Adam goes to school ...

We've had a really good week since returning from Germany. Adam continues to be well; his eating is good, he is sleeping well, and he's started to recover some of the strength he lost during and after the first round of antibodies. We weaned him off the Gabapentin without any noticeable effect. He also carried on taking Lansoprazole (proton-pump inhibitor) whilst still connected to the portable antibody pump, but that's stopped now too. On Thursday he went up to the Royal Marsden to have his pump disconnected, and theoretically have bloods taken to be sent to Germany for testing. It turns out there's been a lack of communication back from the hospital in Greifswald about how they want the blood spun/stored/shipped, so Adam's samples from cycle one are still in the freezer over here. Consequently on Thursday we had standard blood counts done, but nothing else. We are also supposed to have bloods taken, and samples sent, today and next Monday. However, until they get things sorted out there's really no point, so we've had an unexpected day off. It doesn't affect Adam's treatment in any way, though I suppose it may not please the doctors in Germany. Not our fault though, we only found out about the problem incidentally on Thursday. The less time Adam has to spend at the hospital the better as far as we're concerned.

Adam had a visit from his little cousins Eva and Samuel over the weekend. Obviously we don't get to devote a lot of time to social activities these days (for starters we are only at home for two weekends out of every five). We've only been to visit family ourselves once (because we have no family members living nearby) since Adam was diagnosed. So it was nice for my sister and her family to come down at short notice to see us all. It was the first 'normal' weekend we've had in what seems like ages. I took Jake to the England T20 cricket match on Friday evening, and on Sunday we all went to watch Jake play football - the first game of this season that we've been able to go to. My parents also returned home yesterday, after their extended stay in Surrey. Dad did as he was told and took things easy, his nose behaved itself, and thankfully there was no re-return to hospital. Hopefully, that's the end of it now, although I'm not sure how long he's restricted to only cold food and drink!

Adam started his fifth cycle of 13-cis-RA this morning, he finishes the fourteen day course on Sunday before we start the third cycle of immunotherapy. He is re-scanned after round three. We've agreed to do MIBG in the Marsden at the end of October, then MRI and bone marrow tests in Germany when we return for the fourth cycle.

Moving on to the big news of the day ... Adam went to Junior School for the first time this morning. Only for a couple of hours to ease him back in gently, but everything was fine. Term, of course, started whilst he was out having treatment in Germany, but Adam is a veteran at missing school so it mattered not. As long as he is well enough the plan is for him to go to school for the next couple of weeks until we start back out for Germany, albeit he won't be doing full days. This time five weeks ago, after the first cycle of immunotherapy, he had just been diagnosed with pneumonia. So I think we can call that progress.

Hopefully there will be nothing much to report over the next couple of weeks. Adam goes to school, Adam returns from school, Adam eats tea, Adam goes to bed. That sort of thing.

Here are a couple of photos from this morning that will be going in the family album.

All ready to head off for his first day ...

And after he got back home, wasting no time in dispensing with the services of his school tie ...

Although Adam's Appeal has nothing like the impetus that it did in the first half of last year we are still actively raising money so Neuroblastoma Alliance UK can support children, including Adam, to access treatments for neuroblastoma outside of the NHS. At the moment the charity are covering treatment and incidental costs relating to Adam's immunotherapy treatment in Germany. We are still actively seeking to recoup these from NHS Surrey and/or Department Of Health as per last year's parliamentary debate, but I have nothing new to report on that front yet. As I've said before, it's very likely that we will take Adam elsewhere for more treatment once we're done in Germany.

And so to a few thank yous that are in order to finish off this post ...

John & Emile, both members of the British Armed Forces, who ran back-to-back marathons non-stop through the night from Pirbright (where they are both based) to Southsea Pier.

Kevin Bates from my hometown in Norfolk (even though he didn't know it until recently!) who rode from Land's End to John O'Groats, almost entirely in the wind and rain.

Louise and Team Awesome! who completed the wild thing 10k run through water, sand, mud, tunnels and more (http://www.aaa-adventure.co.uk/Home.html).

Thank you all for supporting Adam's Appeal.

P.S. Now that 2Simple Trust has transitioned into Neuroblastoma Alliance UK, we have a new team page on Just Giving. If anybody is interested in raising money for NB Alliance UK in the future, please check us out at http://www.justgiving.com/teams/adamb.

Home (Again) …

We’re back. Journey was (surprise, surprise) long, but relatively uneventful. Apart from getting stuck in a hour long traffic jam in Germany we made good time. We thought the porta-potti was going to get it’s first major outing when Adam announced he needed a poo whilst we were in the middle of said traffic jam. However, once he was sat down he decided it was only a wee. It happened a few times over the latter part of the week so we’re pretty sure it’s something to do with the treatment, or the drugs. He feels as though he wants to go, but after getting into the required position he realises he doesn’t actually need to go. Typically the traffic began moving again at the least convenient moment; so Alison whipped round to assume the driving position, whilst I’m stuck in the back trying to tidy up the portable toilet and slide it back in the cupboard under the seat. After which I’m stuck in the back until our next stop watching Jimmy Neutron with Adam.

