New arrival in London!

Email from Peter (my father in law):

Very pleased to pass on the news that a son was born to Victoria and Will this morning at 0115. Baby weighed 6lb 9oz (2.98kG) and is in good form but frequent attention because of long labour. Victoria and Will both very tired. Both Will and Vic too tired this morning to go through their short list of names but will do so soon. Temporary name 'Mushka' (which is Russian and means a 'bug'! Vic has called him that since she knew she was pregnant!).

Fantastic news!

Hair loss commenced

Pads hair is starting to fall out. His first radiotherapy was on the 1st and now it's the 16th so he's hung on to it for a couple of days longer than expected! Ally bought him a cosy hat at Malvern the other week but he needed to start wearing it _after_ it's all fallen out!
I'm impressed with him today having eaten quite a bit (e.g. leek & potato soup tonight which I spooned into him as he played StarWars lego), been out for a walk and having gone tonight to the Welsh Bible study in spite of seeming under the weather.
Wonder how much hair he'll have tomorrow morning...

Medulloblastoma

Cancerbacup is a good website about it. The oncologist said that they have to treat every case as pretty much unique, so, until they have refined the diagnosis (results next week through sending a sample off to a specialist centre) we will have to wait to find out how they intend to proceed. They have to wait at least a month for us to fatten him up anyway.
Pads is really unaware of all this in as much as all he really knows is that he will need further treatment. He is exceptionally relieved to have got through today with having the staples removed. In all he had 37 but it wasnt the quantity that scared him, it was having had a Dr remove the drain and put in a stitch without sufficient pain relief last Thursday. This so traumatised him that he has been unwilling for anyone to even hint at touching his head and today he was hysterical at just seeing the nurse. After an hour I was called over from work to reason with him. I negotiated starting with just getting 4 out and, with plenty of gas and air, and with being able to control the staging of further staple removal, he got through it without lapsing into terrified mode.

malignant tumour

Just to add a small bit of detail to the tweet announcing the histology earlier.
Pads had a good night - still waking up thinking someone's going to check his obs but that's getting better. He walked slowly all the way to the hospital which was remarkable and he chatted all the way too. The neurosurgeon is still concerned that hydrocephalus may recur so we're keeping an eye out for headaches.
I'll fill in the name they gave it later but Pads is being lined up for various scans and therapies. These interventions will have to await him recovering strength so that may take a few weeks. The oncologist said it had probably been growing for months rather than years. In the mean time they are sending it on to getter a better fit on precisely what type of cancer it is. That will determine how they order the treatments.
This general type of cancer can spread along the spine, but not to other organs, so they will scan to see if there's anything there, although surgery can 'muddy the waters' a bit making it hard to tell what is lump and what is leftovers.
Bearing in mind that some cancers can move quickly to take over the whole body, this is not the worst news but it is a far cry from 'surgery was enough' - we're looking at 6-12 months of treatments which will have a major impact on lots of things.

"My flesh and my heart may fail, but God is the strength of my heart and my portion forever." Psalms 73:26

Pleasant day

So Pads wanted to go to church this morning, and, although he didnt make it to Sunday School or the evening service, in many ways it was a fairly usual sort of Sunday, with 15 for lunch and afternoon tea. This is him being tended by three cousins and sister. He had plenty of opportunity to catch his breath during the day but didnt spend much of it sleeping. I played him at chess and then my sister arrived with a get well card kindly signed by many of the Ospreys players, this followed the picture my other sister got at the Monmouth Show last week (signed by the likes of Neil Jenkins). He is still pretty gutted about not being able to play rugby for a year but I clarified that it was only the full-contact version that they play in his school that was outlawed. The consultant even said he could do Taikwondo if he wears a helmet (this has been revised following the diagnosis such that they dont really want him involved in contact sports)!
While with mum he was gathering his thoughts about what has hit him over the last week or so. Some of it happened so fast... For example, Wednesday 20th August: one moment he was being told he'd have a scan the next day, the next thing he knew he'd had the scan and was being lined up for surgery that very night! This after 14 doctors had examined him and given their opinion that it was 'muscular skeletal'. We do not hold anything against them because the vital symptom of raised pressure behind the eyes was checked but fluctuated, making it hard to spot.
Anyway, now we're approaching the full diagnosis after the consultants meet tomorrow. We may not hear their opinion until the afternoon but, as soon as we do, I'll post a 'tweet' about it so keep an eye on the posts below my photo on the left or look on http://twitter.com/agentjohnson which I can send to from my mobile.

