LIAM'S JOURNEY

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  

Just thought I would add this video as well.  Featured is Liams cousin Jack (10 years) who was upset that he couldn’t attend Liam’s birthday party because he had a motorcross race, so he decided that he was going to dedicate the remainder of his races to Liam.  On the side of the bike it has written “riding for Liam Todd”.  It was his own idea and I think it underlines just how much the other small people in Liam’s life are also effected by the diagnosis.  Liam thinks it is very “cool” and is pretty impressed.  It is great to see such a special relationship between the cousins.

Love to all

Becs

I took Liam into the Orthotics centre in Wellington today to be fitted for a splint for his leg.  They put a plaster cast on up to his upper calf which Liam said was very hot but was just like when he broke his arm (don’t remember them putting a cast on his leg when he broke his arm – ha ha) anyway, the splint will be made of plastic and will help to correct the position his foot is in and assist with the strength in his first two toes.  It will be worn at night so won’t hinder him during the day, thank goodness.

 Prior to the appointment we called into Ward 18 at Wellington Hospital and picked up all the courage beads Liam was owed.  He is now up to 100 and got his special milestone bead as well. 

I have received a message from the Clinical Oncologist who has had a reply from a colleague in Sydney who recommends a wait and see approach.  To tell the truth I am not sure how I feel about that.  It is very difficult to just wait and hope that if it comes back we will catch it early.  Part of me wishes that we could slam this bloody thing with everything in our power which is a “what if” I have always dwelt on after Matt passed away – should he have had chemotherapy at the time of radiation or should we have tried temozolomide etc etc.  Without a crystal ball I cannot answer any of the questions I want answered!  I guess, again, I will need to trust the Doctors.  The biggest problem I have is that he never showed any symptoms when the tumour was growing, it was only when it got big enough to notice the swelling that we figured something was wrong.  He will be having 3 monthly chest xrays and probably similarly spaced CT scans of the face.   We are seeing the plastic surgeon again next week so I dear say we will look at scheduling another surgery to drop the titanium plate.

Until the next post.

Becs

Today was the big day of Ashleighs birthday party.  We all arrived at the Kapiti Ten Pin Bowling for what I was anticipating as being another painful two and a half hours of children stressing me out, what actually ensued was a very relaxing two and a half hours.  The kids had a fantastic time bowling, with the girls not doing too bad a job, but nobody could quite get near Liam who wasn’t even using the guide.  Not bad for someone who can only see out of one eye!  One of the other Mum’s, Nicky, and I had a few goes and all I can say is thank goodness for those gutter guards!  What a fabulous venue for a party and I can thoroughly recommend it to anyone considering having one there. The only down side was that I didn’t realise it was licensed until we had finished – I could have been relaxing with a nice glass of vino!!

Next week we have an appointment at the orthotics centre in Wellington for them to check out a splint for Liams leg to try and get the foot back in a proper position and sort out his two weird toes.  We are also scheduled for an appointment with the oncologist again at some stage this week, but not exactly sure when yet.

The rain is now coming down again, great weather for a duck, shame we aren’t one. Have a good week and I will update when I have more news.

Becs

Kapanui School had their Olympics day today.  Out of all the children at the school (over 700 I think) Liam was chosen to be the torch bearer and light the Olympic flame.  His ‘whanau’ group were representing Japan so he is all dressed up in his Japanese outfit as well.  The torch that he carried was actually used in the Seoul Olympics in 1988.  It was a big honour for him to be chosen and he was very excited and of course I was very proud!

To see video of the big event click play:

Becs
(your pretty impressed with my ever increasing technological knowledge aren’t you!!)

I took Liam to see the Optician today, earlier than expected which was great as it meant he only missed out on lunch and has now gone back to school (much to his disgust I might add).

