Sunday, 31 January 2010

Gavin: A mistake...

Chemo is nasty. Derived essentially from plants, it attacks the actual DNA of your cells, causing some to die and some to become suicide agents, killing other cells they come into contact with rather than multiplying into cancer cells. It isn't clever enough to only target cancer and therefore has an effect on the whole body causing, amongst other things, hair loss, leaking kidneys, heart and blood pressure issues and an extremely serious compromise of your immune system. Sonny is chasing shots of chemo with various drugs that help these side effects. Then more drugs to stop the side effects that those drugs cause. Homeopathy this ain't.
Chemotherapy has to be administered by a nurse who is chemotherapy qualified. Before administering the drug, two nurses have to check hospital numbers, name and date of birth regardless of whether they've looked after Sonny for the last month or not. The chemo is only made up the same day by the cytotoxicity pharmacy to avoid it falling into the wrong hands and arrives on the ward an hour before infusion. The chemo nurse has to wear a mask and gauntlets to administer the drug and double check the rate of flow (how fast or slow it 'drips' into his body) with the other nurse before turning on the machine. In short, every step is taken to protect the patient from what is essentially, DNA poison.
Last night, despite all this, the pump was set to a flow rate less than half of what it should have been in a mistake by the two nurses. Four hours of chemo would have turned into 10 hours. Which means that the chemo would expire and be useless. The second set of chemo, given straight afterwards, would also expire and be redundant.
The night nurse, who we love, spotted the error from the day staff and began trying to rescue the situation. To put this into context (and trust me, only by living this for six months would we ever understand the ramifications) you can't just up the flow and hope its alright. Modifications have to be authorised by doctors who need to get that changed on the system by pharmacy who need to get that approved by cytotoxicity. This is all done across different departments in the hospital on an electronic system that will ensure the same mistake won't happen again. All this was happening at 1am.
The nurse worked wonders. The flow was adjusted to squeeze it in just under a 6 hour cut off point. The doctors arrived to rewrite the protocol so pharmacy would allow the second drug to be administered (and to change when it was made up for the next coming days). Today we have started just an hour early (the chemo needs to be given in alignment with a 24 hour cell cycle to be effective) which manages to readjust the mistake and get everything in under the prescribed time frames.
We have had apologies from one nurse and tears from the actual chemo nurse. We have been sat down with a doctor in a private room to explain what has been adjusted and to thank us for our understanding. Our consultant has been called on his Sunday off and will talk to us tomorrow. An incident report has been filed which will have to be followed up. Two uninvolved nurses have come to apologise for the situation which I'm not sure is a show of solidarity or to separate themselves from the mess. To put this into context, if the flow was incorrectly adjusted up instead of down, he would at best have suffered severe side effects and worst, organ failure.
It's wrong. We trust our consultant and the hospital immeasurably but in reality the life of our little boy is in the hands of nurses who are paid peanuts for the responsibility they hold. Of course, they will make mistakes at work because everyone does, but when we make mistakes the printer jams and we laugh about what twats we are. The bottom line is there are severe failings in the management of a hospital even as high profile as GOSH due to under resourcing and over work. I'd love to finish this off by telling you how my anger at the situation has bought about wholesale reform. But unfortunately that will not change until those controlling the budgets realise the enormous pressures the nursing staff are under in life saving situations.

Saturday, 30 January 2010

Zoe: Feast

Sonny's chemo is going well. Its early days but the huge cocktail of pharmaceuticals seem to have kept the sickness at bay and he is still keeping Strada in business after discovering they offer a take-out service.

But its the food at Anderson Towers that is really giving any restaurant a run for its money. Our delivery angels have been back at work turning up with an amazing temptation of dishes. As well as the delicious food we'd like to thank you for the personal touches you all seem so adept at - from bottles of wine to handwritten menus, some of them take my breath away and they don't half keep you going at the end of a tough day. Thank you x

Friday, 29 January 2010

Gavin: Pot making kettle black

Forgot to report the other day on a fantastic piece of stupidity that deserves a mention. Zoe and Sonny were watching the football when the fire alarm went off and the ward filled with an alarming amount of smoke. Turns out, someone had tried to boil a kettle of water in the microwave. Yep, you read it right... someone filled an electric kettle with water and put it into the microwave to boil it. This exploded, caused a decent fire and got the emergency services out in breathing aparatus. If the kids on this ward didn't have enough to worry about, the threat of evacuating them attached to various drips and chemo loomed large.
The nurses refuse to blab on who it was, but the bloke who throws stones at the moon shouting 'every month this bastard comes back' is high on my list.

