Another update ...

It occurred to me this morning that it's been quite a while since I updated. And whilst I did say I'd only update when I have something to say, and even though I have very little 'new' information to impart, I'm updating anyway because I feel like it.

Most of the previous post was written on our immediate return to England, with some subsequent updates to take care of developments in the intervening period before I pushed it out as a public post. The time in-between was spent informing those whom I didn't want learning the devastating news by reading about it on here. I also had to choose my moment to talk to Jake and Jess. Being completely frank, when I wrote that post I was utterly convinced that the next would be the last.

Whilst Adam has a growing list of issues, and it's clear to see that his disease continues on it's relentless path, the progression has been slower, and the deterioration less dramatic, than we had feared it would be. He is comfortable and has been, for the most part, without pain. For this we are ever thankful. The chest drain was removed, and we've since had no further issues with fluid accumulation in his lungs. Again this was not something that was envisaged when we transitioned to palliative care, either by ourselves or any or Adam's doctors.

Although Adam is really not up to doing a great deal now he did manage a few days out some weeks ago, including a very special trip to the Harry Potter Studio Tour arranged for us by Rays of Sunshine Children's Charity. We all went along as a family, and had a lovely time. And as an extra special treat we got to hang out with Mr Draco Malfoy himself!

When we flew back from the US we did so with a 28-day supply of the drug combination that Adam had been on, minus the dasatinib that we thought might be contributing to his pleural effusions. Which left a decision to be made when the supply was exhausted. In the end we came to the conclusion that whilst Adam was comfortable, and not in pain, we wanted to continue things just as they were. Whilst withdrawing one or more of the drugs may have made no difference whatsoever, if we did so and Adam's condition changed dramatically we'd always be left wondering whether it was precipitated by our actions. Any actual cause-and-effect could never be known of course, but that wasn't a position I wanted to find myself in.

Having left it late to come to such a conclusion the only option was for me to make the 8,000 mile round-trip to Michigan to collect another 28-day supply, leaving home at 8am on Saturday and returning at 9.30am on Monday. And even then, it was only down to the tremendous support from the staff at Helen DeVos, and Julie and Craig in particular, that enabled it all to work out on a weekend when the pharmacy wasn't even open.

Because of our prevaricating about whether or not to continue, Adam was off two of his drugs for a week, and last Monday and Tuesday experienced worsening, debilitating, pain. We increased his pain-relief patch, but that only brought other problems. A week later, and back on all three drugs, he is now comfortable once more. His pain receded and we backed off his pain relief to the level it was before, and where it has been ever since we returned from the U.S.

And so that's where we're at, continuing to live day-by-day. Adam has a platelet transfusion on Mondays, blood and platelet transfusions on Thursdays, and we manage symptoms as best we are able in the meantime. We have a fantastic community team supporting us, and the out-reach team from the Marsden are available at all times, day and night. So far we have not spent any time under hospice care, preferring instead to look after Adam at home. Which is what we will continue to do for as long as it remains possible ... please continue to keep him in your thoughts and in your prayers.

An update ...

After four years, though it seems like longer still, the final stage of our journey has begun. We have left America for the last time, our principle task now to make Adam as comfortable, and free from pain, as possible.

We haven't told Adam what the future holds, and neither do we intend to; for what purpose would it serve except to add mental stress and anguish on top of the physical pain? Jake and Jessica do know -- a conversation like no other I have ever had, or ever want to have again -- but it was necessary to be honest with them. For their sakes, please be sensitive with any comments.

Adam remains the same as ever. He reminisces about what he used to do when he wasn't like he is now. He talks about what he's going to do when he's better. He informs me that we can buy some more sticky velcro so his replica WWE championship belts still fit him when he's bigger. He asks me if he can have a pocket tool with scissors, and bottle opener, and screwdriver, when he's older? He wonders if the cricket bat we bought him last summer will still be big enough for him this year? Out of the mouth of a child, an embodiment of innocence even now despite everything he's been forced to endure. And they cut through my heart like a knife.

Just over a fortnight ago, on Tuesday morning, Adam went into theatre just after 9am to have a tube inserted into his chest, and 1.5 litres of fluid removed from his right lung. By 4:30pm he was in the car, connected to a 4ft hose into a chest drain collection kit, and hooked up to a portable oxygen compressor, on his way to Detroit airport for the flight home. Not the standard discharge process after such a procedure, but there was genuine concern that if we didn't get Adam home as soon as possible, he might not be able to fly. He was retaining large amounts of fluid throughout his body, and in the days prior to our return his output had reduced to practically nothing despite the repeated use of strong diuretics.

