Monday, 28 February 2011

Goodbye Hospital, Hello Hospital ...

So Adam got out of hospital on Thursday evening, a pretty impressive achievement for stem cell transplant in the scheme of things. Since then we've had a visit from the community nurse on Friday to do a full blood count, followed later by a trip to Epsom General for a platelet transfusion; a trip to Epsom General on Saturday to do a full blood count; a trip to Epsom General on Sunday to do a full blood count, followed later by a trip to Epsom General for a platelet transfusion. And today (Monday) Alison has taken Adam up to day-care at the Royal Marsden for a check-up and, yep you guessed it, to do a full blood count.

I'm sure you get the picture. We may be home, but we are still very much in the thick of things. It's highly likely Adam will require platelet and (less frequently) blood transfusions for a while yet, though hopefully it won't be every other day for too much longer. Not only was his bone marrow completely wiped out by the high-dose chemotherapy, but also the MIBG radiation therapy he had previously is both very hard on the marrow and its effects quite long lasting.

Aside from the trips to hospital Adam has been quite well in himself. His eating has been steadily improving and we're really hoping to see some weight going back on this week. We had a brief excursion to the shops on Saturday which Adam enjoyed, although he was a little worn out by the time we got back. Both he and Jessica bought themselves Paper Jamz pretend guitar make-lots-of-loud-noise things. They then proceeded to rock out all around the house at various intervals during the weekend. Looked like fun actually, but I was NOT allowed to play. Throw in a little bit of Xbox, a copious amount of club penguin online, some power rangers morphers/weapons, beyblade battles, and the usual suspects on Disney Channel and Nikelodeon, and you've pretty much got the whole of Adam's weekend covered.

We may be back-and-forth to the hospital like the proverbial yo-yo. but having started February with Adam in hospital it feels good to be ending it with him sleeping in his own bed.

Thursday, 24 February 2011

Goodbye Hospital ...

Adam came home this evening. We'd accumulated so much stuff at the hospital during his 25 day incarceration that it took two trips to fetch everything back. Predictably Adam made a beeline for Jake's bedroom the minute he got in, and spent a good couple of hours playing on the Xbox. He also finally got to eat one of his Mum's Yorkshire Puddings that he's been dreaming about for days. "Delicious" he said.

Wednesday, 23 February 2011

Wow ...

When I went into see Adam this afternoon the first thing that struck me was 'Wow! He's dressed. Trousers, t-shirt, the works.' First time in a fortnight. He must be getting prepared to depart the hospital, and this is the dress rehearsal stage.

He spent five hours in the playroom today, much of it in the company of the Marsden clowns, who made him laugh so much that at one point he actually fell off his chair. It was one of those tiny kids chairs so he didn't have too far to fall. Just as well given that his platelets had dropped to 7 this morning. In the late afternoon he was given a transfusion to top them back up; we don't expect it'll be the last. With two administrations of MIBG therapy preceding the high dose chemotherapy his bone marrow may take a considerable time to recover sufficiently for him to have a self-sustaining haemoglobin and platelet count. We just don't know.

His temperature continues to rise noticeably as the day wears on, before falling again once he is asleep. Though odd, it's not causing any major concern. We remain on schedule for a discharge sometime this week.

Tuesday, 22 February 2011

And again ...

Crossing fingers isn't without it's merits you know. Adam's temperature came back down to 37° overnight, and there it has remained. So it's as-you-were, before that text message interruption from Alison yesterday. He was just keeping us on our toes I guess.

This is probably a good time for me to sing the praises of the staff at the Royal Marsden for looking after Adam (as well as all the other kids under their care), and say what a fantastic job they do. The place isn't without it's problems - the design of the new ward has flaws aplenty - but I have nothing but admiration for the doctors, nurses, kitchen staff, housekeepers, etc. and all the work they do. Sure I have my bad days when I hate the place and everybody associated with it, and sometimes a particular nurse assigned to look after Adam will be having a bad day and be a miserable so-and-so. But overall they have an incredibly tough job and they do it with tremendous dedication. This last weekend the ward was almost full, so many kids were sick and needing special attention that the nurses were, quite literally, rushed off their feet. Our nurse even apologised for "not having been into Adam much, but he's my most well patient today."  I told her no need to apologise, the less of her time Adam needed the better as far as I was concerned!

