Saturday, April 21, 2012
We would obviously do whatever we are told to make Luke better - there is literally nothing that either of us would not do with that goal in mind - and as much as we really didn't want another six months of chemo, we were hardly likely to say no. And understanding that part of the treatment needed to be the extra maintenance chemo, although no-one ever actually said we would definately be having it, we had resigned ourselves to it. Ultimately being told we wouldn't be doing it meant we needed to have a conversaiton about why that was - why is a whole key stage of treatment not being undertaken?
In essence, the answer is that the maintenance chemo wont actually make a difference in whether or not Luke's cancer will come back. Doctors around the world have never been able to classify Luke's tumour, beyond it being on a scale starting with a type at one end that just needs surgery and chemo to cure it (I say 'just' - but you know what I mean), to the other end of the scale being a type that will always need radiotherapy, otherwise even if the tumour appears to be gone, it will almost certainly return. Either the treatment we have had has dealt with it, or there is no way it could permanently make it go away without radiotherapy. As we have recorded on the blog before, radiotherapy was on the table for a while, but ultimately Luke is too small at the moment and the proximity of the tumour site to his kidneys means they would been taken out, which causes too many compications.
Hence the regular MRIs from now until who knows when - to make sure that if it does come back, we catch it early before it does any damage.
So, we have either beaten it, or we have just made it through the first battle (well, once the last round of chemo is over). Either way, for the first time since Luke first become ill, we are starting to feel like we can actually look forward to something. Luke will have another tough time with the last round of chemo, and the operation to remove the hickman line wont be much fun, but compared to everything he's already handled, neither of these things are too scary (everything becomes relative). And Luke is doing better than ever before right now - he is so happy, he is eating really well, he is not being sick in the car anymore, he continues to develop absolutely normally (not quite walking yet, but wont be long) - and even if we have a long list of things to watch out for in terms of effects of the treatment he has had (and potential damage caused by the tumour in the first place), there are processes in place to keep an eye on them. And, although I struggle with it at times, they really do belong in a bucket of things that we can do nothing about - if he will have a curved spine due to the surgery, he will have a curved spine, and that will be treated once he is big enough. If he needs physio to help with leg positioning and walking etc, then he has it. Nothing is as daunting to think about as the cancer itself.
We are still a bit emotionally wobbly at times, and exhausted from months of just wishing I could take all of the pain and discomfort away from Luke and go through it for him. Once things have stabilised in my mind a bit, I will get back to some practicalities on the blog, which may be a reminder for us if we ever have to go through this again, and who knows, may help someone else.
As a final note, London Marathon is tommorrow. I have a good buddy running in it with a small team to raise money for Children with Cancer UK. The link to sponser them is on the blog - if you are reading this and can spare anything, please do.
Saturday, March 24, 2012
Ultimately, it is really great news. Luke had his second operation on Tuesday. It took far longer than expected, but the surgeon was unable to find anything resembling a tumour remaining in the spine. She removed everything that looked like an abnormality on the MRI scan, and thinks that it is likely to be scar tissue from the original operation. All of the tissue removed has been sent off for testing, but the expectation is that the chemo managed to kill off the tumour. We couldn't really have hoped to be in a better position at this point, and if someone told us that would be the case right now when we were starting out on this journey seven months ago, we would have bitten their hand off for it. We wont know or sure what this means for the rest of the chemo treatment plan until the test results are back. We are due back in hospital in a week for the eighth round of chemo. Then there will be at least one more, followed by up to six months of maintenance chemo. Given that we have already had seven months, two major operations on Luke's spine, and seven rounds of chemo, on balance it feels like we well into the second half, even if not quite yet in the home straight.
Tuesday was one hell of a day. I knew it would be bad, having gone through the process back in August. As it happens, it was almost worse than I remember the first operation being - although maybe that is slightly mixed up with coming to terms with my son having cancer, and the whole experience of allowing total strangers to hold your child's life in their hands was a new one. This time around, we met the surgeon ahead of the operation - and although it appears that she has don a fantastic job, she did set rather optimistic expectations which don't help on the day of the op. From the minute we took Luke up for the general anaesthetic I was a jibbering wreck. Letitia was somewhat more rational until it came close to the length of time that the surgeon had indicated the operation would take. As we sailed hour after hour past this mark, she also became like me.
