Bit more chirpy

We're glad that Pads seems to be a bit more chirpy today - perhaps his cold has turned a corner... but the cough is still giving the occasional paroxism. He's been quite busy, with a visit from his nurse to take blood (results say his counts are all fine), beating the play therapist at Skip-Bo (using his patented 'hand holder' - a strip of wood that allows him to view his cards without having to hold them in his left hand), then watching 'Big' with the tutor and all topped off with a trip to the chiropractor.
We're thrilled to see Moli's target of £100 nearly reached on the justgiving page so thanks to those of you who gave for that. Their participation in the race was put in doubt yesterday when Holly's motor couldnt manage reverse. We'll find out on Wednesday if Peter manages to fix it. Meantime, perhaps you would like to suggest something else that Moli could do to justify the sponsorship? :-)

Well matched

The phone rang this morning and it was the sister on Sky ward, 'Could you use another two tickets for the Wales v. South Africa match this afternoon? Someone has had to cancel and they'll just be wasted otherwise.' We already had two grandstand tickets, donated by the same charity. It sounded great but these second lot were 'wheelchair users tickets', and our wheelchair was in the big car at Cardiff Airport, Ally having driven it there to catch a Dublin-bound plane on Friday: there's a big 'cousins meet' tonight. Anyway, the ward were willing to lend us a wheelchair, which was a relief because I was not sure how Pads would cope without it. So, four of us were able to get to a very exciting game. It was just a shame that Wales couldnt quite pull off the victory...
Pads is doing well. His health continues to improve, slowly but surely. The blood results yesterday showed that he's able to reduce the sodium boost, from 8ml per day to 6ml per day. His appetite is still dragging its heels, but he seems willing to try a wider range of foods, rather than things having to be very tasty. The endocrine team are also pretty happy with the current dose of thyroxine.

Enjoying good health

We have been enjoying Pads in good health over the last days. Although his salt is still needing a boost (8ml a day), the blood results came back today after clinic with the news that he can stop the amiloride, omeprazole and dioralyte. We also have a date for a month's time to get the Hickman line out.. although that depends on his salt leakiness improving. This is mainly so that he doesnt have to keep having needles to take blood samples.
Pads' covering of hair is getting more noticable every few days. Last year it came back and then fell out again, so we're prepared but hopeful that won't happen again.

Transfusion for radiotherapy

Pads HB count showed up at just under the required 10 for radiotherapy so he needed a transfusion. He announced his arrival at day beds shouting, 'I WANT BLOOD!' Afterwards he was positively fizzing - stayed up  playing Risk for three hours.
Today was a 'lie-low' day, although he did manage to walk about 150 metres to visit our church friends and back.

IV Morphine

The switch to IV morphine was made when the oramorph was not working well enough for Pads. Especially after being sick, his raw esophagus and ulcerated mouth send the pain score straight to 10/10. Paracetamol still has it's uses though. It helped to suppress his temperature, 38.6 at one point, so that the fever-delayed unit of platelets could be infused. His HB is holding up quite well at around 10, but white blood cells are few and far between.
Pads seemed to spend a lot of time today trying to expel viscous saliva which otherwise bubbles away between his lips. The ward's highly sympathetic staff had to endure quite a bit of this before Pads was able to answer their questions. We're told that this kind of thing can go on for another 3 or more days. Pads' endurance and patience through it is remarkable. This 'mucositis' is all part of the effects of chemotherapy, which we signed up to before the treatment began.

Consulatation and two bags of blood

P continues well.He did dip a bit: once on Wednesday night, when he felt tired early evening and then last night when the PEG hole was giving him some pain as he cleaned it...., 'oh I wish this all hadnt happened' sort of talk. In both cases it didnt take very long to be back up and bouncing, but it's hard to know what to say sometimes in the midst of these troughs.
After giving a blood sample, P went to the play room and the parents were asked to give consent to the next rash of treatment. His counts are too low to be starting this Sunday, so it'll be from the 15th. He will get the first dose on the Monday. There are three days of a 3 hour infusion of Carboplatin, and then three days of two infusions, 3 hours of Thiotepa and 3 hours of Etopaside. By the end of which he will probably be in isolation. Three days after that, on the Tuesday following, his stem cells are given back (an autologous transplant).
The blood results came back showing he's coming up on the neutrophils (0.7 - anything above 1.0 is good), HB was 7.3. This triggered a blood transfusion. Two bags started at about 7:40pm last night, finishing at midnight. We were in his least favourite room (bit claustrophobic) so he was strongly inclined to stay awake and go home to bed. Thankfully the transfusion passed without incident and now he's in good shape for a few days of normality, we hope. Having said that, he's currently in the Dental Hospital waiting for someone to pull an infant molar. The adult tooth has erupted beneath it without successfully pushing the smaller tooth out and it's locked in place. Our dentist had warned that this tooth could easilly cause infection if it remained or came out during chemo.

