Wednesday, 5 December 2012
We're really sorry we havent updated the blog for such a long time, but its been an extremely busy time for us since getting home from Philadelphia and we've just kept putting it off. We literally cant seem to find any free time these days with Oscar being in and out of hospital several times a week for blood tests/platelet transfusions etc, and trying to keep on top of all the normal daily stuff. Hopefully most of you are able to keep up to date with Oscar via his twitter feed @Wee_Oscar as we normally give a quick update every day or two & attach a photo. You dont need a twitter account to view posts just click here. This is just a very brief update because i know Leona wants to sit down and write a proper update of everything thats gone on since the last post.
In summary, we managed to get Oscar home from Philadelphia by air ambulance but he spent about a month in hospital after we returned as his heart was under a lot of stress and he was (and still is) on oxygen 24/7 to help dilate his blood vessels. He is steadily improving all the time and his heart is improving. We've got him home now and he and Isobella are having a great time playing & fighting with each other- a good healthy relationship!!! :-) He has to run around with a big oxygen hose trailing behind him but in typical Oscar fashion he acts like its totally normal. It doesnt bother him at all.
Oscar's hair is also growing back really well now which he is really excited about. He wants to spike it up like Tree Fu Tom! The kids are really looking forward to Christmas, and so are we. We honestly thought that last Christmas would be Oscar's last, but he's still here and we are very grateful for that. Many kids with neuroblastoma dont make it this far. We are waiting for Oscar's heart to improve a bit more before we start persuing further treatment options. But the important thing is that immunotherapy is still a possibility. We will continue to fundraise to ensure Oscar can get the best possible treatment when he needs it. Thank you to everyone who has supported us through this difficult time and who continue to fundraise for Oscar. We love you all!!!
Friday, 26 October 2012
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
Thursday, 18 October 2012
He did it, Oscar did it! He fought his way back from the brink, and is doing remarkably well. Sorry for breaking so many hearts with that last post - it was raw emotion spilling onto that page. Last Wednesday night we were told to prepare for the worst, and we did. We made sure Izzie spent some time with Oscar, and we each said our private goodbyes. It would be distasteful to talk about it any further than that, but it was surreal, and heart wrenching, to say the least. We made those preparations over the weekend too, very bleak days. The doctors here wanted a discussion with us about "when is enough enough?" - that was very traumatic. When IS enough enough? When do you give up on your child? An IMPOSSIBLE scenario to comprehend, and one we NEVER want to face again.
We weren't being asked to turn off machines, but it was explained to us that the treatment Oscar was receiving wasn't working, and the next step was for them to insert a breathing tube, a traumatic procedure that he wasn't likely to survive. Did we want to put him through that trauma, when it was likely to end in his death? Or do nothing and let him slip away? Arghhh. I made a few frantic phonecalls home, and everyone said don't give up on him. We certainly weren't giving up, but we actually felt like his little body had had enough this time, and we didn't want to have to agree to anything that would add to that pain. After everything he has come through, the fight he has put up for his life, it was cruel for his fate to be placed directly in our hands. We know how it must have seemed to those doctors - a critically ill child, with a rare genetic disorder, a rare cancer, and a rare heart and lung disease...that child doesn't have much of a chance. But it's Oscar, and he beats the odds to achieve the impossible, and you can't give up on him.
Thank you Oscar. Thank you for not letting us face that final decision, and for fighting as hard as you did.
Oscar struggled on through Sunday, just about holding his own. On Monday things showed a slight improvement, his heart was working a little better and his collapsed lung showed small signs of opening up. On Tuesday all our wildest dreams came true, when the doctor came in and said "his chest x ray looks AWWWESOME" - words I will never ever forget. Oscar was interacting with us, up out of bed, and wanting to play. Incredible.
Nurses said we could try him with clear liquids, within an hour he was nibbling grapes and pancakes. We tweeted pictures of his progress throughout the day and everyone was astounded - most of all us. We know he's a fighter, we've watched him battle his way through a year of neuroblastoma treatment you wouldn't wish on your worst enemy, but we just can't believe what he's accomplished this time. Up out of bed, eating and playing, hours after spending almost a week critically ill.