When we were called up to the recovery room, Luke was quite distressed, but was calmed by a long breast feed. The team explained that he had spiked a temperature half way through the operation, which meant they had to pause for a few minutes to understand why and make sure it wasn't anything to worry about at that point. From then on we had the surgical recovery to deal with and a possible infection causing the temperature.
We went from recovery into the paediatric intensive care unit. Luke was pretty much away with the fairies because of the amount of pain relief he had been given. He had a morphine pump running with a background amount to keep the pain at bay, and a bolus button for us to give him boosts if the pain seemed to get worse. He mostly slept, and didn't really try to move when he was awake.
Wednesday was pretty much one of the hardest days of Luke's treatment so far. He lad in his cot, and didn't even try to move. We had to give quite a few boosts of the morphine, but it did have a pretty quick impact when given. The issue was that we could only give a boost every 15 minutes, and although it worked pretty much instantly, often it wouldn't get him through the 15 minutes. In the main it was OK, but for certain periods of the day, it wasn't too much fun. As the day progressed, Luke did get more engaging and was happy playing - but was still not moving at all, laying basically on his back, slightly to one side. He was happy to wave his arms around though. At no point in the day was Luke really there, though. I guess it was the morphine, but his eyes just didn't have their normal twinkle in.
Thursday started in much the same way that Wednesday had been. It was quite amazing to see Luke struggle round from his back to his front, and the up onto his hands and knees, and finally to sitting up, shortly after lunch. It took him an age to get there, and he was clearly in a lot of pain doing it, but obviously just decided he'd had enough of being on his back. Once he was sitting up, he was fine. Moving around OK, playing as usual, it was like a switch flicked inside him. Since then, he has got gradually better, periods of pain have got fewer and further apart.
We don't know what the cause of the temperature was, but having been high pretty much constantly between the operation and Thursday night, it fell overnight and stayed down all day on Friday and into Saturday. The upshot is the surgical team were happy for Luke to go home based on the progress he made on Thursday; and our oncologist was happy for him to come home as his temperature had fallen and stayed down, and Luke was clearly happy.
We need to get the test results on the tissue removed from Luke's spine, and there are a host of potential issues that go along with the surgery which I will explain another time, but while it has been one of the tougher weeks, we are through it and one big step closer to a healthy Luke and a normal family life.
Saturday, March 17, 2012
We had to go to Addenbrooke's to meet the surgeon yesterday - a nice little treat for Letitia's birthday! For a start, it was the first trip to and from Addenbrooke's in one day without Luke being sick in the car. It doesn't make sense in terms of time since last chemo, but we have stopped doing top up feeds over the last couple of weeks, as Luke has reached the weight trajectory he was on before getting ill, so we didn't want him to keep piling it on through top up feeds. That seems to have enabled us to wind down the anti-sickness drugs sooner than usual too. It all makes sense I suppose - you eat until you are full. If someone then forces a load more food into you, occasionally you are likely to feel a bit queasy.
The surgeon explained the operation she is planning, and how it will work based on what the latest MRIs have shown. Having not really known what to expect before, we kind of expected a re-run of the operation Luke had in August when the tumour was first identified. Ostensibly it is the same, but as the tumour to come out is much smaller (about the size of a thumb nail now, compared to a whole thumb before) it should be possible to do it without removing and replacing discs from his spine this time - although some bone may have to be removed. It will requires going right up to the spinal chord, so I have had to sign a form saying that I understand that a key risk of the operation is paralysis. Personally I think that is better than August, when an expressly stated risk of the operation was death.
