A new plan (of sorts) ...

After much consideration we've got (the start of) a new plan (of sorts) worked out. Adam will head to the Marsden Monday to Friday next week for a different chemo combination - cyclophosphamide and topotecan for those who are interested in such details. This is a more potent mix than the combination we've just done two rounds of, but at this point we don't have much choice. We don't quite know what effect it will have on Adam's already fragile bone marrow, but it's possible he'll end up being neutropenic and in need of blood and/or platelet transfusions. Any fever and we'll be back up to Epsom General waiting on blood cultures. Feels like we're going back to the dark ages. I guess we are. Adam's bone marrow is a particular source of worry, since his blood counts are likely being affected by the amount of disease. Any further progression could have profound consequences, notwithstanding the bone marrow suppression caused by the chemotherapy. We need adequate blood counts for Adam to be eligible for clinical trials. As Phase I trials evaluate side-effects rather than efficacy they exclude children whose counts are already low, as it would then be impossible to assess the impact of the new treatment.

We're planning to use the recovery period after this chemo to decide where to go, and what to do, next. There are a few options, but it's not exactly easy interacting with doctors across the Atlantic. At least I've not been finding it easy, but maybe it's just me. So Plan B is to simply put Adam on a plane, take him to the US, visit a few doctors and make a decision after that.

There is a chance we'll stay in the UK. For a 2nd round of this chemotherapy combination, and possibly for a new Phase I trial that is due to 'open soon' at the Marsden. There are 3 existing Phase I trials, none of which sound particularly promising to me. The new trial is a combination of drugs on 2 of those 3 trials. The only problem is 'open soon', which in oncology speak translates to 'is planned and will be open when it's open'. It's a drug company sponsored trial across multiple centres worldwide, so I think the first the Marsden will know it's open for enrolment is when they get notification from the central coordination unit. It's not actually something over which they have any direct control.

Last night, after he came out of the bath, I told Adam he would be starting treatment again at the Marsden on Monday. He counted out how many days that was, and was overjoyed that he had four whole days left until he had to go back to hospital. His reaction when I told him his hair was likely to fall out again was the polar opposite. He cried. He doesn't want his hair to fall out. He loves his hair. We'd been chatting a few minutes earlier about how Wednesday would be his shower night. Our broken shower unit had (finally) been fixed yesterday, and it was the first time he'd used the 'disco' shower head that Ryan bought him a while back. Now you may be asking yourself what I was doing telling him he was probably going to lose his hair straight after he'd told me how great it was that Wednesday night was going to be shower night from now on. I simply say to you that there is no good time to deliver shit fucking news. It 'felt' like an opportunity to broach the subject. Or maybe I just couldn't bring myself to play along with him at that particular moment. I felt awful of course, but somebody had to do it.

Adam being Adam, and me being me, his state of deep despair lasted approximately two minutes. What he hates most about his hair coming out, he said, is that bits get left on his pillow and it feels itchy. So Mum has been instructed to buy a dozen new pillowcases and Adam will be having a fresh one every night for as long as he pleases. He'll also be selecting a new range of headwear to add to his already burgeoning collection. And last, but by no means least, he gets to cut his Dad's hair any way he wants. And that, though I'm not quite sure how given he doesn't watch football, means you should not be surprised to find me sporting a Mario Balotelli look this time next week. And do you know what? The prospect does not bother me one iota …

Results ….

Adam's scan results were not those that we had hoped for. His response to the two rounds of chemotherapy has been mixed, and mixed simply isn't good enough. Although the diseased soft-tissue lymph node has shrunk, the widespread skeletal disease has further worsened. We are in the midst of formulating a new plan. As I type Alison is at the US Embassy in London trying to secure a visa for herself and Adam. At least nobody will be stealing her phone on this trip into London … she's not allowed to take one. Or any other electrical equipment for that matter.

Adam remains well in himself. He is pain-free, eating and sleeping is pretty normal. For that, I suppose, we must be thankful.

Crazy … Golf ...

Adam has gone off to play crazy golf this afternoon. Again. We had a trip to Devon at the weekend to visit Ryan, and on Sunday drove to Teignmouth where we enjoyed a very friendly, non-competitive, round of crazy golf. Which I won - whilst also notching up two holes-in-one in the process. Afterwards the kids decided to have a game of chicken with the incoming tide. Adam pushed his luck a little too far, ending up soaked from the waist down, and spending the journey back to Exeter in his underpants. Jake was away on a cricket trip, but Adam, Jess & Ryan had a great weekend. X-box, park, football, waves, crazy golf, power rangers, bouncy castle, Come Dine with Jess & Adam (after Ryan had gone to bed). Considering Ryan had only finished chemo on the Friday he was full of beans. It's great to see them all getting along so well. We've been meaning to get down to visit Family Edwards for ages - they've been to Epsom several times now, both en-route to Greifswald for immunotherapy and a few weeks ago for a weekend trip. But with both Ryan and Adam on chemo, and Jake having football tournaments, club cricket or school cricket this was the first opportunity we've had to pay a reciprocal visit. The journey back home was rubbish, problems on the A30, problems on the A303, problems on the M3. The only good thing to come of this was I missed most of the football.

