Wednesday, 30 September 2009

Gavin: A future in medicine

Last night was a funny one. When I arrived Zoe wasn't happy with the various different consultants telling her different things that related to their own different speciality. Sonny was having a CT scan and an endoscopy (camera down the throat to take some biopsies) today despite thinking that glandular fever was causing the temperatures and being on a course of drugs to cure that. We sat down with one of the consultants we know and basically told him that we didn't think it was right to put Sonny through 2 major things in a day when we hadn't given the drugs chance to work. Although Zoe had signed consent for the endoscopy, we asked for the procedure not to go ahead. Remarkably, they thought it was a good idea, were happy for him not to have it and agreed with our thinking. I was pleased, but a bit shocked. I mean these decisions aren't for me to make and to be honest, I thought I'd be told to shut up in the nicest possible way. The Gastro Specialist has seen me this morning and also agreed, saying the procedure will now take place on Monday if nothing else seems to be having an effect. I'm now scared that we've done the wrong thing but equally pleased that you do seem to carry a big voice in his own well-being. There is obviously room for love, care and attention amongst the Aciclovir and Daunarubicin. I am now practicing in the mirror with a stethoscope and considering a major career change.

Tuesday, 29 September 2009

Zoe: Glandular Fever

It turns out that the crazy temperatures are to do with Sonny having glandular fever. I never imagined I'd be pleased to hear that. They are giving him some medication for this today and will continue to give him this once a week until tests show he no longer has it. Lots of hoo ha about this drug - we have to have a nurse with us at all times in case of allergic reaction so quite tense watching his vital signs flicker up and down on the monitor for 2 1/2 hours trying to ignore the urge to use the en-suite. It makes me think back to when we were in Italy when he was monitored 24/7 and switched our pillows around on the bed so we could stare at the screen all night.

Sonny just started to cough and all hell let loose as he thought he was having an allergic reaction but turns out it was just a tickle and we can continue... hopefully he'll start to feel a bit better in a few days.

Monday, 28 September 2009

Zoe: Side effects

Some kids sail through their treatment protocols apparently... unfortunately, Sonny isn't one of them. His chemotherapy protocol is hard core by anyone's standards, sometimes enduring 3 types of chemo a day over a 6 month period. I get a strangely comforting feeling each time one is completed and I can tick it off - like a to do list in the weeks before Christmas. Gavin and I actually hi-fived each other in Italy when he started treatment, we've never hi-fived before, but the sense of getting this thing licked was too over-powering. They talk about possible side-effects. The one thing they say WILL happen is hair loss but the others are glossed over in a may not happen kinda way. If you looked up side effects of chemo in the dictionary, there would be a picture of Sonny as the poor chap seems to get every last one of them and one thing has lead to another and to say he has been having a rough time would be a understatement: constipation from chemo, morphine from passing his mass through his kidney which causes constipation, typhlitis- an infection of the bowel caused by drugs thinning the bowel, diarrhoe, rocket high temperatures and now glandular fever which has been lying dormant in his beautiful body only surfacing now when he is too weak to fight it off. We spent two weeks praying for a pooh and I've now spent 1 week delivering pots of tea-like pooh to the sluice room to be measured against his fluid intake. Meanwhile his dictated daily protocol of chemo has been put on hold while a whole side of the hospital we never thought we'd meet tries to work out what the hell is wrong with him and how they can make him more comfortable. Tomorrow we will meet the gastro team - I like the sound of them. My favourites so far apart from the amazing cancer curing team are the surgical team who arrive very early while you are in your pyjamas and hunt in packs of 10 and the Pain Team - what a job title! They have been amazing providing Sonny with much needed pain relief that wasn't going to bung him up in the form of Ketamin, handily dispersed by a hand-held pump. I'll never forget the relief of the first night of him being pain free for an hour at a time punctuated with 20 mins of scream-out-loud-mummy pain after 3 days and nights of being unable to offer him anything more than paracetamol and breathing methods last used to deliver him. All the time seeing other children whizzing past the window on scooters... the ones who sail through chemo grrr.

Sunday, 27 September 2009

Gavin: Celebrity Visitor

We've had two since Sonny's been at GOSH if you don't count the clowns that come round regularly. I go a bit red with the clowns and have to leave. They're brilliant and Sonny loves them but I find it all a bit embarrassing and have to go for a fag - It's my problem not theirs.