All in all, the operation should be shorter and less invasive than the first time around - but that is not to say that it isn't still major surgery. One thing which wont be known until the operation starts is whether part of a nerve system has to be removed. If it does, because the tumour is attached to it, then Luke will permanently have a numb area down one side of his body. Apparently it is an area where several nerve systems overlap to some extent, so it wont be too pronounced, but all the same, is another long term effect of all of this which means even though he wont remember any of it, Luke will certainly know what a battle his body has been in.
Luke hasn't been sleeping at all well lately - waking three, four, five times a night. It is gradually wearing both Letitia and I down. On top of that, for the last week I have had a cold ad have tried to avoid being around Luke, but today he seems to have picked it up. Hopefully it wont mean anything as far as Tuesday goes - just a runny most at the moment. As long as it doesn't build up on his chest hopefully it wont stop anything going ahead.
As usual, work are being terrific and supportive. I don't know what will happen overall next week, but definitely need a few days off, possibly nearly all week. I am extremely fortunate to work in a team where I am not made to feel like that is a problem. Grated, I will be working extra to catch up in the coming weeks, and not everything that I would be doing at work will get done while I am away - but everything that has to happen, will happen, regardless of how busy others are. I don't know how people deal with situations like we are in without supportive co-workers and understanding bosses.
While I remember, I have just sponsored my good buddy Rich and a few of his friends, who collectively are running the London Marathon as Team Louis in aid of Children With Cancer UK. Just in case anyone reading this feel sufficiently moved about children with any form of cancer, then the link to donate to the team is http://uk.virginmoneygiving.com/team/louis - I know all amounts will be gratefully received, no matter how small.
We'll let you know who Tuesday goes once things are stabilised a bit after the op.
Sunday, March 4, 2012
At the hospital. Luke is asleep for his lunchtime nap, and has been in top form this morning. All being well, we're out of here at about 4pm. Should mean we get home in time for Luke's dinner, bath and bed. Once again I just can't wait to get him and Letitia home.
We had an MRI booked on Friday 2 March. That should be the last thing needed before surgery to cut the rest of Luke's tumour out of his spine. After a bit of to-ing and fro-ing during the week over whether Luke would be coming in for another round of chemo, it seemed to have settled on not doing any more before the surgery.
Imagine our surprise (and frustration) at being asked to stay in for more chemo when we arrived for the scan on Friday. Basically communications broke down a bit last week, and everyone has apologised and said what they will do to make sure it works better going forward. Having created a problem, the hospital have been very good at resolving it. Ultimately, Luke's treatment is the most important thing in our lives right now. If we are told to jump one way or the other for it, we absolutely will. But we can only do that if ee are told which way to jump- being told conflicting information, or just bits of the story, means we weren't prepared this time.
Still, no problem. My parents in law were a huge help on Friday bringing up everything that we would normally need for a stay in hospital (which saved me a couple of extra hours driving and meant I could stay at the hospital all afternoon on Friday). And my mum has been to the house to do all if the ironing which was starting to build up again. Household chores tend to get de-prioritised while Luke and letitia are in hospital, and with about three of the last four weeks spent in, I haven't been as on top if it as Letitia would normally be.
So, we're expecting a call next week once the great and the good have looked at the MRI, and hopefully a date for surgery. I am dreading it, but can't wait to get that over with. Until then, barring spiking temperatures or other issues, hopefully we've got a good couple of weeks now without seeing the inside of a hospital.
Friday, February 24, 2012
Letitia and Luke had a trip out today from our local hospital up to Addenbrooke's for a GFR test (test to make sure Luke's kidneys are still functioning well, as one of the side effects from the chemo can be kidney failure). While there, it was arranged that his MRI scan will happen next Friday. We have been waiting to find out when this will be, as the scan he had in January showed something which the spinal surgeons wanted to check again before operating. This meant the operation to cut the rest of his tumour out was postponed, and in the mean time, the chemo continued. Our consultant decided that with the scan set for Friday, he wanted to see the results of that and make decisions about surgery before more chemo.
