Sun is shining, Oscar is sweet!

So much has happened since the last post, so excuse me while I ramble on a bit...

Oscars radiation levels EVENTUALLY dropped low enough that he could leave hospital on Monday and come stay with us at Paul's House.  This meant seeing his little sister Izzie again!!!!  They are really close and he was missing her so much so this was a really big deal.  Mummy left hospital with Oscar, and I left the house with Izzie so we could meet half way.  Once we were in sight of each other i let Izzie out of her buggy, and Leona did the same with Oscar.  They screamed each others names & ran at each other as fast as they could with arms out for a big hug!  It was like something out of a movie, very touching to see!!! :-)  Once they had said their hellos we went to the nearby 'Oscars' Bar & Restaurant (as pictured in previous blog post) for lunch and everyone had a great time.

Kisses for the camera!

Oscar has been eating really well again this week, which is great to see.  We were getting concerned with him losing weight but he has been eating McDonalds happy meals for lunch and dinner all week so there's no danger of him losing any more.

Nom nom nom!

The kids only had Monday and Tuesday together as Oscar was due his second dose of radioactive MIBG on Wednesday, so we did lots of fun stuff together.  On Monday night we went to nearby Prezzo for pizza- Oscar and Daddy's favourite!!!...

Pizza & Perroni.  Hard to beat!

Chilling in bed next morning, watching CBeebies

We then got them both packed up and into the buggy to take Oscar to Hamleys.  Izzie has been there 3 or 4 times so far and has a mental time running around playing with all the dollys, shouting WOWWW at everything and getting free sparkly tattoos, so she was very keen to show him around...

He was so excited when he seen the vast quantity of toys he nearly had a panic attack!!!  The two of them were just running around pulling things off shelves faster than we could put them back and generally making a big mess.  Sorry about that Hamleys!  Definitely not going back though.  Ever.  Its just too mental and trying to keep two young kids under control in there is impossible.

Then, on Wednesday, it was back into hospital for MIBG radiation therapy round 2.  The odd looking nuclear medicine team arrived again in their long white coats and latex gloves, wheeling their chemistry apparatus through the door.  This is the guy taking charge of the infusion which injects radioactive Iodine I-131 directly into Oscars bloodstream.

Once the stuff was administered everyone basically had to run out the door as the radiation levels coming off him are so high.  It is a very weird experience!  Here is your little boy who you just want to give a big hug to, but the radiation is flying out of him and you have to keep out of the room as much as possible.  We can only really go in to help him go to the toilet or to put a DVD on to try and keep him occupied for a while- and even then its in and out as fast as you can to keep your exposure to a minimum.  He has been such a little warrior through this whole experience, it is just impossible to put it into words.  Well done Oscar you little legend!!!!

In much more exciting news, me and Izzie spent Saturday hanging out in Covent Garden.  We had a great time wandering around in the sun, sitting down for lunch, and watching stupid street entertainers do stupid stuff for money.  Those people really need to talk less and perform more!!!

Then, later on, we had the pleasure of meeting up with Celtic midfielder Joe Ledley who was in London for the weekend.  Much to my surprise, he very kindly took me up on my 'tweeted' offer to buy him a pint- even though he paid for the drinks in the end!  Cheers Joe, and keep banging them goals in!! ;-)

Oscar's radiation levels will hopefully be low enough to allow him to travel home on Tuesday or Wednesday this week, but he wont be allowed near children or pregnant women for a while so he cant travel with Izzie.  Fortunately uncle Barry is over with us this weekend so he is going to take her home tomorrow.  She will live with her Granny Knox for a while until its safe for her to return home.  Dont tell Granny but that might not be for a week or so!

In summary, all is going very well over in London.  Much better than we could possibly have imagined.  Oscar is such a little star and just gets on with it.  A truly amazing, inspirational little boy!

Spaghetti hoops for breakfast

Blood transfusion on Tuesday before MIBG can go ahead

Oscar on the mend

In the last post, I talked about how Oscar was quite unwell, was being sick and had REALLLLY bad diarrhoea!!!  He hadnt really eaten in days and we were becoming quite concerned.  Well, next morning he was in much better form and was looking for breakfast.  He had a bowl of rice crispies, then got dressed to go out in his brand new Scooby-Doo outfit!

 By the time we got ourselves sorted out it was nearly lunch time.  So we headed to the pub!!! (you know when he's out with his da!).  He quickly found himself a nice seat at the bar and ordered himself some juice.

He got a plate of sausages egg, beans & chips, and stole daddys side of coleslaw when it arrived.  He done really well, eating more than I expected given he had been ill for so long.

We then went for a big walk around Regents Park where he done lots of running around.

