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.