Thursday, 28 October 2010

Scan, scan, scan, scan. Scan, scan, scan, scan. ...

For those of you wishing to find out how Adam's doing without having to suffer my narrative style, there is a much shortened update below.

The second part of this particular update has been waiting in the wings for a while. The reason I've not published anything until now is that we met with Adam's consultant yesterday to discuss the results of his latest set of diagnostic scans. His previous scan was back at the end of June so there has been a prolonged gap between then and now. Of course there was plenty going on in said gap. Chemotherapy, two stem cell collections, tumour surgery, MIBG therapy. But no diagnostic scans.

The (MIBG) scan itself was last week. Radioactive isotope injection on Wednesday, imaging on Thursday. I tried to figure out how many of these one-hour full body scan's Adam has been through and I think the total, including the latest one, is nine. No doubt he'll be into double figures before too long. Alison and Adam arrived home from the hospital on Thursday to find a message waiting for them on the answer phone. Could Adam please go back so they could re-scan his abdomen, the images they'd just taken were blurry. I wouldn't say panic set in but it was, despite the apparently innocent explanation, a bit unnerving. This was because (1) nothing like this had ever happened before, (2) the area in question encompasses the majority of Adam's imageable disease, and (3) the scans were, as always, taken away to be spot-checked before Adam was given the okay to leave in the first place. Thankfully the return trip was uneventful and they quickly squeezed Adam's re-scan in so there wasn't any waiting around. When I asked Adam later what had happened he told me "My winkle was itchy so I had to scratch it". So there you have it, a perfectly plausible, and quite innocent, explanation. Or was it? Was there something more to it? Were we just looking for a way-out? When anything unexpected happens there's always this nagging suspicion in the back of your mind that this is it, this is bad. To fully appreciate this mentality I think you either have to be a parent of a child with this kind of life-threatening illness - or a paranoid worrywart.

Last Tuesday Adam did his usual trick of attending school just as it was about to close for the holidays. He went in first thing in the morning, got told off in assembly for talking, and ran out crying. The teacher in question didn't actually realise it was Adam who she was telling off and to be fair it was his own fault for talking when he should've been listening! He's lucky I didn't give him a clip round the ears when he got home. He stayed for the whole morning and thoroughly enjoyed himself. I took his pills in for him to have at lunchtime and he told me he was 'staying until last playtime, at least'. Shortly after I arrived back home we got a call from the school to say Adam was in the office and he'd like to come home now. Clearly his desire to stay for another playtime was outweighed by his desire not to sit through anymore lesson time. Unsurprising given how much school he's missed. His school are fantastic though, they are happy to accommodate him whenever he wants to go in, for however long or short his visits might be. It's especially nice given that his appearances often cause excitement amongst some of the other children and a bit of disruption to normal classroom activities.

The radioactive iodine used in the MIBG scans, though much weaker than that used for therapeutic purposes, has a half-life of 14 hours and so he wasn't able to go back into school after his hospital visits on Wednesday or Thursday. But mark my words, one of these days he WILL go in on two consecutive days!

With hospital visits out of the way we went to the caravan for some more fresh air, cycling and feeding of ducks. We always planned to return on Wednesday so that Adam could have weekly bloods taken and have his central-line dressing changed. On Tuesday the hospital called to say we'd been booked into Wednesday clinic and could we please make sure we attended. It's impossible not to get worried on the eve of a post-scan visit. We've stopped hoping that Adam's scans will show marked improvement; instead we now hope they do not show any marked progression or areas of new disease. We've been reconciled for some time to the fact that there's no quick way out of this for Adam, or for us. Well not one with a happy ending anyway. What we hope instead is that we're in for the long haul. At the end of which we will, finally, prevail.

After building works that have been on-going since before our first visit last July, the new children's unit at the Royal Marsden has finally opened. It won't though be fully operational until the existing building has been renovated to accommodate the daycare unit. At the moment daycare and consultation rooms occupy the ground floor of the new building, and inpatients the upper floor. In it's final configuration, once daycare have moved back out again, the inpatient ward will occupy the whole of the new building; ground floor for infants and young children, and the first floor for teenagers and adolescents.

After a quick checkup Adam went off to play leaving Alison and I to speak to his consultant. Queue rising tension. "The latest MIBG scan remains much the same as before. If anything there is some slight improvement in the femur." And relax, it's okay. It means I can give you all the information I couldn't give you before, in case the results of the scan rendered it all meaningless (plus I didn't want to tempt fate). One final thing that's worth mentioning is that these results do not mean the MIBG therapy has failed. It often takes longer than four weeks for the full effects of such treatment to become apparent. Sometimes considerably longer. His blood counts continue to drop, though not to levels that require transfusions. We're hopeful that scenario will be avoided altogether.

