Friday, 26 October 2012

Feeling lost, and a little defeated...

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!

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

It all goes wrong in Philadelphia...

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.


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.

The Team Oscar Gala Ball

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Gala Ball Promotion

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