Saturday, 29 December 2012

It's just too cruel ...

The wound that they cut out of Adam's bottom extends so far that it's impossible to dress completely without also covering his anus, except for when he was asleep and they could push and pull whatever they wanted however they wanted. So now when Adam goes to the toilet he soils the inside of the dressing, which subsequently either falls out when he wipes his bottom, or has to be removed anyway.

Adam is on IV antibiotics, a near certain side-effect of which is … diarrhoea.

Adam has now been to the toilet multiple times since his dressing was changed by the nurse at home yesterday. And every time he's had to go through the trauma of having the dressing completely removed, and his gaping wound cleaned, packed, and dressed again.

And of course every time all this happens the risk of infection grows.

It's just too cruel ...

Friday, 28 December 2012

Crikey ...

Have just had my first sight of Adam's abscess wound. And so has Adam himself. Oh my goodness. He insisted on being passed a mirror to have a look at what the nurse, who had come to change his dressing, was doing down there. At first he screamed a bit, and then he insisted his Mum have a look too.

"That's not what they said they were going to do." he cried.

It certainly is not.

Clean it out, use something akin to a cotton swab to manipulate and stretch the wound entrance, and make it roughly double it's original size; about the width of the top of a pencil.

Instead he's had a lump taken out slightly bigger in diameter than a five pence piece, and dome shaped; it resembles a mini bomb crater on the inside of his bottom. From there is a channel (presumably the best part of 3cm deep) that looks about the width of a drinking straw into which they packed layers of gauze whilst he was under general anaesthetic. Layers of gauze that the nurse has just had to extract with a pair of tongs whilst Adam was fully awake and able to feel everything.

I said it wasn't going to be pleasant. Well that was an understatement. It's done now though, and hopefully (if the new dressing remains intact) he won't need to have it done again for another couple of days. The Community Nurse who re-did it today also offered to come out on Sunday, and Adam's happy with that plan. Whilst I'm on the subject; when it looked like Adam would be on IV antibiotics over Christmas, another member of the team offered to drive to our house on Christmas morning to administer them. We really are very thankful Adam has such a fantastic team of Community Nurses to look after him!


My poor little boy. The perianal abscess that was cleaned out and packed in surgery this morning measured a full 3cm in depth. Much bigger than I expected, and as a consequence of the size a much more invasive procedure than we'd anticipated. He is sore, very sore. He has a bloody weeping mess oozing from the wound on the inner side of his bottom. He's on 48 hours of two different IV antibiotics plus GCSF to attempt to prevent any sepsis from the open wound. Chemo that should have been given this afternoon has been delayed to Monday, provided Adam remains free of infection. He will need his dressing changed at various intervals, a process that I can't imagine being anything other than deeply unpleasant. But hopefully, fingers crossed, he'll be rid of this thing for good now. At least by going in all the way they have minimised the chance of it reforming … although unfortunately there's no way to eradicate such a possibility altogether. Let's hope for a speedy, and infection-free, recovery.

Wednesday, 26 December 2012

Christmas ...

Christmas was good. We were all at home, together, as it should be. Adam had a very disturbed Christmas Eve night, and Alison had taken to sleeping on his bedroom floor. And during Christmas Day he was in varying amounts of discomfort at various points throughout the day. Once he was set in a comfortable position, however, generally things were fine until it came time to move again. He needed carrying to and from the toilet, and between rooms when he wanted to play elsewhere. But play he did; Skylanders, Lego Lord of the Rings, Uno Roboto (which our kids have been having tremendous fun with), and general waving of assorted Power Rangers and Ben 10 weaponry from the relative comfort of his vertical position on the sofa.

During the course of the late morning we got a phone call from the Paediatric Registrar at Epsom to say St George's Hospital had called, they had found a cubicle for Adam, and could we take him up there now to be examined. An offer that I politely declined. Tomorrow we'll go anywhere you need us to be, but today is Christmas Day and we're not going anywhere until Adam's bedtime unless something happens to make it absolutely necessary.

We planned to eat a cooked meal in the evening, and whilst the rest of us ate at the dining table Adam remained in the lounge waking up from his late afternoon nap. When he did start tucking in (I use the term loosely, in fact he was being fork fed as usual by Alison and I), his dinner was interrupted by what Adam first described as him having pooped his pants. On closer inspection, however, it transpired that his perianal abscess had burst through the skin externally and was oozing puss. A small clean up operation followed, and we shoved some gauze up there and got Adam back to his turkey.

Around 10pm, after giving him his GCSF shot at home, we took him up to Casey Ward at Epsom General, as agreed, to begin his antibiotics. With the abscess having burst Adam was slightly more comfortable; the intense build up of pressure that had been steadily increasing over previous days had been released.

On Boxing Day St George's informed Epsom that they would see Adam later that afternoon. So, after getting blood and platelet transfusions I took him up to be reviewed by the surgical registrar. Expecting to get there and start his afternoon course of antibiotics I was still sat waiting, having been seen by nobody and with no antibiotics having been written up by a doctor, nearly two hours later. When the surgeon did come in and examine Adam his view was that the abscess had drained well but was not entirely free of puss. Coupled with an exit wound that was too small, the overwhelming likelihood if left was that the wound would heal and the abscess subsequently reform. The necessary action was to put Adam under anaesthetic, clean out the abscess properly (during which it could also be properly examined to see it's full extent), and widen the exit site to roughly double it's current size. It would then be packed with gauze, and once Adam was back home he'd need to have regular salt baths to enable the abscess to completely drain and heal.

The evening surgery list was light, so I was told, they could do it that night. I wasn't expecting anything other than a review, nobody had suggested they might want us to stay. After some deliberation, it was decided I'd take Adam back home, we'd give him his GCSF shot, Alison would collect his medications and overnight things from Epsom, and then drive him back. He'd be back at St George's as soon after 8pm as we could get him there. He'd miss tea and not having anything more to drink.

We rushed around and Adam was back just after 8.30pm. At which time Alison was informed that an emergency has come in, there was only one surgical team operating that evening, and there so no longer a slot for Adam; the new plan being to schedule him for the morning. I was fuming. Absolutely fuming. If I'd been told the actual situation instead of 'the surgery list looks light' I would have made a different decision. And, as I've subsequent come to realise, being operated on in the evening on Boxing Day is never the best; a tired team, lack of cover, make any complications potentially more serious.

So thanks to my decision, led by the surgical registrar, Adam was stuck at St George's having not eaten anything since lunch, and not drunk anything since mid-afternoon. Everything was shut, and there's no access to food within the ward itself (not that you'd necessary want your child to eat it if there were). I'd been duped by medical care that was only interested in what was on Adam's backside, not by the overall picture of what is going on with him. We care about his weight-loss, that he has to make counts in order to get the IVs that are due at 4pm on Thursday at The Royal Marsden. We care about him being able to have some modicum of a life beyond the four walls of a hospital room.

So Adam is now scheduled for the morning list. If he's not gone down by 9am he won't be going because we're not jeopardising his Marsden visit to get Zometa and Vinblastine. And we also won't be going from St George's straight back to Epsom so he can get the next dose of the 4 IV antibiotics he's on, that take a total of between 2 and 3 hours to infuse (he doesn't actually get all 4 every 8 hours). If they want him to continue antibiotics as a precaution against the infection getting into his bloodstream, they can come up with a combination of orals and/or once-a-day IV pushes that maximises his time at home, and minimises his hospital time.

So there.

Monday, 24 December 2012

Christmas Eve III

Christmas Eve evening turned out to be a very pleasant affair. The kids had a little present each to open, which they ended up playing with for a good couple of hours. Powerful little magnetic balls that you can make into cubes, necklaces, bracelets, rings and, in Adam's case, The Leaning Tower of Pisa. Small is the new big.

Truth be told I had a delivery a few weeks ago, and it was only after I opened the parcel that I realised it was something that I'd ordered for Christmas … last Christmas! I don't think I opted for "Next Day Delivery", but even so! Anyway they were only a small something so I put them to one side with a view to having them as little gifts for the kids to open at the dinner table on Christmas Eve. But it's been a while since Adam sat at the dinner table so it was a variation on that theme, but in any case they proved to be a hit so who cares.

We then settled down to watch the final episode of "Merlin" with the kids (Jake and Jess watch it every week), and finally they deposited their stockings in the appointed places and went off to bed. Jessica was soon asleep, Adam whose body clock is still not functional at optimal efficiency since returning from the States, stayed up late again after having a tired spell between 5pm and 7pm, and Jacob will still be awake into the small hours. That's just what he does at this particular time of year.

And so for the third and final time today I say to you …


Christmas Eve II

Upstairs. So the tooth is ok. Just chipped a bit off a molar that should be in the process of falling out anyway. Resulting in pressure on gums when chewing thus causing the ache. Soft food, chewing on the other side, and the passage of time hardening the gum is what's required. Other than that nothing sinister lurking around.