Yesterday Adam and him Mum took a trip to Wimbledon to do a spot of shopping, and today Adam was up at the Marsden for an MIBG injection. MRI scan is tomorrow at 9, MIBG at 11. Results at the end of the week. Pointless dwelling on what might be. Tomorrow is Wednesday, another day in the life …

Boredom ...

Adam's biggest problem at the moment is boredom. "Dad, you have to work and Mum is always busy with things to do. And I don't like playing on my own." It's a tough one. The solution next week will hopefully be for Adam to attend school for the first time in a long time. Unfortunately, Tuesday and Wednesday are already ruled out in that regard because of MIBG injection on Tuesday (which will make him radioactive), and MRI scan followed by MIBG scan on Wednesday. I suppose we'll muddle through as best we can, same as we have been these past years. How quickly things change; not so long ago Adam was attending school regularly, cricket on Friday nights. And then bang, back in the fight, chemo in, cricket out, side-effect management instead of schooling. Then again we don't really reflect or dwell on such things, we simply get on with it. Just as well, it'd probably send us insane otherwise.

We're hoping to see little Ryan this weekend. And Julie & Gareth of course. They're currently fundraising to take Ryan to Tuebingen for a haploidentical transplant - you can catch up with their appeal here. Adam and Ryan get on so well, have done since they first got together out in Germany. Ryan is just 5-years-old, and although he is a little boy through-and-through full of playful cheek, he's amazingly grown-up at the same time.

Here's a photo of the two of them 'sharing a moment' during antibody therapy out in Germany.

Adam & Ryan in Greifswald, October 2011

Thursday II ...

It's not all doom and gloom. Adam's had a good day. His diarrhoea seems to have passed given the toilet inspection I conducted earlier. Eating has been better today; back to porridge for breakfast, and finished his tea without needing very much encouragement. Blood counts are low, though still well above the levels at which transfusions are required. This should be the low point of the cycle, so we hope to see an upturn from here.

Despite the variable (rubbish) weather, Adam and his Mum went to Chessington for a few hours today. Put Adam in good spirits, gave Jessica the right hump, "How come Adam gets to go to Chessington whilst I'm stuck in school DOING A TEST?" The two of them spent the evening playing Club Penguin, and then Adam went back into his cabin bed for the first time since his portacath was inserted over a month ago. We shall see what kind of night he has ...

Thursday ...

Adam was a little late to bed last night so he slept in and woke up after both Jake and Jessica had gone to school. Usually he's pretty pissed off when this happens, but this morning he's in good spirits despite the fact. We finished the second round of chemotherapy last week and, as with the first, Adam tolerated it well. Aside from some nausea - he does this thing where he feels 'a little sick' and has to spend up to half-an-hour with his head over a bowl spitting saliva into it - he was very well. His eating was more-or-less normal.

He's experienced a few more adverse effects this week. More nausea during the earlier part of the week, though sick just once, mild diarrhoea that is only now beginning to resolve itself, and the odd bout of stomach cramps which is probably the most unpleasant of all. His appetite has been on the wain, but we're hoping this will pick up towards the end of the week, following a similar pattern to the first round.

Next week we have MIBG and MRI scans to see what effect, if any, the two rounds of chemo has had on Adam's disease progression. To say we really need this to have done some good is a colossal understatement.

I just sat ...

Today has been one of those days. It wasn't a particularly extraordinary day. Sure it was Father's day, but to be honest we've never been a family that makes a huge fuss over such occasions. Whilst Alison took Jake to play cricket, I went with Adam and Jess to their school's summer fair. On one hand it was nice to be there, watching the kids having fun, enjoying some good weather for a change. And on the other I couldn't really have cared less. I looked around and saw faces of people I knew, people I haven't spoken to for a long time, people who have done a lot for our family, and the only thing that went through my head was a desire not to talk to any of them. My life is so consumed by Adam's illness, it dominates thoughts almost every minute of every day; sometimes it simply becomes the last thing on earth I want to talk about. Particularly with people who cannot know the hellishness of our situation. It doesn't matter what else comes up in conversation, Adam inevitably will. And on days like today it's all too much, so the only thing to do is hide away from the world and let it pass. A bit hard when you're in the middle of a school fair, so instead I just found a bench, parked myself on it … and sat. If you saw me today and thought I was being rather unsociable then I'm sorry, but sometimes needs must. Most times I'm more than happy to talk about Adam; it's nice for people to ask how he's doing, how we're all doing. And then there are days, rare though they are, like today.

As for Adamski himself, he's doing okay, all things considered. I'll put together a proper update in the next couple of days, when I'm ready to talk about him again …