Scans ...

Dear All,

Adam and Alison are due to fly home on Monday after a fairly successful week in Grand Rapids. It would have been sooner except for the fact their tickets came with a clause that return within 7 days carried a hefty penalty fare. Not that either or us had studied the Terms & Conditions. Not to worry, a day or two is neither here nor there in the bigger scheme of things.

Scans are predominantly stable. There is one lymph node that is reported as being slightly larger than before; it's not the biggest in absolute terms, that one has remained unchanged. Skeletal disease is stable. There are no new areas of disease. Blood and urine markers remain at the same levels as December, which for the urine is massively elevated. The most pronounced change was in bone marrow results. When we took Adam to Grand Rapids in November near certain that his disease had progressed, confirmation of this was found in his bone marrow - one sample contained 100% neuroblastoma, and the other 80% (samples are taken from the right and left side of back of the hipbone). The results from this week were 30% on both sides. Hopefully, a very good sign. I say 'hopefully' because only taking samples from two sites means it's always possible to get a result that are misrepresentative. However, looking at the pattern over time, and given there was clear improvement on samples from two disparate sites, it appears that something is working.

The upshot of these results is that we are keeping the treatment regimen broadly the same, except for a couple of changes. So far since last April when Adam first experienced widespread progression, we have never quite managed to achieve stable or better in his bone marrow and lymph nodes at the same time. That's the goal with making these changes.

Adam has a bunch of aching limbs again; it started yesterday and has worsened today. We're hoping they're just a result of him being up and about, and a lot more active over the past few days, particularly on Wednesday. In any event they've slowed him right back down today. He's also tired, having not had a full night's sleep since arriving in the Grand Rapids, and then waking this morning at 5am because of his aching legs. He did ask his Mum why he's alright at home, and gets aches as soon as he goes back to America. His powers of recall don't stretch back far enough to remember that he ached the day after getting back home last time, having walked a long way through Detroit airport.

Talking of Detroit airport, a while back I asked on here whether anybody had any connection with Delta, the only carrier that flies direct from London to Detroit. It was a bit of a shot in the dark, but I'm so glad I did it now. They have been tremendously helpful to us. This time round when Alison and Adam arrived at Detroit they were met by two employees who helped transfer them, and all their luggage, right through the airport and on to the shuttle bus to car rental. So a big thank you to Delta Airlines! And a big thank you to whomever first put them in touch with Adam's Appeal!

I must also (again) thank people who raised money for Adam's Appeal, and the NB Alliance for supporting us. Without the support of everybody who donated, collected, bag-packed, baked, walked, ran, hopped (our first fundraiser the bunny-hop at WFIS!), sang, and a multitude of other things besides, we would be in a even more difficult situation right now.

Finally, whilst I'm on this thank you spree, I have to thank Dr Sholler and the team at Helen De Vos for taking Adam into their care, and looking after him. Dr Sholler has an incredible dedication to seeking out, and developing, better treatments for children with neuroblastoma. She undoubtedly has her detractors amongst the wider neuroblastoma medical community; she ruffles feathers. But there isn't anybody else I'd rather have in Adam's corner right now.

Oh, and here's something from the archives … a photo of my kids handing out stickers at that first fundraiser back in March 2010!

Best Wishes,
Nick

Briefly … Again ...

Am aware I haven't updated in some time. Have thought about it a few times, but not had sufficient impetus to actually follow through and compose an update. First things first, Adam is doing quite well at the moment. Which isn't to say everything is rosy and plain sailing. All things are relative, and never more so than when your child has Cancer. Tomorrow will be the twentieth consecutive day that he'll have had his abscess/surgical wound repacked and redressed. Aquacel twirled and pushed as deep as possible into the cavity with the aid of plastic forceps isn't anybody's idea of fun. The purpose by the way, as I didn't have a clue until I was told, is for the wound to drain completely and heal from the inside out. Today was the first time he's managed it without the aid of Entonox. It is healing, and even to my very untrained eyes it looks so much better than it did even this time last week. And he's so much more comfortable too, even able to sit up properly when he feels so inclined.

He's also up and about more these days, definitely more mobile, and willingly so. Eating has improved tremendously in the last week; he's still way down on where he was before in terms of weight, but these past few days we've actually started to go back up a little. Only time will tell how far we can get until something crops up to set him back again, as that's been the recurring problem of the last 3+ months. At the moment though we're just taking things one day at a time and enjoying seeing a little bit of the old Adam coming back; funny, cheeky, and generally abusive (in a good natured way) towards his Dad. He's been spending a fair amount of time on XBox Live with his partner in crime Ryan, and that's always good to see too.

On another positive note Adam hasn't experienced any pain at all since returning home just before Christmas. His blood counts are weak though, a combination of the amount of disease in his bone marrow, the effects of a long history of treatment, and the continuous therapy he's on now. His neutrophil count had been holding steady at around 2 over the past fortnight, almost certainly as his body attempted to ward off infections around the open wound on his bottom. However, on Monday it fell very low to just 0.3, and so we've started GCSF injections to try and stimulate his body to keep producing those white blood cells.

On Sunday Alison and Adam head back to Grand Rapids to see Dr Sholler, undergo bone marrow biopsies and get a PET/CT scan done. The results of these will determine where we go next in terms of treatment, and whether or not Adam is in for another lengthy stay in the U.S. Our fingers are crossed, but we take nothing for granted. He's looking and feeling better and that in itself is great … but it doesn't actually mean anything in respect of what next weeks investigations might show.

Briefly ...

Just a quick update to say Adam is slowly recovering from the abscess surgery. He has the open wound repacked and dressed daily with the aid of entonox to manage the pain that this brings. Today we took delivery of a cylinder at home, courtesy of our wonderful community nurses who have been on the case for the past few days; so now Monday to Friday he can be seen to at home. The healing process is likely to continue for some weeks yet, and each time he empties his bowels the packing is forced out, the wound soiled and he must be bathed, cleaned and re-dressed. His course of oral antibiotics finishes this weekend.

On Monday Alison took him to the Royal Marsden for IV Zoledronic Acid and Vinblastine, which forms part of his current treatment regimen. He's not been doing much, but has managed XBox and this morning had a little game of Monopoly with Jake. Eating continues to be a big problem, and hard work for Alison and I. And he needs to start becoming a little more active now the residual pain from the abscess and wound is receding; again it's our job to push him into getting up and about a little more each day. It's been much the same for the past three months, but no sooner do we make some progress than something else crops us to knock Adam right back down again.

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 ...

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.

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.