I was pretty anxious about the surgery when we thought it was going to happen in January. The postponement meant that all the time I spent psyching myself up for it has to be gone through again. I can't really explain it, but the surgery is a major operation, very close to the spinal chord. There's a lot of risk with it (especially in my paranoid mind!) and it is one more step in this whole process that I would give anything to be able to do for Luke. An added dimension to this operation is it will tell us exactly how successful the chemo has been so far. We know the tumour initially shrunk, and has been stable for a while. But as our consultant says, the tumour will either be a dead mass of cells ready to be cut out (good news), or will be a 'healthy' tumour, effectively being contained by the chemo, but not killed by it (bad news). If it is the latter, there then becomes a question over how successful the chemo can be in mopping up any stray cancerous cells around Luke's body. We'll know more soon I suppose.
For the GRF test, Luke has to have a cannula, which is basically a needle into a vein which can have syringes and other things attached to it to put things directly into the blood. They can't use his hickman line, as they put a radioactive substance in, which would contaminate the line. Blood is taken 2 hours, 3 hours and 4 hours after putting the radioactive stuff in, which measures how much is being cleaned out by the kidneys. Because of the hickman line, Luke doesn't have to have cannula's very often, which is brilliant. For a while back in August and September, it became like he was a pin cushion, and they even ran out of veins they could easily get to for a while. Having to hold him still while doctors tried time and time again to find a vein with a needle were some of the other occasions that I would have given anything to have gone through it instead. But, Luke is a tough little boy, and even if he may have screamed while they were doing it, he always got over it almost instantly. Letitia said today he was a bit put out for a while because he would use both hands to play with his toys (one hand was quite heavily bandaged and hand a splint to stop him pulling the cannula out or catching it on anything). Once he got used to crawling and playing with just one hand, he was fine. It made me think back to August, on the day of his first operation. He couldn't use his legs (they stopped moving, which is why we got sent to Addenbrooke's for an MRI to begin with - to find out why he was basically paralysed from the waist down), and he had a cannula in one arm with a big splint and bandages. It was a pretty difficult emotional time, but before he went off for the operation, we had some time with Luke in the play room on the ward. He was laying on the floor, smiling and laughing with us, one arm and both legs out of action, and frantically waving his other arm. He was in such good spirits even then (undoubtedly helped by some pretty strong pain relief at that point) - they way Luke has dealt with this whole nightmare has been the single biggest thing that has helped me deal with it. It may sound strange to say it about a one year old boy, but my son is my hero - far tougher than his dad, a real little trooper who is just so happy so much of the time. I can't wait to spend some time with him and Letitia this weekend, and then get him home again next week.
Thursday, February 16, 2012
Last Wednesday, Luke went into hospital to start round six of chemo. He was fine in the morning, but in the afternoon developed a temperature. After a dose of calpol, it subsided. The chemo carried out, and Luke didnt seem too bad - no worse than durin other treatment sessions. By the end of the chemo on Friday afternoon, blood cultures taken from Luke's hickmanline had grown a 'strep' bacteria - but as he seemed fine, we were discharged home. Saturday and Sunday were both excellent days, with Luke being his normal, cheerful happy self, but on Sunday night he woke up at around 10.30, which is unusual. We took his temperature and it was 39.8. Our instructions are to call our local hospital if his temperature ever goes above 38, so we did.
Our local hospital asked us to check in with Addenbrooke's, as it soundedlike he would need to be admitted, and they had literally no beds in the hospital, let alone on the children's ward. So if we went to our local hospital and Luke was assessed and did need to be admitted, we would have to be transferred somewhere else. Addenbrooke's still wanted us to go there in order to have Luke assessed at the nearest possible place. Off we went, and it was busy - both the adult and children's A&E were busy, which is unusual on a Sunday night at our local hospital. But, I have to say, the service we got was fantastic - the nurses and doctors were calm and efficient, and handled Luke very well despite clearly being very busy. We were assessed, given broad spectrum antibiotics to begin dealing with whatever the problem was, and the local hospital had discussed with Addenbrooke's and decided to transfer us there by Ambulance. Within four hours of leaving home, we were on a ward in Addenbrooke's and settling in (in the same bed he had been in just a couple of days earlier for chemo). I think that is pretty good going. There is something depressing about following an ambulance with your wife and child in the back of it along a foggy road at 3am though - I dont fancy doing that too often.