A huge thank you is due to everyone at Helen DeVos Children's Hospital for pulling out all the stops to get Adam home safely. And also to the cabin crew on our Delta flight from Detroit to Heathrow, who were helpful, considerate and patient with us throughout. I'm still not entirely sure how we made it back so (relatively) uneventfully, but we did.

Since returning to Epsom we've been to the hospitals we needed to go to, talked to the people we needed to talk to, and set in motion the things we needed to set in motion. We have access to the 24-hour symptom management team at the Royal Marsden, our community team are also able to provide round-the-clock cover when we need it, and we've been referred to the Shooting Star CHASE hospice in Guildford. Now we'll just take life one day at a time.

For the moment Adam is reasonably well in himself; he is comfortable and has even been back playing on the xbox a little -- something he'd shown very little interest in for many many weeks. Simply being home has been a huge fillip for him. He has a whole list of things he wants to do, places he wants to go, and things he wants to buy. Whether he's well enough to do any of them on any given day is another matter though. His fluid retention has resolved -- which two weeks ago we had seriously doubted it would, suggesting the immediate cause, at least in part, was a side-effect of the medications he'd been on.

So here we are. And it's turned out to be of no consequence how long I have known it would come to this. It's mattered not how long I have spent trying to prepare myself for it. I was not, and am not, prepared. Nothing could have prepared me; for how difficult, and painful, and unfathomable, the reality is.

We are now going to deal with things privately, in our own way. I'm not intending to update regularly, either here or elsewhere, it's just not me. Instead I will post as and when I feel I have something to say. In the meantime please keep my little boy, and his bigger brother and sister, in your thoughts and in your prayers.

More problems ...

Made it safely home with Jake & Jessica. Now got to decide when to fly back out again — probably be when I have just started getting over the jet-lag!

For a few days there's been a noticeable 'stutter' in Adam's breathing. When he exhales it's not a continuous motion, but rather he stops part way through and then resumes. I'd asked him about it a day or so ago and he said he was fine, as he does. When I continued to ask him questions such as 'Does your chest feel tight at all when you breath in and out?' he became rather exasperated, as he does, and told me 'NO. I ALREADY TOLD YOU IT'S FINE. NOW STOP ASKING ME QUESTIONS!"

On Thursday night, after I'd left, he developed a cough, and Alison noticed his breathing was not quite normal. Of course I hadn't discussed anything with her (sorry Al) so she asked Adam all the same questions that I did, and got the same responses.

In clinic on Thursday morning Adam's O2 saturation was 94%, which isn't terrible but it is a little on the low side; this can be caused by the finger sensor not being left on long enough, or needing some slight readjustment. Oftentimes simply putting the sensor on a different digit is sufficient to elicit a higher reading. On Friday morning it was 94% again. When Dr Sholler listened to Adam's chest she could hear he was a little constricted, and so ordered a chest x-ray which took place shortly afterwards.

It turns out Adam has some fluid on both lungs. The cause is thought to be one of the medications he's on (dasatanib) as it's a known side-effect. Fluid retention probably also goes some way to explaining the weight gain that Adam's experienced (although I'm sure some of that is also real as he has been eating a little better since we've been stateside).

Of course it's not terrific news, but at the same time it's good that the x-ray showed up the problem, and that there's a likely cause. We've stopped dasatanib (and thalidomide — a different story, read on for that one) for the weekend, and Adam's had a diuretic to flush out excess fluid. Thalidomide we stopped because Adam developed hives on Thursday night after taking it. We've increased the gabapentin, and the immediate plan/hope is to restart everything early next week. Of course we don't know at this stage that the problem with Adam's lungs is definitely dasatanib — we will only be able to surmise that if it resolves now we've held it.

Going forward the plan/hope is that this new therapy combination will be having some positive impact on Adam's disease, and he can continue on it by managing the adverse side-effects as they arise and giving him breaks off-therapy when necessary. On Monday or Tuesday of next week we'll have some indication of whether or not Adam will be able to return home for a few weeks to continue therapy. Clearly a lot is going on right now, and the situation is always going to be somewhat fluid. But we're keeping our fingers crossed that he'll be able to come back to the UK for two or three weeks before flying out again for scans ...

