LIAM'S JOURNEY

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

Today was the first of the really big days for Liam to contend with.  We were required at the hospital by 10am and things starting happening from then.

 We were spoken to by numerous amounts of Doctors ranging from Anaesthetists, plastic surgeons, registrars for different things, paediatric oncologists to name a few.  Of course the junior doctors are all striking so we had the best of the best! 

Liam was taken into theatre with me dressed up in my suit and hat and booties again.  He was so incredibly brave as the gas distresses him a bit.  He spent his time thinking about his special memory which he chose as the Big Thunder Mountain ride at Disneyland last year.  He was picturing Ashleigh screaming and us getting wet!

He came through the surgery very well, he now has his portacath in which is being referred to as “portie”.  It has been accessed and he also has another line in his arm so will get all further meds through there.  He has an incision in his neck which is about 2 centimetres long where they took out a lymph node and used the same incision to insert portie.  He also had his lumbar puncture, bone marrow aspirate and another biopsy taken so he is a bit battered and bruised.  He is all tucked up having a sleep covered by his new hurricanes jersey as there are too many crusaders fans down here.  I knew he was ok when I asked him if he was in any pain and he said no, and when was he going to get his nintendo!!

Will sign off for today, Port of Lyttleton are into Ronald McDonald to cook a roast chicken so am looking forward to feasting on that when Jasper and the girls bring it over. 

 Thank you all so very much for your wonderful messages, I have read them out to Liam and he (as are we all) is just blown away by the support. 

Becs

Today was supposed to be our free day, however we got a phone call asking us to be at the hospital at 1pm for Liam to have an ECG – which is an ultrasound to have a look at his heart. 

Before that we met a special guest, Ronald McDonald himself!  He popped in for a brief visit which Liam and Ashleigh thought was pretty cool. 

Then it was off to the hospital for the ECG.  Liam wasn’t too impressed with the cold gel but other than that was pretty relaxed about the whole thing. 

 Our nurse for today, Angela, then showed us what is involved with putting in a portacath which was a bit of an eye opener.  There is a whole lot of stuff that sits in under his skin, but which makes it alot easier for him to receive the drugs and can stay in there for up to 8 years!.

We then got to disappear, but had to stay close by at R.Mcd house as we were waiting for a call to come back and see the surgeon.  Dad took the girls to QEII pool where they had a marvellous time, Liam stayed in the teenagers room playing playstation for the afternoon which meant that Jasper and I could get some study done. 

 We got a phone call about 6pm asking us to go back to CHOC so popped over there and briefly met with the surgeon who will be taking the biopsy tomorrow.  Tell you what he is getting tag teamed by some pretty impressively qualified people!

 Thats all from us today 

love

SROJALA