Gavin: Here we go...

The biopsy results show plenty of Hodgkins cells, which means there's no miracle change in the disease that would explain why the cancer has regrown. Sonny remains well and, although has had plenty of doctors explaining the long and difficult treatment he's about to undertake, is taking it all in his stride. Tonight we start the new chemo which is administered constantly over five days. From here he'll have chemo more on than off for 14 odd weeks until we start the process of stem cell or bone marrow transplant depending on how the cancer reacts. There has been a certain delay while our consultants get guidance from their European counterparts as Sonny will be the first boy treated at GOSH who has relapsed under treatment. An honour I'd rather hadn't befallen him.
In other news, we went for lunch at Strada which, as the kids say, was the bomb.

Wednesday, 27 January 2010

Zoe: Day release

I'm thrilled to report that Sonny is really rather well at the moment. The steroids have properly kicked in and he has been off the TPN pump (feeding tube) for a whole day. This means that he's free to move around as he doesn't have to push a heavy drip stand around with him wherever he goes. He is so well that he could go downstairs to the Hospital School - only our ward is on 'lockdown' due to an outbreak of some very nasty infections. The whole place smells like a swimming pool while every inch is scrubbed clean and all movement on the ward has been restricted meaning no visitors. Boo. Sonny hasn't been able to leave his room since Monday. So it was a great surprise today to be told that he was free to go out into the real world. We should be getting his new treatment protocol tomorrow and from what I've heard I don't think he'll be up to much once it gets started so within 5 minutes we had his coat on and were out the door. As you can see, the steroids took us to Ciao Bella for a well earned treat, meravigliosa!

Monday, 25 January 2010

Zoe: Blood Pressure

Well, its the start of a new week. With any luck (some would be nice) by Friday we should have the full results of Sonny's biopsy and have started his new treatment protocol.
I don't want to keep harping back to the injustice of last week as we have such a mountain still left to climb but I was pleased when Sonny's consultant let me know that he'd had to make a formal complaint.
Moving forward - Gav, Ruby and I had our blood tested for compatibility this evening. The results will take about 3 weeks. We are the only family members they'll test for a match and if we don't match up he'll be matched to registered donors. Really wish I'd worked a little harder on my argument to add to our perfect brood.

Sunday, 24 January 2010

Gavin: Bedside blog V

Our lovely mate Andy has lent us his mac again, so I'm no longer tapping these entries out on my phone. Predictive text is a wonderful thing, but fraught with danger if you don't go back and correct 'enemas' when you meant 'loads of energy'.
Sonny is doing really well. Although we're aware there's long term issues with high dose steroids, in twelve hours they've dropped his temperature, sorted his potassium level, given him more strength and started him eating again. You realise why they're banned in sport.
Today he has eaten 3 slices of pizza, 4 slices of malt loaf and downed nearly a litre of juice. If The Mighty Arsenal™ had decided to actually travel to The Brittania Stadium today it would have been perfect. They were utterly ship.

Saturday, 23 January 2010

Gavin: Theatre of dreams

Sonny went into theatre this morning at 9am where they successfully took the biopsy and some bone marrow. Our relief (and those of our medical team) is palpable. Despite feeling sore and generally grolly, Sonny is now back in his room under observation. Although this procedure won't give us any miracle cure, it does mean that he can now start steroids which will have a pretty immediate effect on how he feels by reducing his temperatures and sickness.
It will be another week to ten days before we know any results - and that's presuming the sample will actually provide any. The main hurry with getting this done was so he could restart treatment, which is why we're not holding our breath that anything will actually have changed through this little episode.
The picture is of the actual cancer tumor that was removed. I imagined it would be jet black and throw itself against the side of the jar if you got too close, but it actually looks like a bit like a crab stick.

