Edgy

Pads had a fairly busy night last night, dealing with him gungy, ulcerated mouth, but we were able to get snatches of sleep. He was a lot quieter today than yesterday, his condition was worse. All he could manage was listening to the audio book. I scraped a smile out of him with a couple of funny cat videos (see example below), but even the DS could not hold his attention for more than a few minutes.

Cats & Kittens doing funny things

We usually have one visit from a consultant, but Pads has had about four. His 'obs' have just not been great: blood pressure often too low, mottled and cold feet and hands, high pulse, running a temperature. On the second visit, the consultant ordered another antibiotic to go up - gentamicin. We are running the nurses ragged with all these infusions!
The critical period was late afternoon/early evening, when, if he did not stabilise, he would have been transferred to High Dependency, or even Critical Care. Thankfully, this was not necessary. It's too early to say we've turned a corner and it could all still go backwards. His counts have recovered by tiny amounts but he is still very neutrapenic.
With the risk of pressure sores and the like, an air mattress was ordered first thing and arrived mid afternoon. Pads actually finds it makes him itchy, but the sister is adament that he needs it and very pleased he's got it!

Cavilon to the rescue

After a number of hours sleeping, Pads and I were both a bit brighter today. Pads was keen to get out of bed and sit up in the armchair to play on the wii. But in fact his condition is worse today.
After a couple of breakthrough doses of morphine this afternoon for ear pain, Pads' background dose of morphine has increased to 2mg per hour from the 1mg on Saturday. There is no let up at all in the thick saliva - it is really getting to him. He's finding that the nebuliser makes his mouth even drier so that is not providing the relief we'd hoped for.
His skin is also starting to break down in various areas, giving off more pain, although thankfully there are no infections in these sites yet. We're being very ginger about cleaning those areas and applying plenty of Cavilon. cream. We've just changed his mattress for something more comfortable and a 'proper' air mattress is being ordered for tomorrow.
Right in the thick of all of this he's still able to raise a quick quip! The staff are all saying that he's doing as well as could be expected.

Back on the oramorph

Pads has been in quite a lot of pain today - particularly his throat. This is the chemo doing it's job of stripping out fast-growing cells, including the lining of the throat and gut. When codeine and paracetamol were not enough to deal with the pain, most acute when swallowing, the team switched to oral morphine instead. Morphine will make his itching worse, so piriton is also being given regularly. Those two drugs will combine to knock him out somewhat but that's what it takes to get through the next four-five days. At times like this, films and audio-books come into their own to distract and while away the hours: he's got the entire unabridged Lord of the Rings trilogy (about 48 hours) and the Count of Monte Cristo (about 45 hours).
It was really nice to see Craig Bellamy on the ward earlier. Pads had said that he did not feel like seeing him but when we got another reminder I decided to dive out and see if I could get his autograph for Ash, Craig was just right there so I welcomed him to Cardiff and he was quick to point out that he's Cardiff born and bred, adding that he's really appreciating being so close to the Children's Hospital - makes visits like this a lot easier to fit into his spare time.

Last hi-dose infusion

Well, that was the last dose of chemo that anyone expects him to get. Once again, it passed fairly well. Yesterday the nose-bleed was accompanied by a drop in blood pressure but although we had the former, we did not see the latter today. We are thus grateful to be at the end of this week of treatment, each dose being very harsh. It seems like his kidneys were up to it and there were no spikes in temperature or troubling variations in blood pressure. Yet the actual chemo, while risky, is is not the really hard part - that still lies ahead. The consultant is urging us to take him out tomorrow as, from Monday, he's in isolation and will probably spend a lot of that feeling very unwell.

How are you coping?

Pads is feeling quite rough a lot of the time. He brightened up when I was in at 7pm and earlier when I contacted him via Skype during the day. A nosebleed started out of no-where earlier. You get the feeling he's being held together with drugs, now including three antisickness drugs in concert.
He's far from the only patient struggling on the ward. It's hard to know what to say to the other parents, most of whom have no faith. If anyone reading this is prone to bring out the old chestnut that faith is a pathetic 'crutch', many people we talk to, even the health professionals, all recognise the worth of faith in times like this. What are the options? Stoicism? Hedonism? They're far more vapid than the incredible array of despair-busting factors working in the Christian's favour: for example,

For I reckon that the sufferings of this present time are not worthy to be compared with the glory which shall be revealed in us. (Romans 8:18)

and:

we glory in tribulations also: knowing that tribulation worketh patience; And patience, experience; and experience, hope: And hope maketh not ashamed; because the love of God is shed abroad in our hearts by the Holy Ghost which is given unto us.(Romans 5:3-5)

But it seems far worse than crass to reel these kinds of things off in the middle of a parent's suffering... We keenly feel the need for wisdom in dealing with everyone who asks, rhetorically or otherwise, 'How are you coping?'

Settling in

Pads has kept really well, this is in spite of a few nasty colds affecting those around him. He's also had something odd going on with a couple of his toes. None of this has so far got in the way of the High-Dose chemo starting tomorrow. He checked in at 6pm, but was a bit frustrated because he neednt have missed the evening service. He could have had his check-up at 4pm, gone to church, and returned to the hospital in plenty of time to start hydrating him at midnight. Anyway, he's settling in, enjoying the door being propped open for now. Isolation will start later in the week when his immunity is compromised. He will need to be in hospital for up to five weeks, until his blood counts have come back up. Bo and I visited after the service and P'd got stuck into drawing a name badge for the door. He's also decorated the wall with the pictures that came from New Zealand via Meryl.