Another good day

We feel like we are on the 'up' part of this rollercoaster right now. Luke has had another really good day-that's two in a row for the first time in a while! Other than some pretty copious vomitting this morning when they thought it should be ok to stop the anti-sickness drugs, he has been happy and playful all day. He has eaten solids properly for the first time in about a week, taken a proper breastfeed. And he even escaped from the hospital for a while this afternoon to go for a walk.

All of this is tempered with the knowledge that without the oramorph he would be completely different because of the pain. But, if we can be at home having days like this then we will all be happy.  We have been warned of what side effects of the chemo to prepare for already, so we know that we need to really enjoy these days when they are here, as tomorrow may be different.

Tonight's plan (I am home earlier than I have been for some time) is to crack on with some work, make sure I have dinner (I'm still a bit like Luke has been lately -I don't really want to eat but know I have to so am forcing myself - only I don't have to use an NG tube), and then try to get some sleep to ne back at the hospital in the morning. Really hoping for good day number three.

A good day

Well, today has been much better.  We don't know for sure if it is the oramorph having a bit of a build up effect and now properly controlling Luke's pain, or if somehow he is miraculously getting better already.  I suspect I know which of the two it is, but either way, today has been pretty good.  I managed to spend the whole day at the hospital, and other than a few brief periods, Luke was on good form all day.

First course of chemo just about finished, and first blood transfusion of this process also now done.  I found out today that there is a blood donor unit permanently at Addenbrooke's, so while he is still there I will promise to make a point of getting along and donating.  My four months is up around now, and we found out today that Luke is the same blood type as me, so who knows, I may even be directly helping him.  Even if not, it is an easy and important thing to do which I am proud of doing regularly now.  I spent years being afraid of needles and refusing to do it, until I was basically pushed into it by work colleagues in a new job a few years ago.  It doesn't hurt at all, doesn't cost anything to do and, as we are finding out, is tremendously important.

I managed to organise myself enough to spend the whole day at the hospital and not need to pop into the office today.  I have been lucky enough to spend most of the week there this week, which means I have been burning the midnight oil at home, but I have managed to get some done at the hospital too.  I am getting my head around how to use their very slow but very useful wireless network to enable me to be online without grinding the laptop to a halt.  Useful stuff given how much time we are likely to be there over the next year. Incidentally, work colleagues continue to be fantastically supportive, and are really making my life easier in whatever ways they can.  I am very fortunate to be in a position where I have colleagues who can support me, and a job where I can take work away to do at the hospital and at home.  Having said that, I will have to be in the office tomorrow afternoon, but if Luke is as good as he was today that's no problem.

We even had a few visitors today, which was nice.  I like to see our family on the good days, but when Luke is struggling, I really just want it to be the three of us.  We give our parents a bit more leeway, but I do find there is a very fine line between being concerned and supportive and it all being a bit too much.

Letitia and I spoke about her having a bit of time out soon.  She has been in the hospital 24/7 with Luke, and has always felt unable to let me do the overnight bit as she is breastfeeding and Luke has never taken to having expressed milk from a bottle.  But, at the moment he isn't having any breastfeeds to speak of, and is refusing solids, so everything is going through his NG tube.  Which means that I might be able to do the overnight shift at the weekend.  If we can get Letitia somewhere on-site to stay so she isnt too far away that is (she doesnt like the thought of being a hour's drive away from Luke).  I would love it if we can make this happen - I think Letitia needs the break, and I would love to be able to do more than I have been able to so far.

We aren't particularly looking beyond the weekend at the moment, as every day seems to change so much.  The consultants agree that Luke has been more agitated lately, and are worried that we think his legs are starting to lose their strength again, so may look at doing a scan early next week to see exactly what is going on inside him.  I am worried that the oramorph is masking things and might lead us to make a bad decision about coming home or not, but then I guess we have to put our trust in the nurses and doctors to make the right judgement call.

Staying positive (trying to, anyway!)

Today feels like it has been a better day.  Things are still largely the same as yesterday - Luke is progressing with the first cycle of chemo; his pain level is high so the oramorph is flowing regularly and just about keeping it in check; his legs seem to be slowing down again; and he isn't really interested in food.  But, with the pain under control, he is much more settled and comfortable than yesterday, which makes it much easier to take.