Downstairs. So they wanted him to go to St George's for a surgical review, but there was no cubicle available on any ward. St George's then wanted him to go to King's, which is even further away. The Royal Marsden intervened and said it was all unnecessary as they wouldn't actually DO anything today anyway (esp. as his neutrophils are only 0.5) and so to start on a combination of four different antibiotics (as abscesses are notoriously difficult to treat); Vancomycin, Gentamicin, Tazocin, and Metronidazole, meaning 2-3 hours of IV infusions every 8 hours.

I said I couldn't do that to him. Not after everything else. Not on Christmas Eve. I'm not sure who's heart it would have broken more, his or mine.

So we're back at home now and going back for 10pm tomorrow night to start IVs as inpatient providing things are no better (which they won't be). After Boxing Day he'll sleep at hospital to get antibiotics last thing at night and first thing in the morning, and be home from around 9am to 9pm with the Community Nurse team covering the afternoon course.

One more Christmas Eve chore to do for Alison … a trip to the Royal Marsden to fetch a 3-day course of GCSF injections to boost Adam's white blood count before his next dose of chemo is due on Thursday.

Happy Christmas!

Christmas Eve ...

An emergency dental appointment at 2.30 this afternoon to assess Adam's aching tooth, followed by a trip to St George's Hospital in Tooting for a surgical review of his anus - the lump upon which is bigger and more inflamed today. Options are immediate surgical intervention with all that entails, switch to IV antibiotics with all that entails, or continue oral antibiotics until after Christmas. They may also want a CT scan of what's now almost certainly what we had hoped it wasn't; an abscess.

Happy Christmas!

Sunday, 23 December 2012

Christmas ...

Morning. For those who don't already know, Adam is home. He flew out of Detroit on Thursday evening and arrived home Friday afternoon. He's got numerous issues; not eating, toothache, a cyst/abscess on his bottom that is giving him a lot of pain, further pain behind his knees (probably a result of walking through Detroit Airport) that means he can barely stand up. But he's home. We've got the nurse coming out to take bloods on Monday and I expect he'll need blood and/or platelets, but unless he becomes febrile or otherwise symptomatic of infection he will be at home, and in his own bed, on Christmas morning.

The kids have been playing together a lot the last couple of days. And last night the Christmas Tree and decorations finally made an appearance from the loft. Last minute preparations continue, as it was impossible to make plans until we found out on Monday that Adam's latest scan was stable and he would be returning home. And even then nothing was certain, so I refused to say anything publicly, until my little boy was actually on the plane, and nearer the UK than USA.

We're predominantly happy house; despite everything we are among the lucky ones this Christmas. Our thoughts are, and will be, with families we know and have met that are experiencing the most difficult of times right now.

Wishing you all a happy and healthy Christmas season. Nick, Alison, Jake, Jess, and Adamski. x

Friday, 7 December 2012

Unstable ...

Despite Adam's scan on Monday being classed as 'stable', Adam himself is anything but. His blood and urine markers from later the same day were elevated, the latter the highest it's ever been. Coupled with renewed aches/pains that now include legs, shoulder, and back, the signs aren't good.

External beam radiotherapy has been mentioned, but the pains Adam is experiencing now are not in the same areas as those he had before; consequently there's no obvious rationale for where to target.

I am still intending to return home next Tuesday as planned, but after that we are no longer sure of anything. To the extent that we may actually end up doing a repeat PET scan as early as next week to see if that shows any further changes. At least we are in the best place, a place where everything that needs to be done gets done with maximum speed and efficiency. It all has to be paid for, of course, out of our appeal funds … it's just a shame it's 3,800 miles away from home is all.

Wednesday, 5 December 2012

Good news but there'll be no rejoicing …

I sat in the scan room with Adam whilst he was having his PET/CT and thought about Christmas for a while. Not for very long, because the actual scan itself only takes just over 20 minutes! Other than the fact I would hate to disappoint my children, I realised I'm not at all bothered where we are, or how it turns out. I'm now (re-)booked to fly home on Tuesday 11th. Though we're still not completely sure whether it'll be to try and hastily organise Christmas at home for Alison and Adam to join us at some later date, or whether it'll be to organise Jake and Jessica to fly out back out with me once school breaks up for the holidays. I thought last year was crazy enough preparing for Christmas in Greifswald …

Adam's scan is stable. There is no significant change and no new areas of disease. It's good news, and yesterday was a good day; Adam took his Beyblades into clinic and for the first time during this visit he actually spent some time in the playroom. We had our consult with Dr Sholler and afterwards Adam started on a second cycle of his current combination therapy.

Then today his right leg, which had been aching a bit for the past couple of days, got much worse. He is now once again immobile and unable to move without severe discomfort. What's causing it? We don't know. Could be anything, or everything. He's back on pain relief, but to be honest it's a low dose and doesn't seem to be doing much for him, so we will likely need to review things tomorrow.

With Adam's scan being stable, getting home for Christmas really depends on two things now. Firstly, Adam being well enough to travel; right now he could fly, but he'd need to be made as comfortable as possible considering it's an 8-hour flight, and we certainly wouldn't want him getting any worse. Secondly, The Royal Marsden agreeing to oversee Adam's new treatment regimen, and in particular administering the once-a-week IV chemotherapy component of it. Hopefully they will remain supportive, but we don't yet know … as we've not yet asked (but will be very soon!).

Tomorrow evening there's a Children's Christmas Party at the Van Andel Museum, at which the hospital staff will perform an original play written by one of the Doctors; it's an annual event that's been running for many years apparently. Hopefully Adam will be well enough to go along and enjoy himself. I have threatened to video proceedings and post them on YouTube, although for some reason this idea didn't elicit an overly enthusiastic response from the nursing staff. One of them, cast in the role of a baddie, has promised to deliver his lines Vinnie Jones style, which ought to be quite amusing.

One final thing. If, by chance, anybody has any contacts with Delta/KLM … we did really well getting out here, but it's a night flight back from Detroit to London and business class (which means Adam will (1) be comfortable, and (2) get some proper sleep) is crazy expensive right now. The alternative is we'll just have to keep him drugged up. Going forward we're probably looking at coming out more often as well, so any assistance we can get in keeping costs down is going to be of significant benefit.

Wednesday, 28 November 2012

Settled ...

Adam continues to improve little by little. This weekend he returned to playing online with Ryan & Jake, which he's not done since shortly after his birthday. It's another indication that's he feeling better in himself. He's got zero stamina when it comes to any form of exercise; a walk up the corridor from our room to the lift and he's worn out. But then it's not just the last couple of weeks, but nigh on a month before that in the UK when he was almost bedridden. It will take a long time for any level of fitness to return. He's still got no appetite, though is eating more simply because he's putting up less resistance when being spoon-fed at present. Since August he's lost five kilos, a lot for a 9-year-old … and it shows. He's had no aches or pains, and from today is no longer on any form of pain medication whatsoever - so we'll see how that works out in the coming days.

We have repeat bone marrow biopsies on Thursday, and PET/CT scan next Monday. The results will determine our next course of action, and in particular whether or not we'll be able to return home this year. Whatever the outcome we'll have to start making our plans for the festive season. Last year the five of us spent Christmas out in Greifswald, if this year we have to spend it out in Grand Rapids then so be it. We'll sort things out as best we're able. Obviously fingers-crossed for stable scans or better, and agreement from the Royal Marsden that we can continue Adam's new treatment regime back in the UK under their guidance. At the moment, however, we're not really thinking any further forward than tomorrow, and whether Adam will need blood and platelets before his bone marrow procedure on Thursday.

Friday, 23 November 2012

Improvement ...

Adam has been doing okay. This week has felt a little weird because it's been less full-on than the past two weeks when we were in clinic almost all day, every day. Yesterday was Thanksgiving, one of the biggest days of the year out here. A very kind family and their friends gave up their day to come to the Renucci Hospitality House and cook a huge (and I mean enormous) Thankgiving dinner for the people staying here. Two years ago the family found themselves at Renucci over Thanksgiving whilst their daughter was being treated in the hospital, so this year they wanted to return the kindness that was shown to them. There is a seemingly endless generosity of spirit that surrounds this place, and long may it continue. As reserved Brits abroad we may not be quite as effusive as some of our fellow guests, but the warmth and generosity of people certainly isn't lost on us.

For the last few days Adam has had none of the aches and pains that have so troubled him these past weeks. He's been a bit more active each day, and walking a little further a little more often, albeit with plenty of encouragement from us (or nagging as Adam would describe it to you). That has brought it's own aches, but normal ones that come with exercise after inactivity. He's not had anything approaching a fever and apart from needing to get platelets regularly now he's in reasonable shape … considering.

Our most immediate problem is Adam's eating. He has no appetite whatsoever. Through the events of the past five or six weeks he's lost a lot of weight, and our first goal is to maintain him where he is now. I can tell you that getting a child with zero appetite to eat regularly is both a relentless and thankless task. But we are doing what we can, including a daily nutritional supplement. Hopefully, as Adam becomes more active some sort of appetite will eventually return, but with the different drugs he's on right now it's completely impossible to predict. What we need most of all is for those aches, pains and fevers that disappeared long enough to enable us to fly here, only to reappear a week later, not to come back anytime soon.

