LIAM'S JOURNEY

We had a fabulous holiday, with Grandad and Wendy, caught up with a few friends who we haven’t seen in a long time, and did some relaxing and fun things.  The photo above shows Liam and Ashleigh with the resident seals in Picton, they have been there for about the last couple of weeks and just enjoy sunning themselves and watching the people watching them! 

The kids enjoyed sailing the boats and riding the train at the waterfront, each activity costing a mere 20c!  Cheapest two hours of entertainment you can get.  They had a wee problem with the boats being becalmed in the middle of the pool a couple of times but I guess that just adds to the fun.  It was nice as the kids remember sailing the boats too with their Dad on one of our last holidays before he passed away.

We went to the aviation museum in Omakau on Sunday which we all enjoyed.  Alot of the props were made by Weta Workshops which was cool for Liam as of course he has been there.  The photo above is depicting an incident which occurred (I think in World War II) where the plane was damaged from a bullet and as the pilot was about to jump out prior to crashing, he discovered that he could balance the plane by standing on the wing and operating the controls with one hand.  He flew in over the enemy lines and landed safely on his own side.  There were heaps of stories like his to go with all the planes, and a display with the Red Barons plane was there.  If you get a chance to go there definitely do!

We went to Nelson on Tuesday and this is the view from the lookout on Queen Charlotte Drive in the Marlborough Sounds.   We were very generously given a house to stay in by Helen and Gary at the Top Ten Holiday Park in Nelson.  Thank you so much!  We spent a lovely evening with my Aunt and Uncle who were house sitting on a farm, so the kids got to feed the chooks and collect the eggs and wander around in the mud looking at the sheep and ostriches.  We spent Wednesday catching up with an old friend Heidi and her beautiful children.

On Thursday we very nervously boarded the ferry for the trip home, Liam was making me promise that it wouldn’t be rough, but of course all I could promise was that it wouldn’t be as rough as the sailing down.  Luckily it wasn’t!  We perched ourselves in the bar at the bow (front for those who don’t know boat speak!) and the kids watched a DVD while I sat and did some reading.  We arrived in Wellington safely – thanks for picking us up Robyn – and headed home to Waikanae. 

As for Liam, he is still doing well, I took him to the Doctor to check on his nose which won’t stop bleeding, but we seem to have that under control now.  We have appointments with Doctors all day wednesday but not the ones which will have any results for us.  We will still be waiting another couple of weeks for those at least.  He is back at school tomorrow, and we will sit down and have a conference tonight about the do’s (take it easy and eat your lunch) and the don’ts (no ball tag, bull rush etc).  I guess he will figure out his limitations soon enough.

Thats all from me for now, hope all is well with everyone.

Love

Becs

We made it to Picton about 5.30pm last night.  It was one of the most horrific sailings I’ve ever been on.  We were ok until we got out of the Wellington heads and into Cook Strait, when the big waves hit.  It felt like we were on a continuous rollercoaster with our tummies going up and down all over the show.  Poor old Liam thought we were going to sink as everytime we came down a wave there would be a crashing sound and he thought we were hitting rocks!  I took Ashleigh to the toilet holding onto the rails and bouncing off the walls, and there were people loosing their lunch all over the show.  I should have known there was something amiss with the amount of sick bags that were lying about for us!  As soon as we got into Tory channel we were right and the waves settled down. 

We have spent the day in Blenheim today catching up with an old friend whom I haven’t seen in 20 odd years!  It was great to catch up and we will definitely not leave it another 20 years before we see each other again.  We also stopped in at a boutique chocolate factory where we ended up buying a couple of things (surprise surprise) but I nearly fell over when the price of the popcorn came up at $15!!  Luckily I left my wallet in Picton so Dad was paying, hee hee.

The kids have picked up some little $2 shop goodies and are busy playing with them.  They are having a bit of a competition with Wendy playing noughts and crosses – I think the kids are winning!

We will be settling down to watch the All Blacks tonight, and hopefully the weather is a bit better tomorrow so we can go and sail some toy boats at the park and muck around. 

Love to all

Becs, Liam and Ashleigh

Here we are sitting on board the Aratere about to set sail for Picton.  I think the weather could have been a little bit better for us, but we will take what we have been given.  Hopefully the sailing is not too rough, although Liam just picked up a pile of bags and thought they would be cool to play with until I advised him that they were in case we vomitted.  The thing that concerns me the most is that 140 kmph winds are forecast!  Eek. 

We will be arriving in Picton at about 5pm and returning back to Welly next Thursday.  Should be a nice break, and good to see Grandad and Wendy. 

The week has gone by fast again, Jasper and I managed to get the fence painted with two coats over the last couple of fine days.  It was great to get that finished and it is looking awesome. 

Well better close up the laptop now, will write more when we have arrived in Picton.  Liam is doing really well, and looking forward to getting away.