One area where the Royal Marsden stands out head and shoulders above the other three hospitals Adam has stayed is the food. The parents kitchen is better than most, though still inadequate when you consider some families are there for months at a time. The patients kitchen though is tremendous - hot and cold food served to order for breakfast, lunch and dinner. For the likes of us, who have embraced the importance of diet and nutrition in helping Adam stay strong and fight his disease, it's never going to be as good as home cooking. But I simply wouldn't let him touch the food in some of the other places.

I've just phoned Alison for an update. Adam is a bit grumpy and fed up. And his temperature has risen to 37.8°. Are you detecting a pattern? Here we go again ...

Monday, 21 February 2011

Nearly, but not there yet ...

Today we moved Adam out of an individual room and into a shared bay. All of his IV infusions have been stopped and providing his blood counts remain stable we expect him to be discharged later this week. He has a long way to go to recover his appetite to where it was when we arrived at the hospital 22 days ago, but he is at least eating regularly and his fluid intake is perfectly fine. Aside from a couple of tablets - Ursodeoxycholic acid (for his liver) and Sando-K (potassium) - he is on no other medication. If this proves to be it as far as high-dose is concerned we've had a massive result. Sure the sickness and diarrhoea was unpleasant, the mucositis burning holes in his throat was horribly painful, the rash from the reaction to antibiotics looked hideous, and the weight loss from lack of eating was not nice to witness. But trust me, none of these were very serious in the big scheme of things.

Of course we've got to remember that we didn't put Adam through all this just to see how well he'd cope with it. Whether or not the high-dose chemotherapy has done anything to ease Adam's disease burden remains to be seen. I don't happen to believe it will, but what I do hope is that it will have killed off Neuroblastoma cells lurking elsewhere that are not visible on the scans; cells which if not destroyed would go on to cause relapse in other areas.

As we come out of high-dose the big question now will be what to do next. It's very likely that whatever it is, unless we do a 3rd MIBG therapy, we won't be doing it in the UK.

Incoming text message from Alison as I type ... "Adam temperature 38.1°C." What was I saying about Adam being discharged later this week? If he spikes a fever he'll be back on the antibiotics and they'll be taking  another blood culture to see if he's got another infection (a process, as I mentioned before, that takes at least 48 hours).

Whilst Adam's temperature remained elevated during the evening it stayed just below 38°, and therefore no action was taken. He managed to venture into the playroom for the first time in two weeks and spent an hour or so playing happily with Jessica. The bay he is in now is much warmer than his room was. We've changed him into short pyjamas, put him to bed, and crossed our fingers that his temperature normalises again overnight ...

Saturday, 19 February 2011

Adam the Merciless …

So far Saturday continues the upward trend for Adam. HB and platelet hanging in there at 7.5 and 18 respectively, white blood count and neutrophils steaming ahead at 4.9 and 2.4. Those numbers are still with GCSF support, which is due to stop tomorrow; the big step forward will be for HB and platelets to begin rising, and white blood count and neutrophils to stabilise without any GCSF infusions.

Todays major mission is to get Adam off of IV fluids. The past couple of days we have concentrated on getting him back into the habit of eating, but at the expense of nagging him about his drinking. Today we’re going for ‘the full monty’. Our nurse has disconnected his hydration line, and we’re going to get a litre of water into him by the time he goes to bed tonight.

Adam continues to be quite well in himself and his temperature has remained low for several days now. Yesterday his blood was taken to be cultured again, and if it comes back negative this time the antibiotics can cease as well.

Our main job is to keep Adam eating, drinking, and entertained until he is clinically well enough to be discharged. This morning he and I had our first play fight for a fortnight. Needless to say I lost. The little toad gave me an enormous wedgie – I thought my pants were going to rip at one point. Then he taunted me with “You big wimp. You can’t even kick a little kid’s butt.” He is merciless I tell you, merciless. And, before you ask, yes I did make him wash his hands afterwards!