I won't bore you with all the cliches, and words we often use to try to express our admiration of Oscar - you already know. He is an incredible human being, and we are proud to be his parents. He has taught us many life lessons, and although we wish so hard that we didn't have to learn them, we are better people for it. Little Izzie is already showing some of the courage and strength of character we see in Oscar, and we are so proud of her. Although we try to shield her from it, she has witnessed and experienced a lot of pain, tension and heartache throughout Oscar's illness, especially this period in Philadelphia. She adapts to whatever situation she finds herself in, and never loses her playful nature. An amazing little lady.
Throughout these worst days of our lives, we also experienced the best of human nature. The incredible work being carried out in CHOP PICU on a daily basis is phenomenal. The sickest of kids with the most complicated of medical conditions are treated here. Every decision made by the medics is a "life or death" one. They give it their all. To work in that highly charged environment, and have such courage in your convictions, takes a very special person indeed. The heartache they witness is almost unbearable. We have witnessed 5 "code blue" episodes, where an alarm is activated because a child has effectively died. The staff here instantly drop everything and RUN to attempt to save that life.
CHOP is a "teaching hospital", and we have experienced the benefit in that. On ward round every morning up to 15 people (each with their own speciality) gather to discuss Oscar's case and current situation, and invite us to join them. Medics put forward their ideas, and the best way forward for Oscar is debated. They are not afraid to "think outside the box", nor to face criticism. The VDR machine (and the technique which was used) was only used once before Oscar. This was an experimental process, and it saved his life. The machine sends a high pressure shot of air in through the mask Oscar was wearing, and while it does that, it vibrates to encourage his airways to open up. It sounded like a pneumatic drill. The doctors said Oscar might struggle to cope with it - he wore that mask for 40 hours straight and barely complained once.
The spirit of the Irish community here in Philly also has to be seen to be believed. The first people to reach out to us were 2 lovely ladies, Aisling and Fidelma. They arrived at Oscar's room on Sunday, with a hamper of food from home, and a large bunch of helium balloons for Oscar. They had been following his story on Facebook and Twitter, and felt the need to help in some way. It was emotional for me, seeing those kind faces. Since then, more and more lovely ladies and gentlemen have stopped by, offering us their homes, cars, money, mobile phones, food parcels, home cooked meals, presents for the kids, things for me and Stephen to pass the time. It is an experience I will never forget, and if I ever see an opportunity to pass that kindness on to another family in distress, I'll be the first one on my feet to do it. It adds to our sadness of leaving Philadelphia so soon, we think we would have really loved it here.
So what next for Oscar? We don't know. His future is very uncertain. Immunotherapy in CHOP, which we had worked so hard for and pinned all our hopes on, is no longer an option. His neuroblastoma treatment has been put on the back burner until his heart and lung condition is stabilised. We will be flying home to either Belfast or Great Ormond Street Hospital in London via air ambulance as soon as all the necessary preparations are complete. Meanwhile Oscar lives to fight another day, the 3 of us alongside him. And we will never give up.
Saturday, 13 October 2012
People have commented a few times on my writing style in this blog, but I don't plan for it to be so emotive. It's just my thoughts spilling out onto the screen, about what we are experiencing. This post is gonna be a tough one, but is necessary to capture and explain these days when all our dreams turned to nightmares.
After 3 long hard months of fundraising with every ounce of determination we had in us, we made it to the magic number of £250,000. That is a crazy amount of money - it took us 102 days to raise quarter of a million pounds. Unbelievable. The support for Oscar just seemed to snowball throughout that time, and we were truely overwhelmed by the effort made by everyone for our son. Family, friends, strangers - everyone rallied round and made it possible for Oscar to have the opportunity to get the potentially life saving treatment he needed.
We decided we wanted to go to the Children's Hospital of Philadelphia (CHOP), by all accounts it was the best place in the world to access this treatment, so that's what we aimed for. There are cutting edge treatments and research studies going on here into this awful disease, and as you all know our quest has ALWAYS been to get Oscar the best treatment available.
It was confirmed on Monday 1st Oct by CHOP that we needed to be in Philadelphia that very week, to meet a cut off point for Oscar getting immunotherapy here. We had 5 days to prepare to leave the country and our lives as we knew them behind, so that's what we did. Emergency VISA appointments, discussions between hospitals across several time zones, gathering medical notes and medication, flu shots, dental appointments, career breaks. Paying bills, confirming house and car insurances, booking flights, finding accommodation, specialist travel insurance...we did it all.
