Wednesday, 19 September 2012

Radiotherapy gets underway (and all the rest...)

WHAT a month.  Both very good and some very bad.  I honestly don't know where to start - can you imagine trying to go back and write a diary account of your life for this past month?  Where you were, what you did, how you felt... I don't know whether to split it up into separate posts or just do a huge "brain dump" in this one.  Please don't switch off on me, just go and make a cup of tea and have a packet of chocolate digestives to hand before you sit down to read this one...

First and foremost, the most important thing of all - Oscar.  He has been well, REALLY well, during this break in treatment.  He is full of fun, pestering his little sister Izzie, and just BEGINNING to act like any other child his age would/should.  We are trying to build him up again since all that nasty chemo which really took its toll on him.  His favourite foods right now are pure butter, carrot and parsnip mash, porridge and honey, and of course a full fry.  At least McDonalds cheeseburger Happy Meal is no longer a daily request!

11mths old and several hair cuts already!
His finger nails have all fallen off, but are almost completely regrown, and there are hints of hair regrowth!  Most people assume little kids Oscar's age wouldn't be too worried about their hair, but he really misses his.  If we draw pictures with him we MUST draw his spiky hair, when he is getting bathed I have to "wash" his hair, and when Izzie is getting hers dried after their bath I have to dry Oscar's too.  He asks me to do all this, go through all the motions, but will then say things like "I need a new head, this one is no good".  When he first lost his hair he wouldn't look at himself in the mirror, and seemed embarrassed by his appearance.  It is the one thing that has constantly bothered him about all this - he asks almost everyday: "Mummy is my hair coming back yet?"  Of course now everyone knows our little man as he is, everyone new in Oscar's life is shocked by the fact he used to have a mop of thick red hair!  I just CAN'T WAIT to buy gel for him, and run my fingers through it again, and take him to the hairdressers.  Those will be great milestones, because I know it means so much to Oscar.  Come on hair follicles - DO YOUR JOB!

Our fundraising campaign is going AMAZINGLY well - we've said it many times already, and will many times more I'm sure, but the kindness of strangers is unbelievable.  It's surprising the new people who come into your life at times of need, and who quickly become very important and special friends.  Each and every single person who has organised or attended an event, bought a wristband or made a donation, is helping to give us hope of a future for Oscar - that kind of thanks can never be expressed.  But THANK YOU, from the bottom of our hearts.

Oscar has an amazing effect on people - "Oscar is such a friendly and engaging four-year-old.  He's such an inspiration and of such good character" (said Lord Mayor of Belfast, Gavin Robinson).  Others have commented on how "mature" his conversation skills are, how funny he is, and what a sweet nature he has.  He has now 12,500 followers on Twitter - people feel like they know him as we post regular details of his progress (and his antics!), and we feel as though we have a huge army of supporters all helping us get through this awful nightmare.  Some days I even think "Oscar has to get through this, there is no way anything bad can happen him with all these people aware of his story and right behind him", but unfortunately there are no guarantees on this journey, we just have a lot of people sharing our highs and lows and it really really makes a difference.  The positive energy we get from Twitter helps us to get through, and stay positive for Oscar.  But we also like it when, if things are bad, there are people right beside us cursing this world and venting their frustration about what Oscar, and indeed our wee family, has to go through.  So all in all, THANK YOU #TeamOscar, you are doing a great job!

So - we're back to treatment now, radiotherapy started on Monday, and all is well so far.  His liver is the target for this phase of treatment, as that's where the stubborn neuroblastoma still remains.  To think he has come this far - cancer from the top of his skull right through his whole body down to his right ankle - and now just 2 small areas still detected on his liver!  10 months of extremely tough treatment, and our little champ is still winning this battle.  Radiotherapy is expected to make him feel a bit sick, and very tired, but that is is nothing compared to the hell he has endured already.  We just want to keep him comfortable, rested, and well fed, and hopefully nothing too bad will come of this.  Nutrition is a concern apparently, as he may go off his food due to the nausea, but today and yesterday he woke up after anaesthetic and asked for a fry!

His radiotherapy treatment sessions only last minutes, but it is vital he remains totally still so the beams hit the target precisely, and so he is having a general anaesthetic every morning to allow this.  He's enjoying all the fun of being in a different hospital, and the attention he gets from all his new nurses!  He looks forward to seeing "the sleepy doctor" (anaesthetist).  As his body is still tiny, movements caused by breathing, and the "route" the beam takes through his body to reach his liver mean that his lung, bowel, and right kidney are also getting exposure to the radiation.  These are healthy areas of tissue which will now get damaged, there are numerous side effects both immediate and long term for that, including possible future cancers, but we were simply told we don't have a choice.  Everything that can be done needs to be done right now.  The other effect of radiotherapy is that his skin (where the radiation hits) may become very red - like severe sunburn - so we have to put loads of cream on to try to prevent this.  I often think, that in 20 years from now, we'll look back at the best treatments we had available for cancer sufferers, and be disgusted by how crude they were and the damage they caused in the quest for a cure.

I've just realised I've been waffling on, and haven't even got around to talking about what we've been up to!  Oscar had a busy week last week, but it's getting late and I know I won't do it justice if I start trying to talk about it now.  6.30am starts for radiotherapy, research into complex treatment options for Oscar, pushing the Appeal forward as much as we can, running around after 2 (squabbling) toddlers, all the pressures of our situation, "normal" concerns like remembering to submit child tax credit forms on time, grocery shopping, laundry and cleaning - I could bore you to tears moaning about the stresses we are under but I'll stop there! Both me and Stephen are physically, mentally and emotionally exhaused.  20 hour days have been taking their toll, but adrenaline is driving us on, and nothing is going to stop us on our mission to get Oscar well again.  So I'll shut up for now and try to get some sleep - everything else can wait until tomorrow!