We stayed at Ibiz St Niklaas again on the way home, though I’ve downgraded my opinion on it now, and we won’t be staying there again. First time was fine, but unless they can guarantee rooms 401 and 402 I’d give it a miss – unless you’re a smoker. Both times we’ve stopped on the way home the rooms have smelt of smoke. Whether people had been smoking in our actual rooms (they were fitted with smoke alarms?), or elsewhere and it was carried around by the ventilation systems I don’t know. But it’s not pleasant.

Adam continues to do well. We are lowering his dosage of gabapentin gradually, he will be off it altogether by the end of week. His eating was a bit variable on the journey back, but even though we’re doing the best we possibly can, it’s not exactly an ideal environment in which to maintain a strong appetite. When we got home he bounded round the house, and couldn’t wait for Jake & Jessica to get home from school. He went and stood behind a tree outside the front, ready to surprise Jake as he came round the corner. After fifteen minutes of waiting, no sign of Jake, and Adam becoming a little bored, Alison pointed out that my watch was still set for European time and Jake wouldn’t be out of school for another hour yet! Adam wasn’t best pleased with me.

The rest of the afternoon and evening was spent playing, eating, and generally destroying what small semblance of tidiness had previously existed. By the time Adam went to bed, an hour past his normal bedtime considering the time difference between here and Germany, he was absolutely shattered. But his homecoming, much like the second week out in Germany, was in total contrast with the first round. Now to continue like this for the next (almost) three weeks until it’s time to pack up and head out again. Fingers crossed.

There was more drama at home than in Greifswald this time round. Alison’s parents stayed to look after Jake & Jess for the first week, and my parents took over for the second. On Saturday evening Dad developed a nose bleed, but not just any nose bleed. A full-on gushing nose bleed by all accounts. Turns out he’d burst a main blood vessel up there. A trip to Epsom A&E was followed by ambulance transfer to the Royal Surrey Hospital at Guildford. Our neighbours stepped into the breach to look after the kids, and take my Mum up to RSH with clothes, medication and what-not for Dad. Not being local, the lateness of the hour, and being in a bit of a panic, would not have been the best combination had my Mum had to drive herself down there. Meanwhile I’m 800 miles away and pretty helpless, my sole contribution ensuring Jake is able to get to his football match the following morning.

Dad was discharged the following day (Sunday), but just as he was about to turn in for the night the bleeding started up again. Ambulance out, back up to the Royal Surrey for a slightly extended stay this time. I picked him up last night after being discharged for a second time, the offending nasal tear having been bunged for 24 hours, and then cauterized.  He’s got to stay at ours now for a few days, do nothing, and see if that does the trick; if not it’s back in RHS for a full surgical repair.

So many thanks to Clare and Angus for looking after our other two, and sorting Mum out; to the Coombes for sorting Jake out on Sunday; and Sarah for taking Jessica in after school on Monday. Jake did offer to pick Jessica up after school and take her home. I did consider it for a few seconds until Jessica piped in with “Ooo yes I’ll go home, that’ll be great. Me and Jake can fight each other without anybody there to tell us to stop” …

Almost Done …

It’s Sunday morning. Adam is lying in bed playing his Nintendo and watching some American trash on his laptop. But he’s doing well. Yesterday around one thirty his antibody syringe emptied, and a couple of hours later after the remaining couple of millilitres in his line had been flushed through he was disconnected. The portable pump went on and Adam got a new black over-the-shoulder bag to carry around with him. Much better than the one he had last time – it’s all in the strap.

I spent last night at the hotel across the road – special rate on their last single room due to a late cancellation. Same again tonight. I would have no hesitation sleeping in the van again, but we want to get things packed up so that we are away as soon as possible on Monday morning. One of the nurses did say I could sleep here in the hospital, but by that time it was too late. All of the nurses are nice, but some are even nicer. This one had me in stitches when I told her I was staying at the hotel. “Bullshit” she said emphatically.

Shortly after being free of his pump stand Adam got dressed and we all took a walk to the hotel so I could check in. This is the same child who wouldn’t/couldn’t walk as far as the playroom at this (or any other) point during the first round, who had to be transferred to the van in a wheelchair to start the journey home, and who had to be carried to and from the hotel and toilet stops during the eight hundred mile trip back. He even tried to race me back through the hotel to the children’s oncology ward. A sprint down the corridor and one flight of stairs was pushing it a little too far though, and he had to stop for a drink.

