Wednesday, 5 December 2012

Good news but there'll be no rejoicing …

I sat in the scan room with Adam whilst he was having his PET/CT and thought about Christmas for a while. Not for very long, because the actual scan itself only takes just over 20 minutes! Other than the fact I would hate to disappoint my children, I realised I'm not at all bothered where we are, or how it turns out. I'm now (re-)booked to fly home on Tuesday 11th. Though we're still not completely sure whether it'll be to try and hastily organise Christmas at home for Alison and Adam to join us at some later date, or whether it'll be to organise Jake and Jessica to fly out back out with me once school breaks up for the holidays. I thought last year was crazy enough preparing for Christmas in Greifswald …

Adam's scan is stable. There is no significant change and no new areas of disease. It's good news, and yesterday was a good day; Adam took his Beyblades into clinic and for the first time during this visit he actually spent some time in the playroom. We had our consult with Dr Sholler and afterwards Adam started on a second cycle of his current combination therapy.

Then today his right leg, which had been aching a bit for the past couple of days, got much worse. He is now once again immobile and unable to move without severe discomfort. What's causing it? We don't know. Could be anything, or everything. He's back on pain relief, but to be honest it's a low dose and doesn't seem to be doing much for him, so we will likely need to review things tomorrow.

With Adam's scan being stable, getting home for Christmas really depends on two things now. Firstly, Adam being well enough to travel; right now he could fly, but he'd need to be made as comfortable as possible considering it's an 8-hour flight, and we certainly wouldn't want him getting any worse. Secondly, The Royal Marsden agreeing to oversee Adam's new treatment regimen, and in particular administering the once-a-week IV chemotherapy component of it. Hopefully they will remain supportive, but we don't yet know … as we've not yet asked (but will be very soon!).

Tomorrow evening there's a Children's Christmas Party at the Van Andel Museum, at which the hospital staff will perform an original play written by one of the Doctors; it's an annual event that's been running for many years apparently. Hopefully Adam will be well enough to go along and enjoy himself. I have threatened to video proceedings and post them on YouTube, although for some reason this idea didn't elicit an overly enthusiastic response from the nursing staff. One of them, cast in the role of a baddie, has promised to deliver his lines Vinnie Jones style, which ought to be quite amusing.

One final thing. If, by chance, anybody has any contacts with Delta/KLM … we did really well getting out here, but it's a night flight back from Detroit to London and business class (which means Adam will (1) be comfortable, and (2) get some proper sleep) is crazy expensive right now. The alternative is we'll just have to keep him drugged up. Going forward we're probably looking at coming out more often as well, so any assistance we can get in keeping costs down is going to be of significant benefit.


  1. So many children like Adam do not deserve to suffer like this :( My prayers are with you.

  2. Thinking of and hoping for you all. Hoping things get easier and that you get home for the holiday.