I regularly post photos on Adam's Facebook and Twitter pages, but not too many on here … so here are a few from the time we've been out here. They are in time order, the latter ones taken yesterday when we were out for a short Thanksgiving stroll.

IMG 2201 1

IMG 2213 1

IMG 2231 1

IMG 2240 1

IMG 2249 1

IMG 2258 1

We've been joined in Michigan by a family from Spain that we first met in Greifswald last year. Alejandro is a five year-old boy with relapsed neuroblastoma and his parents have brought him here to seek treatment with Dr Sholler. They arrived last week and by some coincidence ended up in the room next door to us at Renucci. Last night Ale and Adam played together on the Nintendo Wii, it was by far the most active Adam has been in a fortnight. Little Ale is having a tough time right now … we really hope things start to improve soon now Dr Sholler is on the case. And with a bit of luck I'm sure there will be opportunities for more games playing in the days ahead.

Monday, 19 November 2012

Progress ...

Today Adam walked from the lounge on the ground floor of Renucci Hospitality House to the lift, and from the lift to our room on the 4th floor. The correct term for this is 'progress'.

Bloods were ok today; neutrophils have dropped back a lot to what we'd considered normal for Adam, but Haemoglobin and Platelets held steady which was a little surprising (the doc had even pre-ordered Platelets in expectation). Having gone to clinic thinking we'd get a platelet transfusion at least we were in, bloods done, port accessed, got chemo, port de-accessed, and out again in 90 minutes. The correct term for this is 'progress'.

The correct term for how we're feeling right now is … pleased … caveated with not getting carried away.

Thursday, 15 November 2012

A Tough Time …

We were in clinic slightly after 8am on Monday, a long and difficult day ahead, with Adam's new port placement scheduled for early afternoon. We'd had a reasonable weekend, Adam's mobility problems preventing us getting out and doing anything, but that aside he was in good spirits. As well as the surgery it was day one of the new treatment combination we're trying. It's a twenty-one day cycle, and we rescan the following week - which means we're out here until the start of December at least. We could have enrolled Adam on a different trial that might have got him back home sooner, but it's our decision to go this route.

We were met in clinic by our nurse, Julie, who gave us a run through of the schedule. Adam was nil-by-mouth in preparation for the portacath insertion. In the morning he was due to get a full blood count, Benadryl, Tylenol, platelet transfusion, repeat blood count, Zometa (bone strengthener to help with Adam's disease/pain) and then downstairs for anaesthesia and surgery. The nurse got a cannula (or an IV as they're called here) into Adam's arm (the third he's had since we arrived) and took bloods. The surgeon wanted his platelets to be above 100 for the procedure. We skipped Tylenol, and knowing what we know now we'd have skipped Benadryl too, but we didn't.

We got settled into 'Infusion Services' and our appointed nurse there set everything up. Almost as soon as the Benadryl had started going in, Adam began complaining of burning pains up his right arm, or more specifically in the vein running up it. Next the platelets went up at 250ml/h; the pain intensified, Adam begged him Mum to turn the machine off "Pretty, pretty please, Mum. Turn it off, turn it off." he sobbed. The problem is you can't turn platelets off, they clot. Once they're up, they've got to go in. And in any case we were on a schedule to get the port fitted; with nothing but peripheral IV access if we'd stopped then we'd only have wound up in the same situation the following day. Or so we thought at the time, with hindsight we know it wasn't the platelets themselves that were the problem, nor getting an infusion via the cannula per se. It was the sodding Benadryl that we never really needed that caused all the trouble. With Adam becoming more and more distraught we were moved out of the open curtained area and into a side room. Eventually the Benadryl kicked in to some positive effect and Adam, exhausted from the pain, pleading and distress, drifted off to sleep.

The blood count taken when we first arrived in clinic had Adam's Hb at 7.8, Platelets 68, WBC 3.01. The nurse arrived to take blood for a repeat count, to verify the platelets were high enough for surgery. Trying to get the peripheral IV access to bleed back was fun. The nurse pulling back, the technician squeezing Adam's arm, Adam screaming at her to get off because his arm was still hurting like hell. And no blood coming out. Eventually after several minutes and a number of repeat performances they did manage to get a couple of millilitres, enough for the blood count they needed.

We'd already decided there wouldn't be anything else going through the peripheral line except Adam's anaesthetic. Zometa could wait until the following day, when Adam's port would be in and accessed. Adam wanted to be sure his cannula would be out, and his port accessed, when he woke up following surgery. We assured him that's how it would be.

Julie came in. Adam's blood counts had come back. His Hb had dropped to 6.8, platelets had fallen to 56, and WBC had risen to 4.0. For those not familiar; Hb is haemoglobin the red blood cells that carry oxygen round the body, platelets are responsible for clotting, and WBC (White Blood Cells) is the immune system and infection fighting cells. This was not the expected result of a platelet transfusion. Obviously with all the messing around the blood sample from the peripheral IV had been spoiled. But they'd still need an accurate record of the true platelet count. So the phlebotomist had been paged and was on her way to take blood from Adam's other arm, as the clock was ticking to meet our slot for surgery. The phlebotomist is the super-fast blood count person. She just comes in, whacks on a tourniquet, finds a vein, sticks a needle into it, draws some blood into a vial, and is on her way again, job done. Not what Adam is used to, but he's quite good with most things provided he's given a little time to process what needs to happen and retains at least some control over how to achieve it. So a few minutes later he was telling said phlebotomist "When I say I'm ready I'll close my eyes, you count 1, 2, 3, and then stick the needle in." And that's how it was. And we duly waited for the results.

Julie came in. Adam's blood counts had come back. Hb and platelets the same as before, WBC further increased to 4.65. He'd now require an immediate second platelet transfusion in order to get his port put in, and was also now in need of a blood transfusion! What can you do? It's no use getting up and saying enough is enough. This wasn't optional. So we waited for the second bag of platelets. This time A-positive for A-positive patient, not that it should matter (previous was A-negative which can be given to A-positive patient, but not the other way round). Up they went and the machine which had been gently infusing hydration at 10ml/h to keep the line open was cranked back up to 250ml/h. Now, I may not have actually held my breath, but I did think "here we go again." Nothing. Not a peep out of Adam. These platelets went in without any discomfort whatsoever. Bloody, arsing, Benadryl.

Platelet transfusion finished, another blood draw from the IV, another wait, and finally confirmation that Adam's platelets were now a more healthy 134. We were good to go downstairs to the surgical area. It was mid-afternoon, three hours later than planned. Adam hadn't eaten since the night before, and had drunk nothing since 9am. Just great.

We went through the routine downstairs with the surgeon and anaesthetist, signed the necessary, kissed Adam on the forehead as they sent him to sleep, and left.

Port placement went without a problem. They did a mirror image on Adam's right side of the port he'd had removed on his left side a couple of weeks ago. Adam woke from the anaesthetic saying he wanted to go back up to the 10th floor in the bed. That was fine they said.

What they didn't tell him was that when he got back up to the 10th floor he'd have to get out of the bed. Or that he was due IV ondasetron as a ten minute infusion through his port, followed by chemotherapy given as a slow push. He was still in a Propofol induced angerthon at this point. He WAS NOT getting out of the bed. And YOU ARE NOT giving me ondasetron. And YOU ARE NOT leaving my port accessed overnight. And JUST GET OFF ME AND LEAVE ME ALONE. The nurses put a hot blanket and pillow in one of the comfortable chairs to try and encourage Adam out of the bed. He was having none of it.

"What's the point in me struggling to get in that chair when I've only got to go and get out of it again to get in the pushchair? That's a stupid idea. Why can't I go straight in the pushchair?"

"You can Adam."


Adam got the anti-sickness, he got the chemo, and we left to head back to the Renucci House. It was near 6pm. He was very sore, quite rightly pissed off, tired and hungry.

The following morning we were due back in the hospital at 8:30 for the Zometa, and a blood transfusion. We were late. It took a full 45 minutes to get Adam out of bed. His right arm was numb, his port was hurting, his legs were aching, during surgery they had accessed his port and pointed the line up so when it then dangled down it caused the dressing to tug at his skin. We made it back to the 10th floor eventually, and at Adam's request we settled back into the same room as the day before. His temperature was 37.6 when we arrived and so the nurse took blood for cultures 'just in case'. Eminently sensible we thought, though not what we are necessarily used to. He got some Tylenol to make him more comfortable, we watched some TV and a movie, he got the Zometa and blood; by the time we were done it was 4pm. His temperature as we left was 37.7 so we decided to leave his port accessed just in case something happened overnight and we needed to use it. If not (worst case that was actually best case) we'd go back up to clinic the following day to get it flushed.