On top of all that Oscar was still completing his radiotherapy every morning. Gary from McNeill Business Travel was fantastic and arranged all our flights, even securing escorts for us through from check in to boarding so we had help all the way and didn't need to queue. We said our goodbyes and left on Saturday morning, so full of hopes and dreams and nerves about what lay ahead.
We travelled from Dublin to Philadelphia business class. Oscar was very tired and run down after his 14 days of radiotherapy only ending on the Thursday, and we wanted to make this as easy as possible for him. He was VERY tired throughout the flight, and for the couple of days after we arrived in Philly. He didn't want to walk, and complained of a sore stomach. We thought the journey had really taken its toll on him after just finishing that last block of treatment. He was still playing and fighting with Izzie, using Skype to talk to everyone back home, just a poorer version of himself.
We went into CHOP for our first day of "pre-assessments" on Monday at 8.15am. Which was fine, as the kids were up at 4am! They were cranky and tired and disagreeable, we felt it was gonna take them some time to adjust to their new surroundings. Izzie was asking if she was going to Helen's (her childminder), Oscar wanted to go to his nannys house and for Nina and Mima (his aunties) to visit him. It was a looonng day, but good - we talked about the treatment plan, looked around the facilities, and started apartment hunting online that evening. We were all adjusting to the idea of life in Philadelphia.
We had more appointments in CHOP on Tuesday, but they started later. We were having breakfast in our hotel, when one of the hotel workers came in to give us a message from the hospital, that the doctor wanted to see us earlier than planned. We gathered our things up and went up to room to get ready to go out. Oscar didn't want to walk back from breakfast, I carried him to the room. There was a message on our phone that there was something they wanted to double check on Oscars heart, he needed a little bit of further investigation. Hospital life is our norm, we thought very little of it, and headed in.
Oscar had a heart echo, and things quickly unfolded from there. It's actually a bit of a blur to me. We were told that Oscar had pulmonary hypertension, which is EXTREMELY rare, but likely to be a side effect from his chemo and stem cell treatment. The blood vessels in his lungs have become very narrow, and his heart is working extremely hard to push his blood in through them. There is a BNP blood test which measures the level of stress your heart is under, normal readings should be under 100, Oscar's was 2800, he was very ill and he needed to go to ICU.
SHOCK. DISBELIEF. HORROR. ANGER.
This can't really be happening. Do you know what we did to get him here, to make immunotherapy a reality, and you're telling me that chance is gone? He needs this, we want it. Neuroblastoma can't be allowed to win, we have fought so hard, OSCAR HAS FOUGHT SO HARD. "As far as neuroblastoma is concerned, know that you have done everything you possibly could have for your son". NO! Don't tell me that, it's so final, and unfulfilling. This isn't over. It can't be.
Quickly immunotherapy was the last thing on our mind. It was clear Oscar faced a whole new set of challenges and dangers right here and now. He very quickly needed help with his breathing, his lungs were collapsing and his heart was failing. Can you believe that? That is exactly how it happened. On Tuesday night he was spiraling downhill, flecks of blood were spraying out as he coughed. Then out of nowhere he threw up a huge volume of blood. A basin-full. Things were deteriorating fast, I was alone with him in ICU, Stephen back with Izzie in our hotel. I kept asking if I should get Stephen down, they kept saying "not yet". We got Oscar settled, but his breathing was poor and his heart racing. He was moved from small volume oxygen help to large volume of forceful oxygen through CPAP mask, with the aim of forcing his airways open.
Wednesday was a very tough day. Things were getting no better, perhaps a little worse - they prepared us for the absolute worst on Wednesday evening. Oscar may need full breathing apparatus, a tube inserted, and he wasn't likely to survive that procedure. The nurses got 10-12 syringes of medicine drawn up, adrenaline etc, incase he crashed. We were given a room in the hospital that night so we were both on site.
You've gotta remember we're here alone, with Izzie, and we were trying to take care of her too. I did something I swore I'd NEVER do in my life, I let her go to play with the play specialists on her own. Complete strangers in a foreign country, but we had no choice. She was asking a lot of questions and witnessing stuff no 2 year old should experience, we needed to focus on Oscar and she needed a break. My sister booked a flight for Thursday to come and help, we really needed it.
