A plan of sorts

Luke has been into hospital, had the fourth round of chemo, and come out again in good time for Christmas. He seems to be finding it tougher in the sickness department but his anti-sickness prescription has increased and will hopefully keep the worst of it away. While he was in hospital I shampoo'd his carpet, as it was getting a bit smelly in his room from all the sickness episodes that couldn't be beaten with cleaning sprays. It lasted about 24hr hours after he came home and needs doing again now! Oh well, next time he's in again we'll do it.

We had a good long conversation with our consultant while Luke was in. Radiotherapy is now totally off the agenda, so we won't be off to Florida. On balance the risks outweigh the benefits. Apparently the specific tumour Luke has (they still haven't fully classified it) lies in a range from one which they would always need to treat with radiotherapy to one which they would almost never need to. If its the latter, the chemo and surgery should do the trick. At this moment, because of Luke's size, his kidneys are in close proximity to the tumour site. The radiotherapy would almost certainly lead to kidney failure. That would necessitate a transplant. The real kicker is that, should the tumour come back, or if luke got cancer later in life, he couldn't have chemo again.

Clearly if the tumour doesn't need radiotherapy then we don't want to put Luke through that with all of its consequences. If it does need radiotherapy then the tumour will most likely come back. But by that time hopefully Luke would be older, bigger, and his kidneys would be further away.

So the plan is now to have an MRI early January, surgery late January, five more sessions of chemo similar to those he has already had, then up to six months of maintenance chemo. Then we wait, cross fingers, toes and everything else, and have regular MRI's for the next
Five years and beyond.

There isn't as much certainty as the old plan, but there is less risk. We can live with that. Especially given my last question to the consultant was can they still cure Luke. Looking straight into my eyes, the answer was that yes, that's still the aim.  That has to be good enough for us.

Have a great Christmas everyone. We will be spoiling our amazing son rotten on our first Christmas with him in our lives.

Nervous times

I have been really poor at making time to do the blog lately - I think this is the first post for three weeks.

Firstly, an update on Luke.  He is doing fantastically well.  He has started properly crawling, and is trying to stand (with limited success).  He was always quite vocal, but has really found his voice - even if the only words so far are Mumma and Dadda!  And he certainly knows how to tell us what he wants - usually by pointing.  And, more importantly than anything, he is full of smiles and laughter.  I find that during the week, when I dont see very much of Luke because of work, I can get quite worried about things.  At the weekend, I some get to spend some real quality time with him, everything just seems somehow much better.  That isn't to downplay how much we have to go through in the coming months, but Luke is made of tougher stuff than me, and seeing how he is handling everything just makes it easier for me.

So, what do we have to be nervous about?  Luke was due to have the fourth round of chemo last week.  My wife took him into the hospital on Tuesday morning, but we weren't too hopeful that his blood count would be high enough.  He had to have an echocardiogram anyway, which was fine, but ultimately the chemo didnt happen.  While at the hospital though, my wife had a few words with out consultant, who mentioned that there are a couple of hurdles to clear with the issue of radiotherapy.

I wrote before about us possibly being referred to Florida for proton radiotherapy in the new year.  Assuming Luke's tumour has continued to shrink, after the fourth round of chemo is finished, an MRI will be done, and as long as the results are as hoped, surgery to cut the rest of the tumour out will happen.  This will probably take us to the end of January or early February.  As soon as surgery is done, we were told that proton radiotherapy treatment would be required, and that would mean going to Florida, as that is the only place with the right machine to deliver this to a tumour in the spine, and which is able to do general anaesthetic on a baby.  That would be anywhere from three to eight weeks.  The reason the radiotherapy is required, as we understand it, is because of the location of the tumour.  Being right next to the spinal chord, no margin of error exists to ensure every cancerous cell is removed.  Radiotherapy will ensure that all of the cancer that the tumour site is gone.  The chemotherapy is helping with that, but is more to ensure that any cancerous cells floating around Luke's body are mopped up.  As I said - that is entirely as we understand it, and probably isn't entirely technically correct, but hopefully you get the point.

Last Tuesday, our consultant said there were a couple of hurdles with the radiotherapy.  We expected that funding may be an issue.  The consultant is fairly confident that the NHS will pay - we really hope it does, but if not, and this is the treatment that is needed, then just name the price and we'll find a way.  But, it hasn't even got that far yet.  Discussions are ongoing about whether the particular type of radiotherapy can work given where the tumour is; and over whether his particular cancer will respond to that radiotherapy.  Because it has never been fully classified, it is being treated as much on the basis of what it isn't as what it specifically is.  The team at the hospital is continuing to have discussions about it.

When we were given this news, it felt like a big kick in the nuts, to be honest.  We felt like we were making really good progress, and for the first time, had the plan that would see us through to a healthy, cured Luke.  Now that is being unpicked, and we don't really know what is happening again.  Because we don't know exactly what the cancer is, we have never been given a treatment plan.  Most other parents on the ward have a plan setting out x number of chemo sessions, surgery at whatever point, then more x number more sessions of chemo etc.  We have never had that plan, it has been more a case of suck it and see.  We understand that, and have the ultimate faith in our consultant and his team, because so far, everything they have done has made Luke get better.  But there is a long way to go.

Several people have criticised the hospital for giving us this information without having the final answer or giving us an alternative.  Only a couple of months ago, I was expressing my frustration at not having enough information about what was happening, why things were not 100% clear, and was asking for more information, even if it was just to understand what conversations were happening and why.  I will admit that I could have done without knowing these questions were in the air for the last week or so, but if there are question marks over things, I want to know.  It is only right that everything is considered to the n'th degree - there are risks and consequences of all treatment options, and at the end of the day, I want to know that all aspects have been thoroughly considered, and that we are only putting Luke through things which are likely to help make him better.

So, tomorrow we should be going in to start round four.  And we should have some time with the consultant to properly discuss what the current thinking is with the treatment plan, and understand what that means.  There are a million follow up questions that virtually every element leads to, none of which I want to dwell on too much until the meeting.  I had a big emotional wobble one evening last week, but I am focusing on staying positive - that is what Letitia and Luke need, and worrying about the worst case scenario the whole time gets becomes very draining.

Hopefully after the next day or two I'll have some good news to post.

Steadily carrying on

I cant believe another week has already passed by since my last post.  It's been another seriously busy week, which is why I haven't had time to keep the blog up to date.  Luke has now had chemo round number three, and is back home again.  He went in on Tuesday morning, and was back home again on Thursday night.  He is getting to be a dab hand at dealing with things in hospital really well.  There weren't any dramas, any particular problems, everything went exactly as planned.  Which is terrific, as we've had enough surprises this year and just yearn for the quiet life for a while. 

