Greifswald (Cycle I, Episode VII)

The imodium did it’s job yesterday and stopped Adam’s diarrhoea, however come this morning it was back again. Another dose of imodium and things appear to be under control once more.

Adam’s been awake a lot more today, but his temperature has been on the rise and we’ve had to give him paracetamol to bring it back down again. We’ve been told that it’s not unusual for this to happen. His fluids are still up at half rate, but everything else has been stopped, and the antibody is now being infused via the osmotic pump that we’ll take home with us. He’s calling for the wee pot at regular intervals, and since seven o’clock  this morning has passed a rather impressive two litres of urine - which is exactly what the doctors said would happen at this point in time.

So we’re on track to leave tomorrow. They would’ve let us take Adam back to the elternhaus today if we’d wanted to, but we’ve had to give up the inflatable bed as another family needed it. We also have to be back at the hospital at 8am in the morning for a final blood draw to conclude the treatment cycle. So Adam will stay for one more night and then (hopefully and all things being equal) we’ll start the long journey back home.

Greifswald (Cycle I, Episode VI)

It’s eighteen minutes past eight  in the morning here in Greifswald, and Adam is currently on his fourth pair of pants since waking up urgently just after 6am. We have moved into a new (and exciting) phase of antibody side-effects. The pendulum has swung from constipation to diarrhoea, the lactulose supplanted by imodium. The first Adam knows about it is after it’s already happened, it’s that fast. We are gathering a nice collection of soiled underwear in the bathroom to take back to the parents house to wash. At this rate we’ll be needing them again before the day’s out. Forewarned is forearmed, but nobody told us  to ‘bring lots and lots of pants’ before we came out here! One more little thing to note down in preparation for round two; bring suitcase full of pants to therefore ensure we most likely won’t need them.

Just prior to the doctor doing his final ward check yesterday, sometime around 5pm , Adam’s morphine syringe driver started alarming that it was empty. As he hasn’t felt even the slightest twinge of pain since treatment began, it was decided we would try to stop the morphine altogether and see what happened. It’s the withdrawal of the morphine that has, to a large extent, resulted in the diarrhoea he is now experiencing. It is often responsible for constipation by slowing the bowel muscles, and now that it’s been withdrawn things have gone into hyper-drive. Imodium is actually another opioid drug (which I didn’t know until I just looked it up) that also slows things down, but not to the extent that morphine does, and without all the other effects (at least not unless it’s administered in huge doses).

Some of the fluid retention has reduced since Adam came off the morphine, he weighed less this morning than he did last night. Unfortunately, it’s just coming out of the wrong end at the moment. He still looks like he’s been beaten up, however. He’s had no fever for 48 hours now, and his blood pressure is stable, though still on the low side (and lower than what we consider normal for Adam). Over the course of the weekend the fluids and other supporting meds will be taken down, and Adam will then be fitted with an osmotic pump delivering the antibody only. The pump, which is housed in a small shoulder bag, will be his constant companion, day and night, until next Thursday when the infusion ends.

We are still hoping to be discharged and on our way back to England on Monday. It depends on Adam remaining pain-free, how this bout of diarrhoea develops, and whether anything else crops up over the weekend. We will make sure we keep him well hydrated, and well stocked up on clean underpants, the rest is out of our hands. I have a feeling that come Monday it might just be that the Porta Potti we bought for the camper van turns out to be our star purchase.

Greifswald (Cycle I, Episode V)

Adam continues to mostly sleep his morphine induced sleep. He has had more extended periods of wakefulness over the past 24 hours, but still he mostly sleeps. On a positive note he has woken every morning so far and eaten a good breakfast of porridge, banana, and grapes. Made by us, of course; I was asked, and tried to explain, about porridge during a conversation with one of the staff here. Failing dismally, I gave up.