So - that was Sunday night. By Monday afternoon, Luke's temperature was back down to normal levels, and it has stayed down since. We were put on certain antibiotics on Monday evening, which I recognised as being the same ones Luke was given for two weeks to clear the staph aureus infection in September. That worried us. Then we were told on Tuesday that the blood culture from the previous week had grown a staph aureus. But everyone was confused about why Luke didn't seem particularly poorly, and why it had taken so long to grow. He is definately one degree under - but part of that is probably being cooped up in the hospital. Each day we have been wondering what is happening, when are we likely to come home. He doesn't seem too bad - but having dealt with staph aureus once before, we know how serious it is.
Today we were told that he needed to complete a two week course of antibiotics that started on Monday night. That means another week and a half at least. If during that time his temperature spikes again, the line comes out. That would mean two more operations - one to take it out, and one to put in a new one. Along with that is obviously additional time in hospital, and delays in the next chemo and possibly the surgery we are waiting for on his spine.
We have had a good run of things, only spending time in hospital for the chemo, and day trips for scans and tests, with the occasional flying visit to A&E for a new NG tube when it has been pulled out. It has become quite routine, and within the boundaries of what is normal in this situation it has become normal. But each chemo session is only a few days. I am remembering very quickly what it was like last August, September and October when Luke was in for weeks at a time. It isn't something you would ever choose, and I just cant wait for them to get home.
On better news, I have my first appointment to donate blood platelets in a couple of weeks. It means I wont be donating blood once every four months any more, but I will be able to give platelets every month. I don't know what I am letting myself in for, but I do know I was really pleased to be told that I am able to do it, and that I will be helping people dealing with things similar to Luke.
I haven't yet got round to sponsoring my good buddy Rich and his team for the London Marathon, but if anyone reading feels like doing a good deed, please click on the link below and sponsor a team of unlikely atheletes in their bid to raise money for Children with Cancer UK - uk.virginmoneygiving.com/team/louis . I will definately be supporting them.
Saturday, January 28, 2012
One major operation, three smaller operations, four MRIs and various other scans, eleven general anaesthetics, five rounds of chemotherapy, a grand total of approaching two months staying in hospital, and the year has been pretty intense for the first year of anyone's life. With at least fou more rounds of chemotherapy, potentially then up to six months of 'maintenance chemo', more scans, another major operation, general anaesthetics etc, the next year isn't exactly going to be a piece of cake either.
But, what we have is a fantastically happy, cheerful, fun, engaging little boy who is reaching all the milestones at about the right time, despite what he has been through. Sure, he is only just getting teeth numbers three and four, but for long periods of time he hasn'r eaten much at all, and as I understand it, eating encourages teeth to come through. Despite the worries about whether his legs would regain the strength they were building up before the tumour meant he couldn't use them; worries about whether there would be any long term damage to them and his ability to use them. We wont know for sure for some time yet, but everything seems to be pretty normal - he is crawling like a rocket, climbing all over everything that he comes across, standing himself up quite happily. We haven't got as far as walking yet, but his Dad had two left feet as a kid, so even if that takes a bit longer to come, it's probably for the best! We are genuinely lucky to have Luke, our perfect boy. He doesn't deserve the cancer and the punishing treatment, no one does. But he has it, and without even knowing it, he is dealing with it fantastically well.
And, we also have a fantastic amount of support around us, which helps enormoously. My wife's parents do a huge amount for us all, right from being around to help at bathtime every evening (it's a two man job to make sure the NG tube and hickman line don't get a dunking, and I'm rarely home from work in time to do it), to taking Letitia out shopping now and then for a bit of normaility, helping round the house etc. My parents too help out - my Mum can be foud every Monday doing our ironing (she had a few weeks off recently, but she was in self imposed exile - ill, and unable to see Luke for fear of passing it on). Our friends understand why we can't see many people - especially those with children while Luke is neutropenic. Just the sheer number of Christmas cards and presents, and now birthday cards and presents, that we got for Luke means we know there are a lot of people out there thinking of him.