The nurses were all really impressed with how much weight Luke is putting on.  I am amazed that he is managing to, as he has fairly long periods where he wont eat in between chemo rounds.  We have been doing the top up feeds with Infatrini, but I have been  little dubious about how much it can really help.  Turns out the stuff must be mde with rocket fuel - Luke has bags of energy on it, and he is putting weight on nicely.  We are at the stage again now where he isnt eating properly - and I don't think he will for another week or so (althouh Granny has made a really nice looking carrott soup for him which he seemed to be interested in earlier, even if he didn't have a whole portion - hopefully tomorrow he will have more of it).  He doesn't seem to bad otherwise as far as chemo side effects go - between the second and third round there waas quite a lot of sickness, and generally appearing to be uncomfortable and unsettled.  This time (so far) the anti-sickness is working well, and stopping eating is the only real visible side effect.  He is a happy little chappy otherwise at the moment, which is just so amzing to see, knowing and appreciating what his little body is being put through. 

We are stuggling a little with finding hats which Luke can wear in bed.  As he has lost most of his hair, and has gone through a period of waking at strange times, we wondered if his head was getting cold.  Trying to find a bed hat big enough for a 10 month old to wear has been a challenge - M&S came up trumps, but there isnt too much room to grow in them, and we have bought their biggest size!  It will do for now, but it anyone has any ideas it would be helpful.

We dont know anything further about the radiotherapy in Florida at the moment.  We've been looking on the website for the organisation, and it certainly looks impressive.  The first big question is will the NHS cover it - as I mentioned in the last post, our consultant is pretty confident that they will.  I really hope so, otherwise the mortgage will be going up, and we'll be investing in some collection buckets.  Either way, if that is the place that can help to cure him, then that is where we will go. 

My mum popped round earlier, and mentioned something which got me thinking.  One of my relatives has a little girl with childhood arthritis.  There is a lot of treatment involved in that which the girl doesn't like too much (injections and so on), and clearly a degree of pain and discomfort throughout much of every day.  I remember at the start of this year, when my Nan was ill in a hospice, seeing this relative at the hospice - and she was telling me a little about what life was like.  It didnt sound like anything anyone would choose to go through - and from the outside you can say 'I just dont know how you cope with that'.  As we have found at, as parents you find a way to cope - and you just simply do whatever it takes to get your child what they need.  What I thought this afternoon when my mum mentioned this relative was, at least Luke should be cured of his cancer and go on to live a normal, healthy life.  Obviously there is a long way to go before we can say that is what has happened, but that is the aim - cure.  Cancer gone.  Doesn't come back.  Ever.  Not everyone with an ill child has that hope or goal to aim for - they know that the illness is for life, and so is the treatment.  That is tough, and must be a real mind bender.  What we are dealing with is awful in a million different ways - but at least we think it will all be over one day.

Positive progress

Well, finally I have a bit of time to update the blog. We've been so busy - both with Luke, and at work. I am having the tyres changed on my car right now, which means I have half an hour or so just to sit and relax!

Luke is doing well. The third round of chemo was meant to start last week. They did blood counts three times but his neutrophils kept getting lower. It seems Luke wants more than three weeks between rounds-which is fine by us. The first week or ten days after chemo he really struggled, and we know it will be hard for him after the next round, so a bit longer with him being happy and seemingly feeling good suits us fine.

We had an MRI a week ago, and the results are great. His tumour is already shrinking, and the doctors are really pleased. The plan from here on in is rounds three and four of chemo, which will take us up to Christmas, then another MRI. If things are progressing along the same lines they are now, then surgery will happen within a couple of weeks to cut out the rest of the tumour. Then, and this is the big news (along with the tumour shrinking) they want to send Luke to Florida for radiotherapy. Then there will be up to six months more chemo.

So, Florida. Apparently Luke needs proton radiotherapy. There is pretty much only one place with the right kit to do it on a spinal tumour, and that can do general anaesthetic on a baby. That is Florida. Somewhere between 3 and 8 weeks will be needed. Felt really odd hearing about this - very daunting, like when we were first told about needing Addenbrookes or Great Ormond Street. But, also feels really encouraging given at one point there was a risk treatment wasn't even worth trying. We don't have many deatils yet about the trip, suffice to say there is a lot to do beforehand, and a lot of arrangements to be made by Addenbrookes before we know enough to sort ourselves out. But, we are feeling pretty positive about the whole thing right now. Relief!

Where to start?

Well, its been getting on for a week since my last post.  I don't know why exactly, it jut feels like it has been a really hard week, and I have been too tired to find the time to write the blog.

First thing's first - Luke is doing ok.  He isn't eating at all well, hasn't wanted any solids at all since the chemotherapy really, and so is surviving on breast feeds and top ups through his NG tube.  The biggest concern with that is that we are really struggling to give him as much as the nutritionist at the hospital advised us to in the event that his stopped eating solids.  140 ml six times a day is a lot when even 100 ml seems to make him uncomfortable.  We keep on trying, but I expect he is losing weight again at the moment, and I just hope he will want to have solids again before too much longer.  Even trying all of his old favourites, and new and exciting things, he just doesn't want anything going into his mouth.

He has been much more sick after the second round of chemo than he was the first time.  Several times this week we have had quite violent sickness, which isn't at all nice for Luke.  We had been prescribed one anti-sickness drug which we were giving him.  We spoke to the hospital who told us to up the frequency of doses, which we did, but he was still sick.  We then asked them if something else could be prescribed, which they did right away.  We learnt a lesson that day though - Addenbrooke's asked us where it was easiest to get the prescription from - our GP or our local hospital.  We said our GP - the surgery is only a short walk away.  But then we found that no chemists in the area could fill the prescription straight away - they all had the right drug, but none had it in liquid form.  My poor step-dad was trying different chemists, I was ringing round ones slightly further afield, the community nurse happened to be with Letitia and Luke at the time and was calling her colleagues to see if they knew where it would be.  In the end, the community nurse got another prescription through the local hospital which a friend then went and picked up.  Now we have some (several bottles in fact) we will be ok, as we can order it from the chemist and give them a day to get it in.  But when we really needed it, the thought of waiting even another hour was a bit tough.  So, if we ever need a new drug again, we will get it straight from the hospital.

But, even with the new anti-sickness drug, Luke was still sick again on Thursday - so much so that it forced his NG tube out!  Since then he has pulled another two tubes out, so in the last 36 hours he has had his tube put in three times.  That is currently a record (one that I am sure Luke really doesn't want to beat).

I have picked up a cold from somewhere - it means I am trying to keep somewhat of a distance from Luke much of the time.  It's easy when I'm at work, obviously, but for some reason his sleeping patterns are all out. He has still been up every evening this week when I have got home.  It is brilliant for me, because I get to see him, but it does make it hard work for Letitia.  On Tuesday he was up until 11pm.  I think actually he is turning into a teenager, because he is then sleeping in more in the mornings - 8.30ish has become his normal wake up time.  Trying to keep at arms length from Luke so I don't give him my germs is difficult, so I am using the alcohol gel like it's going out of fashion, and breathing the other way!  I am also sleeping in the spare bed to try and make sure Letitia doesn't get it.