Friday, 22 January 2010

Zoe: Nil by mouth day 3 continued

21.45: Doctor arrrives and has the unpleasant task of telling us that the procedure won't take place tonight.
21.46: Gav swears and I use the word unacceptable in as many different ways as I can think of.
21.48: Doctor goes away to think of plan A, B and C for tomorrow.
22.00: Sonny has a drink and we all find the strength to do it again tomorrow.

Zoe: Nil by mouth day three

05.30: Sonny has his last drink before his biopsy.
10.00: Potassium level 2.4 too low for procedure.
10.30: More potassium infused and levels taken.
12.00: Potassium level 2.8 it needs to be above 3.
12.30: Oncology surgery list close for the week. I lose it.
13.00: Doctors make lots of urgent phone calls to Sonny's consultant.
13.15: Consultant has very big argument with Theatre.
13.30: Consultant and five other doctors come to see Sonny and assure us that everything is being done to make sure the procedure takes place today. Consultant lets on that she's been called 'rude' by theatre staff.
14.00: Another potassium infusion
15.00: Visit from a friends sister who is a high level roaming nurse (CSP). Suggests to our doctor to add Magnesium.
15.30: Magnesium infusion.
16.40: Levels taken and the wait begins again.
18.00: Potassium 3.6.
18.15: Frantic phone calls to theatre.
18.30: Another potassium infusion to ensure it doesn't dip again.
18.35: Procedure scheduled for 10pm tonight.

Thursday, 21 January 2010

Gavin: Assassins need...

Sonny has been bumped off the procedure list again today due to emergencies that take precedence over his. This is obviously terribly frustrating for us and more importantly him, but at least he's not in the sort of state it takes to clear a full day of surgery for. Anyway, tomorrow is Oncology's theatre day which means he's guaranteed to be on that list unless a bus load of kids crash on the M1. Hopefully by lunchtime he should be sore and grumpy with a few stitches in his neck. Which means they can go off and 'light up' the cells to see what the next steps are. Which means we won't know anything for another week except that Sonny will probably have achieved the level of 'Master killer' on Assassins Creed... hence the photo.
Thanks to everyone who has left messages, texted their thoughts and commented on here. It really does mean a lot to us. Got to shoot as Sonny has just requested a yoghurt, which is equivalent to when those explorers first discovered the pyramids or something.

Wednesday, 20 January 2010

Zoe: Nil by mouth

The surgical team visited Sonny late last night and drew a nice fat arrow next to his lump. We were told that he was first on the emergency surgery list pending any other family disasters. This meant nil by mouth from 7.30am. To prepare him for the surgery he was given a big bag of plasma and lots and lots of potassium as his levels still keep dipping. Sonny was cool about the op describing biopsies as 'a walk in the park' but wasn't too happy as all the bags of fluid meant that he spent most of the day sitting on the loo. Couple that with a very dry mouth and being rigged up to his drip stand and wired up to a heart monitor we had one rather unhappy boy on our hands. Anyway, someone was having a worse day than us as we got told to stand down at 6.30pm and they'll try again tomorrow. Sonny gladly shut his eyes for 40 winks so we nipped over the road for a very quick (wet eyed) drink, Happy Birthday Gav, bloody love you x

Tuesday, 19 January 2010

Gavin: Results

We received the results of the PET/CT scan this evening that show Sonny has relapsed under treatment. This means the tumors in his chest have become active again despite chemotherapy and the lumps in his neck are new cancer tumors.
From here he will have a new biopsy to ensure we are fighting the correct disease and begin high-level chemo followed by radiotherapy. To ensure the disease is completely gone, Sonny will then need either a stem cell or bone marrow transplant.
The reasons for this relapse could either be a particularly nasty form of cancer, or cells that have escaped chemotherapy and become more resilient. We are concerned because our consultant is.
We are trying to convince ourselves that Sonny had a life-threatening disease yesterday and he still has one today - nothing has changed in terms of the intricacies of getting him well again. But in all honesty I think we both feel it's time he had a break.

Monday, 18 January 2010

Zoe: News news...