Out for the afternoon

This is Pads at the IKEA playground, laughing at his siblings getting bounced on the see-saw. He had wanted to go for a curry but we couldnt face the slightest risk of him getting food poisoning so thankfully he settled for Swedish meatballs. We're trying to build him up again, without just plying him with chocolate/sweets. He's lost weight, muscle tone, balance and confidence.
Earlier we'd gone to Penarth to take in the sea air but although it was a lovely day, he really felt his weakness, with so many children running around having fun, himself being pretty much stuck in the wheelchair. It was very warm too.
When we got home he was cheered up greatly to see Uncle Neil and Co. returning from Canada with a moose candy dispenser for him. Overall, a good day.

First time back together since Sunday the 17th

Very nice, very thankful to be all home, enjoying rabbits, family worship, tasty treats, our own beds... except that Pads is in the spare room which is even better in some ways, quieter and more private. He's tired, thin and weak... but alive. I often ponder what kind of state he would be in by now if he hadnt been operated upon... Mum really needs an early night too. She's been surviving on broken nights too, with a small nap in the afternoons to see her through.
One other thing was his visit to the optometry clinic this morning... they think the double vision will correct itself by the time he is due to go back for another appointment in a month (i.e. to the optometry clinic - still not discharged from the hospital).
We are very grateful today, once again, for childcare and food help in various generous ways. Also the messages of encouragement continue to arrive at regular intervals. For example,

I have been greatly blessed in reading a little book by Mrs Howard Taylor called The Untroubled Heart. It has helped to put so much of what is happening in your lives and mine, at the moment, in perspective. We believe in the sovereignty of God but it is not until we are tried and tested in the circumstances of life that we truly learn to trust them all to the Lord and see His providential care shining through our circumstances. "The beginning and the end are gloriously certain, but the pilgrimage of life lies between, and the difficulties to be faced are neither few nor small. What lies between the beginning and the end of our Christian pilgrimage? A glorious sufficiency of divine sustaining! 'All grace' on the way to 'eternal glory.' Peter 5:10 'The God of all grace, who hath called you unto His eternal glory in Christ….' (Mrs H Taylor calls it the Bridge of All Grace) The provision is complete. There are no gaps. Everything that comes to us is by the will or permission of God. We must see every detail of our lives in this light." I am coming to see the difference between stoically accepting our circumstances – which Christians can do too – and standing on the Bridge of All Grace which He has provided for us to carry us over the trials of life.

Pads escaping

Mum is enjoying this but Pads spotted me with the camera so you just get a kinda smirk... I was guarding the car from the rabid Apcoa folk.

Short clip of the horizon aboard Holly

Lovely sunset aboard Holly - not fantastic quality as from the stills camera but you get the idea.

the return of pads

Yes - I know this doesnt look like Pads but actually you can spot him there in the background without his head bandage. Foreground is 'Sam' - been through thick and thin with him, rests on him every night as an extra pillow (I wonder if he'll go for less pillows now the internal one has been removed...)
The drain and bandage came off this morning. He was assessed by the surgeon who had put the drain in. This Dr revealed the dressings and was very pleased to see no sign of leakage (in fact I'm sure he said 'beautiful' at one point). Before anyone had acted on his instructions to remove the drain, the surgeon who removed the tumour came by and before Pads had much time to get pain relief in his system, he was lying very still but very loudly yelling as the drain (two staples) was taken out. Poor lad - that was pretty traumatic. But he fed himself twice today, double vision is lessening and then there was the walking. His first steps today were very wobbly - at the behest of the physio. His 'carrot' is building towards climbing the stairs tomorrow: if he can do that, he can get 'home leave' over the weekend. The second walk was better. By this evening, after attempting to sleep for an hour, wriggling in the bed, I suggested a trip down the corridor and he was up for it. We visited the nursing station, 20 metres away, much to their delight. He felt so good for that walk. He's worried about further staple removal (on Monday, God willing) but we've reassured him that those ones will be easier - with pain relief! We think the hot and cold feelings he's getting are related to the steroids, which he's being weaned off slowly, so that was improving too. We'll have to see what kind of night they have. Last night he got so hot he was flapping the covers like mad! At least the 'loud' child in the corridor has been replaced... Anyway, the fact is, tonight the sense of relief and pleasure in the room is palpable.