I know we were told to expect the second round of chemo to be harder than the first, and that the side effects will get worse over time, but I hope it doesn't keep getting worse at this rate.  Generally Luke is doing brilliantly, and he is really happy most of the time.  I am worried about his not eating, though, and the sickness isn't at all good.  Still, we have the MRI on Friday, so we will finally know what this little bugger looks like and whether we are beating it yet.  That is something which, while I am nervous about finding out that it's not progressing quite as well as we want, I really need to know.

Early release for good behaviour

Well, that was not too bad after all. In on Thursday morning, out on Saturday afternoon. Hickman line in. Round two of chemo done. Home again at least a day ahead of plan -excellent. It's the first time that everything seems to have gone exactly right. Plus it was aided by a very efficient nurse who should co-ordinate discharges at every hospital!

She took our shopping list of things we needed to take home (syringes, spare NG tube, dressings etc), talked us through looking after the hickman line (which was not really done in much detail before) made sure we had enough drugs to get to Friday, checked Luke out to make sure everything was ok, and sent us on our way. Brilliant!. Only thing we have learnt is to check with the hospital exactly what time his last dose of anti-sickness was before leaving, as he's been sick again while we've been trying to get him to sleep.  Hopefully it hasn't bothered him too much, but can't be nice for him.

So, tonight, Letitia and I have a Tesco readymeal each which we were going to have at the hospital-only we can gave a glass of wine with it at home!

Does anyone know if 9 month old babies know that the clocks going back means an extra hour of sleep? No? I thought not.... still -i will be happy to be woken up by Luke in the morning-because he's home.

Have a great Saturday night.

Ding ding, round two

So, it's another weekend away with my wonderful family-except I can't stay with them, and the venue is the hospital rather than a nice hotel somewhere.  But, I'm glad we're here.

Surgery to replace Luke's hickman line went ahead yesterday morning, and all went as planned. Then they started chemo yesterday afternoon, so we are about half way through round two right now.

The doctors and nurses all told the chemo side effects would most likely get worse after the second round, but Luke really struggled yesterday afternoon. He didn't seem to be in pain. Just entirely out of sorts. When we decided to give him some calpol in the evening to help him, he promptly vommitted all over me (and it really smelt like proper sick, bot the mild milky normal baby sick which is all we've had before. After that I smelt, but Luke was a bit happier!

All being well we might all get to go home on Sunday night, if not it will be Monday. Then, assuming a general anaesthetic team is available, we get an MRI on Friday and will actually be able to see our nemisis for the first time in a couple of months.

Anyway, Luke is asleep, Letitia is having a shower, and once she's done what she needs to do I'm off home to have something to eat and try to sleep.

Fingers crossed

It's been a busy few days, hence no blogging for me. Luke is basically doing well-but he has got a bit of a cold. Hopefully it won't mean much, but we're pretty nervous because first thing tomorrow we go back into hospital.  He is meant to have his hickman line put back in tomorrow, and all being well start chemo again on Friday.

The hospital has said that the operation tomorrow depends on the anaesthetist being happy with things. If they feel Luke's cold is too bad, they won't go ahead. Then we will have another delay.... hopefully it won't come to that, as we really feel at a standstill with things right now.

On a different note, Google have disabled my ad account for what looks like invalid activity. Apparently I can't encourage the readers of this blog to use the ads! I have put ads from another provider on for now, and will, when I have time, challenge Google on it. All it means us a delay in raising money to donate. Will keep you posted.

Hopefully i'll have some positive news tomorrow night.

Bins, insurance, hospitals and postcards

This might turn into a bit of a random mind dump, but bear with me, it all has a point somewhere.

Firstly, on the practical side of things, a thumbs up to Welwyn Hatfield Council this week.  Since Luke and Letitia came home, we have found that the amount of rubbish we are generating which is non-recyclable is more than our fortnightly collected wheelie bin could handle.  We emailed them on Tuesday explaining that we needed an extra bin, probably for the next year.  On Wednesday they emailed back saying they couldn't give us an extra one, but that they could provide one twice the size, usually reserved for large families.  Then, on Thursday morning when I went to work, they had collected the old bin (full of rubbish) and left a nice big shiny new bin in its place.  Excellent - one less problem to worry about.  We really were at the point of having to take a few bags to the rubbish dump at the weekend to make some space for next week.

Secondly, and we haven't yet fully confirmed this, so I'm not getting too excited, but it looks as though our critical illness policies on the mortgage give a small amount of cover if you have a child who is critically ill.  The policies wont pay out anything like their full value for a child, but it may be enough to make things a bit more comfortable with Letitia planning to have the next year off to be with Luke. As I said before, we planned this year of reduced income with Letitia on maternity leave, but never imagined her having a further period of unpaid leave, and my salary wont stretch far enough on its own to cover all the bills and allow us little luxuries such as food and heating.  I wouldn't really have thought the policies would cover us in this position, and was checking just to satisfy myself that we had explored all options, and it definitely looks likely to have been a good use of time.

Thirdly - its the weekend again! I feel like I haven't seen Luke this week.  With the couple of days away at the start of the week, the only times I have seen him have been at night when I do his drugs and top up feed trying desperately not to wake him up, and in the morning for a few minutes before I go to work.  If I can get on top of my sleeping patterns (and working patterns) again, then I can try to get up a bit earlier and spend half an hour with him before I go to work, but usually I am rushing to get ready and then running out of the door late. I'm in something of a vicious circle with it at the moment.  Anyway, all of that means I can't wait to spend some time with him tomorrow and Sunday.  We have a few family members passing by over the weekend as well, which will be lovely.  We are vetting everyone for coughs and sneezes before they can come in!

I called the hospital this afternoon to find out what the plan is next week.  Last we heard was that they were hoping to get Luke on a surgery list for Monday to put the hickman line back.  That was a couple of days ago.  I was putting something in my diary at work this afternoon and realised it was getting quite full early next week, and that it was Friday afternoon.  If I needed to change things around, then I needed to start doing that today.  So I phoned the hospital, and was told 'we were going to phone you this afternoon to let you know the plans'.  I am sure they would have, but whether it would have been in time for me to sort things at work out or not is a different matter.  Anyway, no problem as the surgery isn't until Thursday now.  He is booked, so all being well blood count wise, it will go ahead.  I have got a bit uptight about the delays before, and was a bit like that this afternoon, until I though about how well Luke is doing right now, and that a few more days before we launch him back into the hospital world will actually be quite nice.  If he was struggling with things, it would be a different story, but he seems to be better than he has for months, which is simply amazing.

