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.