LIAM'S JOURNEY

The day got off to a very inauspicious start, with this storm we have been having the winds picked up my wheelibin and threw it against the lounge window, smashing the window!  I got a hell of a fright as I was sitting at the table studying and the dog took off up the hallway and hid under the bed – fat lot of use she is!  I then raced around to find something to cover it up with and thankfully the glass people came out about an hour later and fixed it up for me.

I then picked up Liam and headed out to Hutt Hospital – leaving an extra bit of time in case the weather was causing traffic hassles.  We saw David Hamilton the clinical oncologist who basically advised us that because Liam’s type of tumour is very rare, there is no right treatment plan.  We are now looking at localised radiotherapy as the first treatment which comes with some difficult side effects.  There are a couple of options I need to look at and think about and I have a bit of reading to do, but I am happy to wait for a definitive answer from Baltimore, and failing a definitive answer, maybe a little bit more information before I make any decisions.  It is however generally believed at this stage that it is a low grade malignant myepithilial carcinoma. 

Liam is still feeling great and moaning about being back at school, but he can stay there for a while!

Hope all is well with everyone and the storm is not effecting those in New Zealand too much!

Becs

Liam had his CT scan today over at Hutt Hospital.  I picked him up from school at 12.30, slapped some emla on both arms (numbing cream) and headed off.  He was a little bit anxious about being jabbed yet again, but wasn’t doing to bad on the nerves side. 

We were called in a short time after arrival and the nurse asked Liam if he had had a scan before to which he answered “yes, do I have to have a needle?” When the nurse said no, he did a sort of a jig and jumped up onto the bed faster than I have ever seen him move, and with a smile on his face!  I was then sent from the room as they don’t want me to be zapped by the xray beams too many times and will keep my presence for when it is needed.  I sat out in the waiting room while Liam coped on his own, and by god did he cope!  He took it in his stride and wasn’t fazed at all.  The nurse said he was fantastic and stayed as still as a statue.  Very impressed.

The results of the scan will be sent to Charles Davis, and we will discuss them with him on Wednesday.  I have just realised that Wednesday is going to be day 99 in the journey since beginning this blog and we are finally going to have a treatment plan to discuss.  Amazing really. 

Will sign off now and go make some dinner to the sounds of Ashleigh on sing star singing, “Heaven is a place on earth”, and let me tell you there are not a lot of angelic sounds coming out of the room! 

Take care all – will update on Wednesday with treatment plan.

Becs

I kept Liam home from school yesterday with his bout of the flu.  He spent the day tucked up on the couch under his blanket watching telly.  His cousin Madison lay on the other couch feeling just as sorry for herself as he was. 

 I sent him back to school today as he was feeling a bit better.  It was crazy hair day so I spiked his hair and tied Ashleighs in about a dozen pigtails and then Steve put generous dollops of paint in it.  Luckily the paint came out easily with shampoo! 

 I received a phone call tonight from David Hamilton the radiotherapist and we have an appointment to see him next Wednesday.  They haven’t received the results from Baltimore but he believes that we are not going to get a black and white answer as to what to do next, so we are going to discuss our options, but my impression from him is that we need to seriously consider radiation and with a bit of luck the results will be back before the appointment.  Liam also has a CT scan on Monday so so much for him getting back to school! 

 Have a good weekend

Becs

I took Liam to Kapiti Health Centre today (formally Paraparaumu Hospital) where we visited the Paediatric Doctor whom we met at the original oncology visit in Wellington.  He had a look at Liam’s big toe which he hasn’t been able to straighten since the surgery.  The Doctor seems to think that one of the nerves has been damaged when tissue and bone were taken so Liam will be seeing the physiotherapists to hopefully help it to heal.  He will have exercises to do and possibly a splint to keep it straight.  Other than that there was nothing new to report to us on, still waiting on Baltimore results.

We went in and saw a clinical psychologist as well in Wellington which went ok, but Liam was not feeling very good all day.  He has come down with a temperature of 39 and a throbbing headache which I am putting down to the flu at the moment, as there is a lot of it going around.  Poor little buggar, like he needs this!  Good way to get out of more school I guess.

We got stuck in the traffic on the way home due to the flooding and debris on Centenial Highway after this nasty storm we are having, so it made for a very long day.  Both kids are tucked up in bed, Coco is tucked up in bed as well after being speyed and microchipped yesterday, so I am going to plonk myself on the couch and watch some telly.

Take care

Becs

Liam’s first day back at school for quite awhile went without a hitch today.  He didn’t particularly want to go back as he said he has more fun at home and at school he has to work.  He wore shorts, but even though it was a sunny day I think possibly he wanted to show off his impressive scar.

After the initial curious stares and questions from the kids he appears to have slotted back in nicely.  He was running around playing tag and said he wasn’t ”it” all the time even though he still has a bit of trouble running.  I also didn’t get a phone call saying he was asleep at his desk or had fallen over and injured himself in the playground so I think it went well!  Long may it last.

Cousin Hannah started at Kapanui today (transferred from her other primary school) so that kept Ashleigh excited as they got to play together at playtime.  I spent the day with my nose in a textbook, and it is nice to be back in some sort of a routine.

Thats all for now.

Becs

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