All of that doesn't mean that it isn't hard at times. Dwell for too long on thoughts of the future, and alongside the eagerness to get this year over with, finish the treatment, and begin to live a normal life again come thoughts of slightly longer term - will the cancer stay gone? Will it come back because we haven't been able to do radiotherapy? Will we have to go through all this again? Will Luke have any long term side effects? Questions that no one can answer for certain, and which terrify me. But, then I bring myself back round by think, we are very lucky compared to many other people. Luke's tumour was in a place where it could be identified before it did irreversible damage and could spread beyond the primary tumour site. It is in a location where surgeons can access it without extreme measures (we know one little girl about Luke's age on the cancer unit with a tumour in her foot - the treatment has involved amputating the foot). He was so young when he got it, that the prognosis from the start was many times better than it would have been had the tumour developed in even just a couple of years time. And Luke is holding up well against the treatment. Sure, the chemo obviously makes him feel rough, lose his appetitie, sick etc, but he soldiers on. He's a tough little boy. Rather than think too long about what might happen in the future, I think a lot about how lucky we are right now.
We were expecting to be having surgery around the end of January - to try to cut the rest of the tumour out. We had an MRI around the middle of January. We were then called in for another round of chemo a little over a week ago while the surgeons reviewed the scan and planned what they want to do. As it happens, th spinal surgeons have asked for a little longer on chemo and another scan in a month or so, so the surgery isn't going to be before March most likely. It is a bit of a double edged sword - I had spent many sleepless nights in January as the time got nearer worrying about this. It is not a minor little operation, and although it will effectively be a replay of the emergency surgery Luke had in August, that was a big deal too. I wont describe exactly what the surgeons wil do, but suffice to say it is expected to take 6-8 hours, and last time around Luke lost one and a half times the total volume of blood in his body - everything he came out of that theatre with was someone else's. Then the time in intensive care afterwards isn't exactly fun. However, having got near to the expected time of the operation, for it to be moved away means I am likely to go through the whole process again!
Anyway, for now we wont worry about that. We'll keep on getting through the fall out from the last lot of chemo, then just as he recovers no doubt we will start another one. But every round we get through brings the end of the treatment about a month closer.
Finally, I was thrilled to get an email from one of my oldest buddies a few weeks ago. I have known him for about 20 years now, and pretty much the last big 'normal' thing I did before Luke got ill was go on his stag do - and then we all went to the wedding. Unfortunately he and his wife also have another friend with a child who has cancer. Together with one or two other brilliant people, they are running the London Marathon this year. They are raising money for Children with Cancer UK. If anyone reading this is thinking of giving money to charity in the next couple of months, please think of these guys and the link here: uk.virginmoneygiving.com/team/louis
Saturday, January 14, 2012
Luke needs to have his MRIs under general anaesthetic, as the oral sedation doesn't work for him. That makes it a little more complex than it would otherwse be, but he deals fantastically well with things. Yesterday was one of those days where, because of the GA, we couldnt feed him since the previous evening, and he couldn't have a drink all morning. Add in an hours drive to the hospital (Luke's list of favourite places wouldn't include the car) and we have a recipe for a really tough morning keeping him going until they give the GA. As it is, he is really pretty good with it all, and just seems to carry on. There might be the occasional grumble, but nothing major. I dont think I would be quite as good with it - especially if I didnt actually know why is wasnt being fed or watered, which he cant possibly.
We are at the point in time where we would normally be starting the next round of chemo. The scan and hopefuly the surgery means that we are still some way from that. It is great to have a bit of a gap, as we are really seeing Luke back to something like normal. He is eating pretty well (although in the last few weeks his weight has stayed excatly 8kg, so he has stopped putting it on). He is pulling himself up to standing, and begining to use his walker (very tentatively). He is really coming on strong, and all of the thoughts I had back in August and September about having to deal with late development problems because of the effects of either the cancer or the treatment do not appear to be anything more than fears and anxieties. So far, we have been extremely lucky, and every step has been towards the best case end of the scale (except for thevery first step of Luke being ill and the diagnosis being cancer - that wasn't exactly lucky!).