Letitia and I started to talk about Christmas and other things in the future this evening.  I am finding it really hard to think any distance into the future for fear of what may be.  I think (hope) that once we are well under way with the treatment and can see the tumour shrinking and that things are really working, I will stop holding my breath and begin to think about the future again, but right now I can hardly focus on the next day or next week, let alone next month or next year!  Like people keep on telling me, its one day at a time....

I popped into Addenbrooke's this afternoon to pick up some spare NG tubes, as Luke is still pulling them out every two or three days, and our local hospital doesn't stock them.  They can put them in if Luke pulls one out, but they don't have any, so we have to bring our own.  Our last one was used yesterday, and when they said we wouldn't be back in until next Thursday, I thought there would be no way he would keep this one in until then!  I went to the Paediatric Day Unit to collect them, and they said Luke had been sent a postcard.  Some of my extended family from Guernsey had sent him a postcard having heard the news - a lovely surprise  and a lovely thought.  A little something that made me smile today.  It doesn't take much sometimes.

Have a great weekend - we intend to.

Looking on the bright side

Evening everyone. I had my couple of days away - got home last night.  It was, as far as it matters, a really good couple of days.  The only  shame is with so much on my mind at the moment, I possibly didn't take as much from it as I otherwise would.  Still, a lot of people put themselves out to give me a great opportunity, and I managed to tear myself away from home to get out of it what I could.  I don't fancy too much time away in the near future though.

Luke is doing really well right now.  We have wound the morphine down, and he seems to be fine.  He is eating pretty well, sleeping well, and is really happy the rest of the time (as long as he is getting attention!).  His hair is getting thinner and thinner - definite clear bald spots now - but there don't appear to be any other significant side effects quite yet.

The plan, such as it is, is to try again next week to do what didn't happen this week.  So, the hospital is trying to schedule the surgery for a new hickman line on Monday, and chemo should then commence on Tuesday.  At least we get another weekend with Luke before the next round of chemo.  I can't deny that I am worried about what is happening inside him while this new delay plays out further, but I am trying to look on the positive side.  His immune system should be recovering, and my Grandad is meant to be visiting this weekend, which will be fantastic.  I have been trying to work out when I will get chance to visit him, as its been a good few weeks since I saw him.  With so much going on with Luke, it is just hard to find time to do anything else.  We lost my Nan to cancer earlier this year, and I do worry about Grandad.  Getting to spend some time with him, Luke and Letitia will make it an extra special weekend.

So, in a nutshell, things haven't really moved on in the last few days.  But, as I say, Luke is in a good place right now, so lets just enjoy it.  Hopefully next week will bring progress with the treatment instead.

By the way, we are just about at the minimum amount which should mean we get some money in a few weeks for the advertising revenue from this blog.  As I said, we will use that to donate to relevant charities.  So, keep having an occasional click on the adverts to raise more, and have a think about which charity you want to receive it.  I will think about the best way to do it, but as it is everyone reading this that is raising the money, I will let you decide.  Just give me a bit of time to decide how to do it.

All systems stop again

No surgery today afterall - so no new hickman line. Two aspects - firstly Luke's temperature started spiking this morning to 37.7 (just below the 38 automatic antibiotic response); and secondly our consultant was aprehensive about the artificially high neutrophils and preferred to give Luke a couple more days to get his immunity back up himself.

Terrific. 

But, the oncoligist is not overly concerned about waiting a few days, so once again I find myself having to accept his judgement and focussing on later on the week when hopefully we can move forward again.

Question of the day is how to get clear concise information and instruction about the next steps. Having the message that we will aim to have a new hickman line towards the end of the week doesn't do much for our planning - are blood tests needed at some point to see if all is well? Will the op be scheduled - if so when? Or on an emergency list? Do we need to keep doing the antibacterial baths until the hospital calls us? Can I have a rough idea to plan work around it etc.

I'll let you know the answer to any and all if those questions as and when I do

All systems go

So, with aprehension, not a small amount of worry and more mind changes than I've had hot dinners, I have come up to Chesterfield for a couple of days. More accurately right now, Matlock, about 10 miles from Chesterfield. Staying with my Dad for these couple of days away for work.  Can't say coming away was an easy decision, but like Letitia has told me several times, there won't be a 'good' time to do it for quite a while. Fingers crossed everything will be ok and I won't be dashing back down the M1.

Good news is Luke's neutrophils are back above 2, so looks like surgery to put a new hickman line in tomorrow can happen, and hopefully chemo round two starts Tuesday. Can't help wondering what would have happened of we hadn't asked questions in Saturday and got the injections to help boost them. Still, all ok now, and he's had another great day.

That's it for tonight-some bedtime reading to do before an early start and full agenda tomorrow. Off topic and apologies to anyone who doesn't know what I'm talking about, I have to say I am quite shocked at the indycar news from Vegas tonight though-British driver Dan Wheldon died after a multi-car accident. I know motor racing is dangerous, have followed it long enough to have been moved by Ayrton Senna dying in 1994, but kind of take the safety for granted after a while.

Mixed bag

Sorry I didn't post anything yesterday - simply too tired, and a bit all over the place with my thoughts.  Yesterday was another relatively 'normal' day - Luke managed to pull out his NG tube again - this time just by rubbing his face on Letitia's shoulder!  Fortunately a community nurse was due round shortly afterwards to take blood for testing, so put a new tube in without Letitia having to take Luke anywhere.

The plan is for Luke to have his Hickman line put back in on Monday (surgery required for this).  Then, round two of chemo will start on Tuesday.  And at some point after the second round of chemo and before the third, an MRI scan will be done to actually see what the tumour now looks like.  After a month or so without any treatment while the histology was being investigated, we don't know if or by how much it grew before chemo started.

The problem with the plan is that Luke's blood count, specifically his neutrophils (helpful little variety of white blood cell which helps you fight infection).  The normal count is '2'.  To do the chemotherapy the minimum they want to see is '1'.  To do the surgery on Monday the minimum they want to see is '0.5'.  On Tuesday Luke had '0.15' and yesterday '0.11' - it's not only too low for what they need to do on Monday,   but is going backwards!

We got the results from our local hospital towards the end of the day on Friday.  Between a message being left for us, and our hospital calling Addenbrooke's, and Letitia dealing with Luke and what he needed, we didn't manage to speak to Addenbrooke's after the results were known.  We have been asked to have Luke there at 7.30 on Monday morning, which will mean leaving home at around 6am, and for surgery in the morning he will not be able to have breakfast.  We don't necessarily want to go through that if Luke isn't going to be able to have surgery, so fortunately phoned Addenbrooke's today to see how the land lies.  That is how we know the minimum neutrophils needed for surgery and for chemotherapy.  And, given Luke's are so low (and that they can't transfuse white blood cells or neutrophils) we were asked to get up to the Lister today and tomorrow for GSF injections, which may help encourage the neutrophil level back up.  They will also do another blood count tomorrow afternoon, so we can see if surgery is likely or not.  All I keep thinking is its a good job we bothered to ask, as if these injections make the difference between being able to have the surgery on Monday and not, then it avoids another delay in treatment.  And I just want it to over with.  If the hickman line surgery is delayed, or the second round of chemo is delayed, then we may be late with the next MRI scan, so wont know exactly what is going on in his little body, and I can't help thinking that the longer between treatment the more chance there is for the cancer to be regrouping and causing trouble again.