We wheeled him back through the hospital to Rennuci, complaining that he was cold. By the time we got back up to our room on the 4th floor he felt hot. I took his temperature; 39.0°. So we about turned and back we went through the hospital to Helen De Vos Children's Hospital and, as it was now a few minutes past 5, on to the Emergency Room. There they invoked their fast track procedure which means they have to get vitals, bloods for the lab, bloods for cultures and start antibiotics within one hour. Adam looked pretty ill by this time. He really did not want to get out of his pushchair to get weighed (we ended up putting him in a weigh bed). And he really did not want to have his second visit from the phlebotomist in as many days (they take blood for cultures from both the central line and a peripheral vein when possible infection is indicated). Initially I thought we were going to have trouble, because the medical staff needing to meet their one-hour target started off looking a little impatient. However, once we explained that if they gave Adam a little time and space to process things he'd be fine, everything ran pretty smoothly. After a discussion with the on-call paediatric oncologist (to explain his allergic reaction to penicillin etc.) he had some antibiotics over a 30 minute infusion, some Tylenol for the fever and we were discharged back to Renucci.

Today we were back up in clinic to get Adam reassessed. He was again feverish, and got a second dose of antibiotic. This afternoon we came back to the Renucci House and he's alternated between watching TV and sleeping. He's clearly got something going on.

Right now it looks like the antibiotics have kicked in, though not necessarily in a good way. As I was typing this he's just called over to me from the bed in which he's trying to get to sleep "Dad. Quick. I think I've poo'd my pants."

And that, I must conclude, is a rather fitting end to a shit few days.

Monday, 12 November 2012

Confirmed ...

Adam's disease has, as expected, progressed. There are no new areas of disease, but increased intensity in skeletal uptake is seen on the PET scan. Bone marrow biopsies also confirm extensive progression, neuroblastoma now invades almost all of the bone marrow space. This coming week we are due to start a different combination therapy based upon Adam's genomic profiling. Tomorrow (Monday) he is due to have a new portacath surgically inserted.

His temperatures have been higher than they were last week, but not to the extent that he has spiked an actual fever. His leg is still giving him a lot of problems and he is mostly immobile.

Thank you for Adam's birthday wishes. He enjoyed the day (Friday) as much as was possible, and he had some nice presents. The morning was spent in clinic discussing scan/test results, but living a life that is impossible to explain to anybody who hasn't been through something like this, we got on with his birthday regardless. His leg was much improved from the day before, and I probably encouraged him to do too much. We went out during the afternoon, and stayed out for some food; when we returned he was in a lot of pain and discomfort. Not a good end to the day, so unfair on him, and nothing we could do to help. At one point, when no amount of shuffling would help, and no change of position brought any relief, he resorted to simply thumping his "Stupid, stupid leg".

Thursday, 8 November 2012

Bone Marrows ...

Never the nicest of days, particularly so when you're without central line access and scheduled for 1pm in the afternoon. Both of which are down to us; we decided to have his central line removed, and we decided to have his bone marrow procedure moved up from Friday … Friday being Adam's birthday. Nothing to eat or drink since yesterday night, except for a little water up to 8:30am.

Adam's left hip 'ache' has intensified, we've had to resort to his pushchair today, whereas yesterday he was walking the corridors of the hospital. Add to that the discomfort from the cannula in his right arm, and the pain from the holes in his back and it's not been a particularly pleasant day. That said, Adam did spend the latter part of the afternoon on his bed, supported by no fewer than five pillows, singing daft made up songs and leaving us wondering precisely what it was they had given him during the anaesthesia. Particularly given that he slept peacefully afterwards and awoke with none of the crazed anger that usually accompanies these procedures.

He's gone from being nil-by-mouth to having to follow a restricted diet in preparation for tomorrow's FDG-PET scan. Tomorrow morning he's once again nil-by-mouth and will need another cannula inserted. This time, however, the scan is first thing in the morning and he won't be having a general anaesthetic. So should be out sooner, and won't be so bad.

Adam's central line, removed at St George's, grew two scanty Staphylococcus bacterial strains. Whether this means there was actually an infection present we don't know (I don't think you can quite make such a direct inference). However, we are keeping a close watch on Adam's temperatures to see whether the return of bone/joint pain will also be accompanied by fever which would suggest an infection was the cause of both, and that it has returned. If he remains afebrile, and the hip ache resolves itself again, we will probably end up blaming sorafenib.

Tuesday, 6 November 2012

Clinic ...

A very long day ended with us turning in sometime after 7pm, or past midnight UK time. Adam was shattered. We'd not actually determined what time they wanted us in clinic this morning, but it wasn't a complete surprise to discover it was 8am. We didn't quite make it, but we weren't too far off. A couple of debriefs of all the funny business that's gone on over the past three weeks; Alison and I were struggling to remember details such as dates, at one point we lost an entire week that Adam did manage to spend at home. Neither of us can actually remember that! Physical exam, blood work, schedule for the next few days, some waiting around for Adam to produce the required urine sample, and we were done.

Having reported to Dr Sholler this morning that Adam had no fevers and no pain, we've seen some slightly higher temperatures this afternoon (though still essentially normal) and he's started complaining that his left leg 'aches' again. He's been a lot more mobile today than at any time during the last three plus weeks, and has also been back on sorafenib (though that's now stopped again in advance of scans and possible change of therapy). We will see what tomorrow brings.

Bone marrow tomorrow means no food for Adam until after lunch, and PET/CT on Thursday morning requires a special diet for the preceding 24 hours. So the next 36 hours are going to be somewhat challenging food-wise. I'll leave that to Alison.

Monday, 5 November 2012

Arrival …

Long but uneventful journey. My first long-haul trip with Adam and I've got to say he's a good traveller. He's been very well, and in good spirits all day, despite being woken up at 5:45am. "I've only just got to sleep" he told me "It's nowhere near morning. You're so rude. You're just so rude."

I got my first lesson in US rules & regulations. Hadn't booked a return flight. Fine for Alison & Adam who have US Visas, not fine for me who has a 90-day Visa Waiver. Pronto march to the ticket desk to book a return flight for me. We flew Delta Airlines, service was great and drive from Detroit was straightforward … and extremely dull.

All checked in at the Renucci Hospitality House now. Clinic appointment with Dr Sholler in the morning …

Sunday, 4 November 2012

Day - 1

Adam remains ok. No elevated temperatures since the start of the week. To be on the safe side, Alison took him up to Epsom Hospital to have his blood counts done this morning, and they are ok too. Taxi is booked for 6am. We just need to finish packing. And Adam just needs to have a bath, because he's not had one for a month. But I think we are good to go (I won't be taking anything for granted until the plane has actually taken off).

As Adam will be in the US for his 9th birthday next Friday we let him open a few presents at home this afternoon with his brother and sister.

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No letting up … keep those fingers crossed.

Saturday, 3 November 2012

Day - 2

Morning: Xbox Live with Jake and Ryan - loud and fun. Lunchtime: short walk and playing with fallen leaves - first time Adam's been outdoors in three weeks. Afternoon: TV watching and drawing unflattering pictures of me on his Boogie Board - quiet and unremarkable. Evening: sparklers in the garden and a TV movie - nice.

All good.

Friday, 2 November 2012

Day - 3

Adam's temperature has remained below 37° today, and he's remained well in himself. His port site looks clear with no visible sign of infection. Jake & Jess are back home now so hopefully we'll be able to enjoy something resembling a nice weekend at home. A couple of unremarkable days will do just nicely thank you very much.

Thursday, 1 November 2012

Ok ...

Adam has been ok today. A little sore, but he's eaten well and hasn't had any temperatures. This morning he was up and out of bed early to play with Jake, then downstairs to play with Jess, then back upstairs to play with Jake again. He's not done much of anything except laze around in bed and watch TV since mid-morning, when Jake & Jess left to spend the night at my sister's house, but that's not such a bad thing.

We have our confirmed itinerary for next week. Appointment with our US oncologist on Tuesday, bone marrows on Wednesday, PET/CT on Thursday, Adam's 9th birthday on Friday. We don't know how long we'll be in America for this time; to prove the point, we didn't even bother booking a return flight home.

As every day is important and precious we moved our flight out back to Monday, so we get an extra 24 hours at home; meaning Adam, Jake and Jess get to spend Sunday together. Whilst part of me wants to put Adam on a plane tomorrow in order to ensure we get him out to America, we do have to weigh everything up carefully. It won't come as any surprise to hear that Adam would much prefer another day at home playing with Jake & Jess, than a day stuck in Grand Rapids with just me and Alison before the hospital visits start.

Wednesday, 31 October 2012

Line out ...

Adam had his port removed this morning at St George's hospital in Tooting. We didn't realise it's more involved than a Hickman line removal, but apparently it is. The surgeon told Alison this … just to make us feel worse about putting Adam through the possibly unnecessarily procedure. Alison also got quizzed as to why it was coming out so soon. Ordinarily it's done as a last resort, when all other avenues have been explored, and all other treatments tried without success. Instead of four or five weeks, it's been only two-and-a-half since we first took Adam to Epsom with pain and fever. Anyway, following Alison's talk with the surgeon we're expecting to have a sore little boy for a few days.