So, to the update that's been waiting in the wings.

Last week I had a very good discussion with Prof. Pearson, head of the children's unit at the Royal Marsden and the leading UK expert in Neuroblastoma. A very good person to have reviewing your child's treatment plans. Also a person very much in demand and with a very busy schedule. Nonetheless he's always been happy to discuss Adam with me, and has returned my calls on numerous occasions when I've felt that high-level intervention has been required.

Until now the feeling has always been that the best way to proceed has been to try and get a clear scan before going into high-dose chemotherapy and transplant. However, Prof. Pearson feels strongly that the time has come when the benefits of that approach are out-weighed by the risks that the NB cells targeted by high-dose may become resistant to treatment and eventually lead to a relapse. Going through with high-dose and the remainder of the upfront treatment now, and trying to deal with any remaining disease afterwards is, in his opinion, the right approach. Obviously I am summarising somewhat but I left feeling much more confident than when I went in. Not about what treatment would or wouldn't do for, and to, Adam. But about the whole 'plan' going forward.

Providing Adam remains at least as well as he is now clinically this is the plan. First we are going to attempt a third and final stem cell harvest. I have always been perturbed by the fact that we don't really have enough stem cells for two transplant procedures. It's borderline at best. And once Adam goes through high-dose it will be a long time before we could even contemplate another harvest. Should things take a turn for the worse, having no stem cells definitely limits the treatment options that are available. So we are going for a peripheral blood stem cell harvest and then, if that fails, a bone marrow harvest which is something the Marsden have not actually needed to do for a number of years. Adam is pencilled in for cyclophosphamide over the weekend of 13th/14th November. The exact date depends on his blood counts recovering sufficiently from the MIBG therapy. The cyclophosphamide is to prime him for the harvest as well as acting as a holding chemotherapy. It takes around 10 days for blood counts to drop and then begin to recover again - which is when the harvest is conducted. So that should be from 23rd November (harvest always begins on a Tuesday), assuming 13th/14th for priming.

After that the sequence looks like it will be; 2nd MIBG therapy, either at the Marsden or back at UCH; straight into high-dose chemotherapy and transplant; (possible) 3rd MIBG therapy; radiotherapy and then antibody/immunotherapy treatment in the former East Germany. There is a possibility that by the time Adam reaches the final stage a new antibody trial, for which he would be eligible, will have opened in the UK. As things stand, however, it's still most likely that we'll need to go to Germany. America is no longer an option (unless a new trial also opens up there) as he does not meet their entry criteria of having reached high-dose no later than 9 months after initial diagnosis.

It looks likely that Adam will not be able to escape Christmas in hospital this year. Last year we brought him home on the afternoon of Christmas Eve. This year Adam could well be in the midst of high-dose/transplant… which means he'll either be sick in the Marsden, or even sicker in the PICU at St George's. Nice. He doesn't know any of this yet. No point in telling him until possibly becomes definitely. Working on some rough timescales immunotherapy (Germany) would begin sometime in the first quarter of next year. And the treatment would be completed towards the end of next summer. At which time we'll know whether or not all the treatment has had any effect on his existing disease burden. Anyway there is a long way to go between now and then, and we'd be getting very much ahead of ourselves to even think beyond the end of this year. It's good to know and understand what might lie ahead, but the focus has to be on what comes next.

Adam turns 7 on 9th November and we've organised a party for him on the Saturday before. On Friday afternoon before school finished for half-term he took in all his invites. Fingers crossed nothing crops up to spoil it and he has a fantastic day. He deserves to. There's an even bigger treat lined up for him on his actual birthday… but that's a story for another day.

Scan, scan, scan, scan. (The Shortened Version)

Adam's MIBG scan from last week showed little change from his scan at the end of June. If anything there is some slight improvement in his femur. The plan now is for Adam to undergo a third stem cell harvest, 2nd MIBG internal radiation therapy, high-dose chemotherapy with stem cell transplant, 3rd MIBG internal radiation therapy, radiotherapy and immunotherapy in Germany. All that will take us up to the end of next summer.

Monday, 18 October 2010

Back home...

Apologies for the lack of updates... fact is there is little to update you on really. Well nothing of any great significance.

Adam had a really nice week down at the caravan with Alison whilst we waited for his radiation levels to subside. An abundance of sunshine and generally good weather helped for sure. They did lots of cycling and Adam had fun feeding the ducks and swans at least once a day. We did a quick changeover at the weekend so I spent the majority of Saturday/Sunday with him, but for the most part I was at home cooking, washing and taking care of Jake and Jessica. Whilst we wouldn't have planned such a separation by choice, all in all it worked out just fine.