Gavin spotted a new lump on Sonny's neck yesterday. It was Sunday night and after prodding it a bit, the doctor on duty thought it was probably nothing to worry about (not possible). Anyway, Sonny had the lumped looked at by ultrasound this afternoon and on first look another Oncology Consultant agreed with the weekend Doc but said the scans would be sent along to the fancy meeting tomorrow at UCH. This is now taking place in the afternoon so we may not know the outcome until Wednesday morning. Apparently, the results of tomorrow's meeting may be inconclusive - it depends if a lightbulb goes off during the meeting so we have to be prepared that we may be no further forward.

Meanwhile, Sonny's temperatures remain the same. The daily cocktail of antibiotics are giving him diarrhea and he feels too sick to eat anything. He's managed to eat 1 slice of pizza, 2 yoghurts and a bag of Skips since Thursday and the threat of a nasal food tube is looming large on the horizon.

Saturday, 16 January 2010

Gavin: eavesdropping...

I overheard this on my way in today:
Agitated parent: "Please stop using that word as I don't know what it means and I get scared when you say it"
Doctor: "Optimistic? It um, means... positive"

Zoe: Sonny's news

I've just given myself a bit of a talking too and realised my last blog was a little self indulgent. If Sonny was blogging he'd have told you this:

The physio came to see him yesterday and his walking has improved so much that he no longer needs to wear splints in his shoes! This is such amazing news and the physio couldn't quite believe how quickly he's started to recover. She also said that he didn't need to be bandaged into his hot, heavy resting splints in bed each night either unless he's in bed 24/7 which is truly fantastic and definitely worth a mention.

Zoe: Waiting Game

Phew. We are safely back in the bosom of Great Ormond Street. Sonny was sent for another PET scan yesterday but we won't get the results until Tuesday following a Lymphoma MDT (special meeting where clever people share ideas). Although Sonny's consultant has prodded him and said 'there's nothing growing here' we can't move forward until we know its business as usual. Gav remains incredibly positive but I'm going to admit that I'm scared out of my mind and am haunted by the fear. I've lost my 'deep down' primal sense and feel at a loss to trust any of my usual instincts. Hopefully, they will return when they tell us that its just another unexplained infection making him feel hot and rubbish.

Behind the scenes Ruby's been rehearsing hard for a dance competition. I thought my heart was going to bust out of my chest today with pride as I watched her perform on stage with her troupe at Sadlers Wells as part of U.Dance London. She's a super kid and her energy is the best parent medicine on the market.

Thursday, 14 January 2010

Gavin: The facts as we know them.

There are two things they think could be wrong with Sonny:
1) He has relapsed under chemotherapy: This is unlikely in our (and probably more importantly, the Doctor's) opinion. His results to now, despite other illnesses, have been good and this would mean that the tumors have regrown in three weeks despite Hodgkins being a slow growing cancer. We both feel that the Wittington has compared old x-rays and not known the full facts. However, it needs to be followed up and, if correct will change his treatment radically. I'm not sure if we're convincing ourselves that they are wrong because it's difficult to comprehend or, we now feel we know more about Sonny than they do.
2) He has an Infection: This could be anything from EBV (the virus that became glandular fever before), a fungal infection, something bacterial or indeed the cough that seems to be getting worse. The bottom line is, he isn't responding to 4 hourly infusions. And these are some serious what-you-get-when-your-leg-gets-bitten-off-by-a-shark-antibiotics.
So, PET scan tomorrow with results of that and the EBV test on Monday.
My money is on EBV. See you in March.

Wednesday, 13 January 2010

Zoe: Snowed In

We are still in limbo, waiting for a bed to become free at GOSH. We thought we were going to transfer today but the fresh snow means a bed won't be free now until tomorrow morning. While we wait Sonny's temperature is continuing to creep up and up despite regular doses of paracetamol. Its all feeling strangely familiar... Can't wait to get to GOSH and get some answers. They are now saying that they are having technical difficulties with the scans and we can't help feeling we are being fobbed off until we arrive. We're cool with that though as we'd rather hear any news from the horses mouth rather than in a game of medical whispers. Hopefully, no one else will have an emergency bed situation bigger than ours and we'll only have to keep our brave faces on for one more day.