As Adam's had no temperatures above 38° since Sunday he's actually been discharged from hospital all together. Tonight, fingers crossed, he'll be back in his own bed again. If that doesn't cheer him up nothing will. We'll be keeping a close on eye on him, and hoping that nothing untoward happens over the next few days.

We're due to fly out to America this Sunday. Keep everything crossed people, keep everything crossed ...

Tuesday, 30 October 2012

Closer ...

Another day the same as the previous. Adam is feeling better, looking better, eating better. Even his temperatures continue to get a little better. Let's not get carried away though. His disease is almost certainly progressing and we'll need to try a different therapy when we finally manage to get back to the US.

Tomorrow is line removal. "I'm going to have that angry medicine again" said Adam. He means Propofol. He is raging when he comes round from the anaesthetic; screaming and shouting. "Why don't they give me something different?" Good question, Adam. I don't know. Maybe they enjoy watching you tell me, no sorry yell at me, to get out of the room, to get out of the building, and to GO BACK HOME!

We've booked flights to Detroit. Seats were getting limited. At first I didn't want to book anything and then have fate conspire against us. However, on reflection I figured if Adam was unable to travel due to circumstances beyond my control then so be it, but I certainly didn't want it to be because his idiot father had left it too late to book anything. We do need him to remain well after the line removal, and not get any more fevers, which sometimes happens as removing the line triggers a reaction. It feels like we're coming round the bend and heading into the home straight. A few more days and we'll finally be on that plane. I don't ask for much, but please everything go to plan this time …

Provided line removal goes ahead without any problems Adam will be formally discharged to return home afterwards. If he's well enough he'll be donning his Ninja suit and hitting the streets for Halloween … so look out residents of Epsom, because Adam could be on the loose tomorrow night after all. Albeit under strict supervision.

Planning ...

Adam had another similar day yesterday; eating fairly well, home for lunch, moderate temperature during the afternoon. generally in good spirits although maybe a little more tired than on previous days.

Line removal is scheduled for tomorrow morning at St George's. There is no easy way to explain any of this to Adam, but nor is there anything to be gained by giving him unnecessary details, and certainly none of the brutal truths. We had a talk about it, he cried a little, we had a hug, we talked some more until he'd got his head around what he needed to get his head around. He's anticipating a couple of days of being uncomfortable, in the same way he was when his hickman line was removed. I nodded and gave him a pathetic "Well let's hope it won't be as bad this time." And he also knows he will need cannulas, and a new central line inserted once we get to America. I smiled and gave him a pathetic "Let's see what the doctors say once we get to America." Imagine trying to navigate an eight-year-old child through this nightmare, when all he wants to do is to be able to go out trick-or-treating on Halloween … which he might still get to. And be at home for his birthday … which he won't. What has my little boy ever done to deserve this shit?

Once Adam's line is out, and providing he remains clinically well, we need to figure out travel plans. Last time we flew with Virgin (who were absolutely brilliant) to Chicago and then drove 3-4 hours to Grand Rapids. But Virgin only fly to Chicago during peak season, and driving conditions are going to deteriorate as we get into the latter part of the year. So we need to figure out new travel plans. BA to Chicago remains an option, but it's crazy expensive especially if we want Adam to be as comfortable as possible on the 9 hour flight. Virgin to DC, or NYC, with an internal connecting flight would be a very long journey, plus there's the aftermath of Hurricane Sandy to contend with. Our only other option is a Delta/KLM flight to Detroit and to drive from there.

We'll figure something out. Because you just do. Because you have to.

Sunday, 28 October 2012

Repeat ...

A repeat performance today. Adam's temperature peaked at 38.5° early evening (with tympanic thermometer). Other than that he's been well. He came home for lunch, and spent several hours playing on the PS2 with Jessica. He's playing catch-up; yesterday he was gaming with Ryan, and today he played with Jess for the first time in days. When we returned to the Marsden for Adam's afternoon antibiotics Jess came with us, and the two of them carried on playing until it was time for Adam to settle down for bed.

The fevers have definitely subsided, but now Adam's temperature is grumbling along; normal but higher than Adam's normal in the morning, and elevated further in the afternoon through early evening. Our plan has to be line removal, hopefully we will find out tomorrow when we can get it done. He's been better in himself again, and with his improved eating some of the weight he lost has started to go back on again.

Oh, and we had two bowel movements, so you can uncross your fingers now thanks.

Saturday, 27 October 2012

Brighter ...

Adam's been brighter and more lively again today. He was even allowed home for lunch. Ordinarily with the sort of temperatures he's been recording he wouldn't be, but our circumstances now are not exactly ordinary. We're pleased with the way the doctors here have listened and discussed things with us. He enjoyed being back home, if only for a few short hours. For the first time in many days he got to play online with Ryan. It was just like old times; FaceTime and XBox Live.

He's been eating but still nothing like a normal amount for him. Slightly worryingly he's not emptied his bowels since Thursday evening. We've been quicker to dose him up with something to help things along this time, we do not want a repeat of the stomach pains of last weekend. That would really screw things up. So cross your fingers and hope for some toilet action tomorrow people.

Adam's temperature was elevated again this afternoon but not to the extent it has been, peaking at 38.4° with the tympanic thermometer. Things have definitely improved in the temperature department slowly over the last two or three days, but why and where they are ultimately heading I couldn't begin to guess. We shall see what tomorrow brings and take it from there.

We do now have a plan to get Adam to America, but we need him to remain clinically well and for any fevers to be controllable with paracetamol. We have requested a surgical slot for next week to get his portacath removed. Without a central line the risk associated with him flying will be far less and, all other things remaining as they are now, we should get permission from the doctors for him board a plane. Obviously not having intravenous access presents it's own issues, but we will deal with that problem once we're back in the US. Line removal would normally only be done as a last resort; once antibiotics, anti-fungals, and all other possibilities have been exhausted. However, with time not on our side decisive action is required. And if removing Adam's central line is what's required to get him on a plane, then removing Adam's central line is what we must do.

Friday, 26 October 2012

Oddness ...

Adam's been more active and alert again today so far. Jessica has an inset day, so she went in earlier and played the PS3 with him. He's eating bits still, nothing like normal portions, but it's bound to take time to build back up. His temperatures remain problematic. And also odd.

If I say they've been more elevated than the past couple of days you'd rightly think that was not a good sign. However, we've transferred to the Royal Marsden where they use tympanic (ear) thermometers. At Epsom they use (equally expensive) axillary (underarm) thermometers. Our own cheap-and-cheerful underarm digital thermometer, and tempadots that we've also used reliably in the past, have correlated fairly well with the temperatures recorded by the nurses at Epsom. We've picked up 39° and above, both before Adam was first admitted to hospital, and since. Now, however, we are seeing large differences between the 'official' temperatures and those we are recording ourselves. Yesterday, the nurses registered 39.9° and 39.3°. Adam was asymptomatic, wasn't burning up, feeling cold, shivering, or otherwise displaying any visual signs of fever. Our own thermometer gave a reading of 38.3°.

This afternoon after an official reading of 38.8° we got our own reading of 37.8°. Adam's pulse, which correlates very well with his temperature was 110, elevated but not to the extent we have seen previously. This morning we did an experiment. Tympanic 38.2°, underarm digital thermometer 36.6°, underarm tempadot 36.9°, and under-the-tongue tempadot 37.4°. We know from experience that the tempadot has a difference of around 0.5° depending where it's used. I tried the tympanic thermometer on myself; 36.9° in one ear, and 37.0° in the other! Nobody is suggesting that the tympanic thermometers are inaccurate, but as Adam's temperature rises there appears to be a bigger and bigger divergence between readings on different thermometers. Which means one cannot meaningfully make any comparison between the temperatures Adam is getting now, and those he was getting whilst he was in Epsom Hospital.

Adam is still having fevers, that much is true. It's just that we're no longer sure how high they are now … or alternatively how high they were before.

In other news the nurses gave Adam IV paracetamol in the night without Alison being aware, resulting in Adam having a hot flush and needing a fan on to cool him down. That won't be happening again, it's better he's left alone if he's sleeping peacefully regardless of the temperature. And this afternoon, despite us explaining everything yesterday, the nurse pushed his double-dose antibiotic instead of infusing it over half-an-hour. Adam duly responded by sneezing a few times and getting a constricted throat for the best part of the next hour. Alison was outside the room at the time discussing things with the doctor, and only became alerted to what was going on when she heard Adam sneezing. Honestly, you need eyes in the back of your head. It shouldn't have happened, but all of us who have been through this experience know these things do happen. And not just in the UK; there was one guy in Greifswald who used to come round and simply turn off any machine that was beeping … if you weren't on your guard your child's continuous hydration would suddenly come to an abrupt halt!

Thursday, 25 October 2012

A little ...

Adam has been a little brighter today. He's smiled and laughed for the first time in two or three days, and has even delivered a few trademark putdowns - almost exclusively in my direction. "Stop trying to be a food critic" he said after I made some comment about my lunch. This morning it was nice to see him having a chat with his little mate Ryan, when for a while he's shown little interest in engaging with anybody or anything.

