Hi and sincere apologies for the amount of time since the last entry.

It’s also been good to just be out of the hospital system, at home, with spring coming on.

In a nutshell things are going well.   His progress is upwards, balanced by a couple of small niggles.   Since the last entry Sean has been going for check-ups and blood tests to the Ward twice a week, but from this week onward that’s been reduced to once a week.   He is still on three daily medications the major of these by far being the immuno-suppressant (Cyclosporin).   Also this week, we began the process of progressively reducing the Cyclosporin.   Each week his progress will be reviewed and a decision made whether to reduce the dosage a little bit more.   He finished with the last of his steroids two weeks ago – he was weaned off them over a period of several weeks just like the Cyclosporin will be.

I’m sitting here in the lounge with a strong coffee and the new laptop on my knee with the build-up to the New Zealand vs. France game on the TV.   It’s 7:30 in the morning – half an hour to go - and looking outside broken banks of cloud are scudding by in the strong onshore northerly.   The air really is thick with the smell of fresh air and sea, and the sound of the wind in the trees and the surf on the beach.

The boys are asleep.   We were up quite last night!   Watching a TV movie and chatting away, after  a day when Catherine and I got into the garden – I was spreading a lot of mulch and feeding the citrus trees, while Catherine was planting out some bushes and also preparing to plant apple and cherry trees.

Cameron has had a sore throat for a couple of days now, but apart from that is well and doing good.

Sean was sick a couple of times last night, not sure why, just something to keep an eye on along with the spot that has come up on his tummy.  

He still has both his tubes –his Hickman and his Nasal Gastric.   We haven’t given him an overnight nasal gastric feed for about a month now and he is maintaining his weight – although he is losing the steroid cheeks!    He’s eating little bits and still thinks about food a lot.   We were just finishing tea last night and Sean was discussing aloud what he’d like for tea the next night!

Sean is also slowly growing his hair back.   It’s still short and thin at the moment but is thickening up and also it is darker than it was!   Apparently it is not unusual for children to grow back their adult hair – and my hair darkened from blond as I grew up.

We have had a bit to do with the review of child cancer in Wellington; especially Catherine.   This week saw a decision from the Capital and Coast District Health Board to commit to maintaining a full service in Wellington – subject to conditions being met.   This is a very welcome decision, but there is still danger of losing the service and we need to now keep on to them.   I’ll go into more details soon.

Both the boys have been good.   They really are good lads.   I was thinking last night of how much they have both grown in this last year.   Cameron has become a big help especially.   They are both developing as great people and we are very proud of them.

Be awesome,

Mark

Here’s a photo of a good friend, Steve Gibson, who came to see us.   He lives in Melbourne and is one of the people who has been asking what has happened to the blog!

Here’s the boys and others at the Westpac Stadium in Wellington, meeting players from the local Phoenix soccer team.   Terry Serepisos, who owns the team, hosted 60 or 70 Child Cancer family members to a view of the game from a corporate box.   Great game (Phoenix won 4-1) and great also to meet up again with some of the other families.

Finally, here’s a photo taken just  a few minutes ago, in the boys beautifully redecorated room.   Even though it is finished, Sean has not slept in it yet, as he is still sleeping with one of us each night and will be for a little while longer until things settle more and he gets his tubes out.