On top of this I am still working my way through a dilemma.  I have a fantastic opportunity with work on Monday and Tuesday to get some experience in an area which I want to take my career in the future, and that I wont get many chances for.  But it means staying away from home (and hence Luke and Letitia) tomorrow night and Monday night. I can't decide if, with what may be happening at the hospital with Luke, I can take being away.  But there is a reasonable chance that the planned surgery wont happen.  And, for the next year, when will there be a good time?  Letitia is happy for me to take the opportunity - I am just trying to work out if I can do it.  Nuts, I know.

We had a wedding to go to today.  Good friends of our tied the know in the next town, and we managed to get to the church service, even though we had already backed out of the wedding breakfast and reception.  My in-laws kindly came and baby sat while we went our for a couple of hours.  It was great to be at the service, but for some reason it was really tough - to be around friends who wish us well, but don't really know what to say, and trying to put Luke's illness out of our minds for even a short time and enjoy something special.  While it was great so see some friends, even if we didn't stick around much after the service, I don't think we managed to put things out of our minds.  Maybe that will come with time, but neither of us has managed it at all yet.

Anyway - enough rambling for tonight.  I have a stack of work to do.  They are still be extremely understanding and flexible, but I am finding my productivity is still much lower than normal, so I am having to work longer hours just to do the basics.  I need to get on top of it soon - just getting more an more tired!

But - I am happier this evening than yesterday.  Luke has had a great day, I got to have some one on one time with him this morning - we went for a walk and to the park.  He had time with his grandparents this afternoon, and Letitia and I spent some nice time playing with him and giving him dinner this evening.  He is really happy as long as the pain is under control - and is so close to crawling.  He's on his hands and knees - just needs to work out which to move and in what order! Bless him - he is amazing.

Normal for now

First of all, for those who don't already know, today is a very said day for the Marshall family.  @Jack_Marshall_ passed away today - a brave 6 year old boy who succumbed to a brain tumour.  This in the same week that @harry_moseley, a brave 11 year old boy also died of a similar illness.  Both of these boys faced their illnesses head on, and did everything they could in the time they had left to make things just a little bit better and make every day count.  I wonder how many of us can genuinely say that?

It puts our problems into a bit of perspective - at least our consultants are broadly confident at the moment that they can cure Luke - it's just going to be a long and hard road to get there.  It will all be worth it to hear one day that he is clear of cancer though.  At least we have that hope and dream to hold on to.

Until then, we have to try and carry on as normally as possible.  That now occasionally includes a wrestling match with Luke in the morning to re-tape his feeding tube more securely to his face, just to try to stop him pulling it out altogether.  I think he has had so much done to him, that as soon as someone tries to hold him still, he panics, and a relatively simple job turns into quite a drama!  Still, got it done and was only a bit late for work!

Luke has to have another blood test tomorrow.  We are fast realising that with all of the health care he is receiving, some at Addenbrooke's, some at at local hospital, so at home from the community team, it can get quite confusing over where we are supposed to be with him and when.  On Tuesday we were told he would need another blood test on Friday to make sure his blood counts are heading in the right direction, prior to surgery to insert a new Hickman Line of Monday.  We were told it could be done at our local hospital.  We weren't told that actually, a community nurse would be out to our home to take the blood and get it tested at the local hospital.  Never mind - a couple of phone calls today and it's all arranged.  I can't believe it's Friday tomorrow, and we have the weekend and that's it before the next hospital stay.  Trying not to let it worry me too much, but it's not easy.

I have mentioned several times about clicking on the adverts on my blog site.  I then accrue a small amount of money each time which will be paid to us, and we will use it to donate to child cancer related charities.  People reading this are doing really well, and hopefully in a few weeks we will have enough to be paid and make the first donation.  In the mean time, keep clicking - preferably on an ad that actually interests you in some way though!

Time-strange stuff

Today has been fairly plain sailing (so far).  We only gave Luke a top of feed of 50ml last night, having given him more during the day to compensate.  He didn't wake up when we did it, and had a pretty decent night's sleep - which also meant that Letitia and I did too (well, I did once I finished working and got into bed!).  Same plan again tonight, so touch wood, it will keep working.

We took a lock of Luke's hair today.  It was the sort of soft soppy parent thing I never really envisaged doing until we found out Luke had cancer, and would lose all of his hair through the treatment.  He has a proper little bald spot on the back of his head now, and it continues to fall, so we decided to take a lock now while he still has plenty!  I still find this part of everything really hard to take - probably second only to seeing Luke in any pain.  I just don't know why it bothers me so much.

I have been working from home today, which isn't something I often take the opportunity to do, but will try to more so from now on.  I work close to 50 miles from home, and that hour I spend driving each way is better spent at home with Luke.  It isn't possible/practical/desirable from a work perspective to do it every day, but once a week or so it should be possible.  It just means I can see him in the morning for a while before starting work, help with lunch, his bath etc, and have five minutes with him when I go downstairs to get a coffee.

I got round to ringing our mortgage provider this afternoon to talk about the position we are in, and discuss what options we have should we need to cut our expenditure for a while next year.  As it goes, there seem to be a couple of options, ranging from the very good, flexible arrangements which require of house to have risen in value over the last four and half years (who knows?) to basically reaching an arrangement with them to reduce our payments, but that may affect our credit ratings.  Obviously we would rather the first, but even if its the latter, to be honest, it would be worth it for Letitia to be able to have the choice to stay looking after Luke.  We'll have to see what happens - we have a bit of time before we have to make a decision, which is fortunate.  I just don't know what people do who end up in our position but don't quite have the flexibility in their situation that we do.

I can't believe it's Thursday tomorrow, and Luke is due back in hospital on Monday.  We had nearly two weeks with him at home, and it has evaporated to four days left. I don't know where that time has gone - if only the stretches in hospital went as quick as this time with them at home, then the next year would fly by!

Anyway, more work to do, and time to spend with Mrs Hutt.

OK-that wasn't too bad

OK - hospital visit went pretty well all told.  Luke has pretty much maintained his weight at the 2nd percentile - he is eight and half months old, and just under 7kg.  That means that 98% of boys his age weigh more than him.  He was tracking along at about the 9th percentile before becoming ill, and dropped to below the 0.4th, so being back at around the 2nd for a few weeks now is progress.