Treatment stops, treatment starts again ...

So. It was a Thursday when I posted the last updated 'Treatment begins again …'. On Friday morning Adam woke with an excruciating burning pain in his upper back -- just below his right shoulder blade. We gave him a hefty dose of pain meds and as he slept I called his doctor, as this was clearly not one of the usual aches and pains Adam suffers from now. He'd actually started complaining about it the day before, but at that point we'd thought it was more of the same. But on Friday morning, both from how he described it and how it affected him, it clearly was not.

Fortunately, Dr Sholler was around on Friday; she said to see how he was when he woke up and if the problem persisted to take him up to clinic to be assessed. He woke after lunch and if anything the pain had worsened. He could no longer bear anything to touch his skin in that area, and when he moved the intense burning sensation would cause him to scream out in pain. It was a harrowing and horrifying sound; full-throated screams of pain, as if an imaginary hand was pressing scalding hot coals against Adam's back.

A second call to Dr Sholler and we got Adam in his pushchair and off to the hospital, shirtless, a blanket for warmth, strategically positioned so nothing was touching his back. At this point neither Alison nor I had any idea what was going on; this was new to us. When we got to clinic they were waiting for us to arrive, a quick set of vitals, and straight into an exam room. Ten minutes later Dr Sholler was on the scene to assess Adam. Verdict was neuropathy caused by the new medications -- most likely the Thalidomide even though it was only one week at the lowest dose, one-third the final target dose. Only option was to stop all therapy and wait for symptoms to abate. As well as the back pain, Adam was also experiencing numbness in the right side of his lip and chin.

We started Adam on gabapentin for ongoing neuropathic pain, and managed the immediate pain with opiates. The balance (as always) to be aggressive enough to keep Adam comfortable, but also for him to be awake and alert sufficiently often for us to get food and drink into him. As the weekend wore on Adam's pain subsided and the intervals between doses of pain medication widened. However, at the same time swelling appeared in Adam's lip, chin, and above his right eye. On one hand you know it's almost certainly all part of the same reaction. And on the other you cannot help but worry that this is something else -- something even more sinister.

By Monday Adam was sufficiently better that we restarted two of his targeted therapy drugs, Thalidomide we held off until Thursday. He's been back on the three-drug regimen (albeit still at the lowest dose of thalidomide) for 6 days now. There hasn't been another severe reaction yet, but at various times he has complained of numbness, the palms of his hands feeling hot, and his leg feeling 'weird'. I can only guess that the gabapentin is masking the worst of the neuropathy, but it still doesn't bode for the chances of Adam continuing long term on this drug, and I certainly can't see us dose escalating. We may need an alternative plan.

Jake & Jess flew out to Detroit last Tuesday by themselves, looked after by our friends at Delta Airlines. It's been great having them out here, although it's not been your typical Easter holiday vacation for the pair of them. We rented an out-of-season holiday house in Holland, Michigan next to Lake Macatawa where we've all been staying. It's a 45 minute drive to the hospital in Grand Rapids, but it's worked out pretty well for us so far. Tomorrow I am flying back home with them ready for the start of school next week, and I'll fly back out in a few days. Looking after Adam, making him comfortable, getting medications down him, ensuring that he drinks enough, getting him to eat regularly, is a full-time job. Day after day, it is, quite simply, relentless. But that's where we are, and that's how it is. It requires both of us to be able to do what we need to do, and so I'll be back out here as soon as I can. Except for parents who have been in this situation before us it's probably difficult to understand just how hard this all is. It probably even sounds a little pathetic requiring two of us in order to cope -- I can only say believe me, it's not.

We've been fortunate that there is a large aquatic centre ten minutes drive from where we're staying, complete with a 90° therapy pool. We've been in twice, the second time, on Saturday, Adam had an absolute blast. Jake and Jess came in too. We played with a beach ball -- throwing, pushing, heading -- and only got told off once for being a little too boisterous. It's been a long time since Adam has laughed and had so much fun. We'd probably been in the pool for in excess of half-an-hour, and there was only five minutes of the session left when Adam brought things to an abrupt end by deciding to perform a forward roll and getting water stuck up his nose. The main pool at the centre also has a splash zone with inflatables, a zip wire, and diving boards so after spending time in the therapy pool Jake & Jess have been going in there whilst Adam watches from the sidelines wrapped up in his towels.

