Monday, 30 July 2012

Izzie's 2nd Birthday!

Enjoying our only time together in months!
In other big news over the weekend - myself and Stephen escaped hospital on Friday to attend a good friend's wedding!  What a beautiful day and beautiful bride.  We had a fantastic time letting our hair down, and look forward to spending even more happy times with our friends in the future!  We also noticed the bridal party men all wearing #TeamOscar wristbands, and details of his appeal on the handmade chocolates and truffles after dinner.  Thanks to "the Docs" - we wish you only happy times in your future together!

We had sore heads on Saturday morning, but no time to rest.  Stephen headed off to the Cliftonville v Celtic friendly at Solitude to take part in the Oscar Knox Appeal collection.  This raised another £800, thanks to the generous donations of football fans there!  I had to organise a last minute birthday party for our precious little Izzie, who turned 2 on Saturday. 

Izzie LOVES her birthday card that Oscar made her
We found out on Friday that she would be allowed in for a small party with Oscar, even though he is still in isolation, so that was a huge deal for us all.  They haven't seen each other in 4 weeks, and are both regularly crying to see each other, so we were thrilled that they could spend some time together.

I want to feed the baby!!!
We had celebrated Izzie's birthday before Oscar went into hospital to begin this high dose chemo phase, as no one knew how ill he may be by now, or indeed what the outcome of this treatment might be as it is so tough.  However our little hero is well on the way to recovery, bouncing back as usual and defying expectations.  He was a little overwhelmed to see Izzie, quite a lot of tears flowed, but they kissed and hugged and managed to play together for a bit.  They even managed to have a little row over toys - just how things should be! 

Oscar gave Izzie a new "pink baby" (her favourite) and a little engraved necklace, while Izzie gave Oscar a small Thomas the Tank Engine megablocks set.  There were balloons, and bubbles, and a Peppa Pig cake.  We ended the day by lying both kids down on pillows, putting on Cbeebies, and having tea and cake ourselves.  Perfect.

Birthday kisses

Sports stars support #TeamOscar!

I'm sitting across the room from Oscar writing this, and he looks fantastic.  He looks more and more like himself every day, and his fun nature is returning.  He wants to talk, play, watch DVDs, but most of all he wants to go home!  He tells us several times a day that he wants to go outside, wants to go home, wants to visit people, and wants to see his little sister Izzie.  He is lonely and fed up being stuck in this hospital room, and who can blame him!  4 weeks today since he was admitted, and he has been completely isolated and connected to several machines since that day.  Not what any 3 year old should be doing over the summer months...

With writing about the hell Oscar and ourselves endured over this past few weeks, we haven't even told you about all the positive publicity and support Oscar has had recently from famous sports stars!  It seems everyone wants to join #TeamOscar!

The Cuban Olympic boxing squad were here to train a couple of weeks ago, and showed their support for Oscar by wearing t-shirts and displaying his appeal banner after a training session in Glengormley.  We wish them all the best during the London Olympics 2012!
Julio César la Cruz Peraza light heavyweight
Erislandy Savón Cotilla super heavyweight (on left)
Cuban Olympic boxing squad display Oscar's banner

Saturday 21st July was a huge sporting day for #TeamOscar...
In the Kerry v Tyrone All Ireland GAA football Senior Championship, the entire Tyrone squad wore #TeamOscar wristbands!  This was fantastic to see, as Oscar's mum (me!) is from Tyrone, and it means so much to have such great home support.  The legendary Mickey Harte has been a great supporter of our cause, and was also wearing his #TeamOscar wristband.  A few Tyrone players (inc Philip Jordan) are joining us during our #TeamOscar Abseil Event in September, down the Europa Hotel!
On the same day, in the Tipperary vs. Antrim All Ireland GAA football Senior Championship, a few of the Antrim lads were also spotted wearing #TeamOscar wristbands.  They have also signed an Antrim shirt for Oscar!
Ray Ginley & co  Emerald Roadhouse
Then on that evening, Belfast boxer Ray Ginley wore our appeal t-shirt and wristband prior to and after his victory over Jody Meikle in the Emerald Roadhouse.  There was also an appeal banner on display at this event, which Ray Ginley and the other boxers held at the weigh in.