The cannula went in nice and easy, getting plenty of blood out to test, and getting the chemo drug delivered easily.  Doctor was happy with all of the physical checks, if a little keen for us to try and stop the morphine.  We will, but probably not until Luke is back in hospital next week, as each time we are a bit late in giving it to him, we end up with what looks to us very much like a baby in pain, and out of everything we are dealing with, seeing Luke in pain is the most unbearable thing.  So, the morphine stays for now.

The blood test showed pretty much what was expected.  No viruses/bacteria to worry about, and low counts of certain elements.  Luke is neutropenic at the moment, which is as expected.  The doctor is concerned that if his blood counts don't increase to the right level before Monday, Luke may not be able to have the hickman put back in quite yet - but they do expect white blood cells etc to return to normal by then.  We need to have a blood test at our local hospital on Friday to see how things stand.  Our concern is that for some elements of the blood they can do a transfusion to boost Luke's system and get it up to the right levels.  But for other elements they either can't, or don't seem willing to (I think it is 'can't', but wasn't entirely focussed at that point in the conversation as Luke needed distracting).  If they can't do the hickman line operation on Monday for some reason, then it may delay round two of the chemo, as he currently doesn't have anything robust enough for them to deliver it through.  BUT, as I said, the doctor expects everything to return to normal by then, it's just a precautionary check on Friday.

I managed to get myself quite upset this afternoon over something I thought I was ready for.  Sitting in the treatment room at the hospital, holding Luke while they took blood and gave the chemotherapy, stroking his head gently, I noticed hair just falling off his head with each stroke of my hand.  I hadn't seen it before, and although my wife has said for a few days she thinks his hair is getting thinner in certain places, I haven't been able to notice.  But seeing it falling out was tough.  I don't know if it's because if you can block out the fact Luke has a feeding tube coming out of his nose, he actually doesn't really look ill at the moment - he did six or seven weeks ago, when he had lost all the weight and his legs didn't work.  Then he looked awful.  But now, he doesn't - he looks great.  But when all his hair has gone, it will be another visual constant reminder that right now, Luke is ill.  Or is it that if the one visible side effect of the chemo has already started to happen, what about the side effects we know are likely but wont be able to see for ourselves - liver/kidney/heart problems etc.  Again I find myself feeling in awe, feeling terrified by and feeling a need to know, in more or less equal measure, exactly what is happening inside his little body.

We have just done an extra top-up feed after he first went to bed, so the night time one can be smaller.  Hopefully that will help him to stay asleep tonight.  I have quite a bit of work to do tonight having taken a chunk of the day off to go tot he hospital, so will end it there.  As I do, though, someone said something to me the other day which I keep thinking about.  They told me that today is a gift, that's why its called the present.  Don't worry too much about the past or the future to the detriment of getting the most from today.  Sage advice I think - those who know me know that I am a big worrier about the past and the future, and often need to pull myself back around to just living in the moment.  I will try to keep doing that more.

Tired aprehension

Quick one tonight - very tired after a largely sleepless night last night. Luke seemed perfectly alright, he just didn't want to go to sleep after he woke when we did his night time drugs and top-up feed.  At one point at around 1 in the morning I had to walk out of his room, having nearly got to him sleep, in fits of laughter as he lay in his cot, smiling up and waving at me singing row row row your boat...

On top of that, at some later point in the night he pulled his NG tube out (again), so Letitia had another trip to our local hospital to have a new one put in.  Maybe someday he will get bored of that trick (or maybe not).

I'm pretty aprehensive about tomorrow. We're back up at Addenbrooke's for the day (hopefully no longer than that).  Luke has a dose of one of his chemotherapy drugs to have, plus a check up (including blood tests).  This will all entail at least one cannula, as he doesn't have his new hickman line yet - the operation for that is meant to be next Monday.  Luke, like any baby, is distinctly unimpressed when someone tries to stick a needle into him (but he still manages it far better than his Dad).  I don't think anything particularly bad can happen tomorrow - I think the worst would be his blood test shows low platelets, red or white blood cells and he needs a transfusion.  That will keep us there for an extra few hours but shouldn't be any big deal (reminder to self - Luke is back in hospital next week, I must give blood while he is there).  But, even though I can't really think what bad can happen that we aren't broadly prepared for, I just am not looking particularly forward to it. 

Having said that, I do have the next two days with Luke and Letitia - at the hospital with them for as long as it takes tomorrow, and then working from home on Wednesday.  I will need to shut myself away in the spare room and get on with work tomorrow night and on Wednesday, but at least I can pop down for a coffee now and then, and will save an hour each way driving - all extra time I can spend with my boy.  I am seriously lucky to have a job which can be fairly flexible, and very understanding people around me at work.  On which subject, I need to speak to the bank about potentially having a payment holiday on the mortgage next year.  Letitia has (I think quite rightly) decided not to go back to work quite as planned.  I am at least a couple of promotions away from being able to be the sole provider in my household - and right now there is no thought of promotion, just holding onto the job I currently have!  So, savings have to be made somewhere while Luke is ill, and the mortage is far and away our biggest expense. 

Hopefully tonight will be more settled - we could both do with some solid sleep.  For the first night in what feels like ages I am not about to settle down to a few hours' work once Luke and Letitia are in bed, so we should all be nice and refreshed in the morning.  Touch wood.  One problem which we have picked up on specifically tonight, but have noticed on other nights, is Luke often wakes up, or at least seriously stirs, towards the end of his top up feed.  With the drugs, the sterile water to flush the NG tube, and the feed, there is about 115ml of fluid going into a pretty small tummy.  We have wondered if trying to give him 100ml of feed at a time is just too much for him to be comfortable with, and whether either giving an additional feed during the day of 50ml, and just doing 50 at night will work better.  Either that or making his day time top ups slightly bigger and doing slightly less at night.  Who knows, but we'll give it a shot. 

Alternative normality

All told it has been a good weekend. Luke has been on good form, if somewhat demanding of attention! He has certainly got used to being front and centre of everything all the time, and is quick to let us know if we aren't paying him enough attention - and who can blame him! Generally speaking, as long as someone is playing with him, he is happy. Before becoming ill he had begun to be able to amuse himself for periods of time, which has all gone out of the window now.  But that's ok - we want to give him that attention, and its really rewarding to get his beaming smiles in return.

In terms of the question on my mind when I wrote last night, having looked through some of the messages we received and discussing it with my wife, it feels like we perhaps had false expectations. I don't know that anyone gave us false expectations specifically, or whether we just didn't hear the message clearly enough, but our expectation of life going forward was that it would be 'normal' with a few restrictions. We had mentally adjusted to that, but have fast realised being back at home for nearly a week now, with another week to go before the next planned hospital stay, the next year or so will be a different kind of 'normal', with a few vestiges of our old normality to look forward to.  We are I think in the process of adjusting further to that reality.