Lunch and tea are not so successful, but he at least eats a small portion of something. It’s an improvement on some children who refuse to eat completely through antibody therapy. Another plus is the fact that he had a poo on both Tuesday and Wednesday. Moving ones bowels is seen as very important, because the morphine in many cases results in constipation. The doctors here don’t like constipation, they are very quick to get the enema kit out if your child hasn’t been for three or four days. We were advised by parents who have gone before us to institute an enema avoidance strategy from day one, so we’ve been quite pleased that he’s managed to ‘go’ of his own accord whilst we’ve been in here.

This morning whilst I was at the elternhaus (parent’s house) the doctors came to take Adam for an ultrasound. He wasn’t very cooperative about moving from his bed, and in the end they brought a wheelchair to transport him in. It was only then that Alison enquired how far they had to go, the answer being ‘next door’. So Adam was wheeled all the way from his room to the adjacent treatment room, but it kept him happy (well relatively). The resultant ultrasound showed that Adam has an accumulation of fluid around his lungs, enlarged lymph nodes in his groin, and a swollen gall bladder. None of which you will be pleased to hear are either particularly remarkable or a cause for major alarm. Unpleasant yes, but unexpected no.

Adam’s blood pressure continues to be low, which is a cause for on-going concern, and thus in need of regular monitoring. Earlier today one of our nurses lowered his morphine rate from 2ml/h to 1.5ml/h (I didn’t even ask!). He remained pain-free for the remainder of the day, and this evening the doctor lowered it still further to 1ml/h. Reduction needs to be gradual to avoid symptoms of withdrawal, and indeed minimize the chance of breakthrough pain. The hydration rate has also been increased by 50% to try and help improve Adam’s blood pressure, but this of course comes at the cost of increased fluid retention. Everything is a balancing act.

All told we can have no complaints so far about the way Adam is being looked after. The doctors are clear and very approachable, and the longer the week has gone on the more we have warmed to the nurses. A few awkward moments when a parent who speaks no German tries to communicate with a nurse who speaks no English, but nothing major. They have almost universally come across as friendly, helpful, caring, and competent. There’s not much more that one can ask for really – those that can speak (or at least understand) a little English are an added bonus!

So we carry on one day at a time; in that way we hope it will not be too much longer before we are able to take Adam back home again, at least for a short while until it’s time to return for the second cycle.

I know that I write almost exclusively about Adam on this site, as opposed to general family stuff, that has been entirely deliberate on my part – it is ‘Adam’s Appeal’ after all. However, the singularly most difficult thing we have experienced thus far has been having to be away from Jake and Jessica. In a different country, separated by a distance of over seven hundred miles. We know they are being well looked after, that’s not an issue. But they are our children too, and we miss them. Skype may be godsend in these circumstances, but it can never be a substitute for all being together as a family under the same roof. By the time we return we will have been away for seventeen days at least. I am so proud of the way all of my children, not just Adam, have dealt with what life has thrown at them over the past two years. I’m not yet sure how we are going to manage the next four cycles but we will have to think about it very carefully in the context of Jake and Jessica, and not just Adam.

P.S. For anybody who hasn’t already noticed, I’ve also been keeping a bit of a photo blog of our time in Greifswald. You can find it at http://tumblr.adamsappeal.org if you are interested.

Greifswald (Cycle I, Episode IV)

Well antibodies have started, and oh boy have they started. We arrived at the hospital shortly before 9am on Monday, late as usual. Adam went straight down for an EEG, and then had another bucket load of blood taken. They take serious amounts of blood in this place, it’s little wonder a lot of the kids end up needing transfusions.

Things started off well enough – we went to the playroom and Adam played with the crane, the train set, he fished a German board game out of one of the cupboards and we played it using our own made up rules. The IL-2 injection, the first of this week, was done in a trice, we have that off to a fine art now. Adam takes a gauze strip and the minute the needle goes in he’s on with the gauze applying pressure. I then take over whilst Adam sorts the plaster out which he then places expertly over the minute puncture wound. Job done. They have a stash of Disney plasters which they’ve been using, and generally they’ve gone down okay with Adam. However, he wasn’t entirely happy at sporting Minnie Mouse on his right thigh yesterday. Mind you, he hasn’t taken her off yet …

Adam was hooked up to the supporting medications which had to run through for several hours before the antibody could be started. Fluids, morphine, metamizole, and ondansetron.  At 2pm the antibody was added to the cocktail. They only access a single hickman line for all the IV drugs, the other is left free for bloods etc.

