Friday, 30 March 2012

London, and the tough road ahead...

Well, what a ball Oscar had in London, and what a positive experience it was for us!  We were obviously quite anxious about what would be discussed and what it would mean for us, but overall we feel reassured and ready to climb the steep hill ahead.  Oscar was behaving quite badly on our journey Belfast side, which none of you will believe (NO MORE HORRID HENRY DVDs), but he had a sleep on my knee in the plane, and once we arrived in London he was back to himself.  It's funny the looks you get when you are trying to be stern with a child so obviously unwell - but they still need discipline in order for them to return to a normal life down the line!  It was his first ever flight, but he took it all in his stride, take-off was the highlight.  He loved the hustle and bustle of getting the train, then the cab to our hotel, and is still talking about all the ambulances and fire engines he saw during our stay!

The hotel was quite grim (to say the least), but as it was only 1 night we decided to grin and bear it.  We found a gorgeous Italian restaurant nearby, and Oscar ate garlic bread and pizza dipped in olive oil and balsamic vinegar like it was going out of fashion!  He has quite advanced tastes for a 3 year old, we discovered in the Merchant Hotel he loves breads and tapenade!!!  He even got to meet the chef, which is his favourite thing to do if we eat out.  We wandered around the UCL Hospital area, saw a really interesting art display about medieval medical instruments (some of which brought tears to our eyes with both laughter and horror - Fakir's sandals impressed me the most!), and got our bearings of our potential new home for a while.  We made sure we knew where we were to go the following morning, and had an early night, writing our list of things we wanted to cover with the consultant the following day.

We were awake from the crack of dawn on Wednesday morning, had breakfast (I couldn't even eat with nerves), and made our way to UCLH.  What a lovely modern and well equipped hospital it seems!  Oscar absolutely loved the playroom with the "real" motorbike, and all the staff were really friendly and helpful towards us.  We met the consultant who has been in discussions with our Belfast team about what is best for Oscar, and we had a full and frank discussion about the path ahead.  No need to bore you with the finer details, but the outline for us is this:
1. another stem cell harvest procedure
2. TVD chemotherapy (which is very toxic and has a lot of side effects)
3. MIBG therapy (radiotherapy involving nuclear medicine) in London for 4 weeks
4. stem cell rescue (Oscar is given back some of his harvested stem cells to help him recover)
5. high dose chemotherapy
6. stem cell rescue (Oscar receives more of his harvested cells to recover a second time)
7. immunotherapy?

Oscar's consultant here in Belfast is drawing up a timetable, but this treatment plan is due to begin next week.  I am so eager to get back onto treatment, even though it is an AWFUL process to go through.  His hair, eyelashes and eyebrows are growing steadily at the moment, but everytime I look at them all I think about is what else is growing inside his little body.  I've often thought about keeping another private blog "The thoughts of a mother...", but I think it's best to keep those shut away and only occasionally unleashed on you all (as in last Thursday's angry post!)

I'm sure you appreciate reading this list that a very tough few months lies ahead for Oscar and us, and his little body is about to take a huge battering.  But we have to keep our eyes on the end prize, and just help Oscar through this as much as we possibly can.  Our little warrior, we are fighting this fight with him every step of the way, and just couldn't be any prouder of him than we are.  Every day we see his little smile and get a hug is a GREAT day.  Love you Oscar (and Izzie of course!) XXXX

*Photos to follow, too tired to upload them now!*

Sunday, 25 March 2012

Easter Party and Fireman Sam!

Things have calmed down since I created the last post. That night (Thursday) at 8pm, Stephen took the call from Oscar's consultant to say that the neuroblastoma consultant in London wants to see us this week, initially to discuss the possibility of MIBG therapy there for Oscar.  I don't really want to talk about this too much yet, it has been so complex for the medical professionals trying to figure out which treatment path offers us the best hope for Oscar, and now we are trying to get our heads around it all. 

It seems high dose chemo here in Belfast isn't likely to work well on what disease is left to tackle, MIBG should be more successful.  Trying to be realistic, but just can't contemplate this not working.  Which means we will have to leave the clinical trial as we are veering off path, and the clinical trial is the only way we can get the immunotherapy drugs which give him the best outlook.  These aren't licensed for use here yet, but have proven very successful in the American trials in extending the kids lives by decades, and are now available there outside of trials.  So what does this mean for us?  We MUST get Oscar these immunotherapy drugs to extend his life as much as possible, but if we can't get them here do we need to start fundraising for treatment in America yet?  Overwhelming, and all still up in the air, hopefully Wednesday will give us some answers or at least provide us with enough information to come to our own decisions.