I have to say, the Paediatric Day Unit at Addenbrookes was absolutely packed yesterday, far busier than we have seen it before. I know they had a bit of catching up with different patients after the Chrsitmas and new year break, but they really were running at the abolute limit of what they could do. The nurses worked like absolute troopers, as did the other services we came into contact with (the GA team had two or three paediatric GAs to do before us, and our scan was at 11am, so the team was with us by around 10.30 or just after). The MRI was obviously fully booked for the day, as the number of people in the waiting area for that was more than normal. But it all went like clockwork - they really worked terrifically well.
So we have a bit of a waiting game again now. That I dont mind. I am aprehesive about the surgery, as I know it is a major operation very close to the spinal chord, but Luke recovered so quickly from the first op that once it is over, I expect he will be fine pretty quickly. Then the chemo continues, for at least five months, possibly the rest of the year.
Luke's first birthday is in a couple of weeks. It really doesnt feel like he's been part of our lives for nearly a year. I woul do anything to mean he didn't have to go through all this treatment, and especially to mean he didn't have any pain before the tumour was diagnosed. But, he is handling everything amazingly well, and we wouldn't change a thing about him.
Sunday, January 8, 2012
Luke had a great first Christmas - he enjoyed lots of great presents, and time with Granny, Grandad and Uncle Matthew from Italy. Unfortuantely Nana and Grandad didnt see too much of him, as my mum was ill from Christmas day, and is only just getting over it. Being neutropaenic through Christmas and into the new year, we couldn't take any chance with Luke.
We had two trips to the hospital over the Christmas period. Once of Christmas evening to hput his NG tube back in. In what must have been the only ten seconds of the day when Luke wasn't getting at least 100% of someone's attention, he managed to pull the tube out. It was towards the end of the day though, and while it meant a detour before getting home with him, it wasn't too bad and didn't take long at the hospital (appaently not many people choose Christmas evening to go to A&E). Then on new year's eve, we needed to get Luke a blood transfusion. Every numer in the blood count was pretty low, and on the Friday before - heading into another bank holiday weekend, the community team and Addenbrooke's decided that although strictly speaking he didn't quite require a transfusion at that point, his numbers were still decreasing and it would take longer to arrange over the bank holiday. So, onthe Friday afternoon, we were told that we should go into hospital on Saturday. We were kind of expecting it - Luke has had four rounds of chemo, and needed blood transfusions after three of them now. He was so pale, so tired and so lacking in energy. Within a day of the transfusion, he was much more like his normal self.
We have an MRI on Friday - hopefully the fact it is Friday 13th will have not bearing on anything. The results from this will determine if the doctors are happy to schedule the next lot of surgery on Luke's back. If that is the case, we would hope to be having that surgery within a couple of weeks. I am pretty relaxed about the scan - it will take some distraction tactics as Luke needs a general anaesthetic, so has at least six hours without food to go through, but the last few GAs have been relatively easy to get him through. The scan is in the morning, so some of the fasting period will be while he is asleep, which will aslo help. I am, however, getting really tense about the surgery. It is a bit silly, becuase it isn't even scheduled yet, and it is essentially the same operation he had in August. But, for whatever reason I am getting very uptight about it. Hopefully I will get on top of things before too long.
So - Luke is doing well overall. We have an extra couple of weeks in between chemo sessions because of the surgery, so we are just getting to the point where he is completely over the effects of round four, and for a few weeks we have a perfectly normal feeling boy. He remains fantastic in terms of how he is dealing with things. Barring the odd night with disturbed sleep lately (we aren't sure what is waking him) Luke is the model child.
Saturday, December 24, 2011
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.
Sunday, December 18, 2011
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.
Sunday, November 27, 2011
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.
Saturday, November 19, 2011
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!
Saturday, November 5, 2011
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.