Oscar had a decent night on Wednesday night, after all that we were prepared for. He surprised everyone the following morning, with a good improvement in how his lungs looked on x ray. However since then things have continued to be up and down. One step forward but two back each time, and we just don't know what is going to happen. He has brief moments where he will give us a thumbs up, his courage moves me to tears every time. We tell him not to be scared, he's getting better, everything is fine, but I only wish we could believe that too. His heart function has slightly improved, but his lungs are letting him down. The doctors think he has been just "getting on" with his pulmonary hypertension for some time, the little warrior that he is, and it was never detected. They think he picked up a respiratory infection, maybe the flight didn't help, and it just pushed him over the edge. That is the only explanation they can offer for how we arrived here with a relatively well child, and within a few days are watching him fight for his life.
This is more than a cruel blow. From what we knew, Oscar was close to, perhaps even in remission, we were aiming to get him immunotherapy to give him the best chance of long term survival. 25% of kids with his genetic disorder, Jacobsen Syndrome, die before they are 2 years old. He beat that. Neuroblastoma raised its ugle head, he survived almost a year of the toughest treatment available, and he beat that. Now he has pulmonary hypertension (which is so rare there is no confirmed treatment plan), coupled with a respiratory issue. Oscar is tough, he's a fighter, but there is only so much a little body can take. Selfishly, we need more time with him, we need him to keep fighting. Love you Oscar, and couldn't be more proud of you and all you have achieved in your little life so far. Keep fighting little man Xx.
Wednesday, 19 September 2012
First and foremost, the most important thing of all - Oscar. He has been well, REALLY well, during this break in treatment. He is full of fun, pestering his little sister Izzie, and just BEGINNING to act like any other child his age would/should. We are trying to build him up again since all that nasty chemo which really took its toll on him. His favourite foods right now are pure butter, carrot and parsnip mash, porridge and honey, and of course a full fry. At least McDonalds cheeseburger Happy Meal is no longer a daily request!
|11mths old and several hair cuts already!|
Our fundraising campaign is going AMAZINGLY well - we've said it many times already, and will many times more I'm sure, but the kindness of strangers is unbelievable. It's surprising the new people who come into your life at times of need, and who quickly become very important and special friends. Each and every single person who has organised or attended an event, bought a wristband or made a donation, is helping to give us hope of a future for Oscar - that kind of thanks can never be expressed. But THANK YOU, from the bottom of our hearts.
Oscar has an amazing effect on people - "Oscar is such a friendly and engaging four-year-old. He's such an inspiration and of such good character" (said Lord Mayor of Belfast, Gavin Robinson). Others have commented on how "mature" his conversation skills are, how funny he is, and what a sweet nature he has. He has now 12,500 followers on Twitter - people feel like they know him as we post regular details of his progress (and his antics!), and we feel as though we have a huge army of supporters all helping us get through this awful nightmare. Some days I even think "Oscar has to get through this, there is no way anything bad can happen him with all these people aware of his story and right behind him", but unfortunately there are no guarantees on this journey, we just have a lot of people sharing our highs and lows and it really really makes a difference. The positive energy we get from Twitter helps us to get through, and stay positive for Oscar. But we also like it when, if things are bad, there are people right beside us cursing this world and venting their frustration about what Oscar, and indeed our wee family, has to go through. So all in all, THANK YOU #TeamOscar, you are doing a great job!
So - we're back to treatment now, radiotherapy started on Monday, and all is well so far. His liver is the target for this phase of treatment, as that's where the stubborn neuroblastoma still remains. To think he has come this far - cancer from the top of his skull right through his whole body down to his right ankle - and now just 2 small areas still detected on his liver! 10 months of extremely tough treatment, and our little champ is still winning this battle. Radiotherapy is expected to make him feel a bit sick, and very tired, but that is is nothing compared to the hell he has endured already. We just want to keep him comfortable, rested, and well fed, and hopefully nothing too bad will come of this. Nutrition is a concern apparently, as he may go off his food due to the nausea, but today and yesterday he woke up after anaesthetic and asked for a fry!
His radiotherapy treatment sessions only last minutes, but it is vital he remains totally still so the beams hit the target precisely, and so he is having a general anaesthetic every morning to allow this. He's enjoying all the fun of being in a different hospital, and the attention he gets from all his new nurses! He looks forward to seeing "the sleepy doctor" (anaesthetist). As his body is still tiny, movements caused by breathing, and the "route" the beam takes through his body to reach his liver mean that his lung, bowel, and right kidney are also getting exposure to the radiation. These are healthy areas of tissue which will now get damaged, there are numerous side effects both immediate and long term for that, including possible future cancers, but we were simply told we don't have a choice. Everything that can be done needs to be done right now. The other effect of radiotherapy is that his skin (where the radiation hits) may become very red - like severe sunburn - so we have to put loads of cream on to try to prevent this. I often think, that in 20 years from now, we'll look back at the best treatments we had available for cancer sufferers, and be disgusted by how crude they were and the damage they caused in the quest for a cure.