So we put all this to the back of our minds today - we had arranged our Easter party for the kids (egg hunts and all the rest) last week, when we still thought the likelihood was that Oscar would be going in to start high dose chemo tomorrow.  Oscar had an AMAZING time, he loved finding the eggs, and ate so much chocolate we were sure he would be sick!  We played games and had a lot of fun, with some of his aunties and uncles there too.  We even had a cake for Daddy's birthday which is this week!


Then, to top it all off, the local fire crew called to our house in the fire engine to visit Oscar!  He was blown away, and overcome with excitement.  They were great guys, accommodating his every request.  Thanks so much!  He was pretending to drive, turning the lights and siren on, wearing the hat, and using the hose!  Poor Izzie wasn't so keen though, woken up out of her sleep to join in the fun, and the siren was just too much.  Some of the local kids called down too, there was a lot of excitement about Oscar's special visitors!  And thanks also to Heather and Alan, who helped make it all happen.  It really was a highlight, and Oscar will talk about it for a long time to come.  Special memories for us too...


Oscar was absolutely wrecked by this evening, this is probably the most active day he has had in 6 months or more!  He got really cranky, and nothing would please him.  So we got his pyjamas on and asked him if he wanted to watch a DVD, to calm him down before bed.  And guess what he picked?  Fireman Sam of course!  He was relating everything in it to his experience today!  Little Izzie was sent to grannys house again, it's her second home now, we are in hospital first thing to get Oscar's bloods checked.  After that, all focus will be on London and what developments it brings!

Thursday, 22 March 2012

Just a brief (and angry) update

Today was an awful day, I am so fed up with this whole thing I just want to scream f*ck this, f*ck neuroblastoma, and F*CK what cancer is doing to my beautiful boy!!!!!!!  Apologies for language but there is no point in keeping this blog unless it's an honest record of what we are going through.

I turned my back on Oscar and Izzie last night for 2 minutes, the squealing started and when I ran in to see what was happening, it turns out Izzie had pulled Oscar's feeding tube out of his stomach through his nose.  They both look shocked, but especially Oscar.  I knew this would mean getting it inserted again which is a truely horrific experience, but what can I do, kids will be kids and I only wish we weren't having to deal with all this.

Back in hospital this morning to get bloods checked again, get an audiology (hearing) test, and to HOPEFULLY find out what is happening next.  I'm sure you are sick of reading that, but you want to be on this side of the fence waiting for that news, the wait is agonising.  So Oscar needed platelets, which I knew would mean most of today spent in hospital waiting for them to arrive.  We went down to the main RVH building to get his hearing test done, walking through all the looks of pity, people pointing and staring and making comments to each other in front of me.  I don't care I can take it, but when Oscar starts to notice and feel there is something "not normal" about him it is heartbreaking and makes me really angry.  I'm sure I would have looked if I was on the other side, but it's truely shocking how people act towards us sometimes.  Anyway.  I hope they all go home tonight and thank their lucky stars and hope they never walk in my shoes.

The audiology test also annoyed me, the doctor didn't seem to know what was wrong with Oscar or what we were there for, asking me in front of him what was wrong with him, did he have tumors and did they affect his hearing.  I said he has neuroblastoma but he needed further explanation, and "tumor" is one of those words I don't want said in front of Oscar, I don't believe any 3 year old needs to know "tumor" or "cancer" especially when it is in relation to themselves.  The test itself actually showed Oscar's hearing has been affected by the chemo, as were we told was likely to happen.  It looks like he is losing/has lost his ability to hear high pitched sounds.  For now.  Who knows what the rest of the chemotherapy will do.  And tough to have it confirmed to be happening.

Back over to the Children's hospital, got Oscar's platelet transfusion, then time to get the NG tube inserted through his nose.  This is the 3rd time, and it was particularly bad.  It took 3 attempts and a lot of force to get it done.  The nurses did a great job, but it goes against all natural instinct as a mum to forcibly hold your child down and restrain him while you let others do such painful things to him.  I hate it.  There was a lot of (actual) blood, sweat and tears, and now I will be afraid to turn my back on the kids at all incase this happens again.

I asked before I left if it was confirmed yet what was to happen next.  But it seems those discussions are still taking place.  I don't know who is to blame or what the hold up is, but I just wish they only knew what almost 5 weeks of no treatment and waiting to hear what direction our lives are going to be sent in does to us as parents.  Especially me.  I'm definitely starting to get anxious and just wish I could be told once and for all what is happening.  But for now, back to sitting by the phone waiting for that call.

Tuesday, 20 March 2012

Good times for #TeamOscar but still waiting to hear what's next!

