Just out after 3 1/2 hours - not bad

Having made a tentative plan to go on a bit of a family trip in the afternoon, we spent quite a bit of the day on jobs. We were itching to go but Pads had not really picked up enough. He bravely got his top half dressed but felt too ill and finally was strongly ill. This was very upsetting for him - he howled quite a bit. He did calm down eventually but did not recover at all, in fact it seemed like he was nose-diving into a faint so, with neighbouring Johnsons looking after the other three, Al and I took him to hospital. He was quickly seen by the nurse and then examined carefully by two doctors who were both superb - very thorough and excellent communicators. The main nasty bit for Pads was having to have another port access needle. In fact, because he's put on a little bit of weight, that length of needle was not quite long enough, so he had to have that one pulled out and another much longer one put in!

The bloods were significantly better than yesterday's - no longer neutrapenic and HB fine too, no sign of infection or electrolite imbalance. He even had an ECG taken, with ten sensors. As time wore on, he gradually perked up and, since all the tests were fine, we were free to go.

This was a slightly different way of spending the early evening than we'd planned but, as usual, you go into hospital and immediately meet others with worse stories. One child had been in more than out for the last two weeks with three temperature spikes delaying his chemo...

hoping for a less interrupted night

Pads had his chemo this morning and bloods taken, it was while he was still in bed. The results came back showing that he is slightly neutropenic and rather low in other things too but that's to be expected at this point in the cycle. At least his needle is out now which makes lying on his right side easier. Last night we were woken up several times by the feed tube alarm having been blocked. This was because the tube got kinked. Tonight I was tempted to truss him up like a mummy!

In other news, Bo and Ash enjoyed meeting Simon Jones, former Ashes hero, at the conclusion of their 3-day sports club.

Visit from a good mate

Pads was really lifted today by the expectation and then realisation of a visit from his best friend from school. He was up early and then was having a rare old time. Hopefully he'll sleep well after that. We must line up a couple more of these.
I didnt mention that last Friday Pads had to endure a finger-prick. This was because the Dr had ordered a blood sugar test after Pads had said he didnt feel very well. This seemed to alarm the medical staff, what with him being on a different drug, they were watching him very carefully. Needless to say, he was entirely reluctant to surrender his pinky but the Dr was having none of it. He's due chemo (vincristine) tomorrow using the same line in his port that was inserted last week, then he'll be free of it again. Who knows, perhaps he'll be willing to consider finger pricks... But, since the new drug makes his kidneys a bit more leaky (in terms of losing vital minerals like potassium and magnesium) , they'll want to do more than just the full blood count, which will require more than a finger prick anyway. Yesterday he admitted that he knows that when I turn into the room the game is up as far as resisting/messing about with having a needle inserted.

Our normal

Our normal, and it does feel normal, is knowing that Pads is on a knife-edge as to whether he feels ok or not. This morning he was in bed after quite a good sleep but Al was trying to get out at 10am-ish to visit her sister and wanted to take him and the others. He started to feel very ill but after 2 types of anti-sickness drugs, he started to level off and they eventually left at 11. Having said that, the main thing that caused them to be late leaving was that Asher had lost his wallet containing all his money (£90) - some from his recent birthday - it turned up in the swinging chair!
Pads had his needle in today for bloods and chemo on Friday night. He seemed to be taking it quite well when, at the last moment he was saying 'no!' and trying to prevent it with his hands - I had to come and help restrain him and when I was in position too he was fine. The psychologist talks of this being typical 'child' behaviour - initial resistance and then it vanishing completely.
Here are some photos from the Summer Conference last week:

bad experience

There's quite a marked deterioration in the high frequency hearing (irrecoverable but hardly noticable in normal daily life) so we await to see if they change the chemo regime at all.
Earlier, Pads had his kidney function test. Even while watching a gripping film he couldnt tear himself away from the venflon. He was terrified and withdrawing his arm, saying 'no!'
It didnt help that the Dr didnt get the vein until the 3rd attempt and Pads was positively yelling. When I came in later after work and asked him how things went he just broke down for 10 minutes.
We decided to go out for a family walk in the park. Pads was in his wheelchair having complained of walking quite a bit today. When we got to the swing-park it wasnt long before his was up and larking about with the others though....

Rhys is apparently getting stronger day by day which is great news.

Pretty bright

Pads has been pretty bright and quite active over the last couple of days. Instead of the slump we were expecting after so much going on last week, he's continued to be pretty good. Last night we finally had an undisturbed night again, after applying a lot of tape to the PEG tube so that there was no way it could kink and set the alarm off, so that was nice. On Sunday he was well able to make it to morning and evening services. The morning was particularly blessed with the sight of fellow cancer sufferers Rhys and Gaynor there praising together. Baxter's hymn was very striking:

Lord, it belongs not to my care
Whether I die or live;
To love and serve Thee is my share,
And this Thy grace must give.

If life be long, I will be glad,
That I may long obey;
If short, yet why should I be sad
To welcome endless day?

Christ leads me through no darker rooms
Than He went through before;
He that unto God’s kingdom comes
Must enter by this door.

Come, Lord, when grace hath made me meet
Thy blessèd face to see;
For if Thy work on earth be sweet
What will Thy glory be!

Then I shall end my sad complaints
And weary sinful days,
And join with the triumphant saints
That sing my Savior’s praise.

My knowledge of that life is small,
The eye of faith is dim;
But ’tis enough that Christ knows all,
And I shall be with Him.

The sermon also, from Psalm 103:13-18 was perfect:

Like as a father pitieth his children, so the LORD pitieth them that fear him.
For he knoweth our frame; he remembereth that we are dust.
As for man, his days are as grass: as a flower of the field, so he flourisheth.
For the wind passeth over it, and it is gone; and the place thereof shall know it no more.
But the mercy of the LORD is from everlasting to everlasting upon them that fear him, and his righteousness unto children's children;
To such as keep his covenant, and to those that remember his commandments to do them.

Yesterday Pads wanted to walk, with the others, to the library! But I insisted that they take the wheelchair and I followed them down after an hour. He'd managed to walk about 300 metres. Later he ate a little curry. So this is a far more optomistic and healthy place. He's still feeling sick occasionally but banging a dose of ondansetron in has possibly been what smoothed it over. It's hearing and kidney function test today so we are gearing up for a venflon...

RIAT 2009

We're back from RIAT 2009. We had a great day although it was tiring. We'd had the plan to do this last year for Asher's birthday 'party' with his school chums but the event was rained off. Quite what a major 'todo' that was became apparent today - what a massive event it is: spread over at least a mile of runway!
Pads was up for it, at 7:40 - which was really impressive, although he did wane towards the end of our time there and we responded accordingly. Just in case, we'd bought him entry to one of the enclosures and he was there the whole time with Rhys with an excellent view of the runway. Meanwhile, I and the boys toured the show. Top tips learned include getting there earlier (but that was out of the question today), taking a lot of cash, and using the free bus service more to get around. Oh yes, and, be prepared for 8-9 year olds to find each other more fun than the show :-) unless they spot some storm-troopers, that is! Even the Red Arrows were no match for these guys...!
After that, we visited a Farm near Wotton-under-edge. The boys wanted to play cricket and we had to 'do' the cake. Pads revived and enjoyed the animals too.

Finally, I must add that Pads was brilliant for his needle yesterday and we are very grateful to God for what we have seen and done over the last 7 days.