He's eaten a little breakfast, and a little lunch. And when I say a little I mean a little, but a little is better than nothing. We've started given him liquid nutrition via a syringe, he doesn't like it but he needs it. Since he was first admitted 12 days ago he's lost 2.5 kilos … and it shows.

Temperatures have been a little better, although perhaps that's just a case of wishful thinking. They are still up and down though, and this afternoon he spiked at around 39°.

Echocardiogram didn't show up anything abnormal (and Adam's heart function is still reasonably good). Ultrasound showed enlarged lymph nodes, as did chest CT. These are areas where we know Adam has disease. Nothing else was detected as being suspicious for either disease or fungal infection.

We took Adam to the Marsden just after midday. The ambulance arrived ten minutes after it was called, when normally it takes between one and two hours. We weren't even close to being ready, so got agreement to take him ourselves by car instead. That's what Adam himself had asked us to do in the first place anyway. This morning he was really unhappy at the prospect of sharing a room. As it turns out we're in the MIBG suite at the end of the ward, and Adam has a nice big room all to himself. Not sure how long it will last, these things generally depend on whose need is the greatest.

We've talked about options, and our consultant at the Marsden has emailed our doctor in the US. It remains our intention, and resolve, to get Adam back to the US for further therapy, but it might take a more radical approach to get him there. We don't have the luxury of being able to wait and wait for these fevers to recede … not least because we know they might not.

All-in-all a better day. A little better. A little better so far.

Wednesday, 24 October 2012

Transfer ...

Adam will be transferred by ambulance to the Royal Marsden Hospital tomorrow morning. They have a bed available and it's felt that would be the best place for him at this time.

He isn't happy at the thought of swapping his cubicle here on Casey Ward for a slot in a four-bed bay at the Marsden. Let's hope we don't end up sharing with any noisy kids or ignorant parents (most likely it'll be both) … because he will make his feelings clear. He can yell at whomever he likes as far as I'm concerned, it was a stupid idea to retain those 4-bed bays when they built the new children's unit. The person who designed it certainly wasn't thinking of the kids or their parents when they did so.

Same old ...

Restless night, more temperatures, not eating, feeling rubbish, aching legs, just wanting to go home. That pretty much about sums it all up. I used to write reams ... and now a single sentence will suffice.

Adam had an echocardiogram yesterday, chest CT and abdominal ultrasound this morning. We've had no official word yet on results.

Tuesday, 23 October 2012

No positives ...

Adam has been worse today than yesterday. More feverish, more tired, and eating next to nothing. There are no positives. I even refuse to get into any maybe this, maybe that talk. We will see what tomorrow brings.

Let's go back to the start ...

It wasn't the greatest night's sleep Adam has ever had; he registered temperatures of 38.6°, 39.0°, and 38.5°. It also wasn't the greatest night's sleep Alison has ever had; she spent most of it on Adam's bedroom floor. Do I regret taking him at home though? No, not for a second.

Peak temperatures aside, there is also a clear indication that the baseline is now up from below 37° to above it. So we are starting again on the frontline antibiotics that were stopped on Saturday after seven days. His best day, looking back, was Friday, and then he's been downhill since really, although the stomach pain definitely clouded the issue.

So we think it's a bacterial infection, despite having no positive blood cultures to provide any absolute diagnosis. We think, we don't know. So at the same time as starting antibiotics, Adam is being scheduled for ECG, abdominal ultrasound, chest x-ray and chest CT.

Typically when you want everything to go as smoothly as possible, it doesn't. Adam's new port wouldn't work this morning, and after several attempts to flush and draw back, it had to be removed and yet another one put in. Thankfully this time everything was fine. We're now waiting for antibiotics, blood transfusion, platelet transfusion, and more antibiotics.

Monday, 22 October 2012

Up, Down, Cry, Smile ...

It may have been a thoroughly shit nine days since we took Adam into Epsom Hospital but I can honestly say the level of care he's received has been exceptional. We've been fortunate that the consultants in charge, both last week and this, have looked at Adam, his long history, where things are at now disease-wise, the evolving situation, what we are trying to do in terms of getting him back to America, and have taken a very pragmatic approach to how he's been treated, both as a patient and as a person. We've been made to feel that Adam's care has been individual, and not simply prescriptive. The junior doctors, nurses, and community care team have all been great.

Today has typified these past days, one step forward, two steps back, glimmer of hope, silver lining, could go either way, and when all's done most probably we'll end up back at square one.

We're pinning the stomach pains on the combination of a very good eating day on Friday and the oramorph that Alison and I thought would be a good idea for him to have to help him remain comfortable whilst he was at home. Nice one Mum and Dad, that worked well didn't it?

"Remember that conversation we had about the doctor saying he thought there was still more poo up there?" said Adam after his second sit-down visit of the day "Well I don't think there's any more up there now."

The consultant thought Adam looked brighter this morning when he examined him during ward round. Indeed Adam was more chirpy than he has been for several days; we sat playing some random archery game on his iPad, each trying to better the highest score, and generally joking around.

The doc talked through the plan; that evening would be 48 hours since Adam had last registered a temperature above 38°. Provided he didn't spike again he thought it would be reasonable to discharge Adam to continue to be monitored at home. I asked him two questions; the optimistic one - "assuming Adam did not have another fever how soon could we look to get him on a plane?" "He would be certified fit to fly and realistically you could look to fly Thursday." And the pessimistic one - "supposing Adam does get another high temperature what then?" "I think we have no option but to treat for fungal sepsis, start ambisome and instigate the additional investigations."

Adam slept without his port accessed last night as it'd been in for over a week and needed to be replaced; a small victory for the little chap. As a consequence his bloods weren't taken until late morning. It doesn't happen often, but his newly inserted port started making horrible clicking noises whenever Adam moved. He hates that, and in truth it is a bit freaky. To the point where we did say we would have it removed, put some more emla on and get a different one put in. Not that we needed to, as it turned out.

A while later the nurse returned to say she needed to take more blood as Adam's haemoglobin had come back as 19.1. Yesterday it was (supposedly) 8.8. There was no way, thinking logically, that the pale little boy lying in the hospital bed opposite me had a normal Hb let alone 19.1, but these anomalies never fail to get the mind going in all sorts of directions.

After antibiotics we gathered Adam's things together ready to go home, and Alison got some fresh clothes for him to put on. The nurse came to do a final set of observations before we left. Temperature 38.1°. F&*@. F&*@. F&*@. F&*@. They notified the doctor and we waited for official confirmation of next steps.

We explained to Adam that this meant he couldn't go home. He sobbed. He even said, and I cannot remember the last time he said anything like this, "why is this happening to me?" Deep breaths. He then slept for a good hour-and-a-half. He hasn't done that since the middle of last week. After waking he suddenly exclaimed "My port is bleeding!" He was later to tell us "I told you it wasn't in properly." There was nothing else for it but to remove the port and clean up the bloody mess that was left behind.

When the consultant arrived he sat down and announced they had a new plan. An imperfect plan, but all things considered, it was the best they could come up with. Adam's CRP is the same, massively elevated but with no baseline as we hadn't measured it before Adam first became febrile. Effectively, what is attributable to the neuroblastoma? We simply don't know. The opinion of the microbiologist was that if there was a fungal infection he would have seen something in the seven days worth of blood cultures that were sat in his lab being encouraged to grow. As it was absolutely nothing had shown up and that made him almost certain this wasn't a case of fungal sepsis. Moreover, if it were, the antibiotics would have had no effect whatsoever, it would not have improved on its own, and most likely would now be worse having been left untreated for over a week. It didn't fit.

Having dropped two of the antibiotics at the weekend Adam has had a couple of higher temperatures, but no big spike of the extent when he was first admitted. So the new plan was (and is) to stop the remaining antibiotic and monitor Adam for the next 48 hours. If he spikes a higher fever than we've been seeing (say 38.5° to 39° plus) then they will restart with first line antibiotics as per a new admission. They will continue to culture so they have samples collected whilst Adam isn't on antibiotics (all but the first Sunday have been whilst being treated). If there is no increased temperature spike in the 48 hours then the assumption will be (provided the new cultures also show no growth, either bacterial or fungal) that the moderately elevated temperatures are disease (most likely), or treatment (less likely), related. Either way, if they are controllable with paracetamol we should be able to get Adam on a flight to America.

All somewhat unexpected, and it didn't stop there. Adam's true haemoglobin was 7.1, making as much of a mockery of yesterday's 8.8 as today's earlier 19.1. Platelets were 20. Meaning transfusions of both would be required. However, all things considered, and with mine and Alison's agreement, the doctor was happy for Adam to be released on home leave and return first thing tomorrow morning to be accessed and transfused.

Now that put a smile on Adam's face.

He's not been discharged, he has been released into our care; we are responsible for monitoring his temperature overnight and taking appropriate action should it rise higher than it has in the last couple of days. His room at the hospital is still there for us to take him straight back up to the ward if the need arises. There's no getting carried away. Adam still isn't eating, we have to get that back on track after the stomach problems. And most likely he is going to throw a fever and wind up back on first line antibiotics. But all things considered this evening has been a lot more pleasant than it had threatened to be for much of the afternoon.