There are certain sacrifices we find ourselves having to make at the moment, most of which really aren't significant or important.  We decided today however to bow out of doing readings at the wedding of a couple of very good friends next weekend.  We have already bowed out of the wedding breakfast and reception, unfortunately, as we wont be able to take Luke and cant really be apart from him for that period of time.  We still fully intend to be at the wedding ceremony, but feel on such a knife edge with Luke that we don't want to put our friends in a position of relying on us for even a small part of their special day, and us maybe not being able to deliver.  They are the kind of great friends that have shown complete understanding to us, and we truly appreciate that.

I think going forward we will lower our expectations, focus more on what is absolutely important and worry less about what is, in the grand scheme of things, less important.  That is what I should have been doing anyway, but you'll forgive me if my mind is a but scrambled at the moment.

I mentioned a couple of days ago that I had, in the course of researching childhood cancer, made one or two small donations to charity.  They really were unfortunately amounts which are unlikely to change anybody's world, but for now our financial resources need to be very carefully managed, as the coming year is going to be difficult in that regard.  I also mentioned that by clicking on the occasional advert on this blog site, small amounts of credit build up which we will receive, which we could use to help related causes.  The amounts are small, but a quick thanks to those who have been doing so.  It will all add up.

Deep questions

Today has been a good day with Luke.  He has been generally a happy little chappy - the only time he got particularly upset was when Letitia and I decided to re-do the paster strip holding his NG tube in place, as it was looking decidedly like it was about to fall off.  He didn't appreciate being held and restrained by Letitia while I faffed around with various sizes of sticky plaster and tape.  But, it wasn't too bad, and the end result actually looks more secure that when any nurses have done it so far.  I wonder if I missed my calling....

When we came home from hospital, it was with a big box of various sized syringes, feeding tubes, high calorie milk for top up feeds, and drugs.  As big as the box was, there is in reality only just enough stuff to get through a week, and having called Addenbrooke's yesterday, we received a delivery today.  We have about a month's worth of Infantrini (high calorie top-up feed), but only about three day's worth of single use feeding kits.  We are back in Addenbrooke's on Tuesday for the day, so hopefully can get some more then, and then get the little issues in our supply line ironed out...

Today we have been out for a couple of walks, Luke has been happy, playful, eaten well, went to bed fairly easily, stayed asleep when we did his drugs and top up feed tonight - it has been a good day.  Added to that, both of his nannies (Nana and Granny) came over to see him along with one Grandad.  All round, he has been spoiled for attention.  It was particularly good to see my Mum (Luke's Nana) as she has been unwell for a few weeks, and hasn't been able to see any of us since Luke last went into hospital.  That meant over two weeks in the hospital and this last week or so at home - she has found it tough not seeing us, and we her.  But, I think we all understand that we can't take the chance of Luke picking up any illnesses if we can avoid it.

A question keeps coming into my mind, mainly following conversations with my wife.  It is becoming abundantly clear that we simply aren't capable of doing normal life at the moment, even when Letitia and Luke are at home.  Luke needs more time and attention than before, the feeding and drugs regime take chunks of the day, we are both absolutely exhausted still (even if I get to bed at a sensible time, I don't sleep for hours), and with the flexibility I am having to ask for from work, I am still working a lot of evenings to stay afloat.  Like Letitia said tonight, we can do the shopping (we get it delivered by Tesco so don't even need to go to the supermarket), check the mail occasionally, and just about stay onto of keeping the house tidy.  Apart from that, nothing is really getting done - no real housework, struggling with washing ironing, gardening, even thinking about big things coming up.  It is my step-dad's 60th in a couple of weeks, and my Nan's 80th not long after that.  I am embarrassed to say that I haven't given either one of the a seconds thought, and even having tried to today for a while, I just can't focus.

I guess my question is whether this will get any easier, whether our expectations have to adjust, whether we will develop some amazing coping mechanism which will carry us through the next year, or whether certain things will just fall apart a bit.

All I know absolutely for sure, with definite crystal clarity, is that only two things matter in all of this - my son and my wife.  As long as I am doing all I can to make sure Luke gets the best care he can, and Letitia has as much support as I can give her, then everything else takes second priority.  

Cant sleep

Luke had a reasonable day today.  I got to see a bit of him this morning before going to work, which was nice.  He was in bed by the time I got home, and although he woke a bit tonight when we did his drugs and top-up feed through his NG tube, he settled to sleep again fairly quickly.  Letitia told me he managed to pull his NG tube out (again!) this morning so she had a trip to our local hospital to have a new one put in.  It's not something that Luke enjoys, but he has had a few now and generally calms down fairly quickly afterwards.

I cant sleep at the moment, hence the late night blogging!  It's a combination of worrying about Luke and what is happening inside his little body; worrying about Letitia and how she is coping with everything; thinking about some of the stories I have come across while researching childhood cancer etc.  It seems strange to me, as we struggle through this experience with Luke (and we are only just at the beginning) that others have completed their journey with an outcome that we can't bear to think about, and have such strength and dignity.  There are some very inspirational people out there, and it is quite humbling to read about their experiences.

BUT - we aren't thinking negatively (or are trying not to, anyway).  It's the weekend, and I am going to enjoy some quality time with my family.  We probably wont go anywhere, or do anything extraordinary, but just spend time at home together.  It's the Japanese grand prix, and while Luke obviously doesnt know what's going on, he has always seemed to be captivated watching the racing with me when we have done it occasionally in the past.  I can't wait until Luke is old enough to go to a race - a weekend away with me and his Grandad camping at a race track and watching a grand prix is something he wont have a choice about doing!

There are various charities and appeals in aid of childhood cancer - you dont have to look too far to find them.  I have made small donations to a few that have moved me recently, but want to do more.  Once we have got to a better place than we are in right now, and I have some physical and emotional energy, I will look at the best way to do some proper fund raising.  In the mean time, you will have noticed a couple of adverts on this blog page.  When you visit and have a moment or two to spare, perhaps click through one of them.  That racks up a small amount that Google attribute to my account, and we will donate to charity.  If you don't have time or don't want to, then that's absolutely fine.

Normal, whatever that is

Just a quick one this morning.  I started this last night, but was too tired to finish it!

Having Luke and Letitia home is fantastic, but is bringing it's own challenges.  We had some trouble with Luke's NG tube last night, in that we couldn't draw anything out of his stomach in order to test that it was in the right place.  We've seen that a couple of time when in the hospital, and the nurses obviously have a couple of tricks which they try, but have very occasionally stopped for a while and suggested Letitia tries to give him a breastfeed to make sure there is something in his stomach.  We nervously tried to test the tube about half a dozen times, but couldn't.  We then decided we would have to try and get him to breastfeed, the process of which meant he woke up.  He didn't want to feed, so we decided to give his drugs orally, forget the top up feed and try to get him back to sleep.  After a while he decided he did want a breastfeed after all, and settled down for a good six hours, so all is well.  But the pressure of potentially deciding to do the wrong things (or rather, not knowing what the best thing to do is, and doing something which might not harm Luke, but might not be the best decision) is weighing pretty heavily right now.

