Monday, 23 July 2012

To Grand Rapids ...

Me again! Those of you who regularly read my updates will know by now that I do like to use the correct terminology wherever possible. So, in that vain, I will summarise the last week. Adam has been ok in himself and generally stuffing his face at everybody conceivable opportunity. His blood counts are shit, and thus far have shown no sign of picking up to any great extent. End of summary.

We've been giving Adam daily GCSF shots to try and stimulate is bone marrow to produce infection-fighting white blood cells, but to date they remain rock bottom. He was up at Epsom General on Friday for a Platelet infusion, and his Haemoglobin is sitting a little higher than the level at which they transfuse so it could go either way in the next day or two. We decided, in consult with Adam, to do GCSF by daily injection rather than IV. He's had so many injections now (50+ out in Germany last year) that putting some Emla cream on his thigh and one of us sticking him with a needle an hour later is so much easier (all round) than having his port accessed daily and being hooked up to an IV infusion, a process which can take an hour or more including the messing about with his port, line flushes, etc. Notwithstanding the fact that the Community Nurse team don't work weekends so we'd have to drive to hospital for it.

On Wednesday of last week I had a meeting at the Marsden to tell Adam's oncologist about our plans for the next phase of his treatment. So here goes …

Over the course of this week we're hoping Adam will continue to recover from the cyclophosphamide and topotecan, and that his blood counts will begin to pick up. On Thursday he's been selected, along with three other children, to help officially open Hobbledown, a new children's activity centre in Epsom (read here for the details). If his white blood count doesn't improve before then he won't be able to attend unfortunately, as we can't afford for him to be around others whilst at increased risk of infection that his body can't fight. In any case we'd like to thank those people who put Adam's name forward. We know he's a superstar, but no more so than any parent knows their child's a superstar as far as their concerned. That others see him thus, and recognise what he's been through, is something different. Not that I can quite explain it properly. Pride is the wrong word. I can't think of the right one.

Next week we're hopefully going to have a few days away; Jake won't be playing cricket every minute of every day so we can spend some family time together before Adam goes off to the U.S. for treatment …

Alison and Adam will be flying out to Chicago, and then on to Grand Rapids, Michigan on Monday August 6th to see Dr Giselle Sholler, Chair of the Neuroblastoma and Medulloblastoma Translational Research Consortium (NMTRC). The rest of that week Adam will undergo a battery of scans and tests; MIBG scan, MRI scan, PET scan, bone marrow aspirates and biopsies. It's going to be a very long week.

The following week he's going to start on a Phase I trial, of what precisely we don't yet know. It depends, to a certain extent, on the results of the scans. Most likely scenario is we do another round of cyclophosphamide and topotecan with the addition of oral nifurtimox, a combination that is running as a Phase I trial out there. Like almost all the drugs one encounters along this journey nifurtimox comes with side-effects, the most common being neurological and the most severe being seizures. Not a pleasant prospect, but the side-effects are temporal; they do not continue after treatment ceases. It's a unpleasant fact that nothing we've put Adam through over the past (almost exactly to the day) three years has come without risk of serious consequences. Whatever treatment we do start him on out in Grand Rapids, one things for sure. It's going to be another very long week.

If, and by that I mean if, everything goes according to plan we've booked flights home for the weekend immediately after treatment ends. The idea being that we want to fly Adam back to the UK whilst he is well enough before the inevitable, but routine, side-effects such as low blood counts occur. For one it's better for him to be at home as much as possible, and away as little as possible. For two, it's better for us to be together as a family as often as possible, and separated by four thousand miles as seldom as possible. And for three, it's pointless us having to pay for supportive care, transfusions, GCSF, etc. in the US when we can receive exactly the same on the NHS, and only have to pay for the parking.

There is slightly more to our plan than going out there, having a week of scans, having a week of treatment, and flying home. As long as The Royal Marsden give us their support we should be able to continue the U.S. trial in the UK. After doing the first round in Grand Rapids, subsequent rounds can be done back here; the intravenous chemotherapy backbone at the Marsden, and the oral drugs shipped in from the U.S. to be administered by us. The initial meeting with Adam's oncologist to discuss this went well, but I am sure there are other hurdles to be overcome before it can become a reality. Having said that we are talking about a properly regulated, recognised, clinical trial so hopefully it should simply be a case of ensuring there is sufficient information flow for the Marsden to be comfortable overseeing Adam's care whilst he is participating in another institution's trial.

The final element concerns Adam's bone marrow, which we know is an area where the disease has come back strongly. The NMTRC are running a personalised medicine trial which aims to biopsy a tumour site, determine the precise molecular make-up of those cells, and use the information against a database of therapeutic agents to make real-time, patient-specific, treatment decisions. Because of the nature of Adam's disease this isn't feasible in his case. However, they can take bone marrow samples containing tumour cells and attempt to grow them in the lab in order to do something similar. The difference being it might not be successful, it will in any case take longer, and it's not part of an official trial with strict adherence criteria. The upside is it might, and by that I mean might, provide us with some useful information that could guide our decision making in the future. It has to be worth a shot.

We also hope to be able to send a sample of Adam's bone marrow to Children's Hospital of Philadelphia (CHOP), for testing for known mutations that occur in a (small) subset of neuroblastoma patients (ALK and PHOX2B). It's not feasible to do this from the UK, as a fresh sample is required. Again we don't even know if the test will provide any conclusive result one way or the other. For bone marrow testing at least 15% of the sample must contain tumour cells. We know Adam had much more than this when he was last tested back in May, and we know also that his most recent MIBG showed further widespread and more avid uptake. Putting these together would infer he still has at least the same amount of bone marrow involvement, if not more. However, things are not always what they seem, he's had another round of heavy chemo since then, and the more times Adam's bone marrow get's taken the harder it becomes to get a good sample. The bottom line is that once again it's worth a shot. What's to lose? Except for a few thousand dollars? For me the bigger downside is the fact that bone marrow procedures are horrible and Adam is doing to be in pain and discomfort. Again. But I also know he'll soon get over it and be back to his old self. Again. And so we'll do it, and we'll hate it, and we'll move on, and we'll keep our fingers crossed it gives us some information that we didn't have before … and with it some more options, good ones.


  1. Fingers crossed for tomorrow - and for this whole next phase.

    Safe flights to and from the US for Alison and Adam and a happy time away before then.


  2. Greetings from the USA.

    I understand how painful it must be for you to deal with a child with cancer, just wanted to encourage you with a little something.

    There is an American campaign called The Truth 365 which is to raise awareness (and money) for childhood cancer research and development of less toxic treatments. You can find out more at So far it looks like it will be a success and will benefit possibly Adam and many children in the future who will be diagnosed with cancer.

    Good luck to Adam with his treatment.