LIAM'S JOURNEY

We had an incredibly busy weekend, heading into the Sound of Music at the Opera House on Friday night to start things off.  The seven of us had front row seats so we had an unobstructed view for the entire performance.  One of the highlights for the kids was when Captain Von Trapp was dancing with Maria and they noticed a slight wardrobe malfunction – his fly was down!  A lot of giggling was coming from the front row.  Towards the end the crowd were encouraged to join in with Edelweiss – to which Jessica leaned over to me and whispered “don’t you dare!” – mmm maybe she doesn’t like my singing.

The next morning we got up and I took Amelia and Olivia on a bit of a shopping spree at Queensgate, we did well but unfortunately we ran out of time as we were due in at Amelias netball teams end of season BBQ.  After the parent vs children’s game (they reckon the kids won, but I think they cheated!) we raced home to get ready for the Lions game at the stadium.  The Ranfurly Shield was up for grabs and Tasman bloody nearly took it off us – fortunately they didn’t.  Just as the game was finishing the rain came down.  I offered to go pick up the car which was parked about 3k away as I was wearing a raincoat.  A fat lot of good the coat did me, I was drenched within about 2 seconds – it was a very long run exacerbated by having sopping jeans and shoes. 

Sunday dawned as a bright and beautiful sunny Wellington day and saw about a dozen child cancer families take the winding road out to the picturesque Woolshed in Ohariu Valley.  We were hosted by Greg and Jude and their many helpers and animals.   

On arrival the first things that were spotted were two gorgeous little puppies which tended to be the highlight of the day for some, I know a couple of the children in our car wanted to take them home.  Amongst the other entertainment was horse rides and sheep chasing which was very amusing as those little lambs can move pretty fast when they want to.  Jude also did several rounds of the farm on the quad with a trailer full of children on the back.  For the adults we had the opportunity to test our shooting skills with a spot of clay pigeon shooting.  Let’s just say that a few of the fairer sex managed to hit more than the males in our midst. 

We were treated to a superb afternoon tea, drinks and good conversation on the balcony in the sun, whilst looking out onto nothing but the beautiful green rolling hills. 

Liam and Ashleigh are hanging out at a holiday program this week which is enabling me to get some much needed study done.

Hope all is well

Becs

I have also added the blog to facebook, so if you are registered there feel free to attach yourself to it!

The week had been pretty uneventful until this evening.  Liam and Ashleigh were playing with two friends on the trampoline while their Mum and I were having a nice quiet cup of tea inside.  Next thing we heard an absolute blood curling scream coming from, you guessed it Liam.  You know one of those screams that you know something bad has happened.  I raced out and found Liam staggering towards me holding his mouth with blood everywhere.  Once I got him calmed down and cleaned up we discovered that he had smashed his bottom lip on the bar outside the safety pads on the trampoline and his tooth had gone into his lip.  Of course the swelling came up immediately and he was unable to close his mouth, not to mention all the blood!  Poor Liam was so distraught saying “why do bad things always happen to me??”  I mean really what do you say to that.  Apart from that I think his next main concern was that he was worried he couldn’t eat dinner. 

I had a good look at the “wound” after I had him cleaned up and discovered there was damage to the outside of his lip as well so a trip to the Doctor was in order.  I rung the medical centre and the receptionist said “Hi Rebecca come on down”  (They are pretty used to me by now).  The pressure of his tooth has pushed it through his lip to make the injury on the other side.  Crikes!  At least he has another story to tell at school.

He managed to eat all his dinner and the swelling has gone down with all the ice and drugs I have filled him up with so think he will be okay.

On the other front Liam has a an appointment at the genetics clinc next month, so hopefully we may get a bit closer to finding out if there is a link between Matts cancer and Liam’s.

Still no surgery date - will find that one out soon I hope! 

We have a busy weekend ahead of us, we are off to The Sound of Music Friday night, to the stadium to watch the Lions ranfurly shield match and the CCF farm day on Sunday, then of course the school holidays! 

Take care all, until the next incident

Becs

Today my heart is full of sadness for Shanell, Jason, Kaleb, Jordan and beautiful wee Kyah.  I met Shanell and Kyah through the Child Cancer Foundation as Kyah is only 3 years old and has neuroblastoma.  

Shanell, Jason and Kyah returned to CHOC on Monday as Kyah has been having problems with pain which they thought was an infection.  Unfortuantely they discovered yesterday that Kyah has relapsed.  This means that there are no further options for treatment and she will now go into palliative care.  I know that the huge range of emotions they will be experiencing will be overwhelming and the next few months are going to be the toughest of their lives.  Shanell is an amazing Mum, and a remarkable lady. 

