Tuesday, 24 July 2012

This is TOUGH, but Oscar is TOUGHER!

Elmo, sent in by Oscar's cousins Chloe and Sophie
What a difference a weekend makes.  Oscar was still suffering quite a lot of discomfort on Friday, and just wasn't very happy.  When I returned on Sunday night things were much better!  He had spent the day watching golf with Daddy, and had been in much better form.  And yesterday was our best day in a looong time...  He was affectionate, interested in doing things, talking to people, and actually having fun!  I felt like all my Christmases had come at once, hearing his little voice, full of life again.  We still have a way to go before Oscar will be fully recovered, but we are well and truly on the right path now!  It would be a CRUEL CRUEL world if he suffered a setback now after battling through to get this far...
Favourite new game...fishing!

The aim now is to get Oscar off all his IV medications, and eating/drinking again.  One of his antibiotics stopped yesterday, another is to stop today.  He is still getting IV paracetamol as he needs it, but those times are getting further apart.  His morphine infusion was halved yesterday, and he didn't appear to be in much pain, so that's another big step forward.  His little mouth is still looking very sore, and I think it will be difficult to convince him to eat or drink again, he suffered so much pain with it over the past few weeks.  BUT another fantastic sign this morning - he started sucking his dodi in his sleep!!!  I know he is too old for it, and if we weren't in this situation he definitely wouldn't have one, but it provides him with so much comfort during the tough times of treatment there is no way I'm taking it off him.  He can have 1000 dodies if that's what it takes to get him through, even if the dentist does freak out at me!  Up until this morning he was holding it against his cheek and in his neck while he went to sleep... wee pet.

So onwards and upwards once again - Oscar just never ceases to amaze us, and the staff in hospital.  He is such a little battler, there is just no keeping him down.  This fighting spirit is what is getting him through, and why he deserves more than anything to win this battle hands down.  If you met him for the first time today you just would never imagine the hell he went through this past 2 weeks.  He's just an average fun loving 3 year old who seems a little bit poorly.  C'mon Oscar, keep going, you are our hero!  And it won't be long until you see your little Izzie again, she misses you so badly and has big hugs waiting for you xxx
Bathtime is fun!

It is a shame this has to be said, but to the person who upset my sister by cruelly saying "There's a reason these treatments aren't available on the NHS" - no, you're wrong.  There are several reasons.  In our case these include: 1. cost 2. drug availability 3. access to these scarce drugs.  The treatment Oscar needs was approved to begin within a clinical trial on the NHS in March 2010, but we're still waiting for that trial to open.  And we won't let Oscar down for these reasons, which is why we've taken it upon ourselves to raise the money to pay for this treatment elsewhere if the trial still hasn't opened here by the time he needs it (approx 6 weeks from now).

Our NHS isn't perfect, but lucky you, you haven't found that out in the most difficult way possible.  When it comes to resources, the NHS is by definition one for all and not all for one.  So don't go making such senseless, harmful and hurtful comments without knowing all the facts.  These are all in our appeal statement at JustGiving.com/OscarAppeal, but contact us directly and we will happily discuss it in detail with you.  People like you and comments like these only make us more fired up in our quest to do absolutely everything we can and more, to give our son the chance to have a shot at life he deserves.


  1. Lovely post. Well done to Oscar. He must have the strength (body & mind) of the bestest Super-Hero that ever existed.
    A credit to his parents and vice versa.

    Love and positive thoughts to you all.

  2. So glad that Oscar is doing better, he so deserves to be better. He's a sweet little boy and what a fighter. I am praying for him, donated, and will continue to support him from Florida.

  3. Well said Leona!!
    So glad to hear Oscar is gaining strength and things are looking up again. He truly is our hero and such and inspiration! And that goes to both you and Stephen too. We can't imagine your pain but we're all thinking about you and supporting you and hope that it helps just a little.
    Keep strong, lots of love, Dee
    Ps I love your bath time photo Oscar, looks lots of fun with those little ducks in there :0) xx

  4. Hey there,SO pleased to hear that Oscar is feeling more like his old self.He really is so brave and determined! I wish him all the very best-thats what you all deserve!
    Much love Sian xx

  5. Great to hear he's a bit better. He's a strong wee man. All our love and positive vibes

    The french McCrorys XXXXXXXXX

  6. Leona, I am so heartened to read how much Oscar has come on over the past few days. He is a wee superstar :) I am so sorry to hear about the comments that you and your family have had to unfairly listen to recently. Some people don't know how lucky they are that they will never need to face the surreal situation where they need to seek alternative non-NHS funded treatments. Until they find themselves in such a position, they shouldn't be saying such things, but instead, should be supporting you all every step of the way.
    Continued love and best wishes, Ailís xxx

  7. God bless Oscar, his family and the staff working hard to make him better. May you have love, light, hope and strength to see you through these impossibly difficult times. You are all in my prayers.

  8. Oscar Knox is a special child that everyone should have the opportunity to meet, I for one am very lucky to have done this. Not only is he a charming and funny little boy, he is a tower of great strength to anyone who is blessed bough to meet him. HIs mummy and daddy should be very proud not only of their wee man but also of themselves as they to are a constant inspiration to us all. I am for one very thankful to have met the Knox family. So in the words of a famous writer .. Where there is hope and belief anything is possible #teamoscar .. Keep them cheeky smiles up wee man

  9. I recently give up a few hours to do bag packing in asda for oscar was best choice have ever made wil contine to do al i can