childhood cancer

childhood cancer

Saturday, April 21, 2012

Almost there

Since the last post on the blog, we havemet with our consultant.  The big news is that there wont be any maintenance chemo.  This means we now have one more round of chemo to get through in the next couple of weeks, a couple of tests, an operation to remove the hickman line, and then we start the regular MRI scans and keep fingers, toes and everything else crossed.  This is the best position we could have hoped to be in at this point, and now it is sinking in, is a big relief.
We would obviously do whatever we are told to make Luke better - there is literally nothing that either of us would not do with that goal in mind - and as much as we really didn't want another six months of chemo, we were hardly likely to say no.  And understanding that part of the treatment needed to be the extra maintenance chemo, although no-one ever actually said we would definately be having it, we had resigned ourselves to it.  Ultimately being told we wouldn't be doing it meant we needed to have a conversaiton about why that was - why is a whole key stage of treatment not being undertaken? 

In essence, the answer is that the maintenance chemo wont actually make a difference in whether or not Luke's cancer will come back.  Doctors around the world have never been able to classify Luke's tumour, beyond it being on a scale starting with a type at one end that just needs surgery and chemo to cure it (I say 'just' - but you know what I mean), to the other end of the scale being a type that will always need radiotherapy, otherwise even if the tumour appears to be gone, it will almost certainly return.  Either the treatment we have had has dealt with it, or there is no way it could permanently make it go away without radiotherapy.  As we have recorded on the blog before, radiotherapy was on the table for a while, but ultimately Luke is too small at the moment and the proximity of the tumour site to his kidneys means they would been taken out, which causes too many compications. 

Hence the regular MRIs from now until who knows when - to make sure that if it does come back, we catch it early before it does any damage. 

So, we have either beaten it, or we have just made it through the first battle (well, once the last round of chemo is over).  Either way, for the first time since Luke first become ill, we are starting to feel like we can actually look forward to something.  Luke will have another tough time with the last round of  chemo, and the operation to remove the hickman line wont be much fun, but compared to everything he's already handled, neither of these things are too scary (everything becomes relative).  And Luke is doing better than ever before right now - he is so happy, he is eating really well, he is not being sick in the car anymore, he continues to develop absolutely normally (not quite walking yet, but wont be long) - and even if we have a long list of things to watch out for in terms of effects of the treatment he has had (and potential damage caused by the tumour in the first place), there are processes in place to keep an eye on them.  And, although I struggle with it at times, they really do belong in a bucket of things that we can do nothing about - if he will have a curved spine due to the surgery, he will have a curved spine, and that will be treated once he is big enough.  If he needs physio to help with leg positioning and walking etc, then he has it.  Nothing is as daunting to think about as the cancer itself. 

We are still a bit emotionally wobbly at times, and exhausted from months of just wishing I could take all of the pain and discomfort away from Luke and go through it for him.  Once things have stabilised in my mind a bit, I will get back to some practicalities on the blog, which may be a reminder for us if we ever have to go through this again, and who knows, may help someone else.

As a final note, London Marathon is tommorrow.  I have a good buddy running in it with a small team to raise money for Children with Cancer UK.  The link to sponser them is on the blog - if you are reading this and can spare anything, please do.


  1. Hi,

    I have a quick question about your blog, would you mind emailing me when you get a chance?



    1. Hi Cameron - fire away. Can't see your email address so can only reply to your comment - my email is


  2. I was thinking of your blog today, and I hope that your son is doing well.