 Becs, Liam and Ashleigh

x

Today is the first day of the school holidays, so now the battle begins to keep two children occupied for the next two weeks, *sigh*.

The weekend has gone by in another blur.  We went to Zac Bowmans 8th birthday celebrations on Friday night and had yummy birthday cake.  I didn’t get the kids home to bed till after ten oclock, and they slept in till about 8 the following morning which was a bit of a treat. 

 Mum and Ian came down from Taupo late Friday night and came round Saturday to finish off the bathroom, which still had the odd bit of tiling and edging to finish.  I pottered around touching up paint etc and the kids mucked around on playstations and computers etc.  Vic and the kids came round that night and we all sat and watched the rugby.  It was cool when they all lined up for the national anthems and the cameras panned all the players as Liam was going I met him, I met him …….

Sunday was another day of odd jobs and Keenan, Liams friend coming for the day.  I was hard pressed to peel them off the playstation for any period of time, except of course for lunch.  Later in the afternoon we went down to the Todd’s to visit Aunty Lucy, Matariki and 10 month old Tane whose thighs rival those of Liam at the same age!

Mum and Ian finally made it home at about 9pm last night after traversing the entire north island trying to find a road that was open to allow them to pass through.

It is still very chilly here, and we can see the snow on the Akatarawa’s, but is an absolutely stunning day.  The kids are busy painting on some canvasses that our lovely neighbour gave them so once they are finished we will hang them in the lounge and I will find them the next activity to do.  I wonder if they would like to wash the windows?

Take care and keep warm

Becs 

We decided to call in the big guns to cheer us up today!  Well actually the Child Cancer Foundation rang last night and told us that the All Blacks were coming to meet us at the childrens ward at Wellington Hospital (not just us but you get the idea!).  We decided that even though the truckies were blocking the roads and causing chaos it was a chance we couldn’t really miss.  So we rocked on in and met a few of them:

Conrad Smith (Liam very impressed with meeting him)

Adam Thomson and Andrew Ellis (Mummy very impressed with meeting Mr Ellis!)

Anthony Boric                                                        

John Afoa and Brad Thorn   – These guys are huge!

Stephen Donald

Kevin O’Neill

Was a good day, and nice to see the smile on Liam’s face.  We are doing alright after Tuesdays results have sunk in, we have booked our trip to Picton, so it will be great to see everyone down that way.  We have a few things planned for the holidays, including me trying to squeeze in a bit of study, so should be able to keep ourselves occupied. 

Take care

Becs

Before anyone gets too excited, the results are in but the results are that we still don’t know what the results are.  The tumour has been sent to a world renouned expert in Baltimore for further tests.  All the pathologists are in agreement that it is a myoepithilioma and that it is not a “bad” cancer, but will not say that it is benign, and are still treating it as cancer, albeit a low grade one.  There are some areas of concern in that the cells are replicating at a fast rate, and there is one area which they need to look at again.  Again they agree that the margins are good where the tumour has been removed. 

David Hamilton, (Matts oncologist also) is happy enough to wait until the results are back from Baltimore before committing to more treatment., however the view is that it is better to over treat it rather than under treat it.  This indicates that radiation treatment is very likely.   

This type of tumour is really really rare and never in the world has there been a case documented in a 7 year old boy, so apparently they will all be fighting over the writing up of the case.

Liam is also required to have further surgery in a few weeks time to drop down the titanium plate acting as his obital floor.  His eye has not come down far enough so an adjustment needs to be made.  This is not an urgent surgery and will probably be done once the results are back.

Obviously I would have preferred to have something more concrete than this, but I suppose that the fact they all agree that it is not a “bad” cancer is a good thing.  Liam is not too concerned about the whole thing and as I sit here in the lounge typing, I can hear him singing “we are the champions” in the shower. 

Well it has been a very long day, and I think pretty soon the exhaustion is going to catch up with me and I am going to fall asleep where I stand. 

Love to all

Becs

Another week has rolled around already.  It is still freezing here, although the sun has been shining all day today.  The weekend was pretty miserable weather with the southerly, driving rain and wind preventing any outdoor activity for the most part.  We went into Wellington to watch the girls play netball on Saturday and got rained on watching Amelia’s game, but the weather held out for Olivias later on. (Jess played at 8.30am so we missed that one, although she had a good win)

 Our friend Mick in London generously gave both the kids some British Pounds to spend, so we transferred the money over and they went on a wee shopping spree at Toyworld (although they were lamenting about not being able to go to the coolest toystore in the world – Hamleys in London!)  No surprises what they bought – Lego!  The rest of the afternoon and evening was then spent building their respective items.

Sunday was spent inside in front of the fire mucking around and doing odd jobs.  The highlight of my day was being able to have a spa in the rain after the kids had gone to bed.

We are back at the hospital tomorrow for a clinic visit, and I am expecting the pathology results to be back however will not be surprised if we don’t hear anything still.  I am very nervous about going and it churns my stomach everytime I think about it.  It will have been 5 weeks since the surgery on Wednesday, I’m not sure where the time goes. 