Dizzy

Ally (Pidge to many) and Pads didnt have a good night last night but another quiet day viz visitors ends with the hope that he's continuing to improve. He was tired and listless - often feeling hot in spite of not running a temperature, so much so that it kept them awake. But the major headline is that he was disconnected from the shunt system. The pipe in his skull should be removed tomorrow morning which will free him from the large bandage on his head and will constitute another step forward. Speaking of steps though, he cant take any of them with out leaning heavily on someone. He's very dizzy, weak and unsteady on his feet. It is lowering his spirits but I try to encourage him to be patient with a verse we learned recently...

I waited patiently for the LORD; and he inclined unto me, and heard my cry. Psalm 40:1

He needs more rest again tomorrow so we'd be greatful if you could hold fire again if you were hoping to see him.
One visit we couldnt deny him was his bosom buddy from school - they chatted quietly for a good while. His siblings only saw him briefly, partly to hand over the ginger-bread 'P' that a cousin had made - it made him smile broadly and was snaffled soon after.
We're so greatful to everyone for their messages and prayerful concern - it is such an encouragement as we await the histology results. Talking to the nurse on the way out tonight it sounds like we'll get 'weekend leave' rather than a full discharge on Friday.

getting 'Paddy' back in phases

When I left them at 10:15pm, Pads had been much more like his usual self with dry/cheeky comments and 'the grin' was making a regular appearance. He was especially amused when I passed on Shane's message that 'the people of Ireland are cheering for him and he is getting more attention over here than our three Olympian medalists!' (the boys have been avid consumers of the Games). All this added to a much more positive day which had started quite tearfully in fact. But before he could spend long in the doldrums he was whisked off for a CT scan in the morning and this showed that he had had no bleeding inside his head - everything looked as normal as it would after such surgery. The lack of visits in the afternoon seems to have really helped - he admitted it was 'probably better' like that. A couple slipped through but thankfully didnt stay long. It's amazing how one's immediate family (especially parents) can stay indefinitely with no 'wear and tear' but 15 minutes with someone outwith that circle can be a set-back. So thanks for everyone who managed to heed the plea and wait. I think we're needing to operate the same way for a few days while he gets his strength back for whatever's next. There's a multidisciplinary team meeting next Monday so we should know more after that. In the mean time, Pads would 'just like to get better' but we've been pointing out that this is happening, in small but significant steps. For example, the cannula in his right ankle was removed this afternoon. He also has had his head drain valve shut since 5pm (ish) with no sign of the headache we were on the lookout for - this means that the fluid is flowing around his brain and spine as it should. If this continues until at least tomorrow afternoon then they may well remove the shunt - can be done on the ward - no need for another op. They are talking about discharge (or at least home leave) for the weekend, which is pretty amazing but it is true that children recover much more quickly than adults.
I hope he gets a decent sleep tonight after missing out last night. He couldnt sleep this afternoon so I gave up trying to encourage him to! Instead of this he enjoyed the calm in the room to play with a gameboy and watch a couple of films (note the difference to yesterday) - the ward is well equipped with this sort of thing. Ally, having refueled with a break at home, only 10mins walk from the hospital, will once again stay with him tonight, kipping on the chair-bed in the room.
We're being so well supported with good wishes and pledges of prayers - it's so encouraging. The practical help is continuing to flow too - food needs and child-care are all in hand so we are very grateful for that. For example, each night's evening meals for the family have been or are going to be provided for by friends.
Anyway - I'm going into work tomorrow so had better sign off there. Good night!

bit of a disturbed night

Ally says that they both had a disturbed night last night due to the heart monitor alarm going off as Pads relaxed - not to mention the hourly nursing observations being taken. We were thinking that a day or two with limited visits but now that's compulsory - please bear with us on that.
Another neurosurgeon came by and did all their checks (for example, asking Pads to push with his feet, follow a moving finger with his eyes, squeeze both hands) and they're convinced he does not need another scan which is good news. His tight chest has eased a bit and they are sure that his double-vision will also improve with time. In himself though he's tired and longing to get better - didnt even want to use a PSP!!!
Friends have assured us that guardian angels attend our little ones which is a lovely thought and reality - but God's 'presence and promise' are even more wonderful; for example (as someone sent via sms today):

Fear thou not; for I am with thee: be not dismayed; for I am thy God: I will strengthen thee; yea, I will help thee; yea, I will uphold thee with the right hand of my righteousness. (Isaiah 41:10)

Furthermore, as someone else kindly wrote...

