds words is lovely x

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  26. yer son is an absolute inspirational wee man :) brave beyond doubt...my brother sean passed away at 38 years old 4 weeks ago from lung and brain cancer he was an avid supporter of oscar and followed his progress before he himself was diagnosed in nov last year :( he himself fought cancer with humour bravery and dignity and his only concern was the people he was leaving behind . it was awful watching my big brother deteriorate at such a young age he passed away on 14th march :( but for you as parents to watch yer 5 year old child go though it is inconceivable :( as long as he is not in pain and comfortable thats all u can all hope for my heart is breaking for u all he is a true wee fighter i wish u all the strength in the coming days/weeks/ months and years xoxoxo

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  27. you are simply a ture inspirational little boy to fight as hard as you have is amazing keep fighting we man much love sent your way always praying for you xx xx xx xx xx

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  28. A wonderful, strong & loving family xo

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  29. god bless wee man

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  30. Prayers and thoughts are with you oscar. Great to hear the hospice is so good. Keep fighting, and god bless you!

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  31. michelle griffin17 April 2014 at 00:21

    My heart goes out to you. As a parent of a little 6yr old boy & a 2 yr olddaughter myself, I cant even begin to imagine to journey you have all been through. I just hope that wherever the rest of your journey takes you now, that you can find peace, joy & tranquilty. Wishing you all immeasurable strength, God bless xxx

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  32. I can't begin to imagine what you all are going through, I had to make three attempts to read this because I couldn't see for tears. I'm completely amazed at the strength you show. My heart is broken for you all and especially Oscar, he's just a few months older than my grandson. Like you said, watching a child in pain is the worst thing any parent can imagine. I just wish I could scoop him up in my arms and make him all better. I'm praying he gets the miracle he needs and deserves. Keep on fighting wee man and I'll keep on praying for you and your family. God Bless

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  33. My heart breaks for use all god bless wee man big hugs x

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  34. Heartbreaking, I've been following Oscar's journey for some time and the courage this little bhoy has is immense, god bless you little man you are in my thoughts and prayers xxxx

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  35. You are such a strong little boy and you really don't give up keep on foghting Oscar. I am glad you are getting time as a family! Love to each and everyone of you xxxxxxx

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  36. We can never thank you enough for sharing The Big Mans fight against this disease your family have been an inspiration to us all

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  37. I was about to head to bed when i read this and my heart is filled with saddness for you all.But what an amazing little boy you have in Oscar. I pray for him each night and for little Izzie as well and yourselves.May god give yous the strength to get through each day and may Oscar not suffer anymore pain.It is lovely that there is such a place like the Childrens Hospice were they look after Oscar and other children with such love and care.And the children are happy there means so much. You both look after each other and stay strong. God Bless.xx

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  38. you are truly an inspirational family.. you've held it together throughout the good and bad times. Be strong and enjoy your time with Oscar and your wee family..xx

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  39. Leona your an inspirational mum reading your words the tears are running down my face the courage and strength your family and oscar are showing is amazing my thoughts and prayers are with you all xx

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  40. Oscar is such an inspirationally and brave wee character that we could all learn from. My thoughts and prayers go to you all x

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  41. i have followed your brave young boys story for a long time and i will continue to do so as he is a big inspiration on us all as people. As a parent myself i take my hat off to you and hope and pray for you all. May you all as a family get the strengh to make it through each day. #TeamOscar x

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  42. You are all in my thoughts and prayers. Keep fighting Oscar. Lots of hugs and kisses xx

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  43. "BLESSEED BE", Cincinnati, Ohio USA

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  44. Tears are tripping me here! And im a nurse working in an acute setting. But i want to just send a massive hug to the Knox family. Such a brave family and as a mum i can't comprehend it all. You are all in my prayers. xxx

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  45. God bless xxx

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  46. God bless you all. Oscar you are a wee angel.

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  47. Heartbreaking. So much respect for you two as parents and im sure parents in similar positions reading this will gain. Praying for oscar. Xoxo

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  48. Just heartbreaking. Cherish every moment together as a family, your son is an inspiration I just hope he isn't in too much pain. It breaks my heart to read this story, we all feel like we personally know Oscar as you have shared his story and updates. Every prayer helps and I pray for Oscar and his family every day. Xox

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  49. You are an amazing family who have touched the hearts of so many. We share your pain at this time and pray that Oscar can somehow beat this.
    #fearlessoscarknox

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  50. AS a mammy of 4 young boys I cant imagine what you are going through every parents nightmare , your family is an inspiration to many you have fought for your Brave little boy and gave him all you had , may you all enjoy this precious time together ...God Bless Wee Oscar you are a truly amazing wee boy ,keepstrong xo

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  51. I cant imagine the pain that all of u are going through i cant really see the screen for the tears .... u are an amazing inspiration to us all Oscar give it socks u are an amazing young boy and I wish u all well on this mad journey and hope that theres a light at the end for u all.

