Friday, 25 January 2013

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,

Tuesday, 15 January 2013

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.

Friday, 4 January 2013

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.