The power of red

Pads was quite worryingly flat today. We'd thought to get his blood count read today. When we phoned up to organise it, the nurses said that yesterday's result was 10.5 so it was unlikely he'd need a count or treatment today. Well, I knew that we'd not done a count yesterday because I was with him all day and he didnt go anywhere near the ward. After some enquiries, it appeared that this was the result for the sample that was taken on Monday. Apparently there are problems with the pod transport system, where items are blown along pipes around the hospital, rather than a porter having to carry them. But the couple of other results that were showing up with yesterday's date all had the sample date noted with them. Even though the outcome was not serious for Pads, it could have been. Apparently an incident form has been submitted about it. When we arrived at the ward, Pads was very weak. He needed to steady himself on my arm just to walk from the car to the lift and so on to a seat on the ward. Giving a sample is pretty quick and painless through the hickman line. He was offered to wait for the blood result but I decided for him and we toddled home. I'd left the car, thinking we were going to be quick, parked outside with only the disabled badge to defend it from the traffic wardens. The call came through a few hours later to say that his HB was 8, which is the threshold below which a transfusion is triggered. Seeing as his counts are heading downwards, it was agreed to give one unit of blood today. This took an age to arrive on the ward so I felt even more justified in not hanging about for that either. The transfusion was finished by 7pm and he was a different person, far more lively and even wanted to walk home. In fact, his mum had already left to pick us up but he'd got half way home.

Blood on the way

It was a peaceful night. The counts are down again. Neutrophils to 0.03 again, down from 0.1 yesterday (they're supposed to be over 1). So the G-CSF has not kicked in just yet. His HB has also dropped to 7.8 today so that takes him below the 8 threshold and so 2 units of blood are on their way to x-ray en route to Pads.
His temp has just been taken and it's 37.9 (up from 37.7 earlier).
There's still a lot of pain around his tummy area -wincing a lot under the lightest of touches by the doctor. Pain scores vary between 3 when he's still to 5 when he moves about. We'd like to be moving off morphine, but not yet.
The teacher and play people are about but just a sniff of activity, like cleaning the mic-key button or sneaking down onto the floor (while mum was out) to be ill, is enough to keep him quiet for a while.

Doing ok overall

Thankfully nothing much to report from the last few days. Pads had a visit from the nurse yesterday to have his central line flushed. The blood goes a bit stale in there... His blood counts are good though and his energy levels are ok - survived a really lovely neighbour's evening last night with carols and a Christmas message from Mr Higham. Earlier though, we were about to go out to a shop together when P suddenly came over all flustered and hot. He stabilised quickly, we decided to formulate a 'Plan B': I went to the shop and the others wrapped presents.
He's still not eating much - cerial for breakfast on Sunday was a bit of a flash in the pan.

clear scan

We're very pleased and thankful to God that Pads' scan came back clear, as you may have gathered. The result was released sooner than expected. If the result had gone the other way, straight after all the treatment he's had, it would have been quite a shock and the medics would have been scratching their heads. But nothing of it. The clouds are parting, just in time for birthday and Christmas.
His blood counts are recovering well too, and, though he didnt make it to school today, he's been fairly active: jigsaw, air-fix, reading, and he came out to the PTA Pantomime tonight. He's also been working out pretty hard on the wii-fit balance board (that Al got for her birthday) - top scoring on lots of things. In fact, as I put him to bed, remembering that I got the wii to encourage his physical activity while on treatment, he asked if we were keeping it - bless.

Moulting again

Neutrophils: 0.47 (improving)
HB: 11 (ok)
Platelets: 27 (poor)
Thus he's been in for a platelet transfusion today. Perhaps the donor was bald because tonight P's hair fell out again. Seriously though, he was very distressed about it. To finish treatment bald when you've been growing it happily for his entire chemo was as gutting as it was unexpected. Last Christmas he was bald from the radiotherapy. At least he'll look more the part when he goes to The Joshua Foundation sponsored events over the next couple of days.
Of course, it doesnt fall out all at once - the sides and patches of the top were still wanting to stay put for now so Ally got the clippers out and completed the job. Feeling rather light on top, he's gone to sleep using my old scout camp technique of wearing a cotton t-shirt on his head.
Asher has had a quiet day off school. If he has a good night he should be back in school for most of tomorrow.

