UCH - Day Three

Today was a tough day. Adam went down for his post administration scans. He was a brilliant little chap, laid completely still for the full hour and a bit of MIBG, TOMO and CT scans. Together these will give the most complete picture of Adam's disease, a full 3-dimensional image map. I hate scans. I can't imagine any NB parents that don't hate scans. It's a dichotomy of deep foreboding coupled with a need to be relaxed and settle one's child down so they will lie motionless for the requisite length of time. It never gets any easier. I've reached a point where I feel compelled to watch the image as it appears on the screen, but at the same time I really don't want to see it. And so today I sat in front of the monitor and watched various areas of his little body light up the screen without knowing for certain what I was looking at. The official report is unlikely to be available until next week.

Just before lunchtime Adam was taken off his 24-hour hydration, which now means he has more freedom to move around within his room. It took three attempts to get Adam to his scans on the 5th floor (we are on the 11th). Problems with the lifts caused long delays and 'radioactive boy' (as Adam calls himself) couldn't be left out in an uncontrolled area. Allegedly. When we got down to Nuclear Medicine they were either unaware that Adam had high-dose MIBG rather than the normal scan dose, they knew something everybody else didn't about the risk of radioactive contamination, or they just didn't care.

After a shower, change of pyjamas and clean bedclothes he was feeling quite refreshed. I even went into his room for a little game on the Nintendo Wii, albeit with the lead-lined metal screen between us. He beat me at bowling and tennis - I let him win of course.

Tomorrow we find out whether we will be allowed to take Adam out of the hospital for an hour or so over the weekend. The radiation levels in the room don't seem to be receding very quickly so we're not getting our hopes up. More drinking and more showering required. The radioactive agent is excreted in urine and through the skin.

UCH - Day Two

Adam spent the morning in the ward playroom playing the PS3 and doing arts and crafts. At midday we returned to Room 2 so the nurse could put up his pre-hydration. Around 2:30 four people in white coats came up to the ward to administer Adam's MIBG infusion. Around 20 minutes later it was all done. The white coats packed up their equipment and trundled back up the corridor from whence they came. The door to Adam's room slid gently across until it was fully closed and he settled down for a week or more of solitary confinement.

Each hour we take a 60 second reading of the radioactivity coming from Adam, and it's this reading that will determine when he can leave the room, when he can leave the hospital for some outside air (I hesitate to call it 'fresh' - this is Central London), and when he can come home again. On entering the room Alison and I must don plastic apron, gloves and overshoes. We also take in a counter that measures the radiation levels to which we are exposed whilst in the room. On leaving we remove the protective items and place them in the yellow bin, close the protective door, and note down the time that we entered the room, and the counter reading on entry and exit. That's how it will be for the next 7 days or so.

Tomorrow Adam will undergo scans. 

UCH - Day One

As I write this I am sat in rented accommodation in the West End of London. Adam is spending his first night on the 11th floor of University College Hospital. Alison is there also, in an adjoining alcove with a pull curtain. I can't describe it as a room. Jake and Jessica are back in Epsom being looked after by grandparents.

Tomorrow Adam's treatment begins. Except for the isolation we are not expecting it to be too much of an ordeal. Will it do any good? Only time will tell. We hope so. With every fiber of our bodies, we hope so.

The best laid plans and all that...

Ask any parent of a child with Neuroblastoma and they'll tell you the same thing. Plan at your peril. Of course I already knew this myself as Adam has been battling this disease for 14 months now. Whilst we are still a long way off veteran status we have been in this particular boat long enough to understand it's path is neither predictable nor steady.

At the moment we are supposed to be into day 4 of our first week at UCH. We're not. We're still at home. The hospital called us on Monday to apologetically inform us that Adam would not be able to be admitted the following day as they were unable to organise sufficient levels of nursing cover for the weekend period. They assured us that everything would definitely be fine for Adam's treatment to take place next week instead. I wasn't very pleased, but what could I do? Shoot the messenger, or in this particular case the radiographer who drew the short straw and phoned to let us know?

Unfortunately we'd planned. My parents had travelled down from Norfolk to look after the kids for the week. They arrived a couple of hours before we got the phone call from UCH. I'd booked a serviced apartment off Regent's Park for a week so we would have a base near the hospital from which to prepare fresh food and drink for Adam, and somewhere for me to sleep. After surgery he lost 3 kilos in weight and it showed. Not having any idea of what the catering facilities at UCH were like, and given that the parent facilities consisted of a microwave oven, we decided that getting an apartment nearby was the best option. I'm sure I don't need to tell you what the cancellation policy was one day before arrival.

