Sunday, 19 August 2012

#TeamOscar busy busy busy!

I was going to write "why do I never learn, always leaving these updates so far apart that it is difficult to cover what has happened", but the truth is we simply don't have time to cover all that needs done right now.  Which is fantastic, the interest in and support for Oscar's Appeal is absolutely amazing, but we are struggling to keep up.

Stephen is still in full time work, his phone NEVER stops ringing about the appeal, he is running around from A-B-C-A, attending most bucket collections across Belfast, and me and the kids really need him.  I'm doing similar - chasing new leads for the appeal, following up emails and tweets, taking Oscar in and out of hospital for check-ups and blood/platelet transfusions every couple of days, and trying to be a good mum to 2 demanding toddlers.  We have a great team of family and friends who are supporting and helping us with a lot of the tasks, but I don't think anyone really understands how much work is behind the scenes of such an activity.  We have been averaging 4 hours sleep per night, but decided on Friday that it must stop.

We are giving our ALL to this appeal, of course we are, look at what is at stake for us, but taking a step back we know that we need to get back in control.  The harsh reality is that for all we know, these months could be very precious times for us with Oscar and Izzie, and we can't ever look back and wish we had done things differently.  We have been so scared of missing out on an opportunity to fundraise for Oscar's treatment, that we have actually been putting those things ahead of simply spending quality time with him.  It will be so difficult to strike a balance, both these things are vitally important, but we do need to make some changes.

Oscar has been doing AMAZINGLY - he is eating and enjoying food like we would never have imagined a couple of weeks ago.  He is constantly complaining that he is hungry, that the tiger (who roars in his tummy when he is hungry) is back, and asks "what are we going to eat?" every 30mins.  His mobility is still very poor - he can't walk properly, and needs to be in his buggy to get around.  Very weird to think that if he wasn't still (just about!) small enough to fit in his buggy, he would be in a wheelchair.  Izzie is in charge most of the time - she is much stronger, can run faster, and always has the better of him when they fight.  Sometimes she exploits this, and when she is really annoyed with him she tries to pull his feeding tube out of his nose, but at other times she is so gentle and loving - as if she knows he needs her to be careful with him.  We can't leave them alone for 1 minute or all hell breaks loose - I have to put both of them in the bath to even have a shower (in the same room), so EVERYTHING is a lot of work and very tough going right now.

But the main thing is always that Oscar's treatment is continuing and still going in the right direction - we can't ask for anymore than that right now.  We had a radiotherapy consultation last week, and so Oscar is to begin radiotherapy in September which will last around 3 weeks.  This involves general anaesthetic and treatment every day (Mon-Fri), but hopefully no overnight stays.  Sounds like a lot of hard work, but we are used to that with the aggressive treatment plan we are on.  After radiotherapy will come immunotherapy which is what we are fundraising flat-out for, so at least we have a little more time now to reach our target.  There are also lots of side effects of radiotherapy, including it causing future cancers, but as the doctor said - we have no choice.  We get him through this cancer and pick up the pieces afterwards.  The medical professionals and ourselves are all in agreement that we need to throw EVERYTHING we can at this neuroblastoma - it is notoriously difficult to get rid of and Oscar's chances are poor, so nothing can be overlooked.  When I write that it seems normal, but after the end of a long day there are often a lot of tears when we think about the reality of what we are facing.  In truth, the only way we get through it is to not think about it, and that annoying cliche "take one day at a time" becomes so true for us...

To end on a positive note - August has been an amazing month of fundraising for us so far!  We REALLY have seen the good in people in our hour of need.  So many people, groups, businesses willing to help us in any way they can.  We just can't start thanking people publicly as there are so many, and there is no way we want to leave anyone out.  In my next post I'll update you on all our events, with plenty of pics!


  1. Leona & Stephen

    You are both doing a fantastic job with BOTH your gorgeous kids so let us your friends assist you in anyway we can with the Appeals

    God bless you all

    Tommy Melly

  2. I know I'm repeating myself, but you are all an inspiration. Enjoy every second with the kids, everyone is more than happy to do the fundraising. If you need anything you know just to ask. xx

  3. Hi Leona,

    Your little man is such a fighter, he obviously gets it from his parents. I no from personal experience the struggle u r all going through, the hardest thing life will trow at u. I met a lovely couple at the west belfast fleadh raising money for oscars appeal and I offered to help in any way i could.
    I have a small business turning childrens hand prints into little arty keepsakes on canvas. 'Funky Handy Prints' I will b at the Lammas Fair in Ballycastle this monday and tuesday and aim to sell all of the 100 team oscar wristbands that Maire gave me. I also offered to do a canvas print for ur family if u would like. u can contact me anytime through my page an arrange an appointment that suits.

    u's r in my prayers also


  4. Always in our thoughts and prayers. Keep strong just as yous have done. Yous are a inspiration to all around you. God bless you all and hope we can keep the fund raising going. Love Beth and family x x