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.

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

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.

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!

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.

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.

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.

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.