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.

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.