I've just realised I've been waffling on, and haven't even got around to talking about what we've been up to! Oscar had a busy week last week, but it's getting late and I know I won't do it justice if I start trying to talk about it now. 6.30am starts for radiotherapy, research into complex treatment options for Oscar, pushing the Appeal forward as much as we can, running around after 2 (squabbling) toddlers, all the pressures of our situation, "normal" concerns like remembering to submit child tax credit forms on time, grocery shopping, laundry and cleaning - I could bore you to tears moaning about the stresses we are under but I'll stop there! Both me and Stephen are physically, mentally and emotionally exhaused. 20 hour days have been taking their toll, but adrenaline is driving us on, and nothing is going to stop us on our mission to get Oscar well again. So I'll shut up for now and try to get some sleep - everything else can wait until tomorrow!
Sunday, 19 August 2012
Stephen is still in full time work, his phone NEVER stops ringing about the appeal, he is running around from A-B-C-A, attending most bucket collections across Belfast, and me and the kids really need him. I'm doing similar - chasing new leads for the appeal, following up emails and tweets, taking Oscar in and out of hospital for check-ups and blood/platelet transfusions every couple of days, and trying to be a good mum to 2 demanding toddlers. We have a great team of family and friends who are supporting and helping us with a lot of the tasks, but I don't think anyone really understands how much work is behind the scenes of such an activity. We have been averaging 4 hours sleep per night, but decided on Friday that it must stop.
We are giving our ALL to this appeal, of course we are, look at what is at stake for us, but taking a step back we know that we need to get back in control. The harsh reality is that for all we know, these months could be very precious times for us with Oscar and Izzie, and we can't ever look back and wish we had done things differently. We have been so scared of missing out on an opportunity to fundraise for Oscar's treatment, that we have actually been putting those things ahead of simply spending quality time with him. It will be so difficult to strike a balance, both these things are vitally important, but we do need to make some changes.
Oscar has been doing AMAZINGLY - he is eating and enjoying food like we would never have imagined a couple of weeks ago. He is constantly complaining that he is hungry, that the tiger (who roars in his tummy when he is hungry) is back, and asks "what are we going to eat?" every 30mins. His mobility is still very poor - he can't walk properly, and needs to be in his buggy to get around. Very weird to think that if he wasn't still (just about!) small enough to fit in his buggy, he would be in a wheelchair. Izzie is in charge most of the time - she is much stronger, can run faster, and always has the better of him when they fight. Sometimes she exploits this, and when she is really annoyed with him she tries to pull his feeding tube out of his nose, but at other times she is so gentle and loving - as if she knows he needs her to be careful with him. We can't leave them alone for 1 minute or all hell breaks loose - I have to put both of them in the bath to even have a shower (in the same room), so EVERYTHING is a lot of work and very tough going right now.
But the main thing is always that Oscar's treatment is continuing and still going in the right direction - we can't ask for anymore than that right now. We had a radiotherapy consultation last week, and so Oscar is to begin radiotherapy in September which will last around 3 weeks. This involves general anaesthetic and treatment every day (Mon-Fri), but hopefully no overnight stays. Sounds like a lot of hard work, but we are used to that with the aggressive treatment plan we are on. After radiotherapy will come immunotherapy which is what we are fundraising flat-out for, so at least we have a little more time now to reach our target. There are also lots of side effects of radiotherapy, including it causing future cancers, but as the doctor said - we have no choice. We get him through this cancer and pick up the pieces afterwards. The medical professionals and ourselves are all in agreement that we need to throw EVERYTHING we can at this neuroblastoma - it is notoriously difficult to get rid of and Oscar's chances are poor, so nothing can be overlooked. When I write that it seems normal, but after the end of a long day there are often a lot of tears when we think about the reality of what we are facing. In truth, the only way we get through it is to not think about it, and that annoying cliche "take one day at a time" becomes so true for us...
To end on a positive note - August has been an amazing month of fundraising for us so far! We REALLY have seen the good in people in our hour of need. So many people, groups, businesses willing to help us in any way they can. We just can't start thanking people publicly as there are so many, and there is no way we want to leave anyone out. In my next post I'll update you on all our events, with plenty of pics!