Was driving past the hospital tonight thinking of you and just had a thought of a hymn which I'm sure you've already thought about but a few lines struck me as I was singing them to myself and I wanted to share them with you.
It's no. 87. 'Great providence of heaven'. I know you know it really well so not going to write it all out. Just these bits:

"fulfils the mighty plan Of His great love"

It struck me that it is not just a plan - it is a *mighty* plan. A plan that has as it's underpinnings Gods great love and care for His people.
Then

"and then the tale of wonder shall be told beyond the veil"

I thought - it's not going to be a 'tale of suffering' or a 'tale of trials', it's a tale of *wonder*. Thinking 1 Cor 2:9. We shall see with complete and utter amazement everything working to our good and the glory of God.

He will not fail, nor fail us.

bit of a dip

It was lovely to see Pads broad grin on several occasions today but between about 4 and 7 he had a real dip. Probably the visits wore him out but it didnt help that his move at 2pm happened when he might have been setting off for an afternoon nap. He was also complaining of a tight chest. The neurologist, neurosurgeon and nurses checked him over but found nothing and they're mystified by the double-vision. He is being lined up for a CT scan tomorrow to reassess things. It seemed that once his codeine had sunk in he perked up a bit - back to his cheeky self by the time I was leaving to partake in BBQ & NASCAR at Jo's... He's strungling to come to terms with 'superstar' status - has become nervous about what I might be saying about him on here. I intend to show him everything when I get a chance.

Another day of progress

The plaster covering where his arterial line got pulled off today and he's not getting drip-fed morphine. He's still got his PCA (patient controlled analgesia) but that is not getting used much. It looks like he's going to be changing ward tomorrow.
Yawning now, reflecting on a day of pretty strong emotions for me. Ally chose to stay with Pads rather than go to church which is fair enough - I think there would have been a lot of blubbing and certainly not just from her. I ended up stayed with her and Pads through the evening service too and read Psalm 46 with them. This is the Psalm that he recited at the top of Pen-y-Fan when we were getting pelted by hail in a white-out earlier this year.
Thanks Bethan for donating your autograph of Tom Baker to the cause of his restored health (he was my favourite Dr actually).

Ally met the consultant in the concourse

The consultant let slip that we would be meeting oncologists so it looks likely that they think there's something malignant about it but we really just have to wait for the lab results which could be several days. Pads has to get stronger for whatever might come next. At least this further prepared us for bad news after we had been clinging a bit to them saying he probably had something benign.
I have to say it's not very easy being in church when singing hymns like 'I saw a new vision...' (see below, by our Pastor Emeritus) like we did this morning but I also have to say that I did see something in the Saviour I'd not seen before - something like a profound and expansive view of His eternal glory, not visible except to the eyes of my soul.

I saw a new vision of Jesus,
A view I'd not seen here before.
Beholding in glory so wondrous,
With beauty I had to adore.
I stood on the shores of my weakness,
And gazed at the brink of such fear.
'Twas then that I saw Him in newness,
Regarding Him fair and so dear.

My Saviour will never forsake me
Unveiling His merciful face.
His presence and promise almighty,
Redeeming his loved ones by grace.
In shades of the Valley's dark terror,
Where hell and it's horrors hold sway,
My Jesus will reach out in power,
And save me by His only way.

For yonder a light shines eternal,
Which spreads through the valley of gloom.
Lord Jesus resplendent and regal,
Drives fear far away from the tomb.
Our God is the end of the journey,
His pleasant and glorious domain.
For there are the children of mercy,
Who praise him for Calvary's pain.

