I remember exactly when Oscar got ill; it was a lovely Sunday in February and he’d played in a football match with the team in the year above him in which he scored three goals. Nothing unusual in that, but I remember Ian saying he had played really badly but had just kept at it. When he got back Oscar went to sleep and didn’t get up for three hours. He missed his tennis lesson and was furious because I didn’t wake him for it, but I just figured that because he never slept during the day he must have needed it.
The next day I got called into school to pick him up because he just wasn’t himself; he was lethargic and very pale. Over the next two weeks we saw GPs and doctors in hospital on seven different occasions before the doctor in A&E finally agreed with me that something wasn’t right. What started with Oscar feeling tired had, over the course of a few days, turned into him falling over with balance issues, being sick when getting up from a lying down position, and keeping his head in a strange upright position even when sleeping (the tumour stopping the fluid in his brain flowing freely down his spine causing a build-up of pressure in his brain). All of which was being put down to a virus by doctors – they saw a tired young boy with parents who pushed their sporty son too much. This of course couldn’t be further from the truth; Oscar pushed himself so hard and we always fought to keep him back and stop him from overdoing it (but proudly so).
I started this month’s blog with the idea of sharing a little more detail around living with the day-to-day reality of a brain tumour. But as I got started I wondered if I needed to go into details of Oscar’s treatment, as surely we can all imagine what it is like. But then I remembered that before Oscar was ill, I would see stories of sick children and think ‘poor child’ – but I would never really understand the full extent of the devastation this disease brings to a child or their family.
You and your entire family end up living from treatment to treatment, blood result to blood result, scan to scan. Siblings have parents who are there but not really there, because any time that’s not spent in hospital is spent cuddling, administering medicines, caring, cleaning them up and sitting in front of a computer researching (just in case there is some miracle treatment out there that’s been missed). Friends are called in to help with basics, and meals happen as and when they can be fitted in. Meal times become focused around what your child can cope with smelling, or what they suddenly feel a need for. Healthy living can easily go out of the window – something we realised after looking at ourselves and the kids and our strange new eating habits months after Oscar died. And it takes a long time to get back into a good routine again!
As I started to recall all the things that Oscar went through in just over a year, I decided that this was something I wanted to write about. We set this charity up to join the ongoing fight to stop other people going through what Oscar did.
So here goes; a small but significant insight into one hell of a year of our lives. One which, if only by pure measure of what he had to go through, surely Oscar deserved to have survived.
It was 23rd February 2013 that I sat in an ambulance to Leeds General Infirmary for the first time – with blue lights and loud sirens – after being told Oscar had a tumour. This was also the first time Oscar had blood taken. Over the course of the next year our little boy went through the following:
- One brain surgery lasting for nine hours – leaving him with an impressive 15 cm scar right down the middle of the back of his head. This was also the first time doctors and nurses had the pleasure of meeting our brave stubborn boy; only two days after that complex brain surgery (which leaves most children with balance issues) he decided to demonstrate to them that he was ok and of course could walk just fine, getting up and walking and then ending his little walk in front of the nurses station with the words “Well, that was certainly a refreshing little walk” – it earned him an early discharge!
- One gastrostomy tube operation to insert his feeding tube through the abdomen – leaving him with an infection under the skin where the tube went in, causing him to scream in pain (one of the only two times he ever screamed through treatment). This was when the real lion mum came out……..and never retreated again.
- One operation to put in his central venous catheter and port to allow for frequent venous access for drugs and bloods– about 30 needles went through his skin into the port alone during that year. He took it like a man every time.
- Three tattoos for radiotherapy precision (though he was asleep so does that count?)
- Four MRI scans (and two CT scans). Each a horrifying 1.5 hrs spent with loud banging noises around you and locked down so you can’t move your head – Oscar hated these.
