Thursday, 5 July 2012

A new plan (of sorts) ...

After much consideration we've got (the start of) a new plan (of sorts) worked out. Adam will head to the Marsden Monday to Friday next week for a different chemo combination - cyclophosphamide and topotecan for those who are interested in such details. This is a more potent mix than the combination we've just done two rounds of, but at this point we don't have much choice. We don't quite know what effect it will have on Adam's already fragile bone marrow, but it's possible he'll end up being neutropenic and in need of blood and/or platelet transfusions. Any fever and we'll be back up to Epsom General waiting on blood cultures. Feels like we're going back to the dark ages. I guess we are. Adam's bone marrow is a particular source of worry, since his blood counts are likely being affected by the amount of disease. Any further progression could have profound consequences, notwithstanding the bone marrow suppression caused by the chemotherapy. We need adequate blood counts for Adam to be eligible for clinical trials. As Phase I trials evaluate side-effects rather than efficacy they exclude children whose counts are already low, as it would then be impossible to assess the impact of the new treatment.

We're planning to use the recovery period after this chemo to decide where to go, and what to do, next. There are a few options, but it's not exactly easy interacting with doctors across the Atlantic. At least I've not been finding it easy, but maybe it's just me. So Plan B is to simply put Adam on a plane, take him to the US, visit a few doctors and make a decision after that.

There is a chance we'll stay in the UK. For a 2nd round of this chemotherapy combination, and possibly for a new Phase I trial that is due to 'open soon' at the Marsden. There are 3 existing Phase I trials, none of which sound particularly promising to me. The new trial is a combination of drugs on 2 of those 3 trials. The only problem is 'open soon', which in oncology speak translates to 'is planned and will be open when it's open'. It's a drug company sponsored trial across multiple centres worldwide, so I think the first the Marsden will know it's open for enrolment is when they get notification from the central coordination unit. It's not actually something over which they have any direct control.

Last night, after he came out of the bath, I told Adam he would be starting treatment again at the Marsden on Monday. He counted out how many days that was, and was overjoyed that he had four whole days left until he had to go back to hospital. His reaction when I told him his hair was likely to fall out again was the polar opposite. He cried. He doesn't want his hair to fall out. He loves his hair. We'd been chatting a few minutes earlier about how Wednesday would be his shower night. Our broken shower unit had (finally) been fixed yesterday, and it was the first time he'd used the 'disco' shower head that Ryan bought him a while back. Now you may be asking yourself what I was doing telling him he was probably going to lose his hair straight after he'd told me how great it was that Wednesday night was going to be shower night from now on. I simply say to you that there is no good time to deliver shit fucking news. It 'felt' like an opportunity to broach the subject. Or maybe I just couldn't bring myself to play along with him at that particular moment. I felt awful of course, but somebody had to do it.

Adam being Adam, and me being me, his state of deep despair lasted approximately two minutes. What he hates most about his hair coming out, he said, is that bits get left on his pillow and it feels itchy. So Mum has been instructed to buy a dozen new pillowcases and Adam will be having a fresh one every night for as long as he pleases. He'll also be selecting a new range of headwear to add to his already burgeoning collection. And last, but by no means least, he gets to cut his Dad's hair any way he wants. And that, though I'm not quite sure how given he doesn't watch football, means you should not be surprised to find me sporting a Mario Balotelli look this time next week. And do you know what? The prospect does not bother me one iota …


  1. Good luck Adam, hope the pillowcases ease the itching and good luck NIgel with the hair cut. Deffo have to post the pics. X

  2. Adam, you have beautiful hair, but you sure do look wonderfully handsome without it! Not a lot of people can pull the look off like you. Keep your little chin up, crossing all my crossables for you xx

  3. Always thinking of Adam x