Wednesday, 1 August 2012
There are lots of #TeamOscar fundraising events confirmed for August, so PLEASE have a look to see if there are any near you or that appeal to you. What a great way to spend a day/night out, having fun and knowing that you will be helping wee Oscar! If your event isn't listed below, please let us know firstname.lastname@example.org
MONDAY 30th JULY - FRIDAY 3rd AUG
- Spamount - Ivan Sproule memorial tournament, Spamount Playing Fields, Co. Tyrone
- Omagh - all day Street Collection by Omagh Council representatives
- Glengormley - St Endas half hurling, half gaelic football match kick off 6.30pm. Refreshments served in the lounge after, then a disco! :-)
SUNDAY 5th AUG
- Belfast - Feile Festival Opening Carnival Parade - our stall will be located in Falls Park selling #TeamOscar and Neuroblastoma Alliance UK wristbands and promoting Oscar's fundraising campaign.
FRIDAY 10th AUG
- Belfast - A Night at the Races - King's Head, organised by Fujitsu. Doors 7.30pm. Tickets £5 at the bar.
SATURDAY 11th AUG
- Cookstown - "Laughter is the Best Medicine" comedy night - Greenvale Hotel, organised by Ailis Corey Support Fund. Further details at www.facebook.com/ailiscoreysupportfund
- Belfast - Comedy Hypnosis show - Ligoniel Working Men's Club
- Glengormley - Tesco Northcott bag packing event 10am-6pm. VOLUNTEERS NEEDED PLEASE! Contact @Wagstaff22 or email@example.com
SUNDAY 12th AUG
- Belfast - Feile Festival Finale - our stall will be located in Falls Park again selling #TeamOscar and Neuroblastoma Alliance UK wristbands
- Killeter - 5k walk and cyle run
- Belfast - Cool FM Cash for Kids "Goliath Bungee Jump!" (300ft) - 20 VOLUNTEERS REQUIRED! Contact firstname.lastname@example.org
- Derry - Street Collection confirmed. VOLUNTEERS NEEDED PLEASE! Contact @davinamcm or email@example.com
- Enniskillen - Street Collection confirmed. VOLUNTEERS NEEDED PLEASE! Contact @davinamcm or firstname.lastname@example.org
- Belfast - Disco and raffle in Davitt's Bar (Michael Davitts GAC) 8-LATE, organised by Shana
FRIDAY 24th AUG
- Castlederg - Dance/fundraising night in Charlie's Bar. Music by White Lightening, tickets on sale soon!
- Belfast - ASDA Shore Road bag-packing event
- Greenisland - "The Oscar's" tablequiz for Oscar - Greenisland Sports Club. Contact @pm842 for quiz and ballot tickets
- Belfast - ASDA Ballyclare bag-packing event
SUNDAY 26th AUG
- Peatlands Park, Lough Neagh - Terex team of 20 will cycle 86 miles around Lough Neagh. Show them your support!
FRIDAY 31st AUG
- Belfast - Charity Football Match: Doctors v Porters (Belfast HT), QUB pitches. VOLUNTEERS REQUIRED contact email@example.com if you fit the bill!
Thanks to everyone who has been involved in organising an event so far. We know the mammoth task it is to get these things off the ground, and we appreciate every effort being made for our wee Oscar!
Monday, 30 July 2012
|Enjoying our only time together in months!|
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|
|I want to feed the baby!!!|
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.
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...
|Ray Ginley & co Emerald Roadhouse|
|Cliftonville collection raises £800|
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 http://oscarknox.blogspot.co.uk/2012/05/sun-is-shining-oscar-is-sweet.html
|Celtic and Wales hero Joe Ledley|
Tuesday, 24 July 2012
|Elmo, sent in by Oscar's cousins Chloe and Sophie|
|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.