On Wednesday Adam came home to allow his dressing to be changed and bloods to be taken. As expected his counts are dropping following the radiation therapy. How far they will drop, and whether they'll reach levels at which transfusions are required is something that only time will tell, but it's certainly a possibility. We had hoped to coincide the return home with a trip to the Marsden to have his levels re-checked, but for some unfathomable reason we were told that they couldn't do it and we'd have to go back to UCH. There is ridiculous and then there is ridiculous. As far as I was concerned this went beyond even that. The test goes something like this. Adam holds tape measure. Person holds meter at distance of one metre from Adam and takes reading. Person looks up reading on conversion chart and determines which band it falls into. Total time taken? About 2 minutes. Given that they undertake the same treatment at the Marsden it's not possible that they couldn't do the test. Wouldn't maybe. But couldn't, absolutely not possible.

I thought about making a big fuss, it wouldn't have been the first time. Part of me wanted to make a big fuss. However, in the end after talking about it we decided to take Adam up to UCH and at the same time collect the remainder of his things which we'd been told were no longer 'hot'. Our parking dispensation and congestion charge waivers were still valid so we drove up there the next day.

We were glad we did. "No restrictions" was the outcome of the test. Adam could come home again. He was, to put it mildly, cock-a-hoop. "I am going to go home and give Jake and Jess a big cuddle" he announced. And that's just what he did.

Fast forward to now and we're all back home, united as a family. On Thursday Adam is back at the Marsden for more scans, and tomorrow I am going to talk to them about what happens next. At the moment we are in a state of limbo. Not quite sure what the best course of action is. Not quite sure how to go forward. I suppose we are collectively holding out for a complete response to MIBG therapy, after which the way would become clear again. But that really is a very remote possibility. Only a minority of children have such a response, and most are given high-dose therapy which involves two infusions given two weeks apart and in combination with chemotherapy. Adam had the mildest form possible. He's never had a miraculous response to anything so far, I see no reason to be optimistic that he will have this time.

Neuroblastoma isn't one disease, it's many different diseases. Adam is writing his own story now. What matters most that he's still here, still fighting, still well, still smiling and enjoying each day. After 17 rounds of chemotherapy, major surgery lasting 7 hours, full-body internal radiation therapy, anti-sickness medication, steroids, blood transfusions, platelet transfusions, antibiotics, MIBG scans, CT scans, ultrasounds, bone marrow extractions, catheters, cannulas, feeding tubes, innumerable blood tests, and enough pills to last a lifetime.... he is still smiling and enjoying each day.

Friday, 8 October 2010

An observation...

I posted this photo on Facebook a couple of days ago and now I can't stop looking at it. It shows Adam this week and Adam twelve months ago. He may have had surgery to remove his main tumour, but from a medical perspective he is every bit as ill today as he was back then. In fact the prognosis for his future is considerably bleaker.

And they say the camera never lies...

Tuesday, 5 October 2010

What the ... ?

Today Adam has been the most kind, caring, loving, affectionate child you could ever wish to meet. No matter what we've asked of him there has not been so much as a murmur of dissent or discontent.

I'm not sure how long it will last, and being locked away in a 12ft square box for a week is not something I'd want any child to have to go through, least of all my own; but for whatever psychological reason his homecoming has brought out the absolute very best in him. And it's made today a day to cherish.

Tomorrow Alison and Adam head off to the coast and I get Jake and Jessica back. So I'm under no illusions; the peace and harmony won't last much longer!

UCH - MIBG Therapy

I uploaded some photos of Adam's stay at UCH. They are not particularly exciting, but then nor was his stay.

Monday, 4 October 2010

UCH - Day Seven

Today was not what we were expecting at all.

I arrived at the hospital as usual to find Adam munching his way through his breakfast. So far so normal. A quick hello and goodbye, and Alison returned to the flat to shower, change and prepare lunch. Equally unremarkable.

Not long after Alison had left a member of the Physics team came up to remeasure Adam's levels. On Friday they were 800 and something megabecquerels. In laymen's terms that's 'too high to be anywhere other than in the lead-lined isolation room'. To put things in perspective; directly after he'd been given the therapeutic dose of radioactive iodine (131I) his reading was more than 8,000. He was HOT. The decay is non-linear and we'd been showering Adam at most once a day, so I was incredibly surprised when the reading this morning came back as 225 and I was told we could go home (with restrictions of course). Home? Today? That's the last thing I expected.

Adam was happy too. He got straight on the phone to tell everybody, although his joy was tempered slightly when I told him Jake and Jessica were both at school and his news would have to wait for at least another 5 hours.

