Wednesday, 16 April 2014

"Your son doesn't do giving up"

Since 17th March Oscar has been going through hell, and so have we.  Up until that point he had had approximately 5 months of relative stability - minimal treatment, maximum fun, and his neuroblastoma had been held at bay.  Throughout that time he remained on morphine to manage the pain his disease caused him, but you would never have known.  He lived life to the full.  However, it has been our experience that neuroblastoma tends to pull the rug out from under your feet the moment you begin to count your chickens.  Such a cruel, ugly and despicable disease it is.  And the heartbreaking truth is that now, after 2 and a half long years of trying, it is finally beginning to win.

In the past 4 weeks Oscar has suffered more pain than we could have imagined, and more anguish than any 5 year old should ever know.  He would scream and cry in agony that simply could not be eased, while morphine, sedatives and anti-anxiety medications were pumped into him 24 hrs/day.  In the quiet times he said things like "I don't want to be a boy anymore", "I don't want to be me".  We were pushed to the limit of what any parent could tolerate in terms of watching their child suffer.  Oscar is now on an extremely high dose of diamorphine, more than nursing staff have known adult cancer patients to require, and thankfully those days are behind us.  It is a miracle that Oscar is awake, and functioning, but that is our wee Oscar all over.  I said to our wonderful consultant a couple of weeks ago "I don't think Oscar is going to give in to this diamorphine" to which he replied "Your son doesn't do giving up".

You must appreciate that, as always, we have explored every avenue possible to give Oscar every chance he could have to beat this monster.  With all options studied in depth and discussed through tears, we took the decision to move our family into the Children's Hospice.  Although this was an extremely difficult choice, it has been without doubt the best one for us as a family and in particular to meet the needs of Oscar and his little sister Izzie.  It is so important to us (and to Izzie) that she can be close to Oscar, and to us, which is just not possible in a hospital environment.  We still do not know what lies ahead, or how far ahead these questions might be answered.  We simply have to wait to see what move his neuroblastoma makes next.

If you didn't watch the BBC NI documentary on the Children's Hospice, you really should.
search for "True North S02E04 - Children's Hospice" on
We did, and were so impressed by the staff and services available, but it is nothing compared to the experience of actually being here.  The kindness and compassion shown to every person coming in through these doors is phenomenal.  The staff looking after Oscar on a daily basis are like angels, with hearts of gold.  Nothing is too much trouble, and nothing is impossible.  Oscar's every request is met with a smile!  Lovely home cooked food for every meal, endless cups of tea, fun and laughter and messy play at every opportunity.  Right now there is no place better we could be.  It is also such an eye opener to see how this invaluable sanctuary manages to operate on very limited funding.  Teams of volunteers are in place every day to keep everything ticking over, and donations seem to account for a lot of materials on site.

It must sometimes seem like we have made every aspect of our journey public knowledge, but this is far from the truth.  We were anxious to make sure that after we made the move to the Children's Hospice we would remain in control of what is known about Oscar, but any fears we had were unfounded.  It feels like a haven, our privacy is completely respected, and we have been given space and time to be a family.  Everything we could wish for at this time.  Oscar and Izzie absolutely love it here, they call it "The Holiday House", which means absolutely everything.

Once again, we are so grateful to everyone who has supported or helped us in any way.   Particularly the amazing teams in both the Children's Hospital and now the Children's Hospice.  Nothing can take our pain away but some people really make a difference.  From the bottom of our hearts, thank you.  Oscar and Izzie - you deserve our biggest thanks.  You are amazing people and we love you more than words can say xxxxx

Tuesday, 21 January 2014

Oscar's New Year Resolution

WAOW what a HUGE success todays give blood session was at City Hall!  We are entirely overwhelmed and delighted by the numbers of people who turned up, and the length of time some waited to make their donation!  We found out that people were waiting on the doors to open this morning at 10am, 50 people were in the queue by 10.15am, and approximately 400 passed through the registration process by 5pm!  Not all turned out to be eligible to donate this time, and some opted to attend a future session local to them.  We will find out tomorrow if the NIBTS "donations in one session" record has been broken - it currently stands at 190 units...