Final treatment day

Pads was quite exhausted at the end of this, his final treatment day. He was very good indeed for his vincristine and the needle it required. At the 15th day since the start of his cycle his blood results show him as quite low on all counts. 0.3 neutrophils (supposed to be above 1) and just above 8 for the HB. So the plan is for him to have blood tomorrow. Hopefully he won't get the new resistant strain of swine-flu hitting Cardiff!

He could be in until Tuesday

Pads could be stuck in for another few days. The fact is that he's not managing his own fluid balance because so much is exiting before he gets to absorb it. The blood results from this morning showed that he's ok on most scores except white blood cells. The lomustin (chemo) kicks in around now (at week four of the cycle), plus the flu knocks your white blood cells, so these are taking a hammering. But there are signs of improvement with his chest and his spirits are still bright - probably brighter than the kitchen at home tonight, which was decidedly lack-lustre... Moli and Ash are both low, Bo has been better but is still not quite right. He managed a dog walk with me this morning. We enjoyed testing branches to see if they were rotten by jumping on them. The springy ones were like trampolines and the rotton ones just broke, but were fine for a bit of 'log rolling'. Then one of our friends took him to play at their house for a couple of hours as he's pretty much through.
The parents are not too bad at all by now - still coughing and feeling occasionally droopy - nothing new there though...

Some improvement

P has had no calpol since 4am and no temp spikes, so the only thing keeping him in is needing IV fluids. There was nothing nasty reported in blood cultures so that's good news too. They're concerned about his diarrhoea (sorry!) but it's induced by the current drug cocktail, and by the flu. The fact that it's swine flu, finally confirmed by the consultant today, is better than it being other forms of 'flu-a' as it is known to be less nasty than the others. His chest was not quite sounding normal so looks like he will need to bring some anti-biotics home. But flu symptoms come and go: they can't commit to saying he'll be well enough to go home today or tomorrow. Bringing up a lot more spit today. Bo is currently top-scoring on the temp front - with 37.9 - just gave him calpol.

update from the isolation room

HB is 8ish so that's pretty low, platelets are fine but neutrophils are 0.25 - taken a bit of a plunge since Friday. Whether or not he's got swine-flu, it's just as well he's getting treatment.
Only I'm allowed to be with Pads so plan to swap with Al later. If you're in the area, don't try and call in on the ward because they won't let you in.

8.1

Pads' HB was down to 8.1 this morning and since it was only heading in one direction, i.e. down, the medical staff agreed to line him up for a transfusion. He's had the port accessed (i.e. they stick a large bent needle into it) to get the blood for testing. He would have had a finger-prick but with the expectation of a low count requiring a transfusion and having chemo tomorrow, it saved him one more 'sharp scratch'. He'd quite like to think he only has four of these left, but there will be more even after treatment ends.
Meanwhile, the rest of us have to have the flu jab, just by dint of being in close contact with him - Boaz and mum were lined up today and handled it very well.

on a roll

Another good day. He slept well and went to the holiday bible club where he took a full part, drank a cup of tea and ate a bag of sweets! He managed a finger-prick for his blood test. It didn't take much to persuade him and it all went off without a hitch.

His results came back showing that he is still neutrapenic and slightly low on the platelets, but his HB is better than it's been for months.

Interrupted nights but good days

Nothing terrible, but Pads has woken during the night, which just cuts into his reserves. I wanted to motivate him to do more and so got a Wii in, much to the delight and surprise of everyone. Sure enough, in spite of waking at midnight Sunday, and not sleeping much between 3 and 5am, he was down, looking slightly dazed and drawn, at 8.30 Monday morning! The other boys had a visit to a friend's house planned, so P was left to wave at the TV screen for most of the day undisturbed. This was way more activity than could have been expected without said games console. Today has been similar although more inclusive of the others and Pads has generally been feeling quite good too.

go/no go? no-go

We took a 'rain check' at noon after he'd been to see the consultant and had his chemo. We deliberated for a while but decided to take the low/no risk option of keeping him at home.
One of the scarier bits of news today was that his bloods were actually quite low on many counts today. Credit to the Dr last Sunday who could not account for the massive improvement reported by the previous count. That must have been some kind of mistake because his counts today are 'on the floor'. He would not have fought off the infection without that Dr prescribing anti-biotics and he is quite anaemic. Added to the stuff I mentioned this morning, although we were a bit torn, it was a fairly easy decision not to take Pads east in the end. Hopefully, a quiet, recuperative sort of day in prospect.