Saturday, 8 May 2010

The week that was...

It's been just over a week now since we received Adam's test results and found out that he did not respond at all to the last 2 cycles of TVD. It wasn't the news we had hoped for, but at the same time we drew some immediate comfort in the fact that there was no progression either. In the week leading up to the tests Adam had complained of more aches and pains than at any time during the previous 6 months of chemotherapy, and that had ratcheted up my fear until is was almost unbearable.

Having had time now to reflect on the results they are obviously not good. His particular type of Neuroblastoma (one name many diseases) has become resistant to the most effective frontline drugs that are available to treat it. And nobody knows why. And nobody knows what it means. Has the treatment kept the cancer at bay? Or has it done nothing and the cancer has stabilized regardless? And what happens next? How much time do we have before it starts to spread again?

Personally my view has always been that I would rather have Adam in treatment than not. It's lovely when he has some time when his blood counts are up and he can get out and enjoy doing things, and we don't have to worry quite as much about hospital visits and transfusions and germs and infections. But at the same time he's got this time-bomb inside him and I feel that every day he is without treatment is a day for those cancer cells to go forth and multiply. I've said it before but I can’t imagine Adam not being 'under treatment'. Even when he gets to remission and completes traditional therapy we will always be doing things that (we believe) may improve his chances of staying cancer-free.

It came as a total shock to be told that the drug combination the doctors want to start Adam on next is classified as 'high cost' and can only be given after various approvals including that of his Primary Care Trust, to whom Adam is nothing more than a name and a bundle of papers. Adam's blood counts were good, very good in fact when compared to the same period in earlier cycles. With the Bank Holiday and the need for the drugs to be prepared the earliest he could have started treatment was Wednesday, so that's when I wanted him to start. There have been a number of instances when Adam's chemotherapy would have been delayed had I not intervened and advocated for him. Instances where protocol and procedure prescribed one course of action but with our knowledge of Adam's response patterns we felt we were sometimes better placed to decide. Better placed to decide than qualified doctors - I could never have imagined that 9 months ago. But I'm serious, and I'm not being delusional either. I'd wager that a lot of the doctors we've seen in our local hospital have never attended a case of Neuroblastoma before. I'm also pretty certain that Adam has received extra attention on one or two occasions for the same reason.

The medical experts at the Royal Marsden believe this new drug combination will give Adam the best chance of clearing his bone marrow - the first hurdle that we are still, 9 months into treatment, trying to get over. To me that was the only thing that was relevant. I just couldn’t get my head around the bureaucratic nonsense that followed. What was there to decide? Sure let somebody somewhere decide whether these drugs can be prescribed or not for any child. But don't have individual trusts playing God with our childrens’ lives. The trust have now approved the first two courses of treatment so we hope the next set of tests show a positive response and Adam can go on to have more if required. The tests in question will take place in around two months time, and it’ll be the fifth time we’ve gone through it all and hoped that Adam is ready to move forward. I think each time we become more resigned to the fact that he will still have detectable disease. When his results finally come back clear I will probably fall off my chair. In case you are wondering I refuse to use the word ‘if’ anymore, it’s always ‘when’.

As it turned out on Tuesday night we discovered a lump on Adam's bottom, just under the skin and painful to the touch. Alison took him to have it checked out on Wednesday morning and he was started on a course of two different antibiotics. Even that isn't simple anymore as he previously had an allergic reaction to one of the most common antibiotics and so is unable to be prescribed any penicillin based medication.

On Friday we had a follow-up appointment and there was no real change. So Adam was started on a 7-day course of IV antibiotics in addition to the tablets. His consultant thinks it could be cellulitis, in which case we hope we got it early and it doesn’t progress. This morning we were up at Epsom at 8am for the next dose of antibiotics and we’ll be back at 7pm tonight. But it’s fine - just a 15 minute or so visit. Compared to some of the horror stories I’ve read about children being cared for at other hospitals I think we are incredibly fortunate to have Epsom General as our local. Maybe it’s because it’s a small hospital, we know all the nurses, and there is no intensive care unit. Whatever the reason I don’t think we could have a better place to take Adam for all his non-specialist treatment.

We are back at the Marsden on Monday for another follow-up, and hopefully, fingers-crossed, Adam will be alright to start the new combination of drugs in the afternoon. If he doesn’t I can foresee another week of worry on the horizon.


  1. Hi Nick, what happens once the all the money has been raised for the trip to America as its not going to take long to raise the other third?
    Thinking of you all Carolina(Quest)

  2. Carolina,
    I am going to do a new post in answer to your question. You are the second person to ask me that today, and I think by posting it separately rather than as a comment it will be more accessible to everybody.