We learnt how to deliver top up feeds through Luke's naso-gastric tube today.  Not necessarily something I ever previously envisaged having to do, but it feels strangely great to be able to actually do something useful for him again rather than depend on the nurses all of the time.  We would have needed to know how to do it anyway before he comes home - but that might not be quite as soon as we had hoped.  The plan was for Luke and Letitia to come home early next week.  This cycle of chemo finishes on Friday, and the course of anti-biotics finished late on Monday/early Tuesday.  But, having discussed it with the consultants, if his pain levels dont subside quite a bit, everyone thinks he may be better off staying in hospital for them to observe and give pain relief.  As much as I can't wait to have them home again, we are pretty nervous at the moment.  If things get too much worse, there is even a possibility of more emergency surgery to relieve the pressure in his spine.  If he needs it, then so be it, but obviously we want this to be as straight forward as possible.

Luke will also have to have a blood transfusion tomorrow.  His red blood cell count is low, even though the chemo only started yesterday.  The poor thing cant have any of his own blood left - in the surgery on his back last month he had to have 150% of the volume of his own blood transfused during the surgery because he lost so much.  Which reminds me, I am due to give blood again any time now.

On the plus side, investing in the Britax Baby Safe Sleeper was a great move.  Luke only appears comfortable when flat on his back at the moment, and often needs to be wheeled around the ward (or just his bay if the tree of syringe drives is proving too tricky to wheel around with him).  The only problem is he fills up pretty much the whole length of it, and the lining seems to make him pretty warm.  Still, I'm sure in the grand scheme of things that isn't the end of the world.

At least we've started fighting back

So, to cut to the chase, chemo started today.  The first couple of doses of chemicals far stronger than anything that has ever entered me are working their way arond my son's little body, and are hopefully beginning to kill off the cancer inside him.  It is a momentous day, as so far, the cancer has had it's own way.  Other than surgery to de-bulk the tumour, this is the first real treatment of the disease rather than the symptoms. 

Other than that this has been one of the much tougher days,  Luke has been in so much pain, it is just like immediately before he was diagnosed (except his legs are still moving at the moment).  He is right off his food, so the only nutrition he is getting is through his NG tube.  The pain relief always seems to run out before the time for his next dose.  He is hoarse from screaming and just absolutely wiped out. 

I have absolutely no idea how quickly the chemo will impact on the tumour, and have no idea if the side-effects of the treatment will, in the short term at least, outweigh the physical improvement he may feel from it.  I only hope that it isnt this hard all year.

Tomorrow is another day... but before then I have to drive home, do some work and try to get some sleep.  I think I have the much easier end of the deal compared to my wife.

Ups and downs

Great news first - bone scan results back and all clear. That means we are only dealing with the spinal sarcoma rather than any spread to other areas.

I think it is also great news that chemo starts tomorrow. Who knows how Luke will react to that, but we will finally be starting the treatment rather than just dealing with the symptoms.

On the down side, Luke has been suffering quite a bit over the last couple of days, and today has gone onto oramorph to complement the calpol. Hardest thing in all this is seeing Luke in pain. At least in hospital there are all the nurses and doctors to help - worried about when he comes home, as I can't see the chemo materially changing things straight away. Can't wait for him and Letitia to be home though - a week and counting....

Torn

It's Sunday night.  I have spent most of the day at the hospital with Luke.  It's so difficult.  The first consultant to see him at our local hospital said he could see an unwell baby who was trying so hard to be happy.  We obviously now know how unwell Luke is, and he seems to still be suffering from the infection last weekend (or from something else now!), but he is still trying so hard to be happy and smiley.  Today he has been great for periods, and then has just seemed miserable and fed up for others - and who can blame him!  It didn't help that he decided to pull his naso-gastric tube out this afternoon (again).  This means he has had to have a new one put in about four times in the last four weeks.  While it doesnt seem to hurt at all, he obviously doesn't find it a fun experience!

I had to leave relatively early this evening to come home and catch up on some of the work I have missed lately.  I am just about staying afloat in that respect, thanks primarily to the brilliant efforts of various colleagues, with a fair bit of late night working on top.  It is rotten having to leave Luke and Letitia at the hospital.  I know I have to keep on top of work, as the mortgage needs paying and we have a long road to go down with this, and while colleagues have been amazing at helping me so far, I cant expect them to do that much for a whole year or more.  I can see that finding the right balance with this is going to be one of my bigger challenges.