There are all manner of potential responses to this therapy, Adam’s has been almost continuous sleep, fevers in the high 38 to low 39 degrees, blood pressure as low as 65 / 25, weight gain of more than a kilo due to fluid retention. And we’re only 1.5 days into the infusion. On a trial designed to be more tolerable than the U.S. antibody treatment!

We weren’t under any illusions about the severity of what we were sending Adam into. We also knew to expect things to be particularly bad given this is only the first cycle. Adam’s body hasn’t yet had chance to become accustomed to the treatment regimen, something that tends to happen with most children progressively as they go through each cycle.

All the same, there’s no mitigating how hard it hits you when you begin to witness what your child actually has to go through. Again. On top of everything else you’ve already put them through. All in the name of love, and of hope. With the ultimate of best intentions.

“You’re a gorgeous little boy, Adam” I told him earlier this evening, during one of the brief periods during which he was awake. “I know that already, Dad” he replied earnestly “You’ve told me, like, a million times, before.”

For some of the side-effects it’s difficult to know what’s attributable to morphine, and what is caused by the IL-2 / ch14.18 itself. The sleeping and general malaise is definitely the morphine though. They take an approach here that the dosing starts high enough and early enough to prevent pain (in the majority of children) before it presents itself. Consequently Adam is on 2ml per hour continuously. He has had no pain whatsoever, but part of me would already like to see whether we can lower the morphine a little and get away with it. The upside would be Adam more awake and alert, more freely able to go to the toilet (front and back). The risk, of course, would be breakthrough pain that could not be instantaneously controlled by increasing the morphine back up.

The doctors are staunchly against lowering the level until Thursday at the earliest, especially considering this is just the first cycle. I suppose they’re probably right, they’ve certainly got more experience of this than I have. It’s just tough to watch your child go through what Adam’s going through and not wonder about such things.

Greifswald (Cycle I, Episode III)

Currently sitting in our room as I begin this post, trying to decide what to do with the afternoon whilst waiting for Adam to finish eating his lunch. Adam's plan for us to go to the beach this weekend may have fallen foul of the weather. The heat and sunshine that welcomed us this week has been replaced by cloud-filled skies.

Yesterday we had trips to town, and an out-of-town shopping centre, to stock up on supplies, as nothing here is open on a Sunday. We also took a drive out to a camping and caravan park, although the reality wasn’t quite as appealing as the photos on the website had made out. Maybe it was the decades old permanent caravans that featured heavily in the first couple of hundred yards that got things off to a bad start.

Adam steadily improved over the weekend following his fifth IL-2 shot on Friday morning. Although he was sick once during the course of the day that was the extent of it. I'm pretty sure it was brought on by a combination of getting up too quickly, followed by a bout of coughing. Adam told me he hadn’t felt sick until he stood up.

There were no fevers at all during the weekend, and Adam’s appetite and general demeanour were almost back to pre-treatment levels. All ready to get knocked back again, but that's fine - we'd rather be heading into week two on the back of a good weekend.

His legs have been giving him some trouble. The areas around the five injection sites started to bruise, and he complained of aching and discomfort when walking. Full of sympathy I told him numerous times to man-up, and stop shuffling around like an old man. I even resorted to giving him the odd piggyback, though with hindsight we should have brought the buggy we were given by CLIC Sargent in lieu of a wheelchair early on during treatment, but which we haven’t needed to use since Adam’s recovery from high-dose chemo. Come Sunday morning, however, he left our bedroom and sprinted down the corridor, before stopping and turning to ask me “Dad, can you tell what’s different today?”

