Line out ...

Adam had his port removed this morning at St George's hospital in Tooting. We didn't realise it's more involved than a Hickman line removal, but apparently it is. The surgeon told Alison this … just to make us feel worse about putting Adam through the possibly unnecessarily procedure. Alison also got quizzed as to why it was coming out so soon. Ordinarily it's done as a last resort, when all other avenues have been explored, and all other treatments tried without success. Instead of four or five weeks, it's been only two-and-a-half since we first took Adam to Epsom with pain and fever. Anyway, following Alison's talk with the surgeon we're expecting to have a sore little boy for a few days.

As Adam's had no temperatures above 38° since Sunday he's actually been discharged from hospital all together. Tonight, fingers crossed, he'll be back in his own bed again. If that doesn't cheer him up nothing will. We'll be keeping a close on eye on him, and hoping that nothing untoward happens over the next few days.

We're due to fly out to America this Sunday. Keep everything crossed people, keep everything crossed ...

Closer ...

Another day the same as the previous. Adam is feeling better, looking better, eating better. Even his temperatures continue to get a little better. Let's not get carried away though. His disease is almost certainly progressing and we'll need to try a different therapy when we finally manage to get back to the US.

Tomorrow is line removal. "I'm going to have that angry medicine again" said Adam. He means Propofol. He is raging when he comes round from the anaesthetic; screaming and shouting. "Why don't they give me something different?" Good question, Adam. I don't know. Maybe they enjoy watching you tell me, no sorry yell at me, to get out of the room, to get out of the building, and to GO BACK HOME!

We've booked flights to Detroit. Seats were getting limited. At first I didn't want to book anything and then have fate conspire against us. However, on reflection I figured if Adam was unable to travel due to circumstances beyond my control then so be it, but I certainly didn't want it to be because his idiot father had left it too late to book anything. We do need him to remain well after the line removal, and not get any more fevers, which sometimes happens as removing the line triggers a reaction. It feels like we're coming round the bend and heading into the home straight. A few more days and we'll finally be on that plane. I don't ask for much, but please everything go to plan this time …

Provided line removal goes ahead without any problems Adam will be formally discharged to return home afterwards. If he's well enough he'll be donning his Ninja suit and hitting the streets for Halloween … so look out residents of Epsom, because Adam could be on the loose tomorrow night after all. Albeit under strict supervision.

Planning ...

Adam had another similar day yesterday; eating fairly well, home for lunch, moderate temperature during the afternoon. generally in good spirits although maybe a little more tired than on previous days.

Line removal is scheduled for tomorrow morning at St George's. There is no easy way to explain any of this to Adam, but nor is there anything to be gained by giving him unnecessary details, and certainly none of the brutal truths. We had a talk about it, he cried a little, we had a hug, we talked some more until he'd got his head around what he needed to get his head around. He's anticipating a couple of days of being uncomfortable, in the same way he was when his hickman line was removed. I nodded and gave him a pathetic "Well let's hope it won't be as bad this time." And he also knows he will need cannulas, and a new central line inserted once we get to America. I smiled and gave him a pathetic "Let's see what the doctors say once we get to America." Imagine trying to navigate an eight-year-old child through this nightmare, when all he wants to do is to be able to go out trick-or-treating on Halloween … which he might still get to. And be at home for his birthday … which he won't. What has my little boy ever done to deserve this shit?

Once Adam's line is out, and providing he remains clinically well, we need to figure out travel plans. Last time we flew with Virgin (who were absolutely brilliant) to Chicago and then drove 3-4 hours to Grand Rapids. But Virgin only fly to Chicago during peak season, and driving conditions are going to deteriorate as we get into the latter part of the year. So we need to figure out new travel plans. BA to Chicago remains an option, but it's crazy expensive especially if we want Adam to be as comfortable as possible on the 9 hour flight. Virgin to DC, or NYC, with an internal connecting flight would be a very long journey, plus there's the aftermath of Hurricane Sandy to contend with. Our only other option is a Delta/KLM flight to Detroit and to drive from there.

We'll figure something out. Because you just do. Because you have to.

Repeat ...

A repeat performance today. Adam's temperature peaked at 38.5° early evening (with tympanic thermometer). Other than that he's been well. He came home for lunch, and spent several hours playing on the PS2 with Jessica. He's playing catch-up; yesterday he was gaming with Ryan, and today he played with Jess for the first time in days. When we returned to the Marsden for Adam's afternoon antibiotics Jess came with us, and the two of them carried on playing until it was time for Adam to settle down for bed.

The fevers have definitely subsided, but now Adam's temperature is grumbling along; normal but higher than Adam's normal in the morning, and elevated further in the afternoon through early evening. Our plan has to be line removal, hopefully we will find out tomorrow when we can get it done. He's been better in himself again, and with his improved eating some of the weight he lost has started to go back on again.

Oh, and we had two bowel movements, so you can uncross your fingers now thanks.

Brighter ...

Adam's been brighter and more lively again today. He was even allowed home for lunch. Ordinarily with the sort of temperatures he's been recording he wouldn't be, but our circumstances now are not exactly ordinary. We're pleased with the way the doctors here have listened and discussed things with us. He enjoyed being back home, if only for a few short hours. For the first time in many days he got to play online with Ryan. It was just like old times; FaceTime and XBox Live.

He's been eating but still nothing like a normal amount for him. Slightly worryingly he's not emptied his bowels since Thursday evening. We've been quicker to dose him up with something to help things along this time, we do not want a repeat of the stomach pains of last weekend. That would really screw things up. So cross your fingers and hope for some toilet action tomorrow people.

