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:  uk.virginmoneygiving.com/team/louis

A good place

We had a scan at Addenrbooke's yesterday - Luke's fourth MRI before his first birthday.  The aim was to look at the tumour in his spine, see what the chemotherapy is doing to it, and hopefully decide that the time is right to surgically remove the remainder of the tumour.  The hospital has an oncology team meeting on Wednesdays, at which Luke's scan results will be discussed, so hopefully we will know what the plan is by the end of next week.

Luke needs to have his MRIs under general anaesthetic, as the oral sedation doesn't work for him.  That makes it a little more complex than it would otherwse be, but he deals fantastically well with things.  Yesterday was one of those days where, because of the GA, we couldnt feed him since the previous evening, and he couldn't have a drink all morning.  Add in an hours drive to the hospital (Luke's list of favourite places wouldn't include the car) and we have a recipe for a really tough morning keeping him going until they give the GA.  As it is, he is really pretty good with it all, and just seems to carry on.  There might be the occasional grumble, but nothing major.  I dont think I would be quite as good with it - especially if I didnt actually know why is wasnt being fed or watered, which he cant possibly.

We are at the point in time where we would normally be starting the next round of chemo.  The scan and hopefuly the surgery means that we are still some way from that.  It is great to have a bit of a gap, as we are really seeing Luke back to something like normal.  He is eating pretty well (although in the last few weeks his weight has stayed excatly 8kg, so he has stopped putting it on).  He is pulling himself up to standing, and begining to use his walker (very tentatively).  He is really coming on strong, and all of the thoughts I had back in August and September about having to deal with late development problems because of the effects of either the cancer or the treatment do not appear to be anything more than fears and anxieties. So far, we have been extremely lucky, and every step has been towards the best case end of the scale (except for thevery first step of Luke being ill and the diagnosis being cancer - that wasn't exactly lucky!). 

I have to say, the Paediatric Day Unit at Addenbrookes was absolutely packed yesterday, far busier than we have seen it before.  I know they had a bit of catching up with different patients after the Chrsitmas and new year break, but they really were running at the abolute limit of what they could do.  The nurses worked like absolute troopers, as did the other services we came into contact with (the GA team had two or three paediatric GAs to do before us, and our scan was at 11am, so the team was with us by around 10.30 or just after).  The MRI was obviously fully booked for the day, as the number of people in the waiting area for that was more than normal.  But it all went like clockwork - they really worked terrifically well. 

So we have a bit of a waiting game again now.  That I dont mind.  I am aprehesive about the surgery, as I know it is a major operation very close to the spinal chord, but Luke recovered so quickly from the first op that once it is over, I expect he will be fine pretty quickly.  Then the chemo continues, for at least five months, possibly the rest of the year. 

Luke's first birthday is in a couple of weeks.  It really doesnt feel like he's been part of our lives for nearly a year.  I woul do anything to mean he didn't have to go through all this treatment, and especially to mean he didn't have any pain before the tumour was diagnosed.  But, he is handling everything amazingly well, and we wouldn't change a thing about him.   

Happy new year

A belated merry Christmas and happy new year.  Having had a lovely break from work and spending lots of time with Luke and Letitia, I launched this week into one of the busiest periods of the year at work (hence continued sporadic blogging).

Luke had a great first Christmas - he enjoyed lots of great presents, and time with Granny, Grandad and Uncle Matthew from Italy.  Unfortuantely Nana and Grandad didnt see too much of him, as my mum was ill from Christmas day, and is only just getting over it.  Being neutropaenic through Christmas and into the new year, we couldn't take any chance with Luke. 

We had two trips to the hospital over the Christmas period.  Once of Christmas evening to hput his NG tube back in.  In what must have been the only ten seconds of the day when Luke wasn't getting at least 100% of someone's attention, he managed to pull the tube out.  It was towards the end of the day though, and while it meant a detour before getting home with him, it wasn't too bad and didn't take long at the hospital (appaently not many people choose Christmas evening to go to A&E).  Then on new year's eve, we needed to get Luke a blood transfusion.  Every numer in the blood count was pretty low, and on the Friday before - heading into another bank holiday weekend, the community team and Addenbrooke's decided that although strictly speaking he didn't quite require a transfusion at that point, his numbers were still decreasing and it would take longer to arrange over the bank holiday.  So, onthe Friday afternoon, we were told that we should go into hospital on Saturday.  We were kind of expecting it - Luke has had four rounds of chemo, and needed blood transfusions after three of them now.  He was so pale, so tired and so lacking in energy.  Within a day of the transfusion, he was much more like his normal self.

We have an MRI on Friday - hopefully the fact it is Friday 13th will have not bearing on anything.  The results from this will determine if the doctors are happy to schedule the next lot of surgery on Luke's back.  If that is the case, we would hope to be having that surgery within a couple of weeks.  I am pretty relaxed about the scan - it will take some distraction tactics as Luke needs a general anaesthetic, so has at least six hours without food to go through, but the last few GAs have been relatively easy to get him through.  The scan is in the morning, so some of the fasting period will be while he is asleep, which will aslo help.  I am, however, getting really tense about the surgery.  It is a bit silly, becuase it isn't even scheduled yet, and it is essentially the same operation he had in August.  But, for whatever reason I am getting very uptight about it.  Hopefully I will get on top of things before too long.

So - Luke is doing well overall.  We have an extra couple of weeks in between chemo sessions because of the surgery, so we are just getting to the point where he is completely over the effects of round four, and for a few weeks we have a perfectly normal feeling boy.  He remains fantastic in terms of how he is dealing with things.  Barring the odd night with disturbed sleep lately (we aren't sure what is waking him) Luke is the model child.