As it turned out the weather perked up sufficiently for us to take Adam to the beach after all. He didn’t play with his new beach ball, but he did head straight into the water and have a good old paddle around, before heading back up the beach where he played happily for a good hour or two. It did him the world of good, getting out in the fresh air. He ate well that night, and slept well too. All ready for what was to face  him on Monday, when IL-2 injections were to continue, and 14.18 antibody infusion begin …

Greifswald (Cycle I, Episode II)

Things have followed a similar pattern throughout the course of this week, though the effect of IL-2 on Adam has become progressively worse as the days have past. Off to the hospital at 8am or 9am on alternate days; bloods, weight, blood pressure, and IL-2 injection all with a minimum of fuss. Three or so hours after the injection Adam’s temperature starts to rise and we give him his first paracetamol of the day. He has a little sleep and is then fine again for a few hours until the fever returns. And so it continues until bedtime.

Yesterday, whilst we were stocking up at a local supermarket he complained of feeling sick for the first time, though nothing came of it. Today however, he vomited his breakfast a couple of hours after eating it. Last night was also the most restless he’s had so far, although I knew very little about it until Alison told me this morning. We wait to see what he will be like overnight tonight.

We are now done with the hospital until 8am on Monday morning when Adam will be admitted to start a cocktail of drugs; analgesics, anti-sickness, anti-histamine, in preparation for the antibody infusion. The IL-2 injections will continue as per this week.

How well Adam is feeling in the morning will determine how far afield we venture over the weekend. He wants to go the beach, and keeps telling his Mum we need to buy a beach ball. Oddly enough that wasn’t on our long list of things to bring across with us for the trip …

Greifswald (Cycle I, Episode I)

We arrived here late on Sunday and checked directly into the hotel. The next morning we woke early, the sky was blue, the sun was shining, and so it was straight down to the beach to soak up some sun, and have fun in the sand and sea.

Err, no. Hold on a minute. There must have been a shift in the spacetime continuum. That was an exert from my blog in a parallel dimension that somehow found it's way into this. Best start over ...

We arrived here late on Sunday, it had clearly been raining a lot. We stopped off at the hospital to collect keys and directions to the parent’s house, and then drove the short distance to our accommodation. Having driven up and down the road in near darkness for a good fifteen minutes we eventually stumbled upon the entrance we were looking for. The driveway was swimming in water and we subsequently learnt that the rain had only relented earlier that day having been pretty much non-stop for the best part of three weeks. ‘The worst summer I have ever known’ was how the doctor at the hospital described it. The weather since we’ve arrived has been glorious sunshine, so that’s something I suppose.

The parents house is spacious and more than adequate for our humble needs. There is a shared kitchen, and each room has it’s own kitchenette with fridge and double hob. The only slight downside is that Alison’s message that there would be three off us got lost somewhere between the hospital and the house. Consequently we have been taking it in turns sleeping on a pump up bed on the floor, whilst the other two share a sofa bed. When I say ‘we are taking it in turns’ I mean me and Alison of course. This morning I woke up at 4.30am to find Adam had vacated his side of the sofa bed was occupying the majority of mine instead.

The journey, all 700+ miles of it, was long but fairly stress free. Except that is for a lone incident when we drove away with the camper van roof still raised, and cupboard draws not secured, after stopping off at one of the many ‘pissoirs’ along the 100+ mile stretch of motorway leading to Greifswald. Just as well it’s not the busiest of roads. We left early afternoon on Saturday and had a clear run down to Folkestone and straight on to the Eurotunnel. It wasn’t very busy and we had no problems boarding and getting across to Calais. From there we drove for a couple of hours through France and into Belgium, eventually stopping for the night at Ibiz Sint Niklaas, just before Antwerp. One thing that has been invaluable is Adam’s blue badge, especially when driving a camper van at 2.2m in height. Being unable to use the underground car park it enabled us to park almost directly opposite the hotel, and we’ve since found it equally useful when parking in Greifswald as well.