On our way back from the park he was asking for McDonalds so he got a large chip which he polished off with the help of some barbeque sauce!  Then a bit later he wanted a cheeseburger happy meal so he got one of those (healthy eating goes out the window here, its all about packing in calories to try and stop his weight loss).

Next morning (Saturday) he had two bowls of cereal before meeting up with both mummy and daddy for brunch in a nearby cafe.  Big thanks to aunty Martina who was down visiting from Manchester- she was looking after Izzie back at the house.  He done quite well on Saturday but today, Sunday, he upped his game.  He got up and had a bowl of rice crispies before heading out with daddy for something more substantial.  We found a nice place not far away and at first he said he didnt really want anything, so I just ordered myself a full english breakfast with toast.  As soon as my plate appeared his eyes lit up.  He had some bacon, some sausage, all my mushrooms, and was looking for the eggs so I asked him did he want his own plate.  "YEAH, YEAH, YEAH!"  So we ordered a secong full english for him....

We must have been there for well over an hour, both of us eating like food was in short supply.  He even ate a load of toast which had plenty of butter on it and he was dipping it in the jam.  At one point he was putting jam on his slices of sausage and eating them.  Sure, why not!?  Once we had finished, in true Oscar style he had to get saying bye to everyone.  He went on a tour of the restaurant, thanking the staff and high fiving other diners, shouting "BYEEEE" all over the place.  He is some craic!!!

Overall he is doing really well this last few days and seems really happy.  Its great to see his wee smile, and hear his cheeky laugh again.  He has been on Skype to his aunties & uncles, grannies & grandas at home and is really enjoying himself.  Away from the Hospital Isobella is having a great time too, but wasnt quite herself troday.  We thought she was coming down with something but she seems ok tonight.  Good old Nurofen!  Maybe she'll get a wee trip to Hamleys again tomorrow- she absolutely LOVES it there!

 

******UPDATE*******

We are saddened to hear about the beautiful little Niamh Curry who lost her battle with Neuroblastoma last night. I had become friendly with Niamh's dad Chris on Twitter, and we texted each other from time to time about our kids' progress.  Niamh was just recently in the same ward that Oscar is in, having the same MIBG therapy, which makes it a little bit scarier.  

You can read her story at http://www.niamhsnextstep.com/our-journey.html

 

RIP Niamh Curry xxx

So Oscar had his radioactive infusion last Wednesday and his radiation levels have fallen dramatically since.  To give you an idea, he must be under 30 to be around children & pregnant women, and under 150 to be around adults.  After his infusion he was around 6000!  In the first few days we had to be in and out of the room as quick as we could, but now that he is around 100 we can slack off a bit and we can spend a lot more time with him.  His aunty Davina (Nina) flew over for a couple of days this week and helped Oscar do a lot of paintings etc for his notice board, he was so happy with all his work!!!!

Things were going pretty well until the last few days when Oscar has been felling unwell.  He hasnt been eating, has been sick a few times and has shocking diarrhoea.  We had been running overnight feeds into his NG nose tube but we think the milk is actually agitating his stomach so we've stopped the feeds and are trying to convince the Doctors over here to put him on TPN (IV nutrition, straight into the veins).  If we were home in Belfast he'd be on it already!  Could be a row tomorrow...  He is on antibiotics as a precaution incase something is working on him.
Thankfully he has had a nibble at a couple of Happy Meals from McDonalds today (yes, 2 happy meals!!!) so hopefully he is starting to come round.

He got out for some big walks around Regents Park this week once his levels dropped below 800.  At this level he is allowed out for an hour, but we must keep him away from people as much as possible.  He had a great time feeding the ducks, pigeons & squirrels, and eating ice cream.

Away from the hospital, Izzie has been having a great time in London.  Hamleys is her new favourite shop where mummy has taken her a couple of times.  She just runs around screaming and shouting 'YAYYYYY' at all the toys.  Her other favourite place to go is to the pub with Daddy!  She gets lots of attention from the barmaids and gets a big glass of orange juice to drink while she's there.

In the pub watching the Celts on Sunday!

Guzzling a glass of juice.  And i mean guzzling!!!

The view in through the lead lined door to Oscar's room.

Oscar opening a special card he received in the post!! (You know who you are)

Eating a happy meal.  Dont like hospital food!!!

