Tuesday, 26 February 2013


I am aware that it's been a while since I posted any updates. Truth is despite the fact that much has happened I haven't got very much to say. Truth is I don't want to write it down anymore. I'm living it, but I no longer feel like I need to be reading and writing it too.

Adam has been having a tough time these past couple of weeks. We had stopped all treatments completely for ten days, but as of now he's back on some of them. We are looking at possibly getting back out to Grand Rapids sometime in the next fortnight. Possibly. Hopefully.

Sorry for the brevity … please keep our little boy in your thoughts.

Sunday, 10 February 2013


It must be time that time again. Time for a brief update. And brief it will be.

Adam is not doing so great since returning from Grand Rapids. Three repeat urine samples (I guess one of the 'missing' ones turned up) all tested positive for coliform infection (e-coli), and so Adam was started on intravenous antibiotic to treat it. He then began having issues with his bottom again, and it's subsequently transpired that he may well have a second abscess forming next to his anus; on the opposite side from the one that burst on Christmas Day, and which has now all but healed up. Considering what he went through with the last one I am quite surprised that he hasn't been at all traumatised by the thought of a repeat performance. I know I would be. He's now on another IV and third oral antibiotic for the suspected abscess (it's not well-enough formed yet for us to know that's definitely what it is), however antibiotics as we know from previous experience are seldom effective in dealing with such things. His blood counts are very low, and neutrophils are an unhealthy zero, making him very vulnerable and extremely susceptible to bacterial infection. He's been on G-CSF since Tuesday but it's had absolutely no effect. With all the IVs he's on at present he's having to be hooked up for 2-3 hours daily; yesterday and today that meant being up at the hospital, but whenever possible our wonderful community team are coming out to administer his meds. Eating continues to be a major problem and Adam has lost further weight. Reluctantly we have decided it is necessary for him to have a feeding tube so that we can support him nutritionally. The thought of a second impending abscess with all that will bring finally tipped the scales. He's not happy about the prospect, not happy at all, but he understands. He's had so many false starts over the last four months, a few good days when things looked to be on the up, followed by a few tough weeks when any progress he had made is wiped out … and more besides.

Sunday, 3 February 2013

Home ...

So Adam made it home on Monday … just. No sooner had I started to write the last post about the scan results and his planned return, than he began to experience aches in both arms and both legs. Wednesday (23rd) had been a good day; he'd been in clinic playing Beyblades with the nurse, care worker, and play specialist; he'd pushed his buggy all the way through the hospital and back to Renucci; he'd been downstairs playing fußball with his Mum; he'd been out in the snow, albeit not for very long as it was too darn cold.

On Thursday his arms and legs had started aching. By Friday he couldn't move.

He'd not had aches and pains like this at all whilst he'd been at home -- but then again he was mostly lying down because of the abscess. Whilst it's impossible to know precisely the cause the location, above both knees and in each upper arm, made us conclude it was exercise on Wednesday, coupled with effects of his disease, medications, and lack of activity over the last 3+ months. Because the flights home had been rescheduled for Monday rather than over the weekend, Friday's clinic visit was put back to Monday morning. Adam spent the whole of Friday in bed lying prone on his back; the aches in his arms preventing him from making even the slightest movements without Alison's help.

Saturday the aches had improved slightly, he could use his arms to manoeuvre himself around in bed. However, he now had a temperature.

Not so high as we had to take him to the Emergency Room (which is how paediatric oncology works over the weekend at many hospitals in America), but not far off. One reading would be 38.2° and twenty minutes later it would be 37.6°. When we had all the shenanigans with Adam's temperature in October last year, we invested in the same type of very accurate digital thermometer that they use at many of the hospitals -- Epsom, St George's, Helen de Vos. Oddly his temperature under one arm was consistently higher than under the other, it isn't normally. Eventually, Alison decided enough was enough and called the ER, expecting to be following that up by taking Adam in to have blood drawn from his central line and a peripheral vein, and start IV antibiotics. However, the on-call doctor decided the most appropriate course of action was to continue to monitor and observe. Adam's temperatures were not acute, his neutrophil count (indicating his natural ability to fight bacterial infections) was good, and he was asymptomatic. So Alison stopped packing the overnight case, and went back to keeping a regular check on Adam. As the day wore on, so the temperatures receded. Not heading straight up to the ER had proven to be the right call. Interestingly, had we been here in the UK, I guarantee the doctors would have wanted Adam admitted to Epsom Hospital for blood cultures and antibiotics.

Sunday the aches and pains had continued to improve, but they were still very much present. The fevers had gone completely. Now the diarrhoea started.

It didn't last too long, but it was sufficient to wipe Adam out. He was no longer eating and the chances of getting him home on Monday were looking rather slim.

By Monday morning the aches were still there, improved from their peak but very much confining Adam to his bed and pushchair. He'd had no more fevers, and hadn't opened his bowels since the previous afternoon. Over the weekend Alison had alternated between starting to pack, and giving up at the seeming futility of packing when Adam was having all these problems, one after another, that would undoubtedly extend their stay further.

It wasn't until late Monday morning, after a clinic visit, bloods and a top up of platelets that the decision was taken to make the trip home. It was relatively uneventful; Delta employees met Alison off the bus from car rental and escorted her through to check-in. Quite simply, without their help, there is no way she would have been able to transport four suitcases and a 9-year-old child confined to a pushchair herself. It's a fair walk from the shuttle bus drop-off outside the terminal building to the departure hall two floors up.

Getting through security was 'interesting' (or in Alison's actual words -- a right palaver). Adam was unable to get out so had to be wheeled through in his buggy. Alison had to pat down said buggy everywhere with her hands and then have them scanned to detect for traces of banned substances; drugs? explosives? It took four security guards to ensure the pair of them were no threat to national security.

Adam slept for the entire flight home, and he was even more wiped out when he got home. His sleep pattern was all over the place; he went to bed at 7:30pm, woke at 2am and spent the next 5 hours watching TV downstairs. He wasn't eating and what weight we had got back on him before he flew out to America had fallen off again, and more besides. A few days on and things are now back on more of an even keel. On Friday he slept until past midday, and ate a little lunch and tea. Things are slowly improving in the sleeping and eating department -- last night was his first proper full night's sleep since getting home. He's been playing XBox with Jake, that's always a sign he's feeling a bit brighter.

We've started on the tweaked treatment regime, and on Wednesday he went up to the Royal Marsden to get his weekly shot of chemo. He's been having intermittent abdominal pain, that started quite low down and has moved further up his right side. Alison took a urine sample to the hospital on Wednesday, and it came back positive for infection (coliforms), but he's not really displaying any of the usual symptoms, and the sample was otherwise clear; in particular they would have expected to see white blood cells if it was a urine infection rather than a contaminated sample. So we did two repeat urine samples on Friday, and then two more on Saturday after the hospital lost the ones we did on Friday. And now we await to see what they show, we should have a result within 48 hours.