On Sunday Adam ached all over; his back and both legs, shoulders. The after-effects of the previous day's exertions. He needs regular exercise, but gentle exercise, and so we will definitely keep on at the swimming, even though Adam might not always be so keen when he's not feeling as good as he was on Saturday. Sometimes he needs bullying into doing things, when his general malaise would rather he laid on the bed and watched his laptop. Sometimes he tells me he hates me, and calls me mean, but it's more than outweighed by the reward of seeing him in the pool and doing something positive.

As much as I hate to admit it, we are started to rack up some hefty medical expenses. With Adam's inpatient stay at the start of our trip, a monthly drugs bill of around $25,000, plus all the clinic visits, biopsies, tests, etc. I know that costs are escalating. So, if there are any runners out there looking for a cause, or people wanting to do something else to help Adam then please get in touch with the team at the NB Alliance -- http://www.childrenscancer.org.uk/contact.php.

Treatment begins again ...

Quite remarkably, given that Adam developed a potentially life-threatening infection on our first day in Grand Rapids, we are just finishing week one of his new treatment combination on the molecular-guided therapy trial that we've enrolled him on. Clearly we could have done without Klebsiella Pneumoniae rearing it's big, fat, ugly, head but to think we haven't lost a single day time-wise as a result is almost beyond belief.

With Craig doing his sterling work we got out of the hospital on the 15th with antibiotics and supplies to do Adam's infusions at home (or in our case Renucci House) until Tuesday night -- making a total course of 10 days IV ertapenem. His white blood cell and neutrophil counts were on the up, a good sign of his body's growing ability to fight the infection itself, though still someway short of where they ideally needed to be. And so began the daily routine; 7am antibiotics out of the fridge, 8am flush, 30-minute infusion, flush, heplock; 7pm antibiotics out the fridge, 8pm …

All went without a hitch; my first test in home nursing and I passed with flying colours. Although I must confess, after the best part of four years watching nurse after nurse pushing stuff into Adam's veins, the very first time I started applying pressure to the syringe it did feel just a little bit odd to be doing it myself.

We'd arranged to have Adam's blood counts rechecked on Monday, having given him a G-CSF shot on Saturday and skipped Sunday. As we'd hoped, his counts had continued to improve, and his neutrophils at 3,000 were now right where we wanted them to be. None of his repeat blood cultures had come back positive for infection. His sodium, potassium, albumin, and creatinine levels, which had been all over the place during the previous week as the stress of the infection took it's toll, were back within normal ranges. The whole situation was beginning to look brighter.

The last antibiotic went in on Tuesday evening and on Wednesday morning we took Adam up to clinic to have his port deaccessed -- blessed relief for the little boy who'd been accessed for 12 days straight except for a couple of hours between line changes. As Adam has a port now (as opposed to a hickman) he doesn't always have a line attached -- when he does that's referred to as being accessed. Otherwise he just has the port site on his side under the skin where the line into his vein is channeled up to. His movement is restricted when he's accessed, and he finds it difficult to sleep lying on his right side.

We saw Dr Sholler at clinic and she told us the tumour analysis was going well -- the genomics report should be available on Thursday with a view to resuming treatment on Friday.

We returned back to Renucci House, and after he'd had a couple of hours sleep during the course of Wednesday afternoon I checked Adam's temperature. He had been snuggled under the duvet -- we brought his own duvet and pillow out with us this time for added comfort -- and he felt a little hot. 38.6°. Shit. Or worse.

We don't generally panic any more, we've been doing this stuff far too long for that. But I can tell you -- this was worrisome. Having been warned that the infection Adam acquired was a particularly nasty one, having been told several times that it has a habit of coming back even after antibiotics, and having listened to the senior doctor on the ward saying he hoped Adam would recover, who wouldn't be worried? We pulled his duvet back and over the next 5 or 6 hours watched nervously as his temperature fluctuated around 38° -- 38.1°, 37.8°, 38.0°, 38.1°, 37.9°, 37.9°. Alison had packed the overnight suitcase, and we were all ready to make the call to be readmitted to the hospital. Another reading over 38.5° and that was it; back to the hospital, back on antibiotics, unable to start treatment on Friday -- and that was supposing the infection wasn't even back. If it was, if the 10 days of antibiotics and Adam's recovering immunity had failed to deal with it, what then? I decided I wasn't even going to bother going to bed. At 01:00 Adam's temperature fell to 37.4°, followed by 37.0° at 01:30, and 37.2° at 02:00. And at that point I breathed a massive sigh of relief and called it a night.