Paul's House, the Clic Sargent 'Home from Home' that we're staying in free of charge while we're here, really is a fantastic place.  It is only 2 minutes from the hospital and is very modern and clean, and we are very comfortable in it.  A big shout out to Celtic FC who this week donated £50,000 to Paul's House (see http://www.celticfc.net/newsstory?item=2621)  Daddy is gutted he missed the presentation as Celtic Manager Neil Lennon turned up along with Barry McGuigan, Eddie Jordan and Sharleen Spiteri.  I think we were off feeding ducks or something at the time :-/

Also, Oscar had some scans late last week which we're waiting to hear the results of tomorrow.  They will basically show the uptake of the radioactive MIBG in Oscar's body i.e. where the Neuroblastoma is.  We hope there are no nasty surprises.

Fingers crossed...

MIBG Begins

Oscar has checked in to his 11th floor London pad which will be his home for most of the next 4 weeks. It is a good sized room and is very will stocked with toys, games, books, paints, colouring pencils, DVDs, PS3, Wii, Nintendo DS etc etc.  He also has an Apple MacBook laptop which he can use to Skype family & friends back home, so he will (hopefully) have plenty to keep him amused.

Oscar had his radioactive MIBG infusion this evening.  A bunch of 'odd' looking nuclear physicists in long white coats arrived looking very serious indeed.  They all stood well back (and i mean well back!) while what looked like a DIY chemistry apparatus pumped the radioactive stuff from lead containers into his veins.  There were no adverse reactions and he was very co-operative.  He is now 'very hot' (ie very radioactive) for the next few days, so we have to minimise our exposure to him as much as possible.  This means being in the next room beyond his bedside lead screen and the lead lined sliding door into our room.  We can keep the door open a little to talk to him but the greater the distance & the more lead between us the better.  There are two rooms in total, one for Oscar and one adjoining room for us.  There are two big heavy lead lined sliding doors which are operated by buttons; one from the corridor into our room, then another from our room into Oscars room.  Only one door can be opened at a time to prevent people in the corridor getting blasted with radiation.  We can go into his room but we must wear gloves, an apron and put shoe covers over our feet first, and we must lurk behing the lead screens as much as we can.  We also need to wear a radiation meter and record our exposure in a logbook for each visit into the room.

The majority of the radiation is lost in his urine and sweat so we have to be vary careful with nappies and even just touching him.  Hugs are discouraged and kisses are a definite no!  Oscar is a very affectionate little boy so its not easy when he's crying for attention and holding his arms out for a hug.

Meanwhile, back at the ranch...  the other one of us is off looking after Izzie.  Basically we will just operate in shifts, swapping over once a day.  We have been put up for the full 4 weeks that we'll be here in a Clic Sargent funded 'home from home' just 2-3 mins walk from the hospital.  It is ultra modern and is extremely clean so we are very comfortable.  It has several fully equipped kitchens, living areas and a play room for the kids.  We just need to find out what we can see and do nearby with a child in a buggy to help the time go in easier.

Team Oscar in London!

Well, the day we (mostly I) have been planning for and stressing about is finally here, we're in London for Oscar's new treatment regime!  We made it safely here via Heathrow and Paddington Station, and checked into our hotel with 2 toddlers, double buggy, 1 large case and 2 hand luggage bags.  Quite a feat in itself!  Izzie did well with her first flight, quite a lot of wriggling, shouting "AHHOW!!" and covering her ears as we lost altitude, but not as chaotic as I expected it to be.  And there were other noisier kids on board, so it made us look good!  As some of you may have seen on Twitter, we had a great flight due to our amazing pilot... Poor Oscar actually gets distressed, he can't decide now whether he wants to be an ambulance man, chef, or pilot.  He is near to tears when he thinks about it all!  I've promised him he can be all 3, he is gonna have one busy life once we get all this over!

We didn't venture far this evening, went to the beautiful Italian restaurant nearby, where Oscar met the chef again and sat at the window to watch ambulances and fire engines pass as he ate.  "London is VERY noisy" - we heard that quite a lot, he was tired when we left and he hid his head under his blanket to block it all out!  When we got back to the room they watched In The Night Garden by themselves (the joy of interconnecting rooms!), then chased each other in and out, laughing and pushing and fighting - they had a great time.  Took a while to get them settled down to sleep, but all quiet after 9pm.  Early start in morn, to get ourselves and all the rest of that stuff I listed, back over to the hospital and our home from home room for the next 4 weeks, by 10am...

I need to say an absolutely massive thank you to our fantastic fundraisers.  I will give them all a proper mention with photographs included at a later date, but for now I just want to report their success.  Latest count from The Oscars in Liverpool is £800 for the MRI scanner appeal, and a really great night had by all the students there.  I couldn't resist tweeting Stormont about it being a shame that students in Liverpool are trying to help us fund our scanner, but no response...  Thanks again to everyone who donated and attended, this money will help make a real difference for our sick kids here in Belfast!  Our poor marathon runners got drenched today, but they ran with determination and courage inspired by wee Oscar.  Waiting for official times to be released tomorrow, but some impressive claims are being made today!  Money still being gathered by all those guys and girls, but it looks like NICFC will do well from all our supporters in Team Oscar!  Absolutely brilliant effort everyone, and very much appreciated by myself and Stephen.