We'd also started to make plans for the following weeks too; when Adam would be away with Alison, then back at UCH, and then at the Marsden for high-dose. Everything would now be shifted by a week. I had another apartment lined up for the second round of MIBG therapy, but fortunately that booking hadn't yet been confirmed and no money had changed hands.

The date of Adam's treatment at UCH isn't the only thing that's changed since my last post. The whole treatment schedule has been re-evaluated by his doctors. The fact is that Adam is at the boundary of what medicine has to offer, certainly in the UK. High-dose and transplant is an important part of 'consolidation' when there is little or no evidence of disease left. It's not designed for clearing a large disease burden, which is what Adam still carries despite all the chemo he's had pumped into his body. If he were to be put through high-dose in his current condition my view, until I am convinced otherwise, is that it would be because there is nothing else left, not because there is any genuine expectation that it might succeed where all else before it has failed. Knowing what high-dose entails, and what risks are associated with it, I couldn't be any less sure about it. To the point where I can actually seeing us saying no. It's an incredibly scary prospect.

Then there is the problem of stem cells. As we failed to get an abundant supply there needs to be very careful consideration regarding treatments that are highly suppressive of bone marrow function. High-dose MIBG therapy and high-dose chemotherapy both require stem cell transplant. Giving back insufficient stem cells can lengthen the time that it takes for the bone marrow to recover and start working again. During this period, which may extend to many months, Adam would require transfusions of blood and platelets, and could not undergo any other type of treatment which was blood count dependent.

So the new schedule is for Adam to undergo a single course of MIBG therapy and then evaluate his response.. The hope would be to find evidence that Adam is responding to MIBG and therefore be more confident that going through with the second dose is the best course of action. The twin MIBG treatments would then certainly require some of Adam's stem cells to be returned to him. The complication with this approach is that there is plenty of evidence of children seemingly not responding to MIBG, only to discover a delayed response some weeks and even months later.

So nothing is clear. Which is par for the course I guess with Adam. My own view? Sadly I hold very little hope, and zero expectation, that MIBG will succeed where all the chemotherapy that has gone before it has failed. It's not our destiny for things to go to plan. That's not a defeatist attitude. I honestly believe that eventually Adam will beat this thing. There I've said it now, I'm not sure I have before.

In terms of his general well being Adam is doing great. In many ways not going into UCH this week has given his body that little bit extra time to recover at home, in an environment that we're all familiar with. It is just 23 days since his operation but his eating, general demeanour and range of movement are pretty much back to what they were before surgery. A few days ago he suddenly began running again, and followed this up with a night-time bicycle ride 'to test the lights out on his bike.'

As time goes on we're looking at more and more ways that we can help to make Adam as strong as possible through nutrition, environment, supplementation, detox, and alternative therapies. I've bought a Far Infra-red Sauna, a water ionizer, air ionizer, air sterilizers for his bedroom and around the house. We've imported a RIFE machine from abroad. We're having a complete blood, urine and stool analysis done that will show us any metabolic imbalances, nutritional deficiencies, parasitic infections, yeast infections, digestion, absorption, gut flora. I'm not stupid and I've not gone nuts; none of this may be directly relevant to curing Adam's cancer, but it can do a great deal towards making his body function in the most effective and efficient way possible. Is there anybody that doesn't think that's a good thing? We're also seriously thinking about alternative treatments that are not available in the UK, on the NHS or otherwise. And it feels like the time is fast approaching when we need to start looking seriously at trials outside the UK for which Adam might be eligible. He no longer makes a good guinea pig in this country because his response to upfront therapy has been very different to the norm, but somewhere there might be an experiment to which he's well suited.

And so it begins...

It doesn't matter that I've prepared myself for the best part of the last twelve months for what is about to occur. It doesn't matter that I've written about it countless times. It doesn't matter that I am fully aware that this is something we need to do in order to give Adam the best chance of living a normal life again. Or that at times I've doubted we'd ever get to this point so just to be here and the fact that we're still fighting means something in itself. It doesn't matter. I'm still deeply scared. Anxious doesn't nearly cover it. There are so may what ifs and maybes. So many risks, Risks of serious complications, some of them life-threatening in themselves. Liver failure, heart damage, kidney damage, hearing loss, serious infections. And at the end of it we may be no further forward than we are now. In fact we may find ourselves coming out of the other side  in a worse position - the damage done to Adam's body will leave him weak and vulnerable - and not improbably with widespread disease still. Rightly or wrongly it feels to me like this is the final throw of the dice.

