Wednesday, 19 September 2012

I should try to update more often ...

I should try to update more often. That's if I can find the time. It's coming up to seven weeks since Adam and Alison took off from Heathrow bound for Grand Rapids via Chicago. The breaking news is they're scheduled to fly home to the UK on Saturday night, landing back at Heathrow early Sunday morning. First cycle of treatment is complete, scans are stable, bone marrow is the same.

The first 28-day cycle of sorafenib/cytarabine went fairly well to plan. The cytarabine hit Adam's blood counts, but not to the extent where he's required any sort of transfusion (yet). I say 'yet' because having sorafenib continuously has kept his counts depressed, so with the next four days of cytarabine starting today we are likely to see them drop still further. They did actually recover after the last round of chemo we had in the UK (if you remember we wondered whether it was the disease that was keeping them low). It just took a long time, thus furthering our resolve that doing something different, something that wasn't going to be so harsh on Adam's bone marrow, was the right way to go. The most acute side-effect of treatment was a red rash that rolled around Adam's body, coming and going in different areas with each passing day. It was at it's worst around day eight of the cycle, the last day that both drugs are given together, after which it gradually resolved. It didn't actually bother him, except for the soles of his feet that would rub and hurt as he walked.

When Adam was first told he would have to stay until at least the middle of September he was naturally quite upset. I always had in the back of my mind that myself, Jake and Jess could fly out there at some point, and now it was the obvious thing to do. We could have flown out straight away and spent the final week of the school holidays in Michigan, however Adam would be having chemo (cytarabine) for four of those days so we'd be confined the Grand Rapids area, with regular visits to the hospital. Side-effects, such as they were, would be at their peak. The following week he'd be on oral sorafenib only, and if all was well would need just a single visit to the hospital to get his blood counts checked. Unfortunately, it was also the first week of the new school year.

Fast forward to now and I was coming home from school with Jessica today and explaining to her that Adam would be flying back on Sunday. She's been asking me for the last few days did I know when he'd be home. When I finally told her (now that I finally knew) she said "so it will be seven weeks then that they've been away". And at that moment I thought to myself it was so the right thing to do going out there when we did, even if it did mean missing the first week of term. Seven weeks of being at home with me, of not having seen their brother or their mum. That week that we spent together in Michigan at the start of September was so much more important to Jake or Jess than a week of schooling, start of a new school year or not, could ever be.

So the three of us flew out on Sept 1st and it was just great for us all to be reunited. The first few days we stayed in Grand Rapids and I got the chance to go up to the hospital and meet Dr Sholler in person. We talked about Adam's scans, biopsy, treatment. She doesn't have all the answers of course, nobody does. There is no magic wand. But I'm absolutely sure we've done the right thing; the best we possibly could have for Adam. We will certainly be forever grateful to Dr Sholler for taking Adam into her care. After spending several days using Grand Rapids as a base, we then drove to Lake Michigan to spend four nights in a lovely little house that Alison had rented in a place called Grand Haven (it's actually a City but not as we'd think of one, total population is something like 11,000).

An added benefit of going out to visit when we did (though it wasn't a consideration in advance) was that U.S. schools re-opened after Labor Day weekend. Which meant we had Craig's Cruisers (amusement arcade, laser tag, go-karting, mini-golf), and the beach at Grand Haven, pretty much all to ourselves. Needless to say the kids enjoyed it. Even the weather turned in our favour. It had been very hot prior to our visit, above 90°F at times, and for the first few days whilst we were there it was still too hot for Adam to be outdoors for very long, particularly given his rash. However, on Friday the clouds came to provide shelter from the sun, the temperature dropped to be pleasant rather than overbearing, and the promised rain failed to materialise. All of which allowed our last full day there to be spent playing on the beach and messing around in the water; it honestly couldn't have worked out better. Jake, Jess and I flew back to England after our week long visit; my sleeping got messed up, their's didn't. Bed at normal time, up the following morning for school no problem at all. A week and a half later they are now well and truly back into the swing of things.

One of the pre-requisites of Adam coming home to continue treatment (or to be more accurate the clinical trial he is on) was for the Royal Marsden to agree to do various routine blood work, and assess Adam clinically each week. I cannot begin to tell you how fraught last week was trying to get the necessary agreements in place. Despite starting the process on August 23rd it went right to the wire, and at one point during the week I honestly thought Adam would have to stay in Grand Rapids for another month simply because we couldn't get his bloods done over here and the results sent across to Dr Sholler. I could probably write an entire update just on the events of last week alone, but suffice to say my relaxing week's vacation to the U.S. was immediately followed by a tortuous week back in England.