Knife-edge ...

This morning Adam opened his bowels for the first time in 48 hours. What he left behind in the toilet could quite conceivably account for the stomach pains. Certainly he's not complained since, though he's not eaten much either. Fingers crossed.

Everything is in the balance and depends upon Adam's temperature remaining below 38°. We know his temperature is higher than normal, and becomes further elevated into late afternoon and early evening. Right now it's all on a knife-edge to be honest. One reading the wrong side of that magic number and we're facing a minimum of 48 hours anti-fungal medication, chest x-ray, ECG, ultrasound and CT.

Adam's been emotional today; he really wants to go sleep in his own bed, he doesn't want his port left accessed overnight, he doesn't want to go to America, he doesn't want to be away on his birthday, he doesn't want to spend any more time away from Jake and Jess.

Basically he's fed up … who can blame him. And we have no words to make any of it any better.

Sunday, 21 October 2012

Wishing ...

Adam has been both slightly improved today, and just the same. His temperature increased during the afternoon, and as I left him settling down to sleep this evening it registered 37.7°. Not very different from the night before - 38.1° and 37.7° are the same, or at least the same pattern, to my mind. His stomach ache makes him uncomfortable and he cannot eat without making it worse. Consequently he's eaten very little once again today. It's not good.

In himself he has been more alert and a bit more active. He came home and joined in games with the rest of us; he tried to yesterday as well when we had family visitors but it was a real struggle then. Today he was able to participate more easily and more fully.

We have ditched oramorph. Adam had such a bad time with IV morphine in Germany we can't exclude it as being a contributory factor. I know he's on a lot lower dose orally now, but we started to give him it for the bone and joint pain, he eats the best he has for a week, and suddenly he has stomach pains and general malaise. We need to see the pain consultant at the Royal Marsden if we want Adam to be prescribed an alternative.

We agreed with the doctors yesterday that we would stop two of the antibiotics and just retain the third that was started on Wednesday, and is given as a once-a-day infusion.

If the fever returns they will start anti-fungal medications, chest x-rays and CT scans. But what Adam is experiencing now in terms of fever could so easily be neuroblastoma. The stomach ache? Who knows. It only started on Friday night, pretty much as Adam had gotten over the worst of all the other various aches and pains he's had. If it wasn't for that we'd have been discussing whether they'd allow us to take Adam to America with paracetamol to ensure his temperature remained fully under control.

As it is, we just need our little boy to catch a break, instead of lurching from one thing to another.

All Adam wants to do is come home to sleep in his own bed.

Saturday, 20 October 2012

Frustration ...

Today has been a rubbish day. Never second guess where things are going, or what will happen next. This is the lesson, repeated so many times, but never it seems learnt. After yesterday's successful visit home, Adam complained of abdominal pain in the car back to the hospital. We thought little of it. Today he's had a painful stomach ache that has stopped him from eating, interfered with his drinking, and made him feel, and look, generally unwell. He's wanted to do nothing, he's done nothing. And to top everything off his temperature, having remained below 38° for the last 50 hours, has just risen to 38.1°.

I can't write any more.

Friday, 19 October 2012

Visit Home ...

One of the brighter aspects of this week, and let's face it there haven't been many, has been the paediatric oncologist at Epsom Hospital also being the duty consultant up on the ward. The situation is not altogether straightforward, with Adam being in Epsom under their shared care arrangement with the Royal Marsden, who are looking after Adam whilst he's a patient of Helen De Vos Children's Hospital in Michigan, USA, participating in a Phase I NMTRC clinical trial. But things have worked out ok, the communication has been good. We've listened and been listened to, and we've made collective decisions we all understand and are (albeit perhaps to greater or lesser extents) comfortable with.

There has been no further investigations, no x-rays or ultrasounds or CT scans. The spike in temperature yesterday has been noted, but put in context that it wasn't repeated and Adam's charts clearly demonstrate the dampening that has taken place. Although his temperatures are still above where they would normally be, there are no longer the clear peaks and troughs of earlier in the week.

Adam reaffirmed his desire to go home, to spend some time with Jake and Jess. In the context of where things are at, what we are planning, what we face, such desires cannot be ignored. So we talked it through with the consultant here, who in turn talked it through with Adam's consultant at the Royal Marsden, and they agreed he could spend a few hours at home after his antibiotics at 2pm.

We were not sure how Adam would be at home; I mean he clearly isn't well. The first thing he did, which seemed a little odd to me, was to go upstairs and climb up on to his cabin bed. There we thought he might decide to stay until we took him back to the hospital. But instead he came downstairs, played a couple of board games (at his own request), and ate the best meal he's had all week. We returned to hospital around half-past eight so Adam could settle down for the night. Our hope is that we'll be able to have a repeat tomorrow, but maybe get them to bring the antibiotics forward a little as well so we can get away sooner. I might be in danger of getting ahead of myself though, so I'll stop there.

IMG 2132

Reflecting a little on this past week, it is now the longest Adam has been hospital with fevers since he was first diagnosed. I suppose that's something, isn't it? No, you're right. It's not really, it's totally irrelevant.

Treading water ...

And so it continues.

Adam had a reasonable day yesterday, but around 4pm he became tired and his temperature rose to 38.8°. Whether the temperature came on as he got tired, or the tiredness was a result of the temperature is anybody's guess. He had a little sleep and was fine for the rest of the evening. His CRP has now plateaued at 60 times above the normal level. Technically he's still not well enough to leave the hospital. Even I don't think he's well enough, under normal circumstances, to leave the hospital. That solitary fever of yesterday ought to escalate matters to the next stage; more investigations - chest x-ray, abdominal ultrasound. Primarily looking for other causes of Adam's condition such as fungal infection. However, we need to get Adam back to Grand Rapids so we can re-evaluate him properly and look at trying something different given the current combination is (almost) certainly not working to hold back his disease. We don't want to be hanging around looking for a cause that doesn't exist only to end up with his disease flaring up and the high fevers starting over … if indeed they were caused by neuroblastoma in the first place.

And so it continues.

With everything hanging in the balance.

Thursday, 18 October 2012

Hope …

Adam's fever continued to recede overnight and he hasn't required any paracetamol since late yesterday afternoon. It's clearly good news, but no cause for euphoria and we're not getting carried away. His ANC has further improved following a second dose of GCSF, and his CRP has dropped a little although it remains highly elevated. Our sole objective remains the same; to get him well enough to board a plane back to America. Adam's objectives are (1) to have his port de-accessed so he can lie on his left side, and (2) to spend some time at home. We've relayed his objectives to the doctors as well, because they are important. He knows we are taking him back off to America at the first available opportunity and he needs to know that we understand his needs too, and try as much as possible to accommodate them.

Various aches and pains remain but those he had on Sunday when he was admitted, right shoulder and left leg, are all but gone. His right leg and the top of his head are giving him the most trouble now. I really don't know what's going on. Pains moving around and resolving themselves would be atypical of neuroblastoma, but I've heard such wide and varied accounts of what this disease is capable of that we can't rule it out. The fever and CRP, despite responding to antibiotics, could easily be neuroblastoma. To provide an unpleasant perspective on our current situation; when Adam was diagnosed he presented with swollen lymph node and neck pain. His CRP level was highly elevated, but initially improved with antibiotics, thus supporting the incorrect hypothesis that his problems were the result of an infection. As I've said many times; before Adam became ill he was apparently well, so the fact he appeared to be well last week means nothing.

So we continue to watch, we continue to wait, and we continue to hope.

Ryan ...

As ever with this bastard disease what a difference a day makes. On Tuesday everything was moving forward well for our little mate Ryan, who's been in Tübingen since the start of September undergoing haplo-indentical transplantation. Yesterday we heard that Ryan's own T-cells have begun taking over the graft he received from his Mum, and there's now a distinct possibility that his body will reject the transplant completely. You couldn't meet a nicer child than Ryan, this would be so so unfair on him to have to go through it all again; although if that does turn out to be the case I have no doubt his infectious, cheeky, smile won't be gone for very long! Twice Ryan has been in remission, and twice his disease has returned. Now in remission for a third time, haplo-transplant gives him a chance to be rid on neuroblastoma for good. And if anybody deserves that chance it's Ryan. We'll be thinking of him every day as we always do, wishing his T-cells ill and hoping the Doctors in Germany can get things back on track. Their plan, which has already started, is to give regular additional infusions of Julie's T-cells to try and overpower Ryan's own T-cell response; but there's no overnight fix, and at this stage nobody can predict the outcome. This is Ryan's Appeal Page.

Wednesday, 17 October 2012

And Waiting ...

Nothing very new to report. Adam's up and down (with paracetamol) fevers persist, and his aches (he actually doesn't refer to them as pains) remain. Any change in the fevers can be neatly summed up by the fact he's having three doses of paracetamol in 24 hours at the moment, instead of the four he was needing previously. His aching left leg has improved, both according to Adam, and as evidenced by the amount of freedom of movement he has in it now (albeit whilst still lying in his hospital bed). However, he's now begun complaining that the ache has transferred to the right leg. I know hypochondria runs in the family, but sadly he's not faking it. His shoulder problem now appears to be completely resolved, but in addition to the leg aches, he has new areas that are either tender to touch, or 'feel like carpet burns' when rubbed.

