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.