Anyway, off to bed.  Aim to be at the hospital before work, and in the office by 9.  Not sure quite how much sleep I'll manage to get - pretty anxious about bone scan results tomorrow, and obviously aprehensive about chemo starting in a day or two, even if part of me cant wait to get it underway. 

Just deal with it

Just a quick one this morning. Yesterday Luke really wasn't himself, and after a battle which lasted nearly all day to keep him happy (most of which was fought by my wife) we reached for the calpol again - and it worked brilliantly! Only problem is working out quite what is bothering him. Still maybe all the doctors and nurses can help with that.

I think I have moved on a step in terms of dealing with things - I went shopping last night, bought good if a little bit basic food for dinners next week, bought some fruit and beg etc. Even bought breakfast cereal. It's not that I am incapable of shopping. Far from it. I think up until now I have been living each day as a standalone period, not thinking about tomorrow or next week. The more I plan, the more organised I will be, the more time I can have at the hospital. And the cheaper all this is!

Bad back baby transport

Today Luke had his bone scan.  We wont get the results until Monday, but at least it is another task out of the way.  Even relatively straight forward days like this make me worry, as Luke needs a general anaesthetic for these scans, as the oral sedation that they give many other kids doesn't send him to sleep.  I know the risks of a general anaesthetic are pretty low, but it still worries me.  Plus we have the added bonus of having to keep a baby distracted for all the hours that he cant have anything to eat beforehand.  Having said that, Luke was brilliant this morning and slept through quite a bit of that time.

The plan from here on in is to continue the antibiotics until a two week course has finished.  That means around another ten days.  However, the intention is also to start chemo next Tuesday.  By the time this first course of treatment is finished, there will be more than enough time to finish the antibiotics before Luke's immune system starts to suffer from the effects of the chemo.  Obviously we are also pretty terrified about what the chemo will do to Luke, but at the same time I cant help being really keen to get going with it, sand actually feel like we are fighting back for the first time.  Plus, the sooner it starts, the sooner it is over.

One of the first practical issues we encountered in dealing with Luke's cancer was Luke not being able to sit in his car seat after the surgery on his back four weeks ago.  It was pretty marjor surgery, to de-bulk a fairly large tumour from within his spinal column.  For several days afterwards Luke was on morphine, but recovered the movement in his legs very quickly.  His back has only seemed to bother him over the last couple of weeks if he has been sat up for too long (which means more than a few minutes sometimes).  We had to use his car seat a few times (to get home from Addenbrooke's, and then to go to our local hospital for daily check-ups while he was at home waiting for the tumour biopsy results to come through).  Each time, he ended up screaming in a particular way that we have come to associate with him being in pain.  So, we had to find an alternative.

There are a couple of lay-flay car seats on the market, but not a huge range.  These are basically meant for new-born babies.  Having looked into them, we bought a Britax Baby Safe Sleeper - meant for babies up to six months old, or 10kg.  He is older than six months, but considerably under 10kg, and initially it worked very well.  Given Addenbrooke's is nearly an hour's drive away, and we are making regular trips, we need Luke to be comfortable - and since we bought this lay-flat car seat, he has been absolutely fine in the car.  We even bought a Britax B-Mobile pushchair off Ebay so we had the wheels and could take the lay-flat car seat straight out of the car and make it into a pram.  The trouble is, Luke is a tall baby, and only has about another half an inch to go before he will be too long for it.

I have struggled so far to find any solution as to how babies with back issues are safely taken in cars.  I assume we aren't the first parents to face this issue, but so far haven't been able to find an answer.  The physiotherapist at Addenbrooke's is also investigating for us.  If we find out, I'll post the answer.  Regardless of how well Luke continues to recover the strength in his back, this is an issue we will face again, as the plan is for thime to have a second operation to remove the remaining tumour once it is established that the chemo is working, and by the time that happens, I am sure he wont fit in what we have.

How did we get here?

OK.  Where to start.  The idea of this is to give me a mechanism to document some of the main things my family is going through, some of the issues we are dealing with, the worries and concerns we have, questions we have, and as we find the answers to them, to get them noted down too.