Tuesday, 12 January 2010

Gavin: 12 hours...

9am: Request for a doctor to fill us in on where we are on the monumental news from yesterday
10am: More fussing and grim news. We're not convinced about their thought process and how they are arriving at their prognoses but keep it to ourselves.
11am: Doctor tells us that our consultant at GOSH has reviewed the scans on the CD sent from the Wittington and there is concern about a new growth. PET scans will be booked in when the world leader in tumors arrives tomorrow. A new biopsy will have to be undertaken as well. We know this could mean chest surgery. There is a renewed urgency in a transfer. We collapse.
12 noon: baked beans are served for Sonny twice, after chedder too strong on first go. We're worried our brave faces are starting to show.
1pm: Sonny asleep. We discuss options together and try to reassure ourselves that a new tumor is treatable and not the end of the road. Officially, this is now all too much for us to deal with but we must.
2pm: Temperature, drugs, more shit brave faces.
3pm: We are told that the scans never left the Wittington and that somehow, our consultant is reviewing old scans. Incredibly.
4pm: Zoe drives the CD to GOSH rather than trust the courier. She waits until a doctor opens them up on a PC to be sure. Doctor thinks they look alright.
5pm: Sonny asleep. We discuss the fact that despite incompetence, the tumors may have regrown. Or not. Who know. After 24hours we're shot to pieces. The facts remain that despite industrial strength antibiotics he isn't improving. We'll deal with the idiots later.
6pm: Top gear on Dave, Sonny chirpy. More shit brave faces.
7pm: We're assured of a transfer tomorrow. We can't wait. The nurses here are amazing, treating Sonny with the upmost care because they don't see this very often. the doctors? I'll let you know when we have the facts.
8pm: Dinner with Ruby for her birthday. She has a lovely time despite her brother not being there. You forget that amongst chemo this and cancer that, all the two of them want to do is have a laugh together and celebrate the fun stuff.
9pm: Temperature, drugs, a renewed brave face as we've convinced ourselves we now know more than the doctors do about the outcome. Tomorrow will be another day.

Gavin: doctor, doctor...

It's midnight and I've just been woken up by a doctor telling me they're upping one of Sonny's doses. She then went on to ask if I wanted to change the times it was administered so as to be 'less disturbing'. She failed to see the irony in this.

Monday, 11 January 2010

Zoe: Transfer News

Today was a day of tests. Medical tests and by the time of writing this mental strength too. The doctors here have been in touch with Great Ormond Street since Friday as all their normal tests hadn't revealed anything to treat. Today it was time to delve a little deeper so Sonny had another echo, ultra sound and a CT scan. The echo and ultra sound didn't show any infection but the radiologist thinks he has found a new tumor. We are keeping an open mind. The doctors here haven't seen his latest PET scan which showed a good reduction so we hope they are comparing this new CT scan to their old Xrays. They don't have any of the recent images held by Great Ormond Street. This is where shared care becomes a freaking nightmare as this is monumental news that could be wrong and we are meant to just wait and see. Great Ormond Street are trying to free up a bed but this may take a few days. They'll look at this new scan tomorrow so we should hopefully know more soon - good or bad.

Thankfully, Gav's lovely Mum and Dad are here to make sure Ruby's birthday doesn't get completely sidelined...

Sunday, 10 January 2010

Gavin: A long night...

As they can't find the route of Sonny's infection they are once again resorting to chucking drugs down his line every four hours (the highlights are in the handover notes from me in the picture above). This exhausts him and us, but until they grow something, there's nothing else to do. He is still spiking big temperatures but, in between those is pretty happy. Tomorrow is a Monday which means things should start moving a bit quicker. My advice: Never get ill over a weekend.

Saturday, 9 January 2010

Gavin: the bedside blog IV

The results are in and Sonny's bloods are clear of any bacterial infection. This means it's likely to be viral and will work its way out in time. The great news is it means nothing is wrong with his hickman line, so that can stay put. Sonny is quiet and having the odd spike in temperature but happy watching The Mighty Arsenal - the only game on soccer saturday with the remarkable Geoff Stelling due to the 1cm of snow that's still bringing the country to a standstill.
Finally, a quick word on the nurses here who are all fantastic. The hospital may not quite befit a 4 times Mayor of London (yes, that Dick Whittington) but the care here certainly does.