When Adam woke on Thursday his temperature was still normal, where it remained throughout the course of the morning and afternoon. The evening followed a similar pattern to the night before; temperature rising, though this time not quite as high, and for not quite as long. Whilst staying vigilant, and checking regularly, with the benefit of the previous 24 hours we weren't quite as worried this time. On Friday morning Adam's temperature was again perfectly normal, and we've not had a repeat episode since. I have no idea what the cause was, I'm just thankful it wasn't worse, and it didn't lead to anything.

On Friday we met Dr Sholler to discuss the new treatment plan. Adam needed a blood transfusion, and it turned into a long day in clinic as a hastily arranged electrocardiograph and echocardiogram were required to monitor potential side-effects of the new targeted combination therapy; thalidomide, dasatanib, and pravastatin. These drugs, amongst others, scored highly on Adam's genomics report and this particular combination was then selected by a panel of oncologists based on Adam's individual circumstances, history, etc.

Each cycle of treatment consists of 28 consecutive days of these three oral drugs, and the first cycle must be completed at the study hospital. Which means Adam will be out in Grand Rapids until mid to late April at least. We always expected this, the only variables being whether Adam was going to be well enough to even enrol on the study in the first place, and after that whether each cycle would be 21, or 28, days in duration. The big shock came when we found out the cost; thalidomide in particular is crazy expensive. The cost of a 28-day supply of the drugs is around $25,000. We are ever thankful to have the NB Alliance supporting us, and Adam's Appeal funds to give Adam the opportunity to hopefully benefit from this new trial.

Adam has tolerated everything well so far; thalidomide has a sedative effect and so is taken just before bedtime, apart from that there are no other restrictions. He's been suffering from various aches and pains, including a recurrent and persistent one in his lower back, but we are managing things reasonably well. We have to balance effective pain relief against the inevitable consequence that he will sleep and therefore be unable to eat or drink anything. Eating in particular remains an issue, but he's maintaining his weight at the moment and realistically that is our goal at this stage.

We discussed physical therapy with Dr Sholler, to try and improve Adam's muscle strength, mobility, etc. She suggested aqua therapy, and with Adam being keen we went along to a pool on Wednesday to give it a go. Alison and I came out with the same very mixed emotions. Adam, bless him, tried his absolute hardest, and he was so keen to get in the water. It's been a long time since we've seen him like that -- he even tried swimming under water to play trick on his new therapist. Unfortunately the pool was just too cold, colder than it was supposed to be; for a little boy with zero body fat and incapable of vigorous movement he was shivering within minutes and we had to get out shortly thereafter. But we've not given up. Adam's is happy to try again so we are in the process of finding a different, warmer, pool that we can go to. Providing it works out, and his immunity remains high enough, this will hopefully become a regular activity.

With the Easter holidays here, Jake and Jess are going to fly out next week to be with us. They're being escorted to Heathrow by grandparents and then flying out by themselves. Either Alison or myself will be there to meet them at Detroit airport when they land. We've rented a place by Lake Michigan, and just hope Adam stays out of the hospital and well enough that we can make the most of the time we'll all have together. They are amazing children my eldest two, getting on with their lives as they have in spite of everything that has gone on with Adam over the years. I do miss them though. Jessica was just finishing infant school when Adam was diagnosed; she'll shortly be starting her final term at junior school. It sometimes feels like her growing up has completely passed me by.

This is a photo of Adam and Jessica taken just a few weeks before he was diagnosed in 2009 …

A Week In The Life: Infections, Scans, Biopsies, Home Infusions ….

Adam is still in the hospital. This is his eighth day of incarceration, each one costing a small fortune. He has remained afebrile since last Friday, and repeat blood cultures continue to come back negative for ESBL Klebsiella Pneumoniae bacteria. This is, of course, great news, but we regard it with caution. The infection he acquired is a particularly nasty one that can return even after treatment with antibiotics, and negative blood cultures do not necessary mean there is no bacteria remaining anywhere in Adam's body.