We carried on with lunch as planned and then sorted everything out during the course of the afternoon. Before we were discharged with our yellow card containing Adam's restrictions a final reading was taken of 170. This means that in a couple of days there will be no restrictions at all for adults around Adam, but he must not be in prolonged close contact with children or pregnant women. Which all works out rather well... Jake and Jessica are staying with friends for the next two nights (thank you parents of said friends). During this time Adam can be at home whilst we sort a few things out, and then he and Alison are going away to the caravan for a week. When they return we will have Adam's levels rechecked, but we anticipate that it will be at least another week before he can resume normal contact with his siblings.

Not surprisingly Adam was in terrific spirits when we finally let him leave his room.. We walked from the hospital to the flat, a journey of about 15 minutes with middle-sized legs, had some tea, packed everything up and that was that. Just before 9pm we arrived back home.

Adam's scans on Thursday showed extensive uptake throughout his bone marrow. Whilst I hate seeing or hearing that EVER, it is actually good news in the sense that it confirms that he has received a therapeutic dose in the areas that were being targeted by this treatment. In last night's post I hoped we wouldn't be at UCH much longer. Today we are home. I figure I must be on a roll, so now let's hope Adam has a complete response to the MIBG therapy.

Sunday, 3 October 2010

UCH - Day Six

Let's hope we don't have to remain at UCH for too much longer. That's not a particular reflection on the medical institution in question, it's just that I am seriously struggling to find anything to report that I haven't already written.

Adam's eating reasonably well, despite the fact that the lack of activity doesn't lend itself to developing much of an appetite. We made the right decision to rent an apartment. There is no doubt whatsoever that nutritionally Adam is a million times better off this way. We're showering him once a day to clean off the radioactive material excreted through his skin, but the water is horrible. There is a such a distinct detergent smell that comes through and I find it quite unpleasant. I have no idea what's been added to the water and I'd rather he didn't shower in it at all really, but we've compromised at once per day. It might mean an extra night (or two) but so be it.

UCH - Day Five

Well it doesn't get any more exciting that's for sure. This place is eerily quiet now the weekend has arrived. Just Adam and one other MIBG patient in isolation rooms, one nurse to look after them, and nobody else to be seen! There appears to be only one other child on the whole of the 11th floor. Seems very odd next to our experiences of St George's and The Royal Marsden, the latter of which is a constant hive of activity all day, every day.

So tonight, finally, it's my turn to sleep in the cubbyhole. Thank the lord for mobile broadband. Or in my case, O2.

The highlight of my day today has been shopping... for food. I can thoroughly recommend Waitrose beneath John Lewis on Oxford Street and Planet Organic which is on a side street off Tottenham Court Road.

Adam is a tale of two children. One is a sullen, sulky, awkward, lazy urchin who just lays on his bed watching TV programmes on the computer. He can't even be bothered to go to the bathroom to pee, preferring instead to expel his radioactive waste into the bottle next to his bed. The other is a vibrant, joyful little boy who bounces on the trampoline we brought in for him whilst bus watching, counting cranes, or pointing out landmarks like BT Tower, Wembley arch and London Zoo that he can see from his window.

As we had been warned, by far the biggest problem in here is the boredom and the confinement. Getting him to engage in something is key. We took him a cheap mobile phone in this evening and I gave his number out to various family members. It was so lovely to watch him receive calls from Jess and Jake, Grandparents, Aunts, Cousins. "Daaaaad" he said to me, "You've been telling people to call this number haven't you? If one more person calls this phone I am going to give you a good whooping." At which point the phone rang.

Both Alison and I have spent more time in his room today playing various Wii games with him, our bodies separated by the heavy lead screen that we can wheel around. It is in our company that Adam is at his most animated - not surprisingly given that he is a very sociable child who must remain isolated and alone for the majority of the day. The lead shield offers protection against the gamma radiation coming from Adam's body. Both of us would swap places with him in the blink of an eye if we could. Compared to what he's been through, and continues to go through, we will take our chances with a little bit of secondary radiation if it helps to keep him happy.

Friday, 1 October 2010

UCH - Day Four

Very little to report. It's dull up on T11 North. Adam got a bit upset when we told him that he's going to be staying for another 5 nights or so. We explained before we went that he'd be there for a week, but as far as he's concerned he's been there ages already. The novelty is well and truly starting to wear off. His levels are too high for him even to be allowed out of the hospital over the weekend. Personally I find it all slightly odd given that he was out of his room and in the general hospital population for well over an hour yesterday, but I decided against opening that particular can of worms.

I've really missed Jake and Jessica today. Might have to take a trip home at the weekend to give them a cuddle (if Jake will let me). and then turn tail and head back up to London again. We'll see.