settled

It has been another hard day for Pads but he's very relieved to have weed. Sorry if that's too candid for you but it was a major worry as he had a lot of pain as the catheter was removed so the threat of having another one in if he didnt pass water soon was looming large. He's being brave and progressing very well indeed, according to the nurses. I reassured him that although he might not think he's doing well he could be unable/unwilling to move as much as he is. In bed, for example, when the nurses needed to change his sheets under him he could hold his pelvis up etc to help them slide the covers around. He may not see how he's being brave so I told him that he could be really complaining at the trial he's gone and going through but he's remarkably patient. Some children are terrified of being moved or even touched, I was told, because of the pain it causes or might cause but pads meets the pain twinges and sees them pass - just as he's been doing for the last 3-4 weeks in fact. Sure he yelps when the pain comes on but he's not remotely bitter or harsh. I have also told him it's OK to _not_ be 'brave' too in case he thinks that it's wrong to cry - I expressly said that he should feel free to blub as much as he likes and no-one would think the worse of him - least of all me.
The nurses confirmed that he could be on his way to South ward by midday tomorrow. They're trying to seek him out a single room because the environment is so important to his recovery. With the nurses and Pads' agreement mum is catching 40 winks in the play room tonight but not going anywhere far from him. Before I went tonight I was trying to help him see how many people are praying and sending their best wishes to him and pointed out that he would never have experienced such an overflowing without this illness. Earlier, he was musing about what he could do to get back some of what he's missed that his siblings have been doing. He said he would like to have a celebration with all the people who have helped or expressed their support. Mum said we dont have a big enough room which blew him away (because we have a fairly big room at our disposal).
OK - here's something remarkable about Pads that none of the others do in quite the same way: he cant go more than a few minutes without telling me 'I loves you'. This may not sound remarkable but we're not the most expressive of types.
This is a difficult time even now after the surgery has gone quite well since the consultants were certain it is not menigioma (a known to be benign tumour) but they do not know and would not comment on what it might be... So we have a nervous wait until the histology result which might not be for a week or more. Ally was saying how she has been clinging a bit to the hope that the tumor was benign but now we dont have that (so much) it is more worrying. I think we have to come to terms with the fact that we might lose him. Life is brief and uncertain and then eternity, either cast out forever or forever with the LORD. Which will it be for you?

I took this one because Pads wanted to know what he looked like with his head all bandaged up.

good night had by all

Sounds like they had a very good night - only disturbed a bit by the obs. He was given a bit more steroids but may just have been feeling the relief of better pain management: he snapped his fingers at his mum and she asked, 'are you snapping your fingers at me?'(to alert her to his having filled a bottle). 'Yes', says he, with a smirk, 'I thought it would be better than pouring cold water over you'.
I'm off to Birdham ASAP but Ally will be relaying information and I will then relay it to twitter.

Day 2 over and out

Pads is in a lot better shape tonight than this time last night. Still on plenty of pain relief and with the drain in his pain is far from the pitch it reached last night when even IV morphine was not masking it totally. It has been wonderful getting messages from so many corners of the UK and one or two from further afield. Pastor Dewi read from Philipians 4 when he and Mairi visited tonight:
4 Rejoice in the Lord always: and again I say, Rejoice.
5 Let your moderation be known unto all men. The Lord is at hand.
6 Be careful for nothing; but in every thing by prayer and supplication with thanksgiving let your requests be made known unto God.
7 And the peace of God, which passeth all understanding, shall keep your hearts and minds through Christ Jesus.
It does beg the question as to how people cope in situations like ours and worse. Some kind folk wish us 'good luck' or 'best wishes' or 'hope it all goes well' - all well intentioned and gladly recieved - but contrast that with our knowing that we are in the gracious hands of our great Creator, whose thoughts towards us are more than the stars for multitude. No suffering we could imagine could approach what he suffered willingly to bring us back from the brink of hell.

The areas of Pads' brain affected include those which deal with balance, tongue, voice/speech, swallowing... The fact that his brain does not appear to have been damaged much at present is a good sign although the double-vision is worrying - perhaps just due to pressure on optic nerves. We are in no doubt that Pads is heading for a very serious intervention but there is no other better treatment. Surgery is planned for late morning tomorrow but it could last up to 6 hours before they're done so dont hold your breath!

I'm offline tomorrow apart from twitter updates so keep an eye on that (below my pic on the left)

Pads Day 2

Pads is still in quite a lot of pain. Chris (the brilliant nurse) and Ally were trying to help him as I left. Pads was very good for the MRI which was indeed noisy. Babs is entertaining the smalls for us while we meet the consultant. Visits are not really a great idea at the moment although perhaps he'll perk up a bit. Basically he's pretty ill - the op last night plus being undernourished for days and deprived of sleep - poor chap.