LIAM'S JOURNEY

Thought you might like to see Liam in his Crusaders jersey.

No news today unfortunately.  We will go visit the Doctors tomorrow afternoon and have a chat as it appears to me that the tumour is growing after staying pretty much the same over the last week.  Although I would desperately love to go home to await any results, I don’t think that would actually be in Liam’s best interests.

We saw the girls off at the airport this afternoon, and they arrived safely at Wellington.  Back here at Ronald McDonald things are a bit quiet without them as it is now just me, Jasper and Liam. 

Liam is going to go to his cousin Jack M’s house for the day tomorrow so they can spend some time doing boy things. 

Thats about all I have to report today, very quiet day, the weather has turned pretty sour-the southerly has come through and it is cold!  I am glad now that I have brought the thermals.  Yesterday it ws 23 degrees and today we would be lucky to hit double figures I reckon.  bbrrggghhhh……

Becs, Jasper & Liam

x

Hi all,

 The highlight of Liam’s day today has to be the gift of a Crusaders jersey with the following written on it:

“Liam, all the best with your fight”.  It is signed by Richie McCaw, Robbie Deans, Greg Sommerville, Leon McDonald and a few others whose signatures we need to decipher.  He is very very chuffed with it and we are going to get it framed for him and put it on the wall to give him courage.

Thank you so much Tusha for organising it, I wish you could have seen his face when it was delivered. 

Jasper and the kids went to QEII pools today, they left at about 11.30 and got out of the pool at about 4.45!  They had a fabulous time and Amelia even jumped off the 10 metre diving board.  She certainly has more courage than me!  From what I understand they spent a fair amount of time on the hydroslides.

I spent the day studying trying to keep my head above water so missed out on all the fun, but I got alot acheived.

Olivia, Jess and Meals are flying back to Wellington tomorrow afternoon, and hopefully we will get a better idea of what our plans are doing from the doctors.

Until tomorrow, hope everyone is well.

Becs

ps – Ran – a city with no people in it is – electricity!!

We arrived at the hospital this morning and met with the oncologist for some results.  We had some fantastic news in that  part of the bone marrow aspirate, lymph node, lumbar puncture, and chest are all clear of the cancer.  It is localised in his sinus cavity.  About time we had some positive news! 

We are still awaiting the biopsy results on the tumour however, and should have the results back by late Wednesday.  They are repeating all the same dye tests they did in Dunedin as it is not putting its hand up and saying what type of tumour it is!  We do like to make them work for their money these specialists.  If they need to do further testing on Wednesday they may look at sending us home to await the results, or alternatively if it is discovered that the tumour is non responsive to chemotherapy, they will send us home for the surgery.  This is because the best paediatric plastic surgeon in the country is in Lower Hutt.  We are still obviously in a holding pattern awaiting the biopsy results.

 Ashleigh jumped on the plane with Aunty Amy to head back to Wellington today – I asked her if she was going to miss me and she said “not really”!!!! Give her a couple of days and I’m sure she will miss me. 

 Liams bone scan went well, he got to watch Shrek on the monitor above him and then had the needle taken out so we can go swimming tomorrow.  The girls and I are off to the netball (Canterbury vs Melbourne) and Jasper and Liam are going to the movies.

Becs

x

We went out to the McGirr farm today, out near Westmelton.  The McGirrs (Kevin and Kay) are the parents of a good friend of mine Tracey from Welly.  We have had an absolutely fantastic day, on our arrival Kevin took us all out on the blue truck to feed the cows.  The truck (Holly and Dylan if you are reading this you’ll know what I’m talking about!) has no brakes, no floor and has been around for a long long time.  Of course we had a ball!  Kay and Kevin had cooked us a beautiful roast (homekill yummy) and followed by the most delicious meringues I’ve ever tasted!!  The kids were treated for a ride on one of the horses and then a ride on a sulky pulled by Jasper.  Good exercise to work off the beautiful lunch.

We then arrived back at Ronald McDonald house to a lasgane cooked by the Baptist Church, we are now so stuffed full of food we can hardly move.  Jo bought us in another dinner which we will be having tomorrow.  We certainly are being looked after.

 We are due at the hospital at 10 tomorrow morning and Ashleigh is flying out at 1.15, so another busy day ahead.

