childhood cancer

childhood cancer

Saturday, January 28, 2012

Time marches on

I can't believe we're at the end of January already.  It was Luke's first birthday on Thursday - to think a whole year has gone by since he arrive into our lives.  In many ways it doesnt feel anything like a year has gone past, but then when I think about everything we have been through, it feels like it should be much more than a year. 

One major operation, three smaller operations, four MRIs and various other scans, eleven general anaesthetics, five rounds of chemotherapy, a grand total of approaching two months staying in hospital, and the year has been pretty intense for the first year of anyone's life.  With at least fou more rounds of chemotherapy, potentially then up to six months of 'maintenance chemo', more scans, another major operation, general anaesthetics etc, the next year isn't exactly going to be a piece of cake either. 

But, what we have is a fantastically happy, cheerful, fun, engaging little boy who is reaching all the milestones at about the right time, despite what he has been through.  Sure, he is only just getting teeth numbers three and four, but for long periods of time he hasn'r eaten much at all, and as I understand it, eating encourages teeth to come through.  Despite the worries about whether his legs would regain the strength they were building up before the tumour meant he couldn't use them; worries about whether there would be any long term damage to them and his ability to use them.  We wont know for sure for some time yet, but everything seems to be pretty normal - he is crawling like a rocket, climbing all over everything that he comes across, standing himself up quite happily.  We haven't got as far as walking yet, but his Dad had two left feet as a kid, so even if that takes a bit longer to come, it's probably for the best!  We are genuinely lucky to have Luke, our perfect boy.  He doesn't deserve the cancer and the punishing treatment, no one does.  But he has it, and without even knowing it, he is dealing with it fantastically well.

And, we also have a fantastic amount of support around us, which helps enormoously.  My wife's parents do a huge amount for us all, right from being around to help at bathtime every evening (it's a two man job to make sure the NG tube and hickman line don't get a dunking, and I'm rarely home from work in time to do it), to taking Letitia out shopping now and then for a bit of normaility, helping round the house etc.  My parents too help out - my Mum can be foud every Monday doing our ironing (she had a few weeks off recently, but she was in self imposed exile - ill, and unable to see Luke for fear of passing it on).  Our friends understand why we can't see many people - especially those with children while Luke is neutropenic.  Just the sheer number of Christmas cards and presents, and now birthday cards and presents, that we got for Luke means we know there are a lot of people out there thinking of him. 

All of that doesn't mean that it isn't hard at times.  Dwell for too long on thoughts of the future, and alongside the eagerness to get this year over with, finish the treatment, and begin to live a normal life again come thoughts of slightly longer term - will the cancer stay gone?  Will it come back because we haven't been able to do radiotherapy?  Will we have to go through all this again?  Will Luke have any long term side effects?  Questions that no one can answer for certain, and which terrify me.  But, then I bring myself back round by think, we are very lucky compared to many other people.  Luke's tumour was in a place where it could be identified before it did irreversible damage and could spread beyond the primary tumour site.  It is in a location where surgeons can access it without extreme measures (we know one little girl about Luke's age on the cancer unit with a tumour in her foot - the treatment has involved amputating the foot).  He was so young when he got it, that the prognosis from the start was many times better than it would have been had the tumour developed in even just a couple of years time.  And Luke is holding up well against the treatment.  Sure, the chemo obviously makes him feel rough, lose his appetitie, sick etc, but he soldiers on.  He's a tough little boy.  Rather than think too long about what might happen in the future, I think a lot about how lucky we are right now. 

We were expecting to be having surgery around the end of January - to try to cut the rest of the tumour out.  We had an MRI around the middle of January.  We were then called in for another round of chemo a little over a week ago while the surgeons reviewed the scan and planned what they want to do.  As it happens, th spinal surgeons have asked for a little longer on chemo and another scan in a month or so, so the surgery isn't going to be before March most likely.  It is a bit of a double edged sword - I had spent many sleepless nights in January as the time got nearer worrying about this.  It is not a minor little operation, and although it will effectively be a replay of the emergency surgery Luke had in August, that was a big deal too.  I wont describe exactly what the surgeons wil do, but suffice to say it is expected to take 6-8 hours, and last time around Luke lost one and a half times the total volume of blood in his body - everything he came out of that theatre with was someone else's.  Then the time in intensive care afterwards isn't exactly fun.  However, having got near to the expected time of the operation, for it to be moved away means I am likely to go through the whole process again! 

Anyway, for now we wont worry about that.  We'll keep on getting through the fall out from the last lot of chemo, then just as he recovers no doubt we will start another one.  But every round we get through brings the end of the treatment about a month closer. 

Finally, I was thrilled to get an email from one of my oldest buddies a few weeks ago.  I have known him for about 20 years now, and pretty much the last big 'normal' thing I did before Luke got ill was go on his stag do - and then we all went to the wedding.  Unfortunately he and his wife also have another friend with a child who has cancer.  Together with one or two other brilliant people, they are running the London Marathon this year.  They are raising money for Children with Cancer UK.  If anyone reading this is thinking of giving money to charity in the next couple of months, please think of these guys and the link here:

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