The fact there weren't any news reports of a crazed parent chaining himself to the doors of the hospital means the various senior management and committee approvals were eventually granted and the Marsden will do what's been asked of them. Which isn't actually very much. And it's not that anybody is doing it grudgingly (at least not to my knowledge anyway), it's just the way it has to be, the way the Marsden works, the way the NHS works. I guess. They also told me they wouldn't be doing stuff they'd never been asked to do. I do wonder how many meetings it took to reach that decision!

I did promise Alison I wouldn't rant, so I'll stop now before I cross the line. But it really wasn't the week that I had wanted, or even expected, to come home to.

Whilst I was trying to sort out the necessary arrangements to allow Adam to return home, back in Grand Rapids Adam was as per protocol having bone marrow biopsies and FDG-PET/CT scan to re-evaluate his disease after completion of the first cycle of treatment. On more than one occasion it occurred to me that all this frantic effort going on over here would mean nothing if the scans showed his disease was still progressing. How painfully ironic would it be to get approval and then have to stay in the US to change to a new combination of drugs. As it turned out the scans were stable. Nothing to get over-excited about, but we've long since stopped hoping for anything other than stable. We got what we wanted, what we needed, to get Adam back to England.

So what now for Adam? Well Alison will go spend $11,000 at the hospital pharmacy on pills to bring home, and the cytarabine at $10 per vial is being provided on the NHS. Actually that's a little unfair; this is about as experimental a treatment as you are ever likely to get. Adam is most probably the only child ever to receive this particular drug combination for neuroblastoma, it has no track record whatsoever against the disease, and so nobody could reasonably expect it to be funded on the NHS. Anyway, our hope is that we will complete two further cycles of treatment at home before returning to Grand Rapids in early November for repeat evaluations. If anything happens in the meantime to require us to bring that visit forward then we will, it's as simple as that. We will be doing regular blood work, physical exams, and any supporting care through the Royal Marsden. We will also be doing regular checks of blood serum and urine tumour markers to give us an indication of where things are heading. If we see readings increase over time it would be suggestive of the current drug combination failing to control Adam's disease, and the next trip back to Michigan would likely be a longer stay in order to change to something different. Stable readings or better would lead us to hope that the next trip would just be a few days; bone marrow biopsies, scan to confirm disease remains stable, stop by the pharmacy to hand over another $11,000 and fly home. This is the scenario we will hope for, but the alternative we will also be ready for.

I should try to update more often. That's if I can find the time. But I'm tired after three years of relentless worry, stress, battles and fear. Worry about what today will bring, stress over treatment decisions, battles to get what we need when we need it, and fear of what the future holds. In the early days this used to be a place where I shared some of my innermost thoughts, but it's long since stopped being that. I can't do that any more, for my own sake and for the sake of those closest to me. If, as a consequence, everything sounds like it's just dandy and we're plodding along nicely then believe me it's not dandy, and we're not plodding. We're wading. Through quicksand. And I'm not crying and shouting simply because I can't cry and shout; because if I start crying and shouting I won't stop. And it will serve to change nothing, nor make anything even the slightest bit better. Above all else I am fortunate to have three beautiful children, and my resolve is not to ruin their todays out of my own fears of what their tomorrows might look like.


  1. Your strength, your courage and your love for your children are overwhelming. Adam is a hero and I can only wish you all the best. I've been reading you for a long time. Silently. But today I had to comment. Best wishes from Portugal.

  2. Claudia has said it better than I can, and I echo every word. I'm sure she's correct that there are many readers of Adam's blog who rarely comment, and I'm one of them. I just wanted to say this post has moved me deeply, and my thoughts and best wishes are with you and your family.

  3. Beautifully written last paragraph. Echoes my own sentiments with my little boy Charlie. Keep plodding because tomorrow might be full of smiles. Adam is in my thoughts :) Sharon

  4. I've followed Adam's progress for over 2 years now. I'm certain many other people who follow you must think the same as I do - you are the most extraordinary and wonderful parents and family. If I had a magic wand......... but all I have are my best wishes, thoughts and hopes for you all.

  5. Though I don't know you, your deep and honest words have made me feel as if I do. I truly cannot imagine how you continue on this journey--and how you do it with such brilliant grace. Your children are so fortunate to have such selflessly dedicated parents, and you are so lucky to have them. If I could send a miracle across the pond to you, I would. I can't imagine a family, a father, and a beautiful child more deserving. Please know that amidst this cruel suffering and sadness, you are not alone.

  6. You are very strong person and you have a wonderful family. Please continue be strong for them. All the best wishes for all of you

  7. Hi Nick. Its Mark Strong, Alexanders Dad,a nd I will call you later today when I get home.
    You've been doing this a little longer than us, but I would like to think that I understand what you're saying, and please keep your pecker up mister. Speak soon.
    All the best from the Strong's, and hope Adam arrives home safe and sound soon!