The pump will stay on until Thursday when Adam goes up to the Marsden to have it disconnected. He is still taking gabapentin, as he needs to be weaned off it slowly over three or four days.

I’m not getting too carried away, following the first cycle our biggest problems came during the second week after we got home. However, he is in a totally different place this time round as we approach discharge. Had we still got a room at the parents house for the the weekend he would have been out of the hospital yesterday; Alison and Adam are only here because of their very competitive bed and breakfast rates and cooking facilities. Monday morning we’ll have final bloods taken, collect his discharge letter, and then we should be off.

After the first round I honestly couldn’t imagine completing all five cycles of this treatment, in my head I’d already thought that we’d maybe do three and then drop out. Now I’m not saying that I can’t wait to get back out here for round three. It’s the biggest, most complete and utter, pain in the arse that our country still cannot provide this treatment despite working on getting it setup since March of last year. However, I don’t think we’ll be coming out again next time with quite the same trepidation that we did this. Just so long as Adam doesn’t go home and contract pneumonia again, or some other nasty infection we’ll be fine.

Our plan is to get a rental apartment/house for the next round. The pressure on rooms at the parents house is simply too great. There is no doubt it’s the best place to stay in terms of facilities, cost, and the social aspect of being with other families. But with a number of long term occupants we can’t wait until a few days before we are due to come out in order to find out whether or not we have a room. It’ll be more expensive and less convenient to get a place on our own, and no doubt now we’ve made this decision we’ll come out and find there are vacant rooms at the Elternhaus. However, we need to have certainty that we can come out and have somewhere to stay that provides us what we need. So that’s what we’ll do …

All things being well the next update will be posted from (sunny?) England. Yeah!

Keep It Up …

Adam continues to do well. He is a different child compared to the first round. We know, because we’ve seen it ourselves, that even on morphine children (generally) fare better after the first round. However, if it wasn’t for the fact that Adam was connected to his pump stack he’d be almost indistinguishable from his normal self. Actually that’s not strictly true, he is more short-tempered than usual (to the point of throwing things across the room once or twice), which we are attributing to the new pain meds. We have an ultrasound later today to check for fluid, but I don’t expect they’ll find much, if anything. Talking to the doctors they might even start trying the gabapentin during the first cycle in future. Not having to use morphine for pain relief alleviates so many other problems.

Our careful planning has really paid dividends this round. In the words of John "Hannibal" Smith “I love it when a plan comes together”. Even more so given that for (the second week of) round one it was mostly a waste of time. Getting a portable fridge/freezer allowed us to bring more of the organic foods that Adam eats at home, as well as four more cartons of fresh goats milk (which still hasn’t been quite enough). Having used it as a freezer for the trip and first week, we’ve now converted it to a fridge that lets us store a lot more fresh produce than we could possibly fit in the hospital fridge (at least not without becoming very unpopular). And what’s left of the frozen milk and food is now in the hospital freezer. Sorted.

Of course I have no idea what, if anything, this treatment is doing to Adam’s disease burden. Probably very little to what we know is there; the hope is it’s killing NB we can’t see, and what we can see is no longer important. And yes that is as crazy as it sounds, I know that. We are planning to re-scan after round three as part of the treatment protocol. However, since we got back from the first round Adam has complained from time-to-time of tummy ache, mainly at meal times, and most often during breakfast. It’s a throwback to the bad days before he was diagnosed, and we may need to do some further investigations sooner if it carries on. The fear, of course, is that there’s a neuroblastoma related cause. It’s a fear that comes with every ache and pain, but this one has persisted for too long now – although the coincidence with the start of immunotherapy treatment, and Adam contracting pneumonia, provide other very plausible explanations.

On a lighter note, here is a photo of the happy little chap playing on the ipad this morning http://tumblr.adamsappeal.org.

P.S. Only one more IL-2 injection to go and then we’re done with them for this round!

Well ...

... I can honestly say I've had numerous nights sleeping in hospital beds that have been worse than the one I had last night - in the car park. That said the doctor who came in this morning to do Adam's injection did burst my bubble slightly by asking me if I'd slept well, as I looked rather tired around the eyes. And he didn't even know I'd spent the night in my sleeping bag in the back of the van! Adam chalked up one for Family Bird in return by telling him he wanted Dr Lange to do the injection instead - because he was the best. Or rather "Doctour LonGa" as Adam calls him, over-emphasising the 'G' and speaking in the deepest voice he can muster. "Hello Doctour LonGa." is how Adam always greets him now.

