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

No comments:

Post a Comment