Friday, 18 February 2011

Controversial? Moi?

I'm not somebody that likes to be controversial, nor do I seek to be confrontational. Fact is I hate arguments; still have them of course, we all do. But I don't like them. I am what I am, I do what I do; other people are what they are and they do what they do. It's in this context that I need to choose my words very carefully today, as I really don't wish to offend people who are only doing their jobs. However, it's been an interesting couple of days.

Adam's lack of food intake, stemming from first sickness and then mucositis, had been a cause for concern for a while. More so it has to be said with the doctors, nurses and dietician at the hospital than with Alison and myself. We knew that in all probability he'd be off his food for a period of time, but it didn't make us too uncomfortable as we were very happy with his weight going into high-dose. My view was that as long as he didn't show clear signs of malnutrition, have drastic weight-loss, or become weak and lethargic, we would manage the situation in hospital as best we could then build Adam back up once he was home and had recovered his appetite.

An alternative view, and one that seemingly prevails at our hospital, is that the primary objective should be to minimise weight loss during treatment using any and all means possible. We have been quite meticulous in managing Adam's diet over the past six to nine months. Not once during this time has anybody associated with the medical establishment taken one iota of interest in what Adam eats, or indeed his nutritional status. The weight he has gained - from 21 kilos after surgery in October to 25 kilos as he entered high-dose in February - is all down to our own efforts, under the guidance of our nutritional therapist. And none of that weight gain has been through eating junk. None of it.

However all of a sudden people want to get involved, to have control. I do get it, sort of. As Alison pointed out to me, Adam is an inpatient, he is under the care of the hospital. Maybe it's appropriate for some kids, but not where Adam is concerned. What I would like is a relationship where we ask for help and advice as and when we need it. Instead we are in a situation where we are being given advice we never asked for, are choosing to ignore it, and will eventually either have a falling out or at best come to an uneasy truce. I say 'we', it's predominantly 'me'. Stubborn, pig-headed, and determined to be in control. I may not like arguments - but I still want people to see and do things my way!

I had a slight suspicion we might be on a collision course, but things came to a bit of a head on Wednesday evening when Adam's nurse announced she was going to put up his TPN. TPN stands for Total Parental Nutrition. It's 'stuff' pumped directly into the vein as a substitute for food. It's obviously not natural in any way, shape, or form. It certainly does have it's place; if there is no other way to get nutrition into a person, all other options have been exhausted, and they clearly need help I'm sure it can be a life-saver. In my own mind, however, it's clearly a last resort. With regard to Adam it had come up in conversation as a possibility down-the-line if things didn't improve, and we kind of nodded understandingly. However, I was shocked when Alison called to say they were preparing to start it immediately. There was no way he was having it upfront, 'just in case things got worse'. Sure he wasn't eating, sure his weight had dropped from 25 to 23 kilos and sure he was feeling awful; but he wasn't immobile and unresponsive. We weren't desperate; it was too drastic and it was too soon. TPN is made-to-order for a specific individual, and it has a one-day shelf-life. So on Wednesday Adam's TPN went straight in the bin, but it's not something I'm in any way sorry about. Like I said at the start of this post I don't want to offend people for doing their job, and nor do I wish to tell them how to do it. In fact it's more fundamental than that; we just have different views about what's important and that makes it very difficult to be reconciled. We’ll take Adam home having lost a fair amount of weight during transplant but it’s a price we always knew we would be prepared to pay.

Anyway, having refused to allow Adam to be given TPN on Wednesday evening it was clear from the outset on Thursday that he was starting to feel better in himself. He refused to take any pain medication saying he didn't need it. He wanted to eat, he even uttered those immortal words 'I'm hungry'. Of course, having not eaten in over a week it's going to take time. Small steps. There was also an element of apprehension in his swallowing; not so much that it hurt to swallow but that Adam was frightened it was going to hurt.  As the day wore on the improvement was more obvious - for the first time in days he had all of his oral medications with very little fuss. The Ursodeoxycholic acid liquid he has from a syringe went in just two attempts instead of the twenty-two it had been taking. At one point he got out of bed, walked over to the cupboard and helped himself to a rice cake. Might not seem like much, but it was more interest than he'd shown since before he had his stem cells returned nine days before. So it was progress.