On Thursday and Friday last week, Oscar had the stem cell harvest procedure repeated to ensure he has enough to transplant back to him once he needs them.  This will take place after high dose chemo, and is an alternative to a bone marrow transplant, in that his own healthy marrow cells were harvested and will be frozen and given back to him.  This needs to happen as the high dose chemo will be so toxic his bone marrow will be completely destroyed...

Poor little man was in an awful lot of pain with the tube in his groin this time, it's not often he shows that he is in pain but it was bad, he didn't really sleep and couldn't be moved for the 36 hours it was in.  However the harvest was a huge success - the doctors were hoping for a total of 3 million (cells?), but Oscar managed to yield just over 4 million!  Thanks again to everyone who made this a huge success, but especially Oscar, what a little star!

He also got to see The Big Machine once again, and managed to put right the fact that it had no eyes!  Thanks to Valerie for providing the googly eyes, and everyone agreed that it did look much better now.  Well done Oscar, that was a great idea!  It's so funny the way he processes these thoughts, he considers The Big Machine to be a living thing, he was so concerned it had no eyes, and was worried about where it would sleep, suggested it wanted rice crispies after his harvest was finished, and was also worried that it would get cold and wet going outside onto the lorry again.  I love his imagination!

We decided to treat Oscar (and Izzie and ourselves!) to a night away after this tough procedure was over.  Oscar loves staying in hotels and living it up!  We spent St Patrick's Day in The Merchant Hotel (thanks to Stephen's friends at QUB, what a lovely leaving present!).  We watched everyone pass by from 4 floors up, treated ourselves to tea and cakes in our room, the kids had a fun time in the roll top bath, and to top it all off I had a very special Mother's Day breakfast the following morning!

What a perfect way to spend our last weekend together (for a while) as a 4, we are waiting on the phonecall to tell us whether high dose chemo is next (which is up to 6 weeks isolation in hospital for Oscar, without seeing Izzie or any other family members apart from me and Stephen), or MIBG therapy, which would have to take place in London.  The rollercoaster ride continues...!

Tuesday, 13 March 2012

It's a waiting game...

Not much happening at the moment, just the routine blood checks every couple of days, and blood and platelet transfusions as required. *Thanks to everyone who has become a donor, keep up the good work!*

The end of chemo assessments Oscar had in February showed one large tumor remaining on his liver, and tiny pockets of neuroblastoma cells in other areas.  The size or location of the liver tumor means surgery is not an option due to the high "morbidity risk", so the doctors are left with a dilema as to how best to tackle the spread of the remaining disease.  Our own team of consultants in Belfast are in direct contact with specialists in Great Ormond Street and other locations, they have been analysing the scans and discussing the best options for Oscar.  It is frustrating in that we know there are neuroblastoma cells/tumors in his little body, working away, while we wait for a decision to be made.  But we also know that the decision cannot be taken lightly, and we really appreciate the effort and work behind the scenes by everyone, to ensure our little boy has the best possible chance of beating this and surviving...

The main discussion is around whether or not to continue with Oscar's current treatment plan, which is a European high risk neuroblastoma clinical trial, on which there are new drugs which have already shown a significant improvement in survival rates in the American studies.  Stay on this, which we have always believed with all our hearts is Oscar's best option, or come off it to try MIBG therapy, which may best eradicate the spread of the disease and possibly the large tumor remaining on his liver.  ARGH!!!  Oscar's consultant is hoping to have their final "best approach" decision by tomorrow, which will then be discussed with us, and the plan drawn up for next stage of treatment.

On a lighter note, we managed to escape the reality of our situation at the weekend, and recharged our batteries for what lies ahead at Lough Eske Castle in Donegal.  What an AMAZING place, perfect if you need to get away from it all and relax in pure luxury!  We're already planning our next break there (once another Travelzoo deal is released!), and contemplating taking the kids...  Stephen said we should leave all our worries at the Donegal border on the way down, and pick them up on the way back, which is exactly what we did!  Oscar had a sleepover at Granny Susies and Granda Brians house, Izzie had fun with Davina and Dermot, and Granny Jo came up and did all our ironing and tidied up for us returning.  What a perfect weekend!

I also have another *huge thanks* to give to Louise at Carphone Warehouse - she was reading Oscar's blog and contacted us to ask if there was ANYTHING Carphone Warehouse could do for us or donate to the haematology ward to make things any better.  She arranged a donation of 6 Motorola Xoom tablets - 1 for us and 5 to remain on the ward!  What an amazing and generous gesture, this will have a huge impact on a lot of people, especially once we get the WiFi situation resolved on the ward.  There are lots of toys and art materials available for the kids to use, but there are a lot of older kids and especially teenagers coming in for long stays, and there is not a lot to keep them entertained.  Thanks again Louise, Carphone Warehouse, and Motorola!  Oscar is already so proficient in using ours, he has been showing me how best to navigate the screens, and spends a lot of time every day playing with the pre-school apps we have downloaded for him!