The name Klebsiella Pneumoniae suggests Adam has pneumonia, but he does not. He has bacteremia - the bacteria found its way into his bloodstream which is what makes it so dangerous, particularly in an immunocompromised patients such as Adam. All that said, things are heading in the right direction; no fevers, negative blood cultures, and Adam's white blood cell count (a measure of his body's ability to fight infections itself) has risen steadily with each passing day. Today it's 1.5, we want it to get to around 5. However, 1.5 is a lot better than the 0.03 that it was when he was first admitted.

Looking back on the past week we actually got very lucky. Adam spiked a temperature on our first morning in Michigan, it could easily have been the day before at 30,000 ft over the middle of the Atlantic; the bacteria infection clearly responded to the broad-spectrum antibiotics which isn't always the case; and we had positive cultures and sensitivities back from the microbiology lab that allowed us to change to a targeted antibiotic within two days of admission to the hospital.

Such is the fine line that we often walk in the world of paediatric oncology …

One of the things I love about Dr Sholler is that she 'gets it' as far as what parents go through on this terrible journey. She didn't encourage us to come back to Grand Rapids, and she didn't discourage us either. She made it clear Adam would be welcomed back, but it was our decision to do what we felt was right. A few weeks ago Adam was in no position to come back out here, we wouldn't have even contemplated trying given where he was at in terms of pain and feeling generally awful. But then we managed to get on top of things, Adam became far more settled, and coming back out went from feeling like the wrong thing to being the right thing.

The plan for our visit was FDG-PET/CT on Monday, with bone marrow and lymph-node biopsy Tuesday for enrolment on the new molecular-guided therapy trial that opened here only last week. Ordinarily an infection of any sort will scupper any and all plans for therapy, but the team here got Adam prepared for Monday's scan and it went ahead as planned. He was still pretty wiped out, but apart from having to consume a contrast drink the scan doesn't require much else from Adam himself. Unsurprisingly he slept through the entirety of it.

Scan results showed progression. Of course that's horrible news, but it wasn't anything we weren't expecting. It says something when you're pleased that the scan isn't as bad as you thought it would be. There was an interval increase in intensity of the skeletal uptake, growth in the lymph nodes, all of which are now at least partially calcified, but no new areas of disease. It wasn't catastrophic, it wasn't 'get-back-on-a-plane-and-return-home-again' bad.

And so to Tuesday. If the PET/CT scan was looking shaky at one point, the prospect of bone marrow biopsies, and a long needle lymph node biopsy, on a child with an ESBL infection and zero neutrophils, might be expected to be a complete non-starter. The idea of enrolling on a clinical trial whilst getting treated as an inpatient equally so. But things are not quite the same with Dr Sholler. There are rules for sure, you cannot go on study with an active infection, period. But there is also flexibility, and a consideration of the big picture. There are competing risks, big and small, some more immediate that might warrant delay and others less immediate but that would increase with the passage of time; some lines that can't be crossed, and other boundaries that can pushed a little. How did we feel about going ahead despite the current situation, after all Adam was on strong antibiotics? Delaying biopsies beyond Tuesday/Wednesday would mean the analysis reports coming back a full week later, meaning another week before Adam could begin treatment even if he were well enough to sooner. Provided blood cultures taken Sunday morning remained negative 48-hours later on Tuesday morning (which they did) Adam would be eligible for the trial. For me it was a simple decision. The bigger question mark was whether the interventional radiologist would be prepared to perform the procedure given Adam's condition and blood counts; we left Dr Sholler to sort that one out. We had our answer when, during Monday evening, the nurse came in to say Adam would be getting platelets overnight in readiness for the following day.

Monday night was one of those horrible hospital nights. Machines beeping, interruptions, platelet transfusion, monitoring vitals, blood draw, monitoring vitals again; we didn't really get any settled sleep until 4am. And of course on the day Adam had to be nil-by-mouth he woke up complaining that he was hungry - something I'd not heard him say for weeks and weeks. From telling him he's got to eat and at times practically force feeding him, I'm now saying he can't have anything to eat until mid-afternoon! Well, I didn't actually say that, of course, I just told him he couldn't eat yet for a while. If you repeat that enough times over and over eventually you get to a point where you can say 'another half-an-hour and you can have something to eat and drink'.