Friday, 20 July 2012
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|
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
|Frozen stem cells emerge from the container|
|Oscar receiving stem cell infusion|
|"Mummy, I'm busy!" - when I tried to take this photo of him (Monday 9th AM)|
|Tuesday 10th July|
|Thursday 12th July|
|Saturday 14th July|
|Monday 16th July|
Wednesday, 20 June 2012
Today we launch the offical Oscar Knox Appeal. This is our campaign to raise money for Oscar's crucial immunotherapy treatment which should only be 2-3 months down the line. It is currently not available in the UK for us, but along with other neuroblastoma parents we are desperately hoping this situation may change in time for our kids. If it doesn't, we will need to move rapidly to seek and pay for treatment for him in either the USA or Germany, as of yet we haven't been able to figure out the most appropriate treatment facility. If Oscar gets this treatment in time here, then any funds raised in his name will be held for him incase he ever needs further treatment outside the UK. Even if Oscar manages to get into remission with his current treatment, there is a VERY high risk of relapse with neuroblastoma, which almost always requires urgent treatment abroad.
Please visit the official Oscar Knox Appeal page.
The JustGiving page can be accessed directly here.
A massive thank you to Neuroblastoma Alliance UK - they do incredible work on behalf of neuroblastoma kids and their families. They have guided us and helped us every step of the way over the weekend with launching our appeal, and we look forward to running a highly successful campaign with them for our wee Oscar.
Sunday, 17 June 2012
At this moment in time, there are no options available to Oscar to receive immunotherapy drugs in the UK, however, they are more widely available abroad. He was due to get this crucial final phase of treatment on the European clinical trial he was on, but he had to be withdrawn from the trial to have essential MIBG therapy in London recently.
Immunotherapy drugs are only available within clinical trials here. Further clinical trials involving immunotherapy may open in the future, which Oscar may or may not meet the entrance criteria for, but we cannot afford to sit around waiting to see if this is the case. Time that Oscar simply may not have.
We have ALWAYS put Oscar and the quest to get him the best possible treatment first. This is why we have taken the decision to launch an 'Oscar Knox Appeal' to fund treatment abroad. Although we know that this is a huge undertaking, we believe it is essential. We have to know as parents that we gave him the best possible chance. We can't lose our wee Oscar.
We will let everyone know more once we have our plans in place.
Thank you all for your continued support.
Stephen and Leona
Tuesday, 5 June 2012
Paul's House, the CLIC Sargent 'Home from Home' that we stayed in totally free of charge for our entire stay was amazing. It was extremely modern and clean, and made the whole experience so much easier for us all. There are no such Homes from Home in Belfast which means some families have to travel over 100 miles to get to and from hospital, sometimes daily. We know of one couple who have had to rent an apartment in Belfast just so they can be near the Hospital during their little girls treatment- a huge financial burden. CLIC Sargent are currently fundraising to build two Homes from Home here in Belfast. You can make a donation to this very, very worthwhile appeal here if you wish...
The MIBG therapy has totally wiped out Oscars bone marrow, and therefore his ability to produce red & white blood cells and platelets. This leaves him with no immune system. He got just two nights in his own bed before returning to hospital in Belfast on Thursday night. He was back in to get his stem cells (harvested from him some weeks ago) returned into his bloodstream on Friday morning. He is being kept in isolation to minimise the risk of him picking up any infections before the stem cells do their job and he begins to produce his own white cells again. Without white blood cells an infection could be fatal. He is on a 'clean diet' which means his food is specially prepared and he has to drink sterile water etc. Oscar being Oscar he is taking it all in his stride and is in great spirits. He has been doing lots of painting, watching DVDs, playing on the Motorola Xoom tablet etc and having lots of fun with the nurses when they call in.
As many of you will know, Oscar is on Twitter (kids are so advanced these days!!) and now has over 2100 followers! We try to keep the blog updated as often as possible but Twitter allows us to throw out quick updates and photos of Oscar in an instant. A BBC Journalist who had been following Oscar on Twitter got in touch with us and asked us to do an interview on Radio Ulster about Oscar and the use of Twitter to share his story. We agreed and a Journalist came out on Thursday morning. You can listen to it here.... (forward to 55mins)
For daily updates and pictures of Oscar follow him on Twitter @Wee_Oscar
Unfortunately Oscar is likely to be in for another 3 weeks or so. It is very difficult for us when he is in long term. A lot of people dont realise that one of us has to be with him at all times- we cant just go home and leave him to fend for himself! With Dad working full time, Mum stays with him during the week, and Isobella is juggled between our brilliant childminder Auntie Helen, her Supergran Granny Knox, and her crazy Auntie Davina! At weekends Dad comes straight in from work on a Friday to let Mum get home for a couple of nights in her own bed- and to see Izzie! Its a crazy, crazy way to live. Unfortunately we dont have any other choice.