Adam's temperature was elevated again this afternoon but not to the extent it has been, peaking at 38.4° with the tympanic thermometer. Things have definitely improved in the temperature department slowly over the last two or three days, but why and where they are ultimately heading I couldn't begin to guess. We shall see what tomorrow brings and take it from there.

We do now have a plan to get Adam to America, but we need him to remain clinically well and for any fevers to be controllable with paracetamol. We have requested a surgical slot for next week to get his portacath removed. Without a central line the risk associated with him flying will be far less and, all other things remaining as they are now, we should get permission from the doctors for him board a plane. Obviously not having intravenous access presents it's own issues, but we will deal with that problem once we're back in the US. Line removal would normally only be done as a last resort; once antibiotics, anti-fungals, and all other possibilities have been exhausted. However, with time not on our side decisive action is required. And if removing Adam's central line is what's required to get him on a plane, then removing Adam's central line is what we must do.

Oddness ...

Adam's been more active and alert again today so far. Jessica has an inset day, so she went in earlier and played the PS3 with him. He's eating bits still, nothing like normal portions, but it's bound to take time to build back up. His temperatures remain problematic. And also odd.

If I say they've been more elevated than the past couple of days you'd rightly think that was not a good sign. However, we've transferred to the Royal Marsden where they use tympanic (ear) thermometers. At Epsom they use (equally expensive) axillary (underarm) thermometers. Our own cheap-and-cheerful underarm digital thermometer, and tempadots that we've also used reliably in the past, have correlated fairly well with the temperatures recorded by the nurses at Epsom. We've picked up 39° and above, both before Adam was first admitted to hospital, and since. Now, however, we are seeing large differences between the 'official' temperatures and those we are recording ourselves. Yesterday, the nurses registered 39.9° and 39.3°. Adam was asymptomatic, wasn't burning up, feeling cold, shivering, or otherwise displaying any visual signs of fever. Our own thermometer gave a reading of 38.3°.

This afternoon after an official reading of 38.8° we got our own reading of 37.8°. Adam's pulse, which correlates very well with his temperature was 110, elevated but not to the extent we have seen previously. This morning we did an experiment. Tympanic 38.2°, underarm digital thermometer 36.6°, underarm tempadot 36.9°, and under-the-tongue tempadot 37.4°. We know from experience that the tempadot has a difference of around 0.5° depending where it's used. I tried the tympanic thermometer on myself; 36.9° in one ear, and 37.0° in the other! Nobody is suggesting that the tympanic thermometers are inaccurate, but as Adam's temperature rises there appears to be a bigger and bigger divergence between readings on different thermometers. Which means one cannot meaningfully make any comparison between the temperatures Adam is getting now, and those he was getting whilst he was in Epsom Hospital.

Adam is still having fevers, that much is true. It's just that we're no longer sure how high they are now … or alternatively how high they were before.

In other news the nurses gave Adam IV paracetamol in the night without Alison being aware, resulting in Adam having a hot flush and needing a fan on to cool him down. That won't be happening again, it's better he's left alone if he's sleeping peacefully regardless of the temperature. And this afternoon, despite us explaining everything yesterday, the nurse pushed his double-dose antibiotic instead of infusing it over half-an-hour. Adam duly responded by sneezing a few times and getting a constricted throat for the best part of the next hour. Alison was outside the room at the time discussing things with the doctor, and only became alerted to what was going on when she heard Adam sneezing. Honestly, you need eyes in the back of your head. It shouldn't have happened, but all of us who have been through this experience know these things do happen. And not just in the UK; there was one guy in Greifswald who used to come round and simply turn off any machine that was beeping … if you weren't on your guard your child's continuous hydration would suddenly come to an abrupt halt!

A little ...

Adam has been a little brighter today. He's smiled and laughed for the first time in two or three days, and has even delivered a few trademark putdowns - almost exclusively in my direction. "Stop trying to be a food critic" he said after I made some comment about my lunch. This morning it was nice to see him having a chat with his little mate Ryan, when for a while he's shown little interest in engaging with anybody or anything.

He's eaten a little breakfast, and a little lunch. And when I say a little I mean a little, but a little is better than nothing. We've started given him liquid nutrition via a syringe, he doesn't like it but he needs it. Since he was first admitted 12 days ago he's lost 2.5 kilos … and it shows.

Temperatures have been a little better, although perhaps that's just a case of wishful thinking. They are still up and down though, and this afternoon he spiked at around 39°.

Echocardiogram didn't show up anything abnormal (and Adam's heart function is still reasonably good). Ultrasound showed enlarged lymph nodes, as did chest CT. These are areas where we know Adam has disease. Nothing else was detected as being suspicious for either disease or fungal infection.

We took Adam to the Marsden just after midday. The ambulance arrived ten minutes after it was called, when normally it takes between one and two hours. We weren't even close to being ready, so got agreement to take him ourselves by car instead. That's what Adam himself had asked us to do in the first place anyway. This morning he was really unhappy at the prospect of sharing a room. As it turns out we're in the MIBG suite at the end of the ward, and Adam has a nice big room all to himself. Not sure how long it will last, these things generally depend on whose need is the greatest.

We've talked about options, and our consultant at the Marsden has emailed our doctor in the US. It remains our intention, and resolve, to get Adam back to the US for further therapy, but it might take a more radical approach to get him there. We don't have the luxury of being able to wait and wait for these fevers to recede … not least because we know they might not.

All-in-all a better day. A little better. A little better so far.