- 30 radiotherapy sessions under general anaesthetic on 29 consecutive days and on one of these days he had two anaesthetics and treatments in one day. The mask that was created to keep him still made him look like something out of a horror film. The nurses made a mistake when they took the soft mold off him so the next time they put it on him, it stopped him from being able to breathe, which lead to panic attacks. So we moved to general anaesthetic from then on. And yes the room looks like it is taken out of one of those alien laboratory movies. This was when he lost his hair the first time and is also when they burned his ears so badly and kept having to do it. The pain for Oscar was unbearable. It looked like someone had taken a flame torch to his ears – imagine how the insides of his head must have felt and he never complained. Amazing staff, both nurses, doctors and Candlelighters staff at this clinic – to watch children go through that every day and still smile and keep their spirits up must be one of the toughest jobs there is.
- Nine rounds of vincristine chemo over nine weeks – this is when he started having foot drop and needed splints because the nerves in his feet wouldn’t work to lift his feet up when he walked. I personally threw the splints across the floor at least once a week in anger over the pain he was going through to get them on – he patiently waited for when the time would come when he didn’t need them, and chose football themed ones to wear.
- Eight weekends of three different chemo drugs over eight months, each one making him sick and tired – this is when he lost his hair the second time and the foot drop got increasingly worse. He would stay in hospital only for the barest minimum time possible, getting ready to leave as soon as they pulled the drips out and took plasters off (this was usually at 2am). The nurses loved his consistent stubbornness and fighting spirit, and who wouldn’t?
- 177 school days cut short or missed. Obviously not causing physical pain but the mental challenge of not being with his friends and teachers, not being able to play football at school, missing out on everything they were learning about.
- Plasters – too many and too big to even count over that year but hundreds, maybe thousands.
- Kidney function tests every month meaning even more needles and they had to stick him both in his port and in his hand. A small aside – don’t ever use the freeze stuff that’s provided for skin numbing, it hurts more than the needle. I know because Oscar made me try it and I had to sit and pretend it was all fine – it wasn’t!!
- Using a feeding pump for the best part of four months every night and sometimes during the day.
- 687 hours of hospital downtime – thank you for Candlelighters who do amazing work at the LGI for cancer patients
- An immeasurable number of times throwing up
- Three blue light ambulance trips
- One episode with stroke like symptoms
- Five nights of being woken with sharp brain pain
- One day of weird brain function testing – it wasn’t a stroke but a relapse
- One birthday party (his 9th) at Lightwater Valley with his friends coming for a sleepover cancelled
- One very long brain operation to insert an Ommaya reservoir into his brain for intrathecal chemo drugs – they shaved the front of his head after his hair had finally grown back a little, but mostly he was too tired to acknowledge what was happening. Ian and I were in state of shock and functioned by alternating between hope and researching treatments
- Five days of daily intrathecal chemo injections into his brain – and it didn’t even work
- One end of chemo party swapped for a funeral – one big family, friends, teachers and colleagues devastated and marked for life.
- One amazing boy taken from this world by a brain tumour – the reason OSCAR’s PBTC was formed. This must not happen to any more of our children
This month we announced our first big piece of fundraising activity, a charity ball in September. The board and I discussed if this is the right thing to do for a long time – it’s a big leap for a young charity and it’s an event we have to invest a fair amount of our hard-raised money into. And an event in which we all have to work incredibly long hours to make happen. I am asking the trustees to work long hours, after their already long working days, and all for free and using their passion for changing the brain tumour medical arena. When we set the charity up we knew that if we wanted to grow and get national awareness we would need to widen our reach out of our immediate network, and this is our first big step towards doing that.
As we begin to approach businesses and people who don’t know us, explain who we are and what we do, it reminds me of why we set the charity up and the importance of continuing to push ourselves and raise as much money as we can to fight this disease. I’ve seen first hand the devastating effects of brain tumours in children and how hard they have to fight. It’s our hope that the money we raise can go towards new and pioneering treatments that will change things for children in the future so they won’t have to go through what Oscar did. Let’s not let other families suffer like mine has.