His ANC (Absolute Neutrophil Count) was just 0.5 yesterday so he received a dose of GCSF; this morning it had come up to 1.6. Haemoglobin and Platelet counts are very suppressed, but stable. After speaking to our US oncologist we are holding off starting cytarabine, and are going to review the situation later in the week. As per NHS fever protocol they are going to add a second broad-spectrum antibiotic into Adam's schedule, starting today. Neither his blood cultures, nor his urine specimen, have tested positive for any infections.

And so we continue to watch, and wait.

For those of you who saw my earlier comment about Oscar, I'm very happy to report that he's made tremendous progress over the past couple of days and is now able to sit up in bed unaided. Whilst he didn't end up in Philadelphia having the treatment he was intended to have, as things transpired he could not have been in a better place than CHOP to be treated for such a rare and dangerous condition, one for which I don't even think there's any clearly recognised treatment.

Tuesday, 16 October 2012

Waiting …

Nothing remarkable has changed since yesterday. Adam is still having fevers, still has leg pain, is still on antibiotics. We're in a holding pattern, albeit we have a firm objective now that is to get Adam on a plane and on his way to America at the first available opportunity. We're looking to add oramorph to our drugs arsenal in the hope that it will bring Adam more mobility, and control the pain that comes with movement. That is the second obstacle to overcome in order to get to America; the first, and more problematic issue, is his fevers. Whilst easily controlled with paracetamol they remain regular and high. Coupled with a CRP that was today further increased to nearer 400, that means nobody is going to be willing to let us to take him out of hospital, let alone put him on a long-haul flight across the Atlantic.

If anything I'd say Adam has appeared slightly better today, but it's hard to judge. His fevers so far have been a little farther apart, and a little less severe. The movement in his leg is a little better and he even stood up for about thirty seconds and willingly sat himself in a chair whilst Alison replaced his bed sheets. But we're talking fractional improvements at best, rather than any dramatic leaps forward. He's quite well in himself, although perhaps a little more fragile emotionally than normal. We've spent a good few hours today playing Toy Story on the PS3 with plenty of laughter and plenty of abusive taunts relating to my gaming ability.

The bottom line is we still have no real idea as to the cause of either the fevers or the leg pain. Both, either, or neither, could have neuroblastoma as their source. However, his tumour markers in themselves are sufficient for us to make the decision to return to America sooner than was planned.

Live and learn. I should never have contented myself with urine tests that took 10 days to report results. I did think about investigating how we could expedite things by sending the samples elsewhere, having the tests conducted privately, etc. But I didn't pursue it and I should have done. As it is, there's no use moaning about the consequences now.

Monday, 15 October 2012

Fear ...

Adam hasn't improved any. His fever comes, goes with paracetamol, then comes again. His leg still brings extreme pain when moved, his shoulder has allegedly (according to Adam) got worse again, though I'm not entirely convinced about that. Nothing has shown up yet in either blood or urine samples, but he didn't produce the required stool sample until earlier this morning. I'm not expecting anything positive to show up, this feels like neuroblastoma's doing to me. Of course I hope I'm wrong. Nothing would make me happier than to be wrong and all this end up being a combination of infection plus side-effects of sorafenib. But I'm not wrong.

This morning we got Adam's most recent urine results measuring his catecholamine levels, a tumour marker for neuroblastoma. The levels have gone up a lot, and they were already way above the normal levels. I say most recent, the sample was from October 4th so we can only hypothesise where they're at now. All samples from South West London are sent to St Helier for analysis, and there is a 10-day turnaround. At the hospitals we've been to in Germany and the US results are obtained the same day. Don't ask me why it's deemed acceptable for it to take more than a week to process samples over here, I'd only be guessing. His LDH, a blood serum tumour marker, is also the highest it's been since we started tracking it over a year ago; it's way too high.

We need to figure out a plan. And it really feels like we need to do it quickly. At the moment getting Adam fit enough, through a combination of paracetamol and pain relief, to put him on the first available flight to the US is looking like our best option.

Thursday I was wrestling with Adam in our front-room and he was throwing me on to the sofas. Friday he was out in the garden playing football with Jake. In reality just a few days ago, and yet in my mind it seems like light-years ago now …

Morning ...

IMG 2130

Sunday, 14 October 2012

Diarrhoea ...

And thus ends my trio of updates for today. After a perfectly normal (and quite reassuring given he'd not been at all yesterday) visit to the toilet, Adam followed up a couple of hours later with a bout of diarrhoea. In the event of a repeat we now have a commode and sample pot stationed in our bathroom to collect yet another something for the lab to test. Adam was displeased at the prospect of having to use the commode. "Sitting on the toilet is uncomfortable enough" he said, "My leg is going to hurt even more having to sit on that." "You said you'd make things as comfortable as possible for me whilst I was in hospital. Well I can tell you THAT ain't workin' for me."

I've since returned home after a quick changeover with Alison. The battle of the commode is hers to fight now. Adam is asleep, having had his second dose of antibiotic without incident. His fever returned late afternoon, but another dose of paracetamol quickly brought it back under control again. Given that I will be working tomorrow, and Alison will therefore be at the hospital all day, I did a ten hour shift today. Lying on the portable bed waiting for her to arrive I thought of all the times over the past three years we've been in and out of these cubicles on Casey Ward. Countless times. Different day, different cubicle, same old shit. And if you offered us more of the same for the next three years we'd accept it without so much as a momentary hesitation.

So we wait to see what tomorrow brings; in terms of fever, CRP, and now diarrhoea. Adam is due to begin the next cycle of treatment on Tuesday; that means four days of cytarabine, the chemo drug that we blamed for his fevers previously. Tomorrow we'll have to figure out what to do about that now as well.

CRP ...

Adam's CRP, a generic marker of infection/inflammation is 211. A normal level is less than 5. The elevation could be the result of infection, or tissue damage. More sinisterly, we also know CRP can be elevated by neuroblastoma, which could also be the underlying cause of the fever. At present we simply don't know. We assumed the last febrile episode was a result of cytarabine, but we don't have a similarly convenient explanation this time around.

He's been started on teicoplanin for prophylaxis against a possible gram-positive bacterial line infection, and ceftazidime as a more broad spectrum antibiotic. Having experienced allergic reactions to tazocin and meropenem in the past, options are more limited than would otherwise be the case. When he received the first dose of ceftazidime last time he sneezed a few times and then complained that his throat felt a bit swollen. This time the same thing happened. Although they were on standby with piriton in case his airways became further restricted it wasn't necessary. They'll just be extra cautious now with his next dose at 11pm this evening.

His temperature has remained normal since paracetamol earlier, and he's currently having a Yu-Gi-Oh! duel with his sister … now they've finished arguing over which of them various special cards belong to.

Fever ...

Adam is back in Epsom Hospital with fever and severe pain in his left leg. We were supposed to be enjoying a weekend away together at the caravan as Jake wasn't playing football. So much for that idea. On Friday Adam started complaining of pain in his right shoulder, he couldn't lift his arm at all. Then yesterday he couldn't move his left leg without wincing with pain. He certainly couldn't stand on it. Muscular, joint, and bone pain are side-effects of the sorafenib that Adam is on; he had various aches and pains during the first cycle but nothing quite as severe or debilitating as this. The location of these latest two problem areas exacerbates matters. The fear, of course, is that this is neuroblastoma, not sorafenib. Adam has lots of disease in his pelvis and hip area. His shoulder problems began to resolve yesterday, and by this morning he only experiences pain if he fully extends his arm above his head. His leg hasn't yet begun to improve.

We decided last night to pack up and come back home as nobody was having much fun. We'd tried to go out for lunch, but Adam couldn't get out of the car, couldn't get comfortable sitting; all we succeeded in doing was having an aborted trip out that left Adam upset and Jake and Jessica feeling let down. General family disharmony ensued.

This morning Adam woke early, though in good spirits. However, his temperature quickly began to rise and by mid-morning it was clear we were heading for a few days back up on Casey Ward. And so here we are, waiting for Adam's blood results to see if they provide any clue as to the source of this latest episode. Adam lies in the bed opposite me, the fan blowing air over him now the paracetamol has taken effect and he's gone from feeling cold (but having a fever) to feeling hot (but having a normal temperature).

This world in which we live can be a cruel world indeed. Last weekend, little Oscar travelled from Dublin to Philadelphia to start the immunotherapy treatment that would give him the best chance of being rid of neuroblastoma for good. This weekend he lies in the intensive care unit at Children's Hospital of Philadelphia fighting for his life, all thoughts of immunotherapy long since gone. Positive thoughts go out to Oscar and his family. You can read his Mum's heart-wrenching account of the past week here - It all goes wrong in Philadelphia.