Cliftonville collection raises £800
On Saturday 28th July, Cliftonville hosted Celtic in a friendly at Solitude.  The entire Cliftonville team wore #TeamOscar wristbands, and there was a bucket collection for Oscar's appeal!  This raised almost £800 - a massive thanks to the club, and all fans there who donated.  Oscar had been asked to be mascot at this game, but unfortunately he was not well enough to take part.  We're hoping he will make many public appearances once he is back on his feet and able to enjoy such events again!

Dancing on Ice winning professional Maria Filippov, who is currently at the Odyssey Arena offering skating lessons, contacted us to invite Oscar down for a personal coaching session!  Again, he is not yet well enough to take up this fantastic offer, but hopefully one day very soon!  Maria is now wearing her #TeamOscar wristband with pride!

Today there is a brilliant write-up in the Daily Mirror, showing Celtic and Wales midfielder Joe Ledley sporting his #TeamOscar wristband.  While we were in London for Oscar's specialist MIBG therapy in May, Joe invited Oscar's daddy out to have a drink!  See

Celtic and Wales hero Joe Ledley
There have been lots of requests for wristbands from other high profile sports stars recently, but we won't mention those just yet.  Keep your eyes peeled for #TeamOscar wristbands appearing in many more sporting venues!  Lets hope all our celebrity #TeamOscar members can help us get to our appeal target VERY soon!

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!

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, 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.

Friday, 20 July 2012

The Big Brother House from Hell

That's where we live right now.  I need to clarify - this is absolutely NO reflection on the care Oscar gets, or the friendships with staff/other families we have forged in hospital.  We've been talking to a new family on our ward, who are trying to adjust to the awful situation they have found themselves in.  When the Dad said one morning "it's just another day in the big brother house from hell" it really struck a chord.  Living in one small room, unable to escape, no privacy, nurses/doctors/other staff walking in and out of our room without notice day and night... It's an intense environment. 

Playing your life out for weeks on end under the constant scrutiny of other people is tough.  That's before you throw in the fact that Oscar is suffering terribly and needing 24/7 care.   I'm suffering from cabin fever pretty badly right now, and it's only been 3 weeks.  And WHO AM I to even think about complaining, when Oscar is going through such absolute hell.  But we long for a Friday night like we used to have - finishing a long week at work, kids in bed for 8pm, Indian take-away and a bottle of wine.  Perfect.

But back to the real world and back to Oscar - the past few days have been very up and down.  Tuesday was a great day, we really thought we had turned that corner good and proper.  Oscar's favourite visitor - the magician - called in, and had our wee man sitting up, doing magic, and giggling!  We LOVE the magician, he's a GREAT guy.  Can't wait to hire him for a party at home!

Making a picture for Daddy
Wednesday morning was also good for Oscar, he was in great form, giving me hugs and talking!  We had a visit from the aquarium which was fantastic, Oscar saw a sea urchin, shark eggs, scallops and a tiny crab.  He was so eager to "fish", he jumped up and was lifting the creatures out of the tank with a small net.  I didn't get any pics as I was struggling to hold him up to get fishing!  However things went downhill Wednesday afternoon, he was very agitated and annoyed, showing a lot of frustration.  We just couldn't settle him at all.  This continued through the night, he barely slept and neither did I.

Thursday was another total nightmare - he happily listened to stories from the "cat lady" who visited our ward, but apart from that Oscar had a terrible day, me too.  He was so aggressive, I was struggling to pin him down for the nurses to administer medication, put up his IV infusions, check his obs - and there is an awful lot of that going on 24 hours/day.   It's difficult to keep calm and be patient, as well as stay upbeat in order to keep Oscar's spirits up, when you are just as frustrated by the whole thing as he is.  But we try our best, aiming to soldier on through it like our little warrior does.  The doctors suggested Oscar's morphine could be to blame for his temper and mood swings, but were reluctant to turn it down as it's obvious he still needs serious pain relief for the condition he is in.  He was being SO demanding, and I have to try to decipher what the various moans and groans mean - if I don't understand or don't act quickly enough then I have to deal with tears and aggressive tantrums... it is very exhausting.