I guess they wouldn't have sent Luke home with the number of things we have to do if there was any chance that real harm could be done, and we are no longer shy about calling our local hospital to speak to someone for help, but Luke is going through enough without us adding to the problems by doing something wrong.

On top of that, it is quite tough being home for less tangible reasons.  On the children's cancer ward, as sad as it is to see some of the kids, you are one among others going through the same thing, fighting similar battles and dealing with similar anxieties (although none where we are have the same problem as Luke, they are all in a similar boat).  At home, where we just want to relax and enjoy our time together, normal life still hasn't returned as we feel that we can't take Luke too many places, or join in with baby classes and other normal things that Letitia and Luke were doing a couple of months ago.  It would be awful for him to pick up another infection at this stage, and we don't feel we can take the risk - maybe we are being overly cautious, but it's hard to know what to do for the best.

I suppose it is just the realisation that normal for us going forward is very different to what normal was before.  I think we both knew that, and I may have even written something along those lines, but now they are home, we are actually feeling it for the first time.  Obviously if the treatment works well and Luke wins this battle, then any and every sacrifice is worth it, but its tough.  That's all.

Mind games

Luke has had a good first day back at home.  I haven't seen him unfortunately, except for briefly in the middle of the night when he woke up, as he was asleep when I went to work, and was asleep when I came home!  I will try to get a day or two working at home next week so at least I can spend a bit of time with him, even if it is just really at the beginning and end of the day.  If I work from home I save two hours in the car, and those two hours spent with Luke would be much better.

We did the first lot of drugs and top up feed without nurses supervising last night.  It's pretty scary stuff - I feel like we are dealing with a new born baby for the first time again! Everything is so tentative, and triple checking things, worrying that we are doing them wrong - is the morphine and anti-sickness dose exactly right, have we got the top up feed going at the right speed - not too fast into his little tummy to make him uncomfortable, but not too slow so that arms begin to ache holding this little tube of milk up in the air!  Everything is fine, it is just like treading on eggshells we feel we have to be so careful.  I am sure it will become more second nature soon enough, and believe me, it is worth it to have Luke home. Letitia has done two more doses throughout the day, and is managing tremendously well - she is amazing.

I have just read the formal letter from our consultant setting out Luke's case to date.  The consultant has told us several times that he had to write formally to us, and would try to set everything out in plain English as much as possible, and be as comprehensive as he can in the detail.  And he has - the letter is several pages long, and is very clear to read.  But even though it tells us nothing we didn't already know, seeing it written down in black and white is really hard.

Through writing this blog and looking for other people going through similar experiences to us, I have found two very special boys of Twitter who you may already be following yourselves (@harry_moseley and @Jack_Marsall_).  They are both suffering with brain tumours, and unfortunately Harry is in a coma right now.  I know it is a different type of cancer, and these boys are older than Luke, but my heart really goes out to Harry's family - they are honestly living through the nightmare that we fear.  Having been in a place for 24 hours where we thought Luke's cancer was untreatable, I can only begin to comprehend what both Harry and Jack and their families are contending with - and the bravery with which they seem to have faced this is a lesson to us all.  If you haven't already, look them up when you have a spare minute.

My Baby's Back!

We're home!! We arrived home a bit over an hour ago, with a big bag of drugs, a huge box of syringes, and a batch of Infantrini (high calorie top up feed to help build Luke up a bit more).  That, plus the car load of things that a wife and baby need when staying away from home for a couple of weeks.  It is so good to have them back - it already feels like home again (the house really hasn't been a happy place to be while they've been away).

So, here we are for 13 nights before the next planned stay in hospital.  We have lots of things to get used to doing (I say we quite liberally - Letitia has to deal with most of it unfortunately, as I will be out at work, but will obviously do everything I can when I'm home).  There is a relatively complex drug regime of morphine, anti-sickness drugs, antibiotics, the top up feeds, the supplementing of the normal solid food with cream/cheese/butter/anything else which we would all love to eat but cant!), the hoping he doesn't pull his NG tube out (as we will need a trip to the local hospital to get a new one put in) and basically worrying whether he is ok - but he is home again, and that is brilliant.  And really, all of that is no different to being in hospital, it's just that the nurses did most of the drugs and top up feeds, and we didn't have far to travel for a new NG tube.

I mentioned it a couple of days ago, but this place has been somewhat chaotic for the last week or so, as grandparents kicked into action to decorate the room Luke spends most of his time in ready for him coming back.  It's not exactly just involved a lick of paint either, with a new wooden floor, some plastering, new skirting board etc.  It has been relatively straight forward as far as decorating jobs in our house go, but has still taken a monumental effort to do in that time.  We both really appreciate it, and know Luke will love playing in his new room.  Plus, it will be far easier to keep properly clean, so it will be better for when Luke is neutropenic (low white blood cell count, caused by the chemo and leaving Luke susceptible to infection - I think.  It's one of the many things we've been told about and are still getting to grips with).

So, tonight I have a mountain of work to do as I took yesterday off to help get things ready for them coming home, but I work feeling happy, and hoping that the next 13 nights go as slowly as the last fortnight has.

Happy

As I write this I am sitting on a park bench in a quiet shady spot at the hospital with Luke asleep in his pram next to me. I've taken him out for an hour to give Letitia a break.  For the second day running we've had a trip to the local park as well. Apart from having to go home to an empty house, this weekend has been brilliant.

The plan is for Luke to come home on Tuesday. He'll then be back in hospital in a little under two weeks to have his hickman line replaced, and then start chemo round two. So all being well, we get 'normality' back for a fortnight.  That is normality with regular morphine, occasionally topped up with paracetemol (as Luke has needed today)  plus extra feeding down the NG tube. And having to be hyper careful about germs and bugs and things. We can't afford further delays with the treatment from another infection, so while he won't quite be 'Bubble Boy'  he will have several extra thick layers of cotton wool figuratively wrapped around him.

It's a bit of a cross between Challenge Anneka and Changing Rooms at home right now. In preparation for Luke coming hone my in-laws have been bravely cracking on with decorating our breakfast room, which is really the room Luke spends all his waking time in. With Tuesday's deadline rapidly approaching troops are being drawn in, but it looks under control. Our house is an old one, which usually means any job ends up far more complicated and time consuming than planned - but luckily this seems to have gone well. We just want everything to be just right for Luke when he gets home (and easy to keep clean, which this will be).

I am still laying awake at night worrying about the future and what Luke will gave to go through this year, but we have had a few really good days where his pain has been controlled, he has been happy, the sun has been shining and at that point in time everything has been perfect. Six weeks ago I didn't think we'd see many days like this, and even a week ago things were completely different. I cannot over estimate how much I under estimated Luke's resiliance.

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.