Some days its hard to keep smiling when I look at my beautiful boy and his sore eye and swollen face.  He is maintaining his weight and filling him up with complan milkshakes seems to be doing the trick, but he still struggles to open his mouth more that a centimetre or so, and is getting frustrated with not being able to eat properly.

Will report tomorrow after we have seen the surgeon.

Love

Becs

Life has been carrying on as normal as possible over the last few days.  Liam is continuing to have his hour long school lessons each day which is helping him to keep up to date with what his class are up to.  They are studying recycling at the moment so whenever I try to put something in the rubbish I get the comment from both Liam and Ashleigh “don’t put that in there Mum you can recycle it”  Arrrgghh!  Although I must say I prefer this than when they were studying healthy eating and kept saying “don’t eat that Mum its junk food!” (yeah cause that’s going to stop me)

Jasper took Liam to see Narnia, Prince Caspian today.  They both enjoyed it alot, they said there were some pretty impressive fighting scenes and some great special effects.

Liam’s scar on his leg is looking great – the bio oil seems to be doing its job, although he knocked it today which caused a few tears, so it must still be a bit sensitive.

We are now tucked up for the night in front of the fire keeping away from the storm, we have had thunder and lightning for part of the day and night, and the rain just seems to keep on coming down.

Hope all on this side of the world are keeping nice and snug and warm and those on the other side are enjoying their summer.

Till next time

Becs, Jasper, Liam, Ashleigh and cousin Hannah (who is staying the weekend).

Been a few days in between posts, but we just didn’t have anything to report!  The kids had a great weekend, both Liam and Ashleigh had a friend for a sleepover on Saturday night, which they enjoyed.  I finally got them all off to sleep just after 9, but as I was busy painting the windows in the lounge I didn’t crawl into bed until around midnight.  The problem with that was that I heard the first peep from the children talking at 6.30 the following morning.  Not impressed!  However I got up and we made a huge batch of pikelets for breakfast which were being consumed faster than I could make them.

I had delivered the guests home by 11am and delivered Ashleigh at her cousins and Liam at his friend Callums for the day.  That left me unbelievably with a day to myself.  Finally some well overdue, and well needed ‘me’ time.  Unfortunately I ended up spending the day finishing the painting in the lounge.  The wallpaper had been stripped and the walls plastered for sometime and I hadn’t got around to getting the painting done.  Mum did the first coat for me while we were in the hospital, but I needed to get it finished as Liam and I did a bit of retail therapy and bought a new lounge suite which is delivered tomorrow.

We are still awaiting the pathology results which will give us an indication of what the next step is likely to be.  Worst case scenario is that we are down in Christchurch for chemotherapy, alternatively remain up here for radiation treatment, or thirdly – the one that I would be ecstatic to hear – that no more immediate treatment is needed.  It is very difficult attempting to carry on life as normal when you are unable to plan more than a few days ahead.  The school holidays are coming up and everyone around us is planning trips away and I would dearly love to be able to take the kids on the ferry to see Grandad and down to Blenheim for a visit to some friends and vineyards, – but until we get these results life is in limbo. 

It has been 4 weeks on Wednesday since the tumour was removed so I am expecting to receive the phone call any day now, although it could be up to 6 weeks.  Our next appointment to see the surgeon is on the 1st of July. 

Hope all is well with everyone, until the next post

Becs.

Liam and I joined several other kids from the Child Cancer Foundation today and made a trip to the Weta Studios in Miramar which was organised by Dean Gifford.  We were picked up by two limousines and a Police car, funnily enough I was one of the ones to ride in the Police car! 

We were greeted at Weta by none other than Academy award winner Richard Taylor!  We got to meet Gollum, King Kong, several strange creatures and got to play on the “warthog” off Halo.  I must admit to standing beside this tank like thingee machine which was called the warthog and wondering when we were going to see the pig!

We were then ferried to McDonalds for the lunch of choice.  This was provided by Keith at Ace Limousines.

Then we headed out to the Life Flight trust near the airport where the kids got winched on the side of the helicopter and got to play all over it. 

I really think that the highlight of the day for Liam was meeting other children in similar situations to him.  He had an absolute ball and didn’t want to leave the family place and the other kids!  I also met some lovely people including someone from up the Kapiti Coast who has a son the same age as Liam who is ill.  Here is a link to a website which is run by the Gillies group in Upper Hutt.  They are building a house in association with Golden Homes which is being auctioned and the funds donated to the Child Cancer Foundation.  I met Steve from Gillies Group who told us that there have been so many things that have been donated with the house it is incredible!

www.houseofgold.co.nz

We are back to the hospital tomorrow morning to get Liams eye checked, I can’t believe it is Friday already- not sure where the week has gone!!!

Take care

Becs