Adam was as grumpy as grumpy can be on Tuesday. He just gave off this look that said 'You'd better have a very good reason for talking to me … or don't.' Not many people did. He lacked sleep. He was hungry. He was apprehensive about what was coming, he knows how it feels afterwards. If he wants to be grumpy under such circumstances I figure that's his prerogative. The anaesthetist was very approachable and listened to us explain Adam's post-anaesthetic apoplexy after getting propofol. He was more than happy to use ketamine in the first instance, and only resort to propofol if Adam started to move - clearly being totally still is rather important whilst undergoing a needle biopsy that goes in through the back, down past the kidney and into a lymph node in the pelvic region. Everything went to plan, the team got what they needed and Adam returned to the recovery area in a spaced-out ketamine-induced sleep. Only a small amount of propofol was required, and thankfully Adam woke up slowly and without adverse effects (ketamine can cause waking nightmares). As an added bonus he took longer to wake up than usual, which was also helpful as he's not allowed anything to eat or drink for another two hours after the procedure - in case he suffers an internal bleed that requires emergency surgical intervention.

Tuesday night was another rubbish night, but for a different reason. All the sleep Adam had during the day meant he wasn't able to settle down at his normal time. So on Wednesday he was grumpy as grumpy can be. Again. From lack of sleep, and a very sore back complete with three fresh new holes in it.

Since then Adam has gradually improved; the pain in his back from the biopsy sites has receded, he's had a couple of very good night's sleep, and he's been eating and drinking alright too. We don't have anything planned now in terms of treatments or procedures until after the analysis reports on Adam's biopsies come back next week. Which hopefully means we have a full week to get clear of this infection completely. In which case, rather miraculously, we will not have lost any time as a consequence of Klebsiella Pneumoniae.

This afternoon we've been discharged back to the Renucci Hospitality House to continue Adam's antibiotic treatment as a home care patient. Tonight we have a nurse coming to us, to train me how to manage Adam's line and administer the twice daily infusions. Each dose is provided in a separate self-infusing portable pump that we will keep in a special fridge back at Renucci. We have a plan for next week in terms of going into clinic to check counts, have blood taken for repeat cultures, etc. But if this works out we're done with being an inpatient; it'll be me infusing, flushing and hep-locking for the next four days. How cool is that? Adam's pain remains under control with the fentanyl patches we're using. It's our fervent hope it remains so, and we get through to the resumption of treatment without further setbacks. We are also realistic enough to know that with this disease not only does it not always work out that way, it doesn't often work out that way …

It wouldn't be right for me to finish this update with saying something about the care Adam has received in the week that he's been inpatient here at Helen DeVos Children's Hospital. I know I speak very highly of Dr Sholler, but across the board the doctors and nurses that have been looking after our little boy have been exemplary. There are a few annoying rules, but I can hardly blame the individuals that have to abide by them can I? And even then, we've been listened to and our wishes accommodated as much as has been possible. Nobody has broken the rules for us, but they may have been bent a little once or twice for Adam's benefit. And to me that's the only consideration. Always. It's not about me, or Alison. It's about making adjustments here or there, sometimes seemingly trivial or minor, that make Adam's life just that bit more comfortable. But never anything that exposes him to additional, or unnecessary, risks. And finally, extra special thanks to Craig … without whose efforts we'd still be in room 903 in the hospital, instead of room 306 in the hospitality house.

Not great news ...

Adam has a multi-antibiotic resistant (ESBL) form of Klebsiella Pneumoniae. We've changed to a completely different type of antibiotic that bacteria from Adam's blood culture displayed sensitivity to in the lab. Although the broad spectrum antibiotic he was on before has clearly had an immediate beneficial effect, if we continued on this path the bacteria would just up-regulate its resistance gene to overcome it.

We are now under isolation control, and had a visit from the infectious diseases team earlier this morning. All staff entering Adam's room must be gloved and gowned, whilst Alison and I are not allowed to enter the communal areas of the ward. Moreover, Adam will need to be gowned and isolated whilst in the hospital for the next six months to a year. Now we know Adam prefers to have his own room whenever possible, but as Alison told him earlier this is a rather extreme way to go about it.

Adam's immune system remains very low; he is getting daily shots of G-CSF and it will be very important to see his white blood cell count improve over the coming days in order for him to fight off this infection as quickly as possible. We are still on track for a PET/CT scan tomorrow, but beyond that we don't yet know what impact this is going to have in terms of treatment. My instinct is a lot, but we'll see. It's anticipated that antibiotics will continue for the next ten to fourteen days. At present Adam remains reasonably well and has been afebrile since Friday evening, which is something at least.