A lot has happened over the last six or seven weeks, and we have a tough year ahead (give or take a few months, from what we understand).  I don't have the energy to cover everything from the beginning right now, but will make sure I do eventually.  So, I will start from where we are today, and gradually fill in how we have got here.

My son, Luke, is almost eight months old.  Tonight he is in hospital.  My wife is staying with him.  They have been there all week, and will probably be there all of next week too.  Today has been one of the slightly more normal days of recent weeks - I had a meeting in Suffolk this morning, went to see them in hospital for a couple of hours, then had a meeting in Peterborough.  Nothing too scary has happened to Luke today, so I haven't spent too much time at the hospital, but have spent all day worrying about him while I haven't been there!  On my mind right now is a bone scan he is having tomorrow afternoon.  It isn't expected to show anything, but is the last place the doctors need to look in is little body, and the results are crucial to what comes next. 

Luke has childhood cancer.  So far it is diagnosed as an undifferentiated spinal sarcoma (in other words, he has a tumour in his spine, but tests have not been able to classify specifically what type of cancer he has).  We found this out four weeks ago today.  Luke had been unwell with non-specific symptoms for a few weeks.  Having manoeuvred through the health system to a terrific paediatric consultant at our local hospital, over the period of a couple of days Luke stopped being able to move his legs.  Our consultant spent some time examining Luke, and decided we needed an MRI, and should choose between Addenbrooke's and Great Ormond Street.  For various reasons we chose Addenbrooke's, and a couple of days later Luke had his scan.  First thing next morning, a team of doctors entered his room to tell my wife that the scan showed a tumour within his spinal column, which would have been putting pressure on the spinal cord and was stopping his legs moving.  They needed to operate that day.  Tomorrow's scan is to look within his bones, which is the last place to check and see if the cancer has spread, or if we are just dealing with a primary tumour.  We have already had a big scare with the cancer appearing to have spread to Luke's liver - and the prognosis shifted significantly in the wrong direction while that was thought to be the case.  Fortunately his liver is clean, as is everywhere else (touch wood). 

This week's trip to hospital was meant to be in order to have the bone scan on Monday, and to commence chemotherapy on Tuesday.  It hasn't worked out as planned, though, as Luke picked up an infection late last week through his hickman line.  This showed itself on Sunday as a really high temporature, admittance to our local hospital and the start of around two weeks of antibiotics to clear the infection.  His hickman line has had to be removed, and until the oncologist is sure the infection is gone, chemo is not an option. 

Over the last month we have had so many ups and downs (mainly downs, if I am honest).  It really is a real life rollercoaster.  We have been wrestling with so many questions.  This isn't to pour out emotions to any great extent, as what we are going through is ultimately a very personal thing for my family.  This is for me to log what is happening and when, to give me a way to keep some sort of order and record (my mind is a bit all over the place at the moment), and to write down what questions and issues we are facing from a practical perspective.  The sort of things which have come up so far include:

- How do I work effectively while all this is going on?  We have a big mortgage to pay, and I cant expect to keep being paid while taking lots of time off.
- My wife was due to go back to work in January when Luke is a year old.  Should she still do that?  Can we afford for her not to?  If we can't afford it, what do we need to do in order to make it affordable?
- We have been told the treatment will probably take around a year, during which Luke will be very susceptable to illness at various points.  That possibly/probably means no baby classes, or interacting with other children to any great extent over those periods - but my wife also gets a lot out the classes and meeting other mums and breaking up the days.  Is there anything that can replace these things but be done at home?
- What practical things do we need to do to give Luke the best chance of beating his illness?

There are countless other things which will come back to me as we move forward with this.  I don't mean the unanswerable 'why is this happening to my little boy' - although I ask myself that question many times a day.  And I don't really mean the medical questions which our consultants can deal with - although obviously the answer to questions like 'what are the likely side effects of the chemotherapy' will in themselves lead to other questions on how we need to deal with it.  I guess ultimately it will be our manual for living through what we are embarking on.  I have looked and looked and haven't really found what I need, so will do it myself.  Having said that, there is lots of useful material out there on the internet, from MacMillan etc. 

Enough rambling for tonight.  I need to be up early to get to the hospital before 8am.  I might not be sleeping much at the moment, but I at least need to try.  I will establish some sort of order and fill in a bit more of the detail and issues we have thought of so far another day.