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  52. My thoughts and prayers are with you at this time. I am so pleased that you are enjopying the "Holiday House" as a family. Oscar is such an inspiration and a great role model to others, as you all are as a family. God Bless Irene (Smith ex Estates)

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  53. Prayers, love and hugs to you all!! I pray to the angels and to god for you all, to give you the strength you need. I've never met you but you all hold a place in not only my heart but the hearts of an nation! ♥♥

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  54. A poignant and touching blog as always.Oscar is such an incredible little boy and has moved me beyond what I ever imagined when I learnt of this wee courageous boy's battle.Even in the depths of despair it never ceases to amaze me at how selfless the entire Knox family is, always thinking of others and trying to make a difference in the fight against NB.Oscar is beyond a doubt an absolute inspiration as are the Knox family.No tears can heal your pain but just know that so many share it and your love for that wee special boy called Oscar Knox.Lots of love and hugs and admiration Noeleen Smith xxxx

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  55. Such an inspirational family. He really has shown the world how he can fight with every ounce he has and will continue to do so. I'm sure you are so proud of him. The world can be such a cruel place but all his suffering wont be in vain. Will be thinking of you all over the next while. God bless xxxxxxx

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  56. such an awesome little boy and a courageous family , thoughts and prayers are with youse all .

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  57. Keep strong wee man...such an inspiration!!! Thoughts and prayers are with u all xxxx

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  58. Such a brave, dignified and inspirational family. Hope wee Oscar's pain is eased. Thoughts and prayers xx

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  59. God bless u n ur family n may God give u the strength to cope with the tougher times ahead xxxx

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  60. God bless you all

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  61. my heart literally is breaking. ..I can't begin to imagine your agony. .
    may God bless you and give you the strength you need to cope.
    god bless you and wee Oscar.
    x

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  62. I firmly believe that the amount of prayer said for you all worldwide is making the difference , Keep praying for a MIRACLE people, Easter is the time of renewal, God continue to bless you all.

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  63. Im in tears. So hard for you as a family. You have searched all corners of the world and we have followed. Heartbreaking to hear this. He has fought so hard and so long. Keeping you all in my thoughts and prayers.

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  64. you are all an inspiration, the courage and love you have showed through this whole battle is unbelievable, much love and prayers for your amazing familyxx

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  65. Keep going, Oscar, you're a real star and inspiration to everyone, you're in our prayers every morning and night. God bless

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  66. Glad you can all be together.. Keep fighting wee Oscar you have got this far so dont give up wee man.. Such a brave little boy xxx

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  67. heart of a lion, dictionary should be changed word brave should read see oscar knox,WEE LEGEND,

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  68. My heart is breaking reading this, the pain you are all going through must be unbearable...Lots of love to Oscar and Izzie.

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  69. Use are allways in my prayers

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  70. Unbelievable . Serious strength in that little guy . Heartbreaking also . Thoughts with all of you . Keep it up and all the best wee man <3

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  71. Keep fearless Oscar

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  72. Francella Ferguson17 April 2014 at 18:25

    Such courage from little Oscar, thoughts and prayers with you all. keep strong xx

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  73. I find this hard to write with tears in my eyes, you are such a wee fighter, my thoughts and prayers are always with you God Bless to you and your family xxx <3

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  74. May your guardian angel guide you and walk with you all at this very difficult time ,Oscar you our a wonderful little chap and have been so brave a inspiration to everyone ,a true fighter lots of love xxxx

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  75. God bless you Oscar stay strong you're truely a wee fighter hail hail x

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  76. My heart is with you. Words cannot express the pain. I wish you all peace and healing in your hearts and sould. Oscar is the bravest man in the world.
    God bless you all!
    from Transylvania, Romania
    Marius Codrea

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  77. this special little boy is a wee fighter my heart is with you keep fighting wee man xx

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  78. Keep praying cus R God still does miracles 2day

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  79. God bless all of you xx

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  80. omg i never realised the pain the pet was suffering. How you all cope is beyond me. God Bless and strengthen you all. <3

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  81. Such a beautiful brave boy. Will pray for you all.

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  82. Christine Armstrong18 April 2014 at 00:28

    God, give the Knox family the strength to get through this. Amen.