Tomorrow (Friday) and next Monday Adam is going for a hearing test, kidney function test, echo cardiogram, and a dental check-up. On Tuesday he's admitted to UCH in London and Wednesday he starts MIBG therapy. One week confined to the lead lined room with minimal outside contact. Then one week at home. Or rather somewhere that Jake and Jessica are not. There is a danger from the effects of secondary radiation, particularly in Adam's excretions, so for that week we have to live apart though we're not exactly sure what the living arrangements will be yet. Then it's back to UCH for another week of MIBG therapy in isolation.

That's the easy part.

On Oct 13th we transfer straight from UCH to Royal Marsden for High-Dose Chemotherapy with stem cell transplant. That usually means a 2-3 month in-patient stay. The reason for the back-to-back is so that there is only a single transplant involved. We were warned about things snowballing but now it's happening it so feels like everything is starting to unravel and what little control we may have had is being wrested from our grasp. He hasn't recovered properly from surgery yet and has lost a lot of the weight that had taken so long for him to put on. Gone in a fortnight. And soon all that hair that has slowly grown back will be gone too. Not gradually this time, but practically overnight.

There's just so much to think about. To be apprehensive about. Scared about.

We'll see you again in January. Or maybe late December if we're lucky.

Post-surgery...

We've had a mixed time of it post-surgery. If ever there was a case of two steps forward and one step back this was it. Although at times it's seemed more like one forward and two back. We got Adam home on the Sunday after surgery, just 4 days after the operation to remove his tumour. Monday and Tuesday morning continued to see an improvement in him, but then in the afternoon and through into Wednesday he just grew more lethargic and tired, refused food, drank very little and generally regressed back to being a very poorly boy.

Having taken him to hospital to have him checked out his demeanour then improved and we made a late decision to get away for the weekend. He gained a spring in his step, spent more time walking and exercising, his appetite started to return and we thought we were back on the right road. And then Tuesday happened.

Having had a good night's sleep he woke up and went into Jake's room (as per his usual routine). We then heard Jake shouting downstairs "Adam's being sick". And so he was. Head stuck down the toilet vomiting what looked like a mixture of bile and green phlegm (I'm sure you're thanking me for sharing these finer details with you). Hoping it was just a result of a build up of said phlegm during his sleep I proceeded to continue with Adam's daily routine which involves a glass of wheatgerm extract first thing in the morning taken on an empty stomach. I have never witnessed anything like it before in my life. He drank the contents no problem, but literally as soon as it hit his stomach it made a complete about turn and came straight back up again. It was like wheatgerm yo-yo. Down... and up. All of it. In one continuous motion.

All of the progress made over the weekend undone (again). No eating, very little drinking, the odd vomit. So frustrating and quite difficult to deal with. From being a healthy (looking) little boy pre-surgery Adam is now stick thin once more, all skin and bones and looking anything but healthy. He's lost several kilos in weight and it takes a conscious effort not to become disheartened by it. 'We've put all the weight back on before and we can put it all back on again this time round' I keep telling myself. But I know that's not going to happen anytime soon for next up is MIBG therapy and the dreaded high-dose chemotherapy and stem cell transplant. There'll be no long-term weight gain until this phase of Adam's treatment is well and truly over that's for sure.

Summer's Gone...

It may be an odd statement for a parent of a child with Cancer but we had lots of fun over the summer holidays. Much of it brought on by the kindness of a friend in giving us the use of their house near the coast, and some of it as an indirect result of Jake's broken arm. For it was the combination of these two things that ended up with us buying a caravan, which we would otherwise have never thought of doing. We spent many happy days down by the sea, firstly at our friends house and then several weekends at the caravan. I'm sure the kids had a summer as good as most.

But that's gone now. Largely forgotten. There can be no dwelling on such things. No time, and often no capacity, to reminisce or look fondly back on the holidays. It is the same with everything. We live in the here and now, constantly and only looking forward whether it be with trepidation or anticipation.. We have good and bad moments, but once they are over they are as good as lost. We worried about Adam's surgery, and then it went well. No time to dwell. It wasn't a victory it was a necessary evil. Now we worry about his lack of eating and difficulty moving around. Hopefully it will be soon rectified, and then we will focus on and worry about MIBG therapy. This world we inhabit is relentless and energy sapping.

Jake started secondary school this week. I took the obligatory photos and one day I may look back on them differently. But honestly, for the here and now it's not that important for me. In many households I am sure the end of summer holidays and kids going back to school, and especially off to a new school, was a big deal. It would've been in our house too in years gone by. But it has taken a conscious effort on our part for it not to be inconsequential this time, and although that's not really fair on Jake it could be no other way. The significance of everything else is diminished by the 'C' word.  The 'C' word is king. The 'C' word trumps all. My abiding memory of Jake starting secondary school? Wondering whether I will ever see the day when his brother treads the same path. That is what the 'C' word does.