Looking at all the faces in the crowd, strangers sitting patiently waiting for up to 2.5 hours, it was a really emotional thing.  Anyone we spoke to said their reason for being there today was "to help Oscar", "because of Oscar", "to help kids like Oscar", and many were young first time donors - it was such a humbling experience.  Some were terrified of needles and visibly anxious, others hadn't given blood in over 30 years and had been inspired to start again, and many were wearing school uniforms or had just completed exams.  Several people asked for information on how to arrange their own donation sessions in their area in the future.  Parents queued with their tiny babies, some people returned 2 or 3 times waiting on the queue to shorten, and there was an incredibly positive atmosphere throughout the day.  Everyone said they felt so good afterwards, knowing that they have made a difference to someone in need!  We tried to speak to as many people as we could, but if we didn't get to speak to you, please know that we are entirely grateful for what you did today in Oscar's name.  This is one of those times that words just aren't enough, but THANK YOU ALL!

We know quite a few people had to leave as the queues were too big - returning to work and picking kids up prevented some from donating blood today which is entirely understandable, thank you for making the effort.  The blood transfusion service staff told us that the number of new donors who turned up today meant there was a processing "bottleneck" as health checks were carried out, but assured everyone there that normally the process of giving blood takes just 45 minutes in total.  Today's circumstances were exceptional, but who could complain about that?  All those new donors are now registered on the NIBTS database, most are returning to local sessions in the near future, and hopefully all are going to be lifelong blood donors!

Some people found out they were ineligible to donate today, others ineligible for life, and were incredibly disappointed.  Please do not be disheartened!  By even trying to make a donation you have done more than most people, and if you can convince 2 other people to become blood donors on your behalf then you will be doing more than your fair share to increase donor numbers here.  Hopefully we can smash that 6% barrier, which is how many of us currently donate blood!

So many people to thank, and hopefully I cover everyone:

Councillor Tierna Cunningham who proposed the motion of highlighting the Blood Transfusion Service to Belfast City Council in November, all the councillors who wholeheartedly supported and embraced this idea, Lord Mayor Mairtin O Muilleoir for hosting todays event at City Hall, and all the council staff who worked hard behind the scenes to get everything in place.  We loved the pulsating red lighting on City Hall last night and today!

The NI Blood Transfusion Service staff who made everything comfortable and pain free for the donors today, and worked under significant pressure to keep everything running as smoothly as possible.  They stayed late to make sure every last drop of blood was collected, and we heard some wonderful feedback from the donors.

Everyone who spread the word and encouraged others to donate, particularly Michael 'The Blade' Rutter (Superbike Racer) and Adam Keefe (Captain of Belfast Giants).  Blast106, Downtown Radio, Cool FM, and UTV for the superb coverage.

Oscar, for being the amazing little boy who makes people make things happen (including us!) 

Finally, thank you #TeamOscar, you have done our boy proud and saved so many lives by your actions today. 

Perhaps Oscar's New Year Resolution #ONYR can be an annual event, with hundreds of new donors signing up every January in his name xxxx

Monday, 20 January 2014

Fragile state of happiness

I used the phrase "fragile state of happiness" last Summer, just after Oscar had achieved "No Evidence of Disease" in all his tests - we were delighted and getting on with "normal" life but never forgetting that our world could come crumbling down around us at any moment.  Which is exactly where we are at right now.  Oscar has been a little star and has achieved more in this past 6 months that any of us ever thought possible. 

Relapsed neuroblastoma

When he relapsed at the beginning of August, it was a "devastating relapse" diagnosis - neuroblastoma had once again taken over his little body with him showing no signs until it was extensive.  Within days he was screaming in agony day and night, seriously ill with disease through his bones and organs.  It had also progressed to a few new sites that it had never been picked up on before, including his brain lining, which completely terrified us.  We spoke at length with Oscar's wonderful consultant, and all agreed wholeheartedly that Oscar's quality of life was the most important thing to pursue.  We did not want him to suffer any more high doses of chemotherapy, or any treatment that would make him suffer more than he already was, he had spent 18 months of his short life already doing that.  We resigned ourselves to the fact that he was very seriously ill, this was a devastating relapse, and that we would take every decision to ease his pain and to surround him in love for as long as we had with him.

Chemotherapy was used to reduce the significant levels of pain Oscar was in - that was our number one goal in the early days, to do anything that would relieve the horrific pain he was experiencing.  We have changed the chemotherapy drugs a number of times, both type and dosing, and now he is having an oral chemotherapy drug called Temozolomide at home.  This is keeping his disease "at bay", while still allowing him to have a good quality of life.  His hair is even beginning to grow back!  We haven't had to spend time in hospital (apart from regular outpatient appointments), and we are together as a family and making the most of things at all times.  Oscar is on slow release morphine, with extra boosts if he is complaining of pain.  We have achieved a great balance in the circumstances, and are hoping against hope that it lasts for a very long time!  We are still weighing up options both within and outside of the UK, but this is a slow and difficult process with any action having the potential to cause significant improvement OR significant decline in Oscar's health.  Not decisions any parent would take lightly.