My heart goes out to them all and please add them to your prayers.

Becs

http://kyahsjourney.livejournal.com

Liam and the Phoenix lads

Here is a picture of Liam and the other mascots at the Phoenix soccer game in Wellington last night.  Riley the little dot at the front of the picture is wearing his beads of courage.  Can you believe that he is only 4 years old and has 800 beads, what an amazing kid.  The evening went really well, we were taken to one of the Deloittes Lounges and were fed and watered.  There we met the team members above (no idea who they are!) then the four boys were taken down to the players tunnel and given shorts, socks and Child Cancer bright blue T-shirts.  They ran out onto the field with the players in front of the 5000 strong crowd.  Must admit had a few tears in my eyes seeing my boy out there!  They then came back up to the lounge and we watched the game.  Actually the adults yapped and watched a bit of the game and the kids all chased each other around with the yellow thunder sticks they had been given, oh well.

We got video of the event and will post it when I get a chance to edit it. 

Liam is still doing very well health wise, there are no signs indicating any regrowth so far, so fingers crossed and we also haven’t received a date for the next surgery yet.  

Becs

p.s. Blogtown have updated a few settings so hence the new theme.

Well I think that the weather gods are messing with our heads at the moment.  We go from brilliantly sunny beach days like yesterday to overcast miserably cold days like today.  No wonder everyone keeps getting sick!  I have Ashleigh Jane home with a hacking cough and a bit of a fever today.  She is tucked up on the couch with her quilt watching TV - I am sure that is the only reason she wanted to stay home.   

Jasper and I had a lovely weekend in New Plymouth, we took our time getting up there on Friday and arrived about 2.30pm.  They have a really nice paved pathway right around the waterfront so we donned our running gear and went for a bit of a jog to refresh ourselves after our drive, and before we went for a bit of an exploration walk into the main centre.  The next day we decided to go for a bit of a tramp up Mount Taranaki.  It was a lovely day in New Plymouth but the clouds were hanging around a bit up the mountain.  We had thermals and woolley hats etc on and set off to Makatawa Hut which was supposedly a 2 hour hike to.  We made it in just over an hour and you could feel it getting colder as we were getting higher.  It would have been a lovely view from the hut if the clouds weren’t around, but you could just see the bottom of the snow on the valley beside the hut so we knew we were pretty high.  We didn’t stay there long as we were both sweating and it was too cold.  When we got back to the motel room the two little nana’s that we are we had a shower and fell asleep!  We did however rouse ourselves to have a few wines and head into town for dinner.  We had a nice relaxing time, it was great to just have each other for company, go where we wanted when we wanted and not to have to worry about any of the stress in our lives.

We have a few events coming up in the next couple of weeks – I am heading off to Wanganui this weekend with the Kapiti NBG (Police social club thingee) to do the Marton to Wanganui relay which we do every year.  Should be a fun weekend and on the Sunday, Jasper and I are taking the kids to the Phoenix soccer game at the stadium.  Child Cancer rung and asked if Liam would like to be a mascot so he will get to meet the players etc which will be great.  We are heading to see the Sound of Music in a couple of weeks too, as well as a farm visit too which should be good. 

 Well thats enough drivle from me for now, especially as I am supposed to be studying as I haven’t got much time to squeeze it in this week!

Hope everyone is well

Becs

x

Liam and I went to see Charles Davis his Plastic Surgeon yesterday.  He is very pleased with the way that Liams face is looking, and was very impressed with the way the tissue in his mouth moulds itself and now just looks like it should.  It is incredible as there was no skin graft or anything, just tissue.  Because Liam will not be having radiotherapy he is going to schedule a further surgery to drop the titanium plate to a lower level, he will have a good look around while he is in there to ensure there is no local recurrence of the tumour.  This will happen in the next couple of weeks and will be an overnight stay in the hospital.  We will then give Liam a break from surgery for a while and will begin the cosmetic side of the reconstruction, regarding the implanting of teeth, in the next year or so – but no rush.

Liam will have at least 6 monthly CT scans on the face and 3 monthly chest xrays to check for recurrence or metasteses for at least the next 2 years.  He is still doing really well at school and we are back into a reasonably good routine.  Jasper and I are sneaking away this weekend for some overdue “us” time and L and A are going to stay with their grandparents which they are very excited about.  Always fun at Nana and Papa’s.

Take care

Becs