PS attempting to write this post from my new blog app, but I know the layout etc will bug me and I'll have to fix it when I get on my laptop in a few days.. Fingers crossed this works!

Our Fantastic Fundraisers!

Not a lot happening for Team Oscar right now, just hype in the run up to mIBG therapy starting in London next week.  Oscar was in hospital today for blood checks, and said a lot of goodbyes!  Such a popular little man, he was hugging and promising everyone "I will tell you all about the Real Hospital when I get back from London".  He calls UCHL "The Real Hospital", so much so that I have started to do the same!  It causes a few chuckles in the Belfast Children's hospital, which has pretty much been his home for the past 6 months!

Oscar is in GREAT form right now, full of life and laughter, the way we all love to see him.  He paid Daddy's work a visit today, and had great fun meeting Daddy's friends.  He told me all about "Big Al" not being there for him to meet!  He came away with a pocket full of money and a Bob the Builder style attire, so was a very happy boy...

He still isn't eating much but we are running his tube feeds every night - it is impossible to keep him and Izzie from playing rough and tumble with each other, so we just can't manage to run these feeds during the day.  This won't be the case when he is in isolation for 4 weeks in London - that will be a great opportunity to pack the calories in!  Every cloud...!

Anyway - onto another important subject - we have had SO many offers from friends and family, and friends of family, to do some fundraising for Oscar.  At the moment we are still waiting on confirmation that we can get the drugs Oscar needs further down the line in the UK, and if this doesn't materialise then we will need to start fundraising hard and fast for treatment abroad for him.  As we still have some hope of that not becoming necessary, we are asking for present fundraising to be done for the charities we have listed on Oscar's blog, which are extremely important to us.

Here are a list of current activities, a massive massive thanks to all those involved in organising these efforts, as well as each and every person who has donated to them.  It means a lot.

The first event is a black tie "Oscars Ball", being held this weekend to mark the end of term for some of Liverpool's finest students.  Oscar's aunties' friends - Sara-Kate Wilson and Laura Wilson - have organised this knees up to raise funds for the urgently required MRI scanner in the Belfast Children's Hospital.  And it was all inspired by our superstar, wee Oscar!  Thanks so so much girls, good luck with it all, please send us some pics for the blog!  And if anyone reading this can spare £5 for the most worthy of causes, we will be extremely grateful...
http://uk.virginmoneygiving.com/team/theoscars

We have 3 teams running in the Belfast City Marathon:

Oscar's uncle Paddy McCartan and friends are running for the Northern Ireland Cancer Fund for Children (NICFC).  What a great bunch of lads, stepping up and asking to do this for him.  Quite a few of them met Oscar at Eugenia and Paddy's wedding in September, where Oscar was a superstar pageboy, and which is one of our last truly happy memories before we started living this nightmare.  Thanks lads.
http://www.justgiving.com/Patrick-McCartan

Oscar's uncle Dermot Monaghan and friends are also running for the NICFC, further details to follow.  Good man Mermit.

Oscar's aunty Davina has a friend called Lynne, who told Davina that she would love to run in the marathon to raise some money for Oscar.  Davina suggested NICFC, so Lynne and a group of friends have been training hard in order to run for this fantastic charity, who provide our family and many many other families here with crucial support.  Thanks so much girls!
http://www.justgiving.com/Lynne-oliver

Please take a look at their fundraising pages, if you know any of them please give a small donation and leave a message of support.  To see how many people care about Oscar so much, really makes me quite emotional and so unbelievably proud of our gorgeous and courageous little man!  Unfortunately we won't be here to show our support for all Oscar's fundraisers at the Belfast City Marathon on Monday, around the time they will all be limping home, we will be jetting off to London to start our own tough "marathon" of treatment.  Good luck guys, run well!

As a poignant little reminder to everyone about how fragile life and happiness both are, here is a picture of Oscar with Daddy and uncles Barry and Dermot after they ran the marathon last year.  We were fundraising for Unique (www.rarechromo.org), the fantastic charity supporting families with rare chromosome disorders, who gave us unbelievable support when Oscar was diagnosed with Jacobsen Syndrome in 2009.  We talked at that time about fundraising again this year for Unique, and never, ever dreamed in our wildest nightmares about this position we would find ourselves in 6 months later, and the change in focus for our fundraising this year... Life is precious, treasure every single moment of happiness you are blessed with...

Belfast City Marathon 2011