We also have quite a few friends, family members, and friends of family members contacting us to say they would like to do some fundraising on behalf of us and Oscar, for the NICFC and MRI Scanner Appeal.  We will keep you posted as events are arranged, particularly teams in the Belfast Marathon.  So thanks once again for all your support, Oscar is doing GREAT right now which means we are doing great!  So many people continue to tell us what an inspiration he is to them, especially on Twitter @Wee_Oscar, and someone has suggested we enter him for the UTV/U105 Young Person Award for showing bravery in battle against an illness, so watch this space!

Sunday, 4 March 2012

Oscar and "The Big Machine"

I've got quite a lot to say about the past number of days, but I'll do my best to keep it brief!  Overall, it's a huge 'thumbs up' right now from #TeamOscar... 

On Wednesday, we were allowed out of hospital for the day, Daddy got a half day from work, and we spent it doing all Oscar's favourite things!  We had McDonalds for lunch, went to the beach (which he had been asking to do every day for over a week), played on the swings/slide/see-saw, pizza for dinner at Davina and Dermot's new house, and went back into hospital at bedtime, fast asleep.  It was a great day.  Of course the highlight was Oscar seeing his little sister Izzie, they hugged until they toppled over, and sat watching cartoons together holding hands!  So sweet.
On Thursday morning, Oscar's blood counts were good enough to attempt harvesting his stem cells, so it was a very busy day.  He went to theatre to get the plastic tube inserted into a vein in his groin, and while he was there his bone marrow test was repeated to make sure the sample was significant enough to give a conclusive answer as to whether or not his bone is now disease free.  Oscar's stem cells were to be harvested using the peripheral blood stem cell harvesting procedure, which removes stem cells from your blood. We were introduced to "The Big Machine", which was connected to Oscar via tubes to his groin.  His blood ran through this machine which separated all the components of it using a centrifuge, and his stem cells were collected.  We told him "The Big Machine" was collecting his "magic juice" which would help to get him better, to which his response was "I don't like The Big Machine.  It's annoying me.  AND it's got no eyes."  So funny, I love Oscar's thought processes! 
He got a bit anxious during the time it took to do this, but that was probably more to do with the fact he had been to theatre and already been through quite a lot that day, never mind being put through the harvesting procedure.  It had to be repeated again to collect more on Friday, and he took it all in his stride, as only Oscar does.  He watched tv and DVDs using his headphones to block out the noise, and played Hungry Hippos.  I will never tire of saying how proud he makes us, the way he responds to the tough procedures he is being put through! 

A *special thanks* goes to the lovely ladies who were responsible for Oscar's stem cell harvest, the way they managed the whole process and aimed to make it as comfortable and stress-free as possible for Oscar was fantastic.  It was also obvious that there were a lot of people working behind the scenes to coordinate the harvesting procedure and make it all possible, so a big thanks to all of you too!  On another "first" for Oscar, he was the first little boy in NI to use this new upgraded version of this blood separation machine, and thankfully it was a great success!  Oscar will have to have more stem cells collected at some stage to make sure he has enough to help him recover quickly once he goes through his high dose chemo stage, but next time these cells will be removed directly from his bone marrow using a needle in theatre.

On Friday evening the tube in his groin was removed, and it actually shocked us how large and rigid this was, and the way it was crudely sewn into him with lots of black thread!  Poor little Oscar, you would never ever know that he is uncomfortable or in pain, he has such a high pain threshold and a sweet nature.  Once this was removed and the doctors were satisfied he wasn't at risk of heavy bleeding from this site, we were allowed to go home!  First night at home in nearly 3 weeks, we were so happy to have our little family back together.  We spent Saturday at the beach (again!), this time we took Oscar to Helens Bay, which he described as a "rubbish beach" as the waves were too loud and there were no swings!  Looks like Loughshore is definitely his beach of choice!

Today Oscar went outside on his motorbike, and generally had a lot of fun.  He is eating so well, and most like the real Oscar that we have seen since this whole nightmare began.  His fun nature is back, and his mischievous side, and nothing makes us happier than seeing him ask for food and finish a large plate of something.  We need to build up his strength as much as possible for whatever lies ahead, we should know by the end of this week what comes next.  The options are an extra 2 cycles of harsh chemo, surgery, or high dose chemo.  Here's hoping our little hero will take it all in his stride whichever it is!