LIAM'S JOURNEY

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

We arose obscenely early this morning to be at the hospital at 7.15.  Liam had a late night as he was a bit anxious, and has certainly had enough of the surgeries. 

He was in theatre by 8.30 and after the bit he likes the least – the gas – he was out into recovery by 9.30.  He was pretty sore but was transferred back to the childrens ward shortly after.  Once they got him some more pain relief he settled down to wait for lunch.  The surgery went well and he is now sporting a few more stitches holding his eyelid up but no more swelling, and we were allowed to leave about 2.30.  We are back to the hospital on Friday for them to check it all out.

Must admit we are very tired and would like this journey to end soon!

Becs, Liam and Ashleigh 

Here is a picture of Liam’s class with the money raised for him on dress up day. 

Liam is now walking unaided, he still has a prounounced limp, but just decided on Friday that he didn’t need his crutches anymore!  The swelling in his face is still going down and he is starting to look like our old Liam again.  Once he gets the eye sorted on Wednesday there will be no holding him back.  He is very impressed with his scar on his leg and enjoys showing it to anyone who wants to have a look.

We went to Penny, Daniel and Zacs place on Saturday night to watch the All Blacks trounce England.  Hope you kiwis in London are getting some mileage out of the win.  Liam enjoyed the game and the company and was quite happy to go outside for a game of spotlight when it got dark and I also caught him wrestling with Daniel at one stage.  It just reinforces the fact that you can’t tell a 7 year old boy to take it easy.

We spent the day in the garden today as it was another beautiful Kapiti Coast day.  Both Liam and Ashleigh were helping stomp down the rubbish bin by standing in it, this is their favourite part of helping.

We have a bit on next week, Liam and I are going to Weta studios and the Life Flight Helicopter with Child Cancer Foundation and of course he has his surgery on Wednesday.

Hope all have had a good weekend.

Becs

Today the 13th of June 2008 is World Blood Donor day.  During and after Liam’s surgery he received 4 litres of transfusion blood.  Without blood donors this would not have been possible.  Lots of people have said to us if there is anything we can do please do not hesitate to ask.  Well I am asking – please think about donating blood. somebody who did helped Liam and there will be plenty more kids in similar situations who need blood.  Here is a link to the New Zealand Blood Donor site with venues where you can donate – http://www.nzblood.co.nz/  Please don’t just think about it, make and appointment and do it!

Liam was overwhelmed by the generosity of his school today.  They had a character dress up day yesterday with a gold coin donation going towards Liams ongoing cancer treatment.  I took him into his class this afternoon where he was presented with $622, a huge big basket of goodies including food, puzzles, games and rugby cards.  There was a lovely book the children had written about why Liam is so special.  It was very touching and Liam will treasure it always.  He is still very shy when it comes to talking about everything going on but he did himself proud and kept his head up, thanked his class and answered all their questions about what was wrong with him.

His recovery is still going well, and he is even managing small periods of getting around without his crutches.  All in all he is doing remarkably well.  Jasper and I spent the day in the garden catching up on some well overdue maintenance – (thanks for your help Rose, Matt and Charlotte)

Take Care

Becs, Jasper, Liam and Ashleigh

Thought you might like to see Liam’s first visitor in the Hospital.  We very originally named him Johnathon Livingston. 

The second photo is Liam today on his crutches, and yes that is lego at his feet, thanks Andrew for sending it all the way from Luxemburg!

We got up early this morning for our visit to the hospital, it was a bit of a shock to the system waking up to the alarm and actually having to get up before 7.30.  We made good time and were seen initially by the nurses and registrar.  They changed the dressing on Liams leg and had a bit of a poke around. 

There was a bit of concern about the swelling in his eye and Charles Davis the surgeon came out of theatre and took a look.  Liam is scheduled for further surgery next wednesday when they will put him under a general anaesetic and trim off the excess swelling which is causing problems in his eye.  This is just a day surgery and is a ‘doddle’ compared with the last one!

Other than that they are very pleased with his progress and the surgery site in his mouth is looking really good.  The swelling will reach a peak at about 6 weeks and then after that an assessment will be made regarding further surgery.

No pathology results yet.

Becs

Well it is hard to believe that we are up to day 51 already and that doesn’t include the two weeks before we left for Christchurch.  I am not sure where the time has gone and it is also difficult knowing that we are still waiting for pathology results on the tumour.

Liam has had a couple of quiet days playing on the computer, reading, watching TV and of course playing with his Lego.  We met the regional health teacher co-ordinator yesterday, and Liam’s first lesson with his teacher will be on Thursday.  She will spend an hour with him each day one on one which is apparently quite an intensive hour – wonder if he will have homework??

We are off to the hospital tomorrow where hopefully we will be given the options of what the next step in the journey could or will be.  He still has some problems with eye swelling so that should be sorted with a local anaesetic and a bit of trimming (ouch) but other than that everything seems to be progressing pretty well. 

Take care

Becsx