Friday has continued the upward trend; a small amount of porridge for breakfast, some fish fingers and vegetables for lunch, and a full bowl of broccoli for tea (his choice). A couple of snacks in between. And a serving of a special nutritional supplement called Ultra Meal that was recommended to us by Adam’s nutritional therapist (having once again ignored the dietician’s alternative – oops). He tells us that his throat doesn’t hurt at all now, there’s no discomfort whatsoever when he swallows. I almost dread saying it, but it looks like he’s over the worst.

We are watching Adam’s blood counts each day for signs that his stem cells are starting to grow new bone marrow. Each morning he is having GCSF infusions to stimulate the new bone marrow to produce white blood cells. As of today (Friday morning) his HB was 7.7 and platelets 19; both just about holding steady above the level at which they transfuse (below 7.0 and 10 respectively). In 24 hours his white blood count (WBC) has risen from 0.8 to 2.2, and his Neutrophils (ANC) from 0.04 to 0.5. In order for him to be discharged he must be physically well, but also his WBC must be stable above 5.0, or his ANC stable above 0.5. So we are on the right road. White blood cells to keep on the same trend, with HB and platelets starting to gain some upward momentum. Then we’ll be getting somewhere.

On reflection the past couple of days have left me feeling vindicated in resisting the TPN as I did. I'm not getting carried away though, there's a way to go yet and all manner of complications could still arise that will see us revisit this subject. It’s actually still relatively early days and if it has been as bad as it’s going to get for Adam he will have coped tremendously well compared to a lot of children. But it could still be that TPN will be the right way to go at some point down the line, though I sincerely hope not. I wasn’t saying never ... just not yet.

Wednesday, 16 February 2011

Do something useful ...

I am aware that the majority of photos I post of Adam on here (as well as Facebook and Twitter) show him either smiling because he is happy and having fun, or smiling in the face of adversity. But smiling nonetheless. I am proud of his smile; it lights up our lives.

However, just once in a while I feel an intense need to show the other side of what our little boy has to go through. I just have to get it off my chest. I am not a wordsmith, I can't tell the story anything like as well as these two photographs taken 20 days apart. Take a look at them. And then try and imagine this is your child, and what it must feel like to see them go through this - to have knowingly consented to put them through it.

26th January 2011 16th February 2011

Now thank your lucky stars it isn't your child. And pray it isn't a fate that ever befalls somebody in your family.

And whilst your thinking about that, why not also think about how you might help make a difference, a change for the better; give blood, become a platelet donor, setup a regular donation to a charity of your choosing, send a sick child some love via postpals (, sign a petition to get Neuroblastoma better recognised (, help out your local hospital, sign-up as a charitable volunteer, or maybe just make a bit more time for your own kids.

I will freely admit that before Adam was diagnosed I was apathetical about all of this stuff. We lived our nice cosy lives in ignorant bliss of this 'other world'. Sure we donated money to some or other charity every now and again, but I could never say I did whatever I could.

Why am I saying all this now? I don't really know to be honest. Do I want people to be feel sorry for us, for me? No, that's not my intention. Do I envy people who are still living a nice cosy life? No, it would be pointless and serve no purpose whatsoever. Do I think less of people who want to count their blessings, turn a blind-eye, and walk on? Not really, I can see enough of my old self in that behaviour to be a hypocrite if I did.

I suppose I just think that today instead of posting a picture of Adam smiling like a little boy without a care in the world, if one person reads this and does something tomorrow, or next week, or next month, that they wouldn't have otherwise done then I'll have done something useful today - instead of just sitting around feeling particularly useless.  And if not, at least for today, I will have tried to do something useful, to find a positive where seemingly none existed.

Tuesday, 15 February 2011

Another Day ...