Today has been a fairly good day so far - we managed a decent sleep last night, apart from the 4 hourly checks and in-between medications and IV pump alarms.  The doctors have reduced his background morphine slightly, and Oscar's mood has definitely been better today.  After being grumpy this morning, he ended up out of bed playing in a big bowl of water and washing his toes using syringes.  He loves soaking the nurses, especially squirting them when he thinks they are not looking!  He wanted up to dance with me, which makes me so happy - when he is well we dance to the theme tunes of his favourite tv shows!  He also spent ages playing with Valerie, taking pictures with her phone and searching through it for games - much more like the real Oscar than we have seen in a long time.  He is exhausted now, lying in bed watching tv all afternoon, but it is great to see him lying down because he has tired himself out, rather than simply because he is so ill!

His bloods are also improving slowly, which is a sign that his stem cells are finally at work.  White blood cell count was 0.1 yesterday and 0.3 today - we need these to rise significantly as they are what fight off infection, when they are so low even the "friendly" bacteria in his own gut is a threat to him!  But things are definitely starting to look up, and with every day that passes we are seeing small but positive signs that Oscar is on the road to recovery.  Keep fighting little man - you are amazing, and we're right here with you every step of the way!  Xx

Monday, 16 July 2012

Stem Cells and the Dreaded High Dose Aftermath

We knew it was going to be bad, but had to wait until it happened to know just HOW bad. And we certainly know now. Oscar is suffering terribly - I actually want to spare you some of the more gruesome details, you just shouldn't hear about kids experiencing stuff like this. It is still all within the limits of "normal" side effects for this type of treatment, which is the one thing we have to be thankful for, but it is difficult to be thankful for anything looking at the distress our poor wee man is in these days.  You can see his deterioration in the pictures that follow...

Frozen stem cells emerge from the container
Oscar receiving stem cell infusion
Oscar received his stem cells on Monday 9th July afternoon, and was sick that evening. Up until this he had been well, really well, full of fun and cheeky smiles.  Here he is doing the very important job of punching holes in paper for Valerie...
"Mummy, I'm busy!" - when I tried to take this photo of him (Monday 9th AM)
He received more stem cells on Tuesday morning, and got just a little bit sicker...
Tuesday 10th July
Thursday 12th July
When we got up on Wednesday morning Oscar was like a completely different boy. Feeling very poorly, lying around, not talking or eating. He was getting codeine for his pain, paracetamol for his temperatures, anti-sickness medications, several antibiotics and TPN (nutrition straight into his bloodstream). Things went downhill until Friday, we had to move from codeine to oral morphine for the pain he was in. You probably all know that chemo kills "fast dividing cells" which targets the cancer, but other fast dividing cells include your hair follicles, skin, and inside of your mouth and tongue right down through your digestive tract to your bottom. So the inside of Oscar's mouth has broken down, it is red raw, which goes right the way down through his stomach to his bottom. His stomach is swollen with gas and mucous, and he is having awful cramps, diarhoea and vomiting. 
Saturday 14th July
Things hit a new low on Saturday - we had been removing the mucous etc from his stomach using a syringe attached to his feeding tube (which was bad enough) - but this turned to pure blood. He has mucositis, which is "the painful inflammation and ulceration of the mucous membranes lining the digestive tract, usually as an adverse effect of chemotherapy". He is drooling - thick mucous - which can only be compared to egg white. His insides are so raw and broken down that they are bleeding, and we are having to remove this blood from his stomach, while still administering liver medication on its own straight in. I just cannot imagine the state of his little insides, never mind the PAIN our poor Oscar is experiencing. He spent most of Saturday crying and staring at us with big wide frightened eyes - HORRENDOUS. Sunday was more of the same - a total nightmare.

Monday 16th July
Today (Monday) we moved from oral morphine to a continuous slow infusion of morphine, 24 hrs/day. I really hoped this would be the end of the significant pain, but I don't think we are quite there yet. He still seems uncomfortable, and his sleep is very restless. He seems agitated and is whimpering. He is starting to look quite swollen, with all the fluid he is retaining.  Stephen and I discuss the possibility of this being the worst day over, at the end of every day. We hope each morning that we get up that we see signs of him turning that corner. So come on stem cells, do your job and make tomorrow that day!

High Dose Chemotherapy

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The Oscar Knox Appeal has an amazing start

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The AMAZING Merkel Crew

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