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.

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.

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.

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.

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.

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.