... another symptom.

Today Adam woke up with a lovely spotty red rash covering his face and torso. So far it's not bothered him greatly, except for the fact that he knows it's there. He's already had to get a mirror and have a good look at himself several times. In the first instance they are viewing it as some sort of reaction, and are proposing to treat it accordingly. It's not itching and he doesn't have any fever to go with it.

His blood cultures have also come back positive for streptococcus bacterial infection, so he'll need to complete a full course of antibiotics.

Last night I got a flashlight and examined the inside Adam's mouth. It's as though somebody has extinguished a couple of cigarette butts on the roof of his mouth, either side of the entrance to his throat. Literally red raw and burnt right through. No wonder the poor little chap finds it nigh impossible to swallow anything at the moment; other than water it brings forth a horribly pained expression as he forces it down. Even the codeine he's been taking for pain relief has had only a very limited effect.

That said, he was generally better in himself yesterday than he had been the day before. His temperature was lower and he was more communicative, at one point even getting some toys out on his bed to play with. He still had his tired spells and a couple more 'accidents' but it was a definite improvement from Sunday.

We shall see what the remainder of today brings...

Monday, 14 February 2011


Some of you must have read the 'Daisy' books to your kids? They used to be a firm favourite with Jessica when she was younger, and we often used to read 'Yuk!' before bedtime.

As I spent Friday and Saturday night with Adam at the hospital, Alison took over parental duties last night. And oh how she must have wished she hadn't. For not only is Adam still feverish and his throat more painful than ever, on top of that he now has raging diarrhoea. We'd been told to expect it, but overnight it took hold with a vengeance. So much so that Alison informed me this morning that Adam has worked his way through all of his spare pyjamas and the race is now on to get some washed and dried before the next 'incident'.

As Daisy's Mum says to her at the end of the aforementioned book ... "Yuk, yuk, yuk, yuk, yuk!"

Whilst I might be making a joke about certain things, I'm not trying to belittle the fact that Adam feels as rotten as can be. At the same time, whilst the side-effects of the high-dose are confined to these common, transitory, ones we know they will pass and he'll be back on an upward trend again. Our biggest concern is the lack of food; Adam hasn't eaten for days now. With the benefit of hindsight we should have accepted a feeding tube, although we didn't expect him to be so sick after the Melphalan and Stem Cell infusions. The fever and mucositis we had prepared ourselves for, but not for him being sick like that. We've speculated that as well as the chemo he may have been suffering from the bug that both Alison and I had, though we'll never know for sure one way or the other. And even if we'd had an Ng tube put in, the timing would have had to be very precise as he was sick for five straight days. If he'd had a feeding tube in anytime he was sick it would have come straight back out. And that's also yuk - one end of a feeding tube hanging out of the mouth, and the other end out of the nose. Yuk, yuk, yuk, yuk. yuk!

Sunday, 13 February 2011

Crash and Burn …

Adam’s blood counts finally hit rock bottom. Whilst his HB remains artificially elevated due to the earlier blood transfusion, his platelets this morning sat at a lowly 4, and his Neutrophils at a big fat zero. The burning in his throat and pain when he swallows is now extremely severe and debilitating. His temperature fluctuated overnight, but this morning peaked at 38.4 – above the magic number at which they routinely begin antibiotics and take blood to be cultured for possible bacterial infections.

At the moment the mild fever hovering around 38 to 38.5 is consistent with his neutropenia (zero neutrophils equals zero immune system) and it wouldn’t surprise me to find that in 48-hours his cultures come back negative (it takes that long for the blood to be plated and start to grow any bugs). If his temperature spikes higher still i.e. above 39.0, or he becomes otherwise symptomatic, then I would suspect he’d picked up an infection.

He is still not eating, and is generally extremely tired and irritable. Having slept for 3 hours during the afternoon yesterday he proceeded to stay awake long past any reasonable bedtime for a seven year old. Another consequence of the afternoon ‘nap’ was a lack of oral fluid intake that led to him being put back on IV fluids. Given how difficult it was to get him to drink enough water that’s not an altogether bad thing.