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  83. You're very special Oscar and so is your family God bless you all

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  84. Oscar you are a little star. Your fight is an inspiration to everyone. May you be pain free sweetheart, you are amazing and your family is too. You're all sunbeams and whatever happens the sun will always shine for and with you. Bless you all.

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  85. Oscar.
    the biggest , toughest, craziest, hardest , man you ever met or ever could know.

    i mean what king of mental dude goes and throws snowballs at a boxing champions window.

    yes your a bhoy, but your a man .

    love to you, your sister and your mum and dad.

    saint stivs.

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  86. GOD BLESS THIS FAMILY, MAY GOD WATCH OVER YOUS ALL , KEEEP FIGHTING OSCAR, UR A HERO, BIG HUGS TO U AND UR FAMILY, WE ALL PRAYING FOR U , TEARS WERE BLINDING ME FROM READING UR UPDATE ABOVE,STAY STRONG TO ALL, OF YOUS, , BRAVE BOY , BIG CUDDLES TO U WEE MAN, UR IN ALL OUR HEARTS XXXXXXXXXXXXX

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  87. As a mum to a boy and girl similar in age to Oscar and izzy I can't begin to imagine what you are going through. ....im heading to the church today to light candles for Oscar and your family. I am keeping you in my thoughts and prayers and I am praying that wee oscar beats this monster. Love and thoughts Olivia xx

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  88. God bless you wee man and your family your a true inspiration to all wee love you very much stay strong wee angel and please keep fighting this horrible disease were all fighting with you and praying hard XX♡ XX ♡ XX

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  89. God bless you all. Your light has made us all stars Oscar. Such a special boy with the most wonderfully loving family xx Leona as a mother my heart aches for you xx

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  90. I'm so terribly sorry that all of you have to endure this--I read about Oscar in the Belfast telegraph. Please know that far across the ocean, in a small town in the western US, we are praying for you. What a gallant fighter Oscar is, what a huge spirit he has. God bless all of you.

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  91. I have a 4 year old boy and i really dont know how you are getting through this.your great Parents and i hope and pray the we man gets better.lots of love

    Sean og

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  92. God bless you all, and what amazing parents this little boy has. I hope and pray to god that Oscar gets better and that this nightmare finally ends for you all. Never give up xx

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  93. Horrible to hear that Oscar has to go through this pain again. It must be a horrible time for you all but I am praying for you and Oscar must be the bravest wee boy I have heard about. Keep strong and You'll Never Walk Alone

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  94. Oscar your a little fighter man ... Our or prayers and thoughts and everything are with you and your family .. You are such a brave boy Oscar an insperation to other fighters aswell you have touch the heart of so many people xxx stay strong wee man

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  95. Oscar sweet child you are always in my thoughts and my prayers and espically in my heart little man. I dont no you I wish I did wee dude u are truly an inspiration keep on fighting little man. Everyone is by your side every minute holding ur wee hand in our hearts I and everyone else loves you dearly xxx

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  96. Think of you often Oscar. Sending hugs to you all at Easter xxxxxxx

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  97. always thinking of you Oscar and family <3 xxx

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  98. Oscar is so lovely....... your hearts must be breaking. Life can be so unfair. You must feel so helpless when there is nothing more you can do to help your child..... I am lost for words. I am glad you are finding strength and solace in the Hospice. Love to you all.

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  99. Trying to hold back the tears while reading this. Oscar you are a brave fighter and inspiration to the world. You and your family are in my thoughts and prayers. Love to you all xxx

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  100. I hope your in heaven Oscar looking down on your family and with them forever. Yours has been a tough journey but an inspirational one. Everynight I kiss my children goodnight because sometimes it takes someone else to show you how lucky you are. Oscar look after your family and I hope you enjoyed your all too short life.
    Michael Scully

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  101. Rest in peace sweetheart xxx

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  102. Little Wings

    They say that little wings
    Can carry big loads
    Pushing air as they pass through cloud and cape.

    Carrying souls, yes.
    But also hopes and dreams
    Lifted skyward, onward, forward onto neverlands.

    We all have ours, don’t you?
    You will one day. We all will.
    Some come early, some late, all in the same direction.

    Some little boys go early.
    Go first, long before time.
    But these boys take direct routes when time chimes.

    Like Pan, they fly.
    Into infinite peace.
    Watching those home below, smiling down.

    Rapture awaits
    No pain, nor plan.
    Just joy and the wait for others to arrive.

    We all will, one day.
    Together again forever.

    Dedicated to Oscar and the Knox family.
    May 2014.

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