The most important thing to happen for us recently is that OSCAR STARTED SCHOOL!  I cannot tell you the joy we felt at that, as did all his close family.  Stephen and I spent time over Christmas considering everything about our situation, and this was the number one thing that hurt the most, and that perhaps we could change.  Oscar had had the chance to spend time in his new school in May, meet his teachers and classmates, and even get fitted for his new uniform.  All that ended first week in August, with the news of relapse and immediate treatment, and so his little uniform hung unworn since.  Oscar could not understand why what was promised to him never happened, and it broke his little heart.  He cried many tears, as did we.  It had never struck me before the hurt so many families must experience in August and September with all the "back to school" buzz.  We were hurting, along with other families in our ward in Belfast.  

Oscar's consultant is an incredible man.  So completely dedicated to his goal of helping children struck by this cruel disease achieve the best possible life and best possible outcome they can.  He ALWAYS takes our wishes, priorities, and fears into account, and we feel like we are working as a team with him at all times when it comes to Oscar's care.  We spoke to him after New Year about getting Oscar into school, and after weighing up all the risks and benefits, we all decided that it was the right thing to do.  It all happened really quickly, especially thanks to the amazing support shown to us by Oscar's school.  He began school on Tuesday 7th January, the day after we agreed with his doctor that he could!

We don't really want to share pictures, but this might give you an idea of how handsome our P1 boy is!  If it was possible, Stephen and I wore even prouder smiles than this as we drove him to school on that first morning...

Giving blood

As well as chemotherapy, pain relief, and many other drugs, one of the most important aspects of Oscar's ongoing care is receiving blood and blood platelet transfusions.  A few weeks back we gave a speech to Belfast City Council, explaining our experience of the need for blood donors.  Oscar has received over 30 blood transfusions and almost 140 platelet transfusions in this past 26 months - without them, he simply would not be here.

Belfast City Councillors were moved by the details we shared, and backed a motion raised by Councillor Tierna Cunningham to highlight the need for new and existing blood donors to come forward.  This has resulted in a large blood donation session being held in The Great Hall in Belfast City Hall on Tuesday 21st January.

Use the following link to watch our address to Belfast City Council (6 mins) and the coucillors debate the motion (26 mins):
Belfast City Council Meeting November 2013
We are so hopeful this will be a big success - as well as Oscar's stories, we have seen dozens of other families continue to lead relatively "normal" lives with their children thanks to the availability of blood transfusions.  This includes little children who have health issues other than cancer coming in regularly to receive blood wearing their school uniforms.  If you could see the reality of where and how donated blood gets used in the Children's hospital, we have absolutely no doubt that the existing 6% of people here who are blood donors would be joined by thousands more people.  "Give Blood Save Lives" is not just some marketing ploy used by NI Blood Transfusion Service, it is a reality for many children just like Oscar.  Those ~170 transfusions he has received would not have been possible if people like you hadn't taken time out to help. 

We have absolutely no idea if 50 people or 500 people will turn up to this event, but we hope that by continuing to share Oscar's story many people will be moved to come down and donate blood for the first time, or get back into giving blood regularly.  The event is right in Belfast City Centre, we are hoping many office workers will be able to take 1 hour out of their day to do this good deed.  You get tea and biscuits after you have given blood - what a great way to spend your tea break!  Please encourage colleagues and spread the word.  Use it as an opportunity to have a look around our beautiful City Hall!

To speed up the administration process on the day, you can register in advance by texting 'BLOOD' to 60081 or calling 0500 534 666

If this event turns out to be a huge success, do not be annoyed if there is any delay or you decide to return on another day at a different session - this will be the BEST POSSIBLE OUTCOME for hundreds of little kids just like Oscar!

To find details of many upcoming sessions that may be near you:
NIBTS - where to donate

Irish Blood Transfusion Service
Scottish National BTS
Welsh Blood Service
NHS Blood and Transplant

Thanks for all your continued support and good wishes, we are in no doubt of how much love there is out there for our wee Oscar xxx