Tomorrow it will be a week since the first batch of Adam’s stem cells were returned to him. We just have to wait this period out until those cells start to engraft and grow new bone marrow. In the meantime all we can do is manage the situation as best we can, hope there are no more nasty surprises, and keep our fingers crossed that he turns the corner sooner rather than later.

He may be feeling rotten, but the little fellow is still able to muster a smile for us every now and again … this photo was taken earlier this morning.

adam 20110213

Friday, 11 February 2011

Counts down, soreness up …

Adam’s blood counts are continuing to head towards zero, while his throat is becoming more sore and painful. The porridge and banana that he had for breakfast this morning was a slow and difficult struggle. The pills that we were cutting in half we are now cutting into quarters. The oral medicines that we have been mixing with milk are now starting to stick on the way down.

The expectation/anticipation is that things will become worse over the next 3 to 4 days. I fear it’s going to be a very unpleasant time indeed.

Thursday, 10 February 2011

Still not crashed yet ...

We are still waiting for Adam's blood counts to hit rock bottom. Yesterday his haemoglobin dropped to a level where they gave him a three-hour transfusion, and his platelets are hovering just above the threshold at which they'll need topping up. His white blood cell and neutrophil count are low, though still above zero; they are expected to crash by the weekend. He's been started on a potassium supplement, but aside from that all is well.

Wednesday was a pretty shitty day, Adam lay around not eating and feeling pretty sorry for himself. He was sick during the afternoon, just wasn't able to hold down what he'd just eaten. I have to say partially digested banana comes out a lot whiter than it goes in. What? It was just an observation!

Thursday has been a much brighter day. Although not wanting to eat much Adam has at least wanted something now and again. Better still he's actually kept it all down. Now he's off IV fluids we have to try and ensure he drinks at least a litre of liquid each day. I can tell you that when you are only drinking water, and drinking it through a straw, that is not so straightforward. It took a great deal of persistence and coaxing throughout the course of the day to get Adam to consume the required 7+ cups, but we got there in the end. He's been in a happy mood throughout; this morning we even managed to get him showered and change his clothes and bedding. Aside from the sheer boredom of being stuck inside a hospital room for 95% of the time it's not been a bad day actually.

Wednesday, 9 February 2011

So far, so alright …

On Sunday evening (30/01) we took Adam in to start his BUMEL-MAT with PBSCT. That’s BUsulfan and MELphalan Maximum Action Treatment with Peripheral Blood Stem Cell Transplant. “Maximum Action Treatment”. “High Dose Chemotherapy”. “Sub-Lethal Dose Chemotherapy”. I’ve heard it referred to as many different things, but what they all boil down to is the toughest period of Adam’s treatment thus far.

We enjoyed our final weekend at home as much as possible and delayed taking Adam up to the hospital for as long as we could. To be fair when the nurse phoned to ask where we’d got to, we had almost finished packing the car. When we arrived I was somewhat disappointed, but not altogether shocked to find we did not have an allocated side room, but were instead given a bed in a very ‘cosy’ (read small and cramped) 3-bed bay. The on-going building works at The Royal Marsden (they are currently refurbishing the old unit to become the larger revamped out-patients) have put a lot of pressure on the in-patient ward. Later this year it will be spread over two floors, upstairs for teenagers and adolescents, downstairs for younger children. At the moment however, everyone is accommodated on the upper floor whilst the ground floor temporarily houses out-patient facilities, consulting rooms, etc. It’s not ideal, for staff and patients alike.

I voiced my concerns very early on about the lack of an individual room, and we were soon visited by a number of people who explained that we were top of the list; the plan was for us to move as early as the following day and most definitely by the end of our first week there. I suspect my intervention didn’t materially affect the plan itself but rather just flushed out an explanation that hadn’t been forthcoming when we were admitted. As it transpired we were moved into one of the side rooms on Thursday and it’s there that we have remained since.