The hotel (and town itself) was quiet, but very nice. The rooms were good (and cheap!) – the only thing we wanted them for was to sleep in for one night. Slight confusion reigned at check-in when they first offered us two rooms, and then explained the rooms had interconnecting doors. Not in the sense that we understand they weren’t. We figured it out in the end - we had two entirely separate rooms, with a third door that locked across the hallway securing access to both. Adam was quite chuffed to be having a hotel room all of his own.

We planned to be up and away nice and early on Sunday, but it never quite materialized. We gave Adam the choice of having breakfast first or getting some miles on the clock, and he opted for the latter. So an hour or so later we pulled into services and had breakfast. Lunch was cooked in another service station a few hundred miles further up the road; a first for Alison, having never cooked in a car park before. The food was good, but was the scenery wasn’t up to much. Mostly German football fans, stopping off before a game to drink beer and head up into the bushes to empty their bladders. They weren’t paying €0.70 for the pleasure of using the toilets in the service station itself, not even with the promise of a €0.50 voucher towards the cost of a coffee in return.

Adam was an absolutely superstar throughout the entire journey; a journey that began just after 2pm on Saturday afternoon and ended just after 9pm on Sunday evening. We never told him off once throughout. Whether the next nine journeys of a similar length will be the same I doubt have no idea, but it was a good start. We hooked up the laptop to the 12V electric system and he spent the entire time watching his favourite TV programs and movies non-stop.

We were requested to attend the hospital at 9am on Monday morning to start treatment, and we weren’t too late considering we hadn’t got settled until nearly eleven the previous night. Adam had bloods taken (lots and lots and lots of blood), we applied an emla patch to anaesthetise his thigh in preparation for the IL2 injection. and were then taken for an EEG. This was a baseline, he will have them regularly to check for abnormal brain activity caused by the antibody therapy. The injection itself was over in a matter of minutes. Adam was very happy to discover the needle was nothing like as long as his evil father had made it out to be! As long as he was able to get the plaster ready to put over the small puncture wound he was content. The injections are alternated between legs, so by the time we reach the end of next week he’ll have had five in each.

Having arrived at 9am (well I’m calling it 9am anyway), we were done and out again by 11.30am. Alison contrasted it to what we are used to in the UK, and how we seemed to have got a lot done in a short space of time. It was very efficient there’s no doubt, but also the hospital wasn’t exactly a hive of activity. The place is only a few years old, and parts are still under construction (though I am not sure if they are hospital of university buildings). There weren’t a lot of people around at all, and it was all rather serene compared to what we are used to.  The oncology ward, and the immunotherapy treatment in particular, is very multi-national; the other families in the parent’s house are from Israel, Russia, Greece, England, and Turkey.

Today (Tuesday) we were back up at the hospital for 9am again for the second injection. This time we’d already applied the patch before we left. Before the injection itself we were taken down so Adam could have a full body bone density scan. They do this to assess impact of the immunotherapy on bone growth – another of the long long list of possible, though as yet unquantifiable, side-effects. We were out just after 10am. We didn’t pass long lines of people sitting waiting for scans, and x-rays. In fact we didn’t pass anybody sitting in any corridors waiting for anything!

For the first week of only IL2 injections the main side-effects we were warned about were fever, and flu-like symptoms. On Monday afternoon, when we headed out to a nearby shopping centre, Adam did complain that he was tired and wanted to sit down, but that was the extent of the ill effects. Today after leaving the hospital we travelled briefly to a nearby fishing port and beach, before having a walk through the town centre.  When we arrived back at the house Adam started to complain of feeling cold and shivery, and sure enough when Alison checked his temperature it was on the rise. We gave him paracetamol and that got him through lunch. He’s fine at the moment, but we’ll see what the rest of this afternoon and evening brings.

We’re under no illusions, next week is when the serious stuff starts …. we’ve been warned by both doctors and parents alike.