Anyway on to much more important matters. The contrast (thus far) in Adam between this cycle and the first could hardly be greater. The difference drugs-wise, of course, is that we're using gabapentin/neurontin instead of morphine for pain relief. Without wishing to jump ahead of myself and tempt fate he has had zero pain (still), but has also eaten well, slept soundly, and been alert and functioning normally during the daytime. The only noticeable effect has been a bout of verbal diarrhoea during the latter part of yesterday afternoon; he couldn't stop talking, and at one point even started jabbering on in some childish baby voice that isn't normally like him. Save for a couple of raised temperatures that have been easily controlled with paracetamol there is nothing else to report.

This morning when I entered the room just before 8am (to shower and change) Adam announced that he had something to show me. Ladies and gentlemen, I present to you Exhibit A, produced in one continuous flow shortly before 7am ...

... no bladder control issues then. [It's 660ml in case you were straining to try and read the scale on the bottle!]

When being admitted to start antibodies yesterday we were a little unfortunate that we didn't get into our room until gone 4 o'clock, as it was being used to administer treatment to two day patients. On the upside it meant we were allocated one of the transplant rooms, which are extremely spacious (although only one parent is permitted to stay still). Ryan and Alexander had both completed their cycles, so were at the hospital to have bloods done and pick up discharge letters. Ryan's family weren't flying back until later in the day so he and Adam had plenty of time to play. Watching the two of them getting on so well together has certainly been a massive positive during this round. In the end it probably turned out quite well that we moved into our room around the same time Ryan's family had to leave for the airport, it provided a natural break for the boys. If Adam remains well in himself this week he's certainly going to miss having Ryan around, as there isn't anybody else for Adam to play with. Mum and Dad are poor substitutes I'm afraid. I'm sure he'll revert to hospital-type and watch his laptop most of the time instead.

As we come towards the end of Tuesday this is what Adam has eaten today; porridge with nuts, banana and grapes; poached eggs with toast, tomatoes, cucumber, and red pepper; roast chicken with yorkshire pudding, boiled potatoes and vegetables; and two bananas 'for pudding'. During the same period in the first cycle he stayed awake long enough to eat some breakfast, but the rest of the time he just slept a morphine-induced sleep.

Returning finally to the ongoing saga of my sleeping arrangements I was asked earlier today where I slept last night - word had obviously got round.

Me: "In the car park"
Nurse: "Nooo" 
Me: "Yeeeessss"

It transpired that somebody has gone home today, so there is now a room free at the Elternhaus until Saturday. So the van won't be required for the next four nights at least. No more curious looks as I draw back the curtains first thing in the morning just as the car park is filling up with people heading into the hospital ...

A Lazy Saturday ...

Adam's had a good day today. Lazy morning, visit to the hospital in the afternoon to play with his new mate Ryan (can't stay away from the place!), and back to the parent's house where he's been playing with Alexander, who I'm happy to report is back to his normal happy self now the morphine is out of his system.

Adam's eaten well, there's been no sign of fever and his legs have not played him up at all, bearing in mind that on this day during the first cycle he didn't want to walk because of the aches and pains.

We made a rather half-hearted attempt to look for somewhere to stay next week, but didn't get very far. We looked at the rental apartments closest to the hospital; they are not the nicest to look at from the outside, and they are also in a rather secluded location so not sure we'd want to leave the van there with lots of stuff in it. I offered to keep the engine running whilst Alison had a quick look inside but she declined. That said there are two Russian families staying there at the moment and they haven't had any problems so we've not ruled it out entirely for future visits.

Personally, as far as next week is concerned, my money is still on the car park.

And on the fifth day ...

Adam has become more feverish today - though still not to the extent that he was during round one (though having written that I've just checked and it's 39.8!) Five days of IL-2 injections done and now we're free until Monday morning when we're admitted for 14.18 antibody. He starts Gabapentin (Neurontin) tonight, and continues through the weekend in order for it to build up in his system. It comes in capsule form so shouldn't be too much of an issue provided Adam is reasonably well in himself.

We have to be out of the parents house by 9am on Monday. Rooms are at an absolute premium at the moment, and it looks as though it's only going to get worse; there are several long-term occupants which leaves very limited availability for the numerous families coming here from abroad for neuroblastoma treatment. In terms of next week the nearest hotel, which has special rates for users of the hospital, is fully booked. The self-catering apartments that are nearby are also fully let. We're not allowed to all stay in the hospital, and I'm not paying €83 per night for a room at an alternative hotel, for what will literally just be somewhere for one of us to sleep. Tomorrow, providing Adam is well enough, we're on a mission to find a place to stay; failing that I'm sleeping in the van in the hospital car park. Seriously. In terms of the next cycle I think we will try and pre-book one of the self-catering apartments. They are slightly more expensive than the parents house, but it's so hit-and-miss with staying here now that it would be better for us to know we are assured of somewhere to stay that has the majority of things we need, than to turn up again and find our only option is a hotel room ... or the camper van!