The chemotherapy (Busulfan) started on Monday morning. Adam was given six pills every six hours morning and night for sixteen doses. At 4am, 10am, 4pm and 10pm he donned his surgical gloves and knocked back one capsule and five pills in rapid succession. Considering Alison was waking him up at 4am in the morning for one of the doses he was so unbelievably good at taking them. No messing around, no fuss. We know he’s usually a good boy when it comes to taking his medication, but even we couldn’t have predicted how easy this part of the process was going to be.

Along with the chemotherapy itself Adam was on permanent IV fluids, IV Defibrotide twice per day, Ursodeoxycholic acid tablets twice per day, Glutamine powder twice per day, Cyclizine (tablet) and Ondansetron (IV)  for anti-sickness, and Clonazepam tablets to prevent seizures. Our nurses have been very regular visitors to Adam’s bedside that’s for sure.

Throughout Busulfan Adam maintained a very healthy appetite, eating and drinking extremely well indeed. His biggest issue I think was being permanently attached to the pump stand because of the 24-hour fluids. After the last dose of Busulphan at 4am on Friday morning there was a 24-hour break before Melphalan commenced on Saturday. We hadn’t actually realised beforehand that Melphalan was given as a single short infusion; the schedule we had wasn’t explicit and we’d never posed the question.

It was pretty clear from Adam’s reaction later on into Saturday that Melphalan was some heavy duty stuff. Having eaten three good meals during the day and been his usual self, he began to complain of tummy ache as the day wore on. As bedtime approached he finally succumbed and was sick. Very sick. A veritable mountain of sick. Something like 450g of what one of the nurses had written up on the sluice whiteboard as ‘undigested spag bol’. Not a bad guess, but it was in fact shepherds pie. If only she hadn’t relied on a purely visual analysis…

Into Sunday and Adam had now lost his appetite almost completely. That said it was still fairly easy to get his medication down him, he was drinking ok(ish), and was still in reasonably good spirits too. As the afternoon turned to evening he grew more tired and became nauseous once more. This time when he vomited it was mostly liquid, and soon after he settled down to sleep.

Having been sick in the run up to bedtime on both Saturday and Sunday we had reasonably anticipated a rough night was on the cards. However, he slept soundly, waking only at 4am to have his anti-sickness tablet, and inevitably (still being on fluids) a gigantic wee.

Late into Monday morning Adam’s stem cells arrived on the ward ready for defrosting. Before having the stem cells returned he was dosed up with Pethidine, Hydrocortisone, Piriton, and Ondansetron all in quick succession. Finally the stem cells themselves were pushed back in, two syringes full. No sooner had the nurse begun pushing than Adam started to feel sick. Within seconds he had vomited. So much for me trying to get that half-a-slice of toast into him that morning! It’s actually quite a common reaction so we’ve since learned, but like a lot of things we didn’t find out until after the event.

The process of returning his stem cells was repeated on Monday afternoon and then again on Tuesday morning and afternoon. He was sick again on Tuesday morning, but not on either afternoon. No idea why.

So as we head into Wednesday the vast majority of the administration side has been completed. Adam is showing signs of fluid retention and the doctors are monitoring his potassium levels and blood pressure, but as yet we have no major areas of concern. Adam’s fluids should be taken down sometime during the day, and he will continue on with the supporting meds – defibrotide, urso, glutamine, etc.

We expect his counts to drop from here on, bottoming out around the weekend. During this time we’ll be watching closely for signs of mucositis, and hoping it keeps to a minimum. We know from our experiences post-TVD chemo that this is a highly painful and debilitating condition; we know from the doctors and other parents that children can experience the most extreme forms of it following high-dose treatment. For better or for worse we’ve decided against Adam having an Ng tube. Once mucositis sets it’s no longer possible, so we’ll just have to manage as best we can.

The period for the re-infused stem cells to grow new bone marrow is around 21 days from now. During this time Adam is highly vulnerable to infection, and also susceptible to developing serious side-effects of the chemo. Until he has grown new bone marrow and his white blood cell production exceeds a certain threshold he must remain hospitalized.

So far, so alright then. But we’d be kidding ourselves if we were to think the hard part was over – in all probability it’s only just beginning.