A day in bed

We had a call about the scan yesterday. The radiographer who always looks at Pads' scans said that there were no lumps and no big changes. We've lined up a meeting with the consultant on Friday and Pads wants to come too. Yesterday was pretty much a day in bed for him but his impending visit to school is certainly capturing his imagination. He was asking for equipment, like pens, and a school bag, the latter he'd donated to Asher last year.

MRI scan

Pads went for an MRI scan yesterday. I went back there today to collect an item of lost property and the two adults were talking about how uncomfortable they felt being in the scanner was. They'd both had to 'press the red button' to stop and have a break. Pads just gets on with it. His lips were getting dry but he waited between scans to lick them.
The results came through this afternoon. They showed no spread to his spine but increased tumour activity. This is consonant with his condition.

Risk

The results of the scan came through yesterday. Pads was due to visit the hospital for a pre-chemo check-up anyway. His bloods are holding up well, he's handling the temozolomide and the dose can safely increase in future if they want it to. Pads was interested to know about the scan findings. We'd looked at the pictures and there was not much change from last time, but change there was: a slight increase in the swelling. The opinion from Birmingham was that the scan was not 'classic medulloblastoma', but it did look more like tumour than radiotherapy changes. Although the 'result' sounded uncertain, so some extent, Pads symptoms have been telling their own story for some time: the consultant did not waste any words telling him. He was ok with it, and went back to playing Risk with Llyr and friends. This game was much enjoyed and had been on the bucket list for some time. However, at dinner, when his left hand was failing him with the cutlery, he became quite upset and took refuge in his room.

Today it was the smalls' school summer fayre and Pads managed to get there for about half an hour. For most of it he sat and did codebreakers, finding the noise and bustle wearing.

Still none the wiser

The consultant phoned with preliminary thoughts after the scan pictures came back from this morning. The scan showed up with worse oedema (swelling) than the last scan but they still cannot rule out this being due to previous radiotherapy (!). However, if the current symptoms were 'merely' due to radiotherapy we'd have reason to expect him returning to better health, in spite of the swelling symptoms, which is not really the case: it seems he's increasingly being held together by drugs. They want to do a blood test tomorrow and then do some planning around further chemo, possibly Temozolomide. The scans have gone off to Birmingham though and we're waiting for their opinion on the 'clever' aspects - the 'spec' part, which should highlight fast-growing cells and take some of the lingering uncertainty out of the equation.

Re-calculating

Friday's blog post was admittedly vague giving us a chance to process the information locally and for you to be let down gently, not least if this is your only source. Unlike previous scans, the images were not showing a clear lump, but it was clear that part of the brain is swollen, which is what has been causing Pads pain. The white patches were described as forming a dusting over the surface of the brain. The consultant was sure this is recurrence, coupled with Pads' symptoms of mild neck pain, vomiting and lethargy. No further curative treatment is available. It may be that oral chemo could improve his quality of and extend life, but it may do the opposite... The key thing will be to keep on top of his pain, and we're assured they have a near infinite range and depth of options for that. The purpose of the 'spec' scan would be to confirm the diagnosis and point the way forward. There is also a multi-disciplinary team meeting today which may shed more light.
Pads received the news remarkably well: his first words were about how he'd get to be with Aunty Wendy, whose funeral we'd attended earlier on that day. Then we got onto talking about some of the things he'd like to do while he's able. Although this was fairly cheerful, he, and his sister for that matter, would still rather not talk about it - except on their terms. We've had a fairly awkward weekend of relaying the 'bad news' more exactly.
On Saturday we'd planned a quiet morning for Pads to reserve energy for the rest of the day. Then we remembered he'd wanted to attend the LATCH Brain Tumour Support Group (which had already started across town!). Ally and the rest headed off to Caerphilly for a service at a nursing home. Pads and I went in the opposite direction: Willow's High School, to join 4 others and the redoubtable social workers, Dan and Kay. It was a cookery session: pizza and muffins. Pads wasn't eating anything but he enjoys the company. I got to tell Dan. While he was there I visited a friend and told him. Meanwhile, Ally was receiving her brother and his family who are emigrating to Australia in 2 weeks, and breaking the news to them. We had a calm afternoon with them and then it was time to dine out for cousin Llyr's 18th birthday - at our favorite Mexican, El Paso's. It was another happy time. Sunday was busy, as usual. There were lots of people to talk to. Everyone has been rooting for us and so many pray for us and Pads in particular every day. Given the remarkable series of serious events that have struck our Church members (illness, accidents, etc.) it would have been understandable for the pastor to opt for soothing messages, but we instead have a new series on 'Bible challenges'. He brought a sermon from Genesis, where God asks the newly fallen Adam, 'Where art thou?'. And where are we? Are we hiding from God in the darkness or actively seeking fellowship with Him, in spite of our sin which so appalls His infinite holiness? For He has made a way back to communion with God through his blessed Son, who died, once and for all, to take away our sins, blot out our transgressions and purge our consciences. It is in this 'good news' we glory, and trace the goodness of God through our tragic circumstances. After all, wasn't the greatest good (our salvation) won through the most horrible act (Christ's crucifixion)?
It's the evenings that Pads finds tricky. His mind starts to race before he can settle to sleep. Last night he was writing some of his worries down and Ally was able to address a few of them which helped. Something which worries him is whether he'll be seeing various people who are close to him in heaven (how about you, for example?).
We're working through what can and can't be done with however long we may have left and informing more people who need to know. Moli's school teachers now know, and so does Pads' tutor, who was expecting to come this morning. Instead of that Pads has been cheerfully composing his 'bucket list' (of things he really wants to do/see). Some of them read like as if he's just trying to wind his siblings up ('watch Jaws with Moli', 'get Ash/Bo to have a skin-head') and may require re-interpretation.
We do not stop believing that God can heal Him if it His will to be glorified in this way and are sure that many of you believers are with us in our prayers to this end.