Friday, 8 January 2010

Zoe: Bedside Blog III

Sonny's blood markers still indicate an infection but we won't have the results of the blood cultures back until tomorrow morning. Sonny's Doc is very frustrated... the blood cultures take 48 hours but as Sonny was admitted in the evening everybody from the lab would have gone home so his bloods wouldn't have been entered onto the system until the following morning - making him have to spend a potentially needless night in hospital. The Doc would like me to write to our MP to tell them how stupid it all is, the cost of patients spending extra nights in hospital compared to lab technicians working through the night kinda argument. I'm not as worked up about it as our Doc as I don't have to live with this situation every day. I'm just happy that Sonny is pretty ok and that we are having 'going home' discussions.

In the meantime poor Ruby is freaking out... its her birthday party tomorrow and she's worried its all going to get spoilt. I'll make sure we have fun but I can't see it being quite the hotbed of chaos that normally reigns supreme unless... Sonny can be kept here for another night... only joking!

Thursday, 7 January 2010

Gavin: Quick update

Sonny looks to be spending the next couple of nights in hospital. He's pretty chirpy but keeps spiking a temperature so they'll keep an eye on him and wait for blood results to come back to see if anything nasty is growing in him. He's eating and chatty and not in any pain so fingers crossed it will be another unexplained virus. 48 hour results won't be until 6pm Friday and no doubt all the doctors will have gone by then so I suspect Saturday at the earliest for a return home.

Wednesday, 6 January 2010

Gavin: Back in...

Just got back from the Whittington where I've left Zoe and Sonny. His temperature started around 3.30pm and, despite fluctuating never really went down, so we packed a bag and off we went. I've just had a text saying the drugs are now going in and they're off for chest x-rays. Sonny is very upset as it really is the last place any of us wanted to be. The emotional strain of not knowing what's coming next is starting to take its toll on us all and we're hoping we can have a stretch soon where he stays well and is out of the woods.

Tuesday, 5 January 2010

Zoe: Cool 4 Skool

Sonny went back to school today folks. To be able to go back at the start of a term when new things are kicking off is brilliant and it has given him a real boost. Avid readers will know that things have been good for some time now. He has lots more energy, the sickness is under control and he is getting about with much more confidence and agility (all good stuff). As before, we are taking it one day at a time but our plan is for him to try and get in every morning and then to come home for lunch, physio and a game of FIFA '10 before picking up Ruby.

In the meantime the news is full of snow chaos. Personally, we've had our fill of duvet days at Anderson Towers so if school is closed it will be a real anti-climax. No fluffy stuff so far...

Monday, 4 January 2010

Gavin: A question of taste

Sonny's taste buds are playing havoc with what he can and can't eat. Generally, it's sweet and fatty stuff that he can't abide, turning his nose up at The Fine Burger Co on Upper Street when I shouted up a New Years Day lunch. There's a theory that your body only craves stuff that can help it but I'm not sure where Haribo fits into that argument.
Anyway, he's latest craving is noodles, so we've bought an oriental cook book and took a trip to Chinatown to get all the interesting ingredients needed for tonights Duck breast soup. I'm so pleased my wife could easily be a masterchef contender.
In other news, he's doing really well. No temperatures mean no trips to the Shittingdon and his feet seem so much better every day. A return to school tomorrow is on the cards and, friends are now coming round regularly to play. This improvement is more than we could hope for.
I have to go now as the kids are playing Rock Band with chopsticks on their glasses and driving us mental. Sayonara.

Sunday, 3 January 2010

Ruby: Pied Piper

Today we went to see a hip hop dance thing of the pied piper. It was really cool they made it so he could dance and fight at the same time. Instead of fighting rats he fought vampires, mosquitos and vipers but the Asbos are the rats.
I really loved it and I hope I go to see it again!

Friday, 1 January 2010