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.