Uncertain results

Pads is still not asking about the results of the scan which we met the consultant about earlier. He will doubtless do that in his own time. I don't know if you saw the 'tweet' earlier but the scan is not clear enough to make a firm diagnosis. Another scan will be done in 6 weeks which will give us more clear evidence. If we waited to go on our big 'wish' holiday until after this next scan, and the scan showed definite evidence of recurrence, the consultant would not be able to write that Pads was 'good to go'. There is a multi-disciplinary team meeting on Monday which may shed more light, but that is unlikely. Pads continues well and in good spirits. He's got two tickets for the game on Friday, donated by LATCH. None of us feel very confident about that result, given the injuries to key front-rowers Gethin and Adam... we shall see...

Ultrasound results

The medical team decided to send Pads for an ultrasound investigation of his tummy. He was pretty nervous about this. For one thing his tummy really hurts under any amount of pressure, for another, he was told he'd need to go down with a full bladder. I'd pushed 300mls through the mic-key tube in an hour and we nervously made for the lift. By the time we arrived at the radiographer he was in quite a bit of distress. 'How would he cope with being probed around his bladder area!?', I thought. The radiographer introduced herself but said she did not ask for his bladder to be full. This was some relief, but we still had to get him to the loo. He walked further then, to the loo and back, than he had done for days!
The investigation, involves sweeping a handheld scanner over lubricated skin, invoked a few gasps, but the radiographer worked expertly around the painful patch. She said she could see nothing of note. So the theory remains that this pain is due to an infection or irritation in his large bowel.
Sarah sat with him this evening for mum and dad to attend the prayer meeting together. By the end of her stint she thought the mic-key site was looking less inflamed. Also, Pads was asking for a cup of tea and hinting he might like a burger - these are classic signs that he's on the mend. Let's hope he finally starts to make some progress overnight and tomorrow.

LP clear

Just a quick message to say that the Lumbar Puncture result is clear. This came through about 11am. It did not really come as a surprise to us because of the 'body language' of the medics. However, it's a relief to think that we can carry on with 'plan b', as detailed in the image in yesterday's blog post. Treatment will start next Tuesday. There is no way of knowing how he will react to this. They're nasty drugs at a higher toxicity to what he's had before. He may be in for one night, he may be in for five.
In himself, he's ok. He is still struggling a bit with a sore back, and it helps if we dose him up and keep him moving at regular intervals as much as he's willing to.

Getting about a bit more

It was hard work waiting this morning for the medics to phone us today. We were supposed to be finding out a bit more of 'what next'. The whole situation can feel quite draining, physically, mentally and motivationally. But we eventually decided to get out and deliver our alotted invites to the annual Summer Conference, being held in Cardiff for the first time this year.
The phone call came after lunch and, in the event, it was brief:

1. The lingering element of uncertainty over the post-op scan had been dispelled and it was confirmed to be clear (dye is injected prior to a scan to highlight any remaining tumour).
2. The histology confirmed that this is just the same type of tumour as the one removed in August 2008
3. We will not find out more re. further treatments until the end of this week or the start of the next one. Our consultant was in conversation with Barry Pizer of Alderhey.
   

Meanwhile, Pads has had a good day. Although by 9pm he was asking for pain relief, really he's not needed very much at all. This was in spite of quite a bit of activity after a slow start. He and Moli enjoyed a visit from Reuben and then we went to Roath Park for an ice cream and a row. After that we went to friends for tea and Pads enjoyed playing on their wii for quite a while.
Many of those who prayed audibly in the meeting tonight mentioned Pads although another older friend, Harold, is just starting an agressive regime of chemo, also for a brain tumour.
We regularly hear of other congregations adding their voices to a veritable chorus of prayer. Today we were assured of petitions from Ireland, Inverness, Swansea and Barnstaple.

Good scan but not a good result

When we had the call to go in for the results we knew it was not likely to be good news. The consultant was pretty frank about things - the tumour appears to have returned in the same proportions within the time that he was off treatment. The prognosis has changed somewhat. The next thing is a meeting with the surgeon this afternoon with a view to operating this Thursday.
Pads was pretty scared but the pastor was able to come straight over and he's chatting now.
Pads asked me to read from Psalm 46 after we were talking about the result earlier. If you are finding this news difficult you might like to scan these verses too.