Anyway, the first was on the outpatients ward (oh... remember those days) and we had a visit from Batista. Nope, me neither. Or Sonny. Or anyone else in the hospital who doesn't follow WWF wrestling. Which is why we think he came in, had his photo taken and left. He was simply sick of people saying "roll over and have your picture taken with The Barista darling". Which is our excuse to why he was rubbish. On the flight over he could have learnt a couple of phrases like"let's get this cancer in a double nelson and beat it together" or "when I fought Stone Cold Steve Austin it was as damn near tough as Lymphoma". But he didn't; He leant near Sonny (who I thought did a pretty good job of hiding his bemusement) and had a photo. Then left. That's it. Honestly, if he hadn't made me look like Mr Bean I'd have had words.

I'll let Zoe tell you about Gary Barlow...

Zoe: The diagnosis

Sonny's got cancer. We found out while we were on holiday in Italy. I'd known he wasn't himself for a while but I kept thinking that my withdrawn boy was grieving for his grandad and that maybe he was even depressed... I couldn't understand why he didn't want to swim in the sea and how come this boy who hated the sun was suddenly happy to lie on a sun lounger reading book after book rather than kick a ball on the sand. God he was getting thin. Turns out he has cancer. The simple cottage hospital in the depth of the beautiful Italian countryside suggested taking him to a paediatric hospital 30km away - Sonny helped me find it. They swooped on him 'the little pale English boy' and gravely told me he had pneumonia - a very large pneumonia. Within minutes he was receiving antibiotics, being shown to our room and I was feeling vaguely releived. X rays were done and a doctor popped in and mentioned something about lymph nodes... Gavin had booked the next flight out as I'd need help looking after Ruby - they were bound to keep him in for a few days.

Sonny was really sick. We were both alarmed about the depth of his vomiting. The days are a blur but Gav arrived and as he left to look after Ruby we had to go and have some more tests done - an ultrasound and more x rays. I was then asked to sit in a room I hadn't seen before, one with cushions and tissues and my head began to roar in pain as,between their clumsy English and my basic Italian, they revealed that Sonny had lymphoma. Lymphoma sounds bad, sounds like cancer. They were saying my nine year old superstar wonder kid had cancer.

Thank god for holiday insurance - First Assist if you are interested. Flights home were hastily arranged via an air ambulance and family and friends were frantically informed. But then we had a telephone call from Great Ormond Street Hospital in London to say that Sonny wasn't well enough to travel home and that we'd be transferred in the morning to Pesaro, 150km away.

The next 10 days were horrendous. We had to digest the awfulness of Sonny's diagnosis. We didn't speak anything more than basic restaurant Italian. Our son had a life threatening disease and it was too dangerous to fly him home, we were in Italy a long way from our holiday house and we had a houseful of people arriving, or yet to arrive on holiday. Great Ormond Street were simply amazing - they were on the phone 'just checking you were ok' but the Italian specialists were wanting to do procedures involving general anaesthetics that the team at GOSH had reservations about. This was the land of head fuck central and our boy was at the centre of it. After much heartache and tears we put our foot down and demanded that they follow the advice of GOSH to begin steriod treatment for Tcell Lymphoma to shrink the mass to enable Sonny to fly home - in a bloomin' Lear Jet.

Gavin: The first of many...

So, here we are... the first post of the new blog that will hopefully keep everyone up to date with what's happening with Sonny. We're a bit behind as obviously he's been at GOSH for around six weeks now so there may be a bit of repetition and stuff you know already but, we're new to all this new fangled myface stuff, so give us a break. We've decided to head up each post with whoever's blooging so 'Gavin: Celebrity Visitors' will unsurprisingly be from me and 'Zoe: the diagnosis'... yep, you get it. Zoe will give you the proper updates and I'll twitter on with observations. Rube's and Sonny will both blog too and we won't edit them.. it's free speech after all. If we get good at this and get a few followers we may even stick up some photos too (when we've learnt HTML obviously). Anyway, hopefully this will let a few of you know where we are and, if you've stumbled on this (I expect it will be number one in google in the next few weeks) will give you a real life view of what it's like to hear the news that your son has cancer...