See you tomorrow

SROJALA

We headed off to the Antarctic Centre this morning with Aunty Amy (from Melbourne), Great Nana Pat, Great Aunty Linda, Grandad and ROJALA – We left S at Ronald McDonald House to catch up on some correspondence etc.  Ashleigh made a beeline for PomPom the penguin (A person dressed up in a suit) and the seal whose name I am unsure off.  She was like a little stalker following them around giving them continuous cuddles!

We dressed up in little booties and jackets to play in the snow and had a wee bit of a snow fight, until Ashleigh picked up a snowball the size and weight of a brick and hit me square between the shoulder blades and I decided it was a bit of a silly game!  Inside the snow bit it was -8 degrees but we stayed in while a storm was simulated which got the temperature down to -18.6 degrees which I must admit was pretty cold!  Amy was heard to mutter “remind me why we are doing this?”  We then went off for our complimentary hagglund ride, which was a lot of fun.  Liam unfortunately was unable to go on it as it was a bit bumpy and you had to hang on for dear life.  We were a bit concerned as he still has his line in portie and is still a bit tender around his back and neck.  He didn’t mind too much and waved at us sinking in a big puddle, think he got the better end of that deal!

We then went and got icecreams and went for a stroll in the botanical gardens to the playarea, before my Dad and Aunty took the kids to Pizza hut while Jasper and I went out for Indian and some time on our own.

We have had a pretty good day, Liam has had no pain killers and is feeling pretty well in himself.  Ashleigh is booked to fly back to Wellington on Monday with Amy to stay at Nana and Papas for a while, as we should be receiving the results next week which will enable them to plan the treatment.  At this stage I could see Liam and I down here for at least another 3 weeks, but again we are needing to take this one day at a time at the moment.

Until tomorrow, keep safe and hope all is well up in Welly and wherever you are reading this from.

SROJALA

x

After we dragged our bodies out of bed today (for some of us it was 9.45!) and got organised, we toddled off to Orana Park.  The vote for favourite animals were the baby giraffe and the rhinocerous’s (or is that rhinoceri?).  A fabulous day was finished off with an ice cream.  The wind was a bit cold but we were all rugged up and the walking kept us warm.  Liam got through the day really well with only one dose of Pamol.  He is still walking a little bit stiff because of the incision in his neck and getting used to having portie in, but had a really good day, except from not being allowed on the flying fox.  Apart from the danger of portie, neck or back being knocked, the last time he was on the flying fox he broke his arm!

We are off to the Antarctic centre again tomorrow seems Liam missed out on the last trip, so he is looking forward to that.

 So all well at this end and I will post a picture of Liam in his beads soon. 

SROJALA

xx 

PS. Have had a few people who have struggled placing comments – its really easy, just go to the post and click on “comments” at the top below the Title (as on this one it says Day 6 then on the right hand side it has 25 April # comments) then click on add a comment.  Simple!

Liam spent his first night in the hospital last night.  He spent most of the day asleep after the surgery so got to stay up till about 10.30 playing playstation.

He was given a couple of doses of pamol overnight and had a blood test thru his new addition – portie.  I tucked up on the fold out bed next to him and all things considered didn’t have too bad a sleep.  This place starts to come alive at about 6am which is a tad too early for my liking, however Liam kept sleeping then turned the playstation on about 7.30am and I rolled over and went back to sleep!

He had some dye injected into portie to test his kidney function and is having 2 hourly blood tests to make sure they are working properly.  He also had a hearing test and now has no more excuses for ignoring me as his hearing is perfect!

We are now awaiting all the results, some related to the tumour and some not.  We should have a diagnosis as to what type of sarcoma it is by next week which will enable them to figure out a treatment plan.

 Liam got his beads of courage today and has already chalked up 39, each one symbolising a different procedure.  Once he gets to 100 he gets to chose a special one.  He is very proud of them and is wearing them constantly.

 We have a free pass for the weekend and are not due back at CHOC till Monday morning when hopefully some results will be in and Liam is scheduled for a bone scan.  This is where they inject Liam with some radioactive material which is highlighted during the scan.  We are heading to Orana Park tomorrow as you need to book 24 hours in advance it should be a good day.

He was also given his nintendo by the Vaughans this afternoon and has been playing it ever since!

Thats all for today folks!!!

SROJALA