The optician, Annette, confirmed that there is damage to the optic nerve on Liam’s right eye.  The damage is irreversible.  He has a small area which still works but he has to move his head about to find the spot and even then there is no periphial vision and it cannot be corrected with glasses.  He still has perfect vision in his left eye which is doing all the work.  There is no reason why he cannot do  everything that a normal two eyed person can do.  Even racquet sports, rugby getting a drivers licence etc.  The only things he will not be able to do are get a HT licence or fly a plane, but hey who cares!  He certainly doesn’t have a burning desire at this point to drive a truck or become a pilot.  He is not fazed by it at all and because his eye isn’t working he wants to know if they can take it out so he can have a glass one so that he can use it as a party trick and take it out and put it in his drink. (think I have you Coops to thank for this little insight!)

I guess it has just made the decision surrounding radiotherapy that much easier as the damage to the eye has already been done.  Will keep you posted.

It is a beautiful Kapiti Coast day, I am sitting with the door open and the sun streaming in which is good cause it was freezing this morning, roll on spring.

Take care

Becs

Up early with the sparrows this morning as Ashleigh was very excited about it being her birthday.  When she was asked how it felt to be 6 she said it felt a bit “freaky”, but that she felt a bit bigger.  She was very spoilt and like Liam got some very special presents.  We have got swimming after school then onto McDonalds for dinner, not Burger King as she wants to get the olympic mascot toys.

We went and saw the Oncologist today and Liam had a couple of xrays.  The xrays were all clear which was a good start.  The Adult oncologist in the USA that we contacted believes that we should be hitting this cancer with both chemotherapy and radiotherapy and treating it very aggressively.  The localised radiotherapy still comes with the risk of irreversible damage to the eye, and of course there are numerous side effects associated with the chemotherapy which would be used as a precautionary measure to prevent the cancer coming back somewhere else (metastasising) .  Dr Hamilton is also still waiting for a response from a paediatric oncologist in Memphis.  The problem is that treating adults and childrens cancers are very very different, what works in an adult may not work as well or at all in children.  Once we get another opinion from Memphis we can hopefully make a final decision.  Until then we are waiting again!  I am certainly over this waiting business.  We are going to see the Optician tomorrow – they squeezed us in with the Optician having to work overtime for us (thanks Wendy!!! ) as there is some nerve damage at the back of the eye, which may be permanent, so if that is the case, then the decision of radiotherapy is made a bit easier as the damage is already done.

We are back to see the Oncologist next week, and perhaps we can finally take a step forward instead of sideways.

Becs

Don’t panic!  I have changed the look of the blog – was just mucking around and decided a change is as good as a holiday! 

We are off to the Oncologist again tomorrow, he has heard back from the Oncologist in the US who has treated 3 adults with the same type of tumour with good results.  He has recommended an aggressive treatment, so we are heading to our meeting tomorrow to decide the next step.  Liam will also undergo a chest x-ray to ensure he is still free from disease. 

It is also Ashleigh’s 6th birthday tomorrow, so I think it is Burger King for dinner.  I guess at least I don’t have to cook!

I will update tomorrow after our appointment. 

Becs

The party was scheduled for 11am this morning at the local Glow Golf.  Glow golf is a mini putt design under infrared lights.   It involves the cities of the world and things like the Great Wall of China, The Eiffel Tower and the Leaning Tower of Pisa were all glowing.  The golf clubs and balls also glowed (not that it helped the kids hit the balls any better).  I think the funniest thing was the pens that we could write on each others faces with and were only visible under the infrared lights.  It was very hard to take Jasper seriously when he had glasses, a moustache and a big “L” on his forehead, courtesy of Olivia. 

 I consider it was a successful day because no one ended up with a golf club wrapped around their head or a golf ball in the eye.  Liam had a fabulous time and was very spoilt with all the gifts he got.

Now we await Ashleighs birthday on Wednesday and her party at Ten Pin Bowling on Sunday. 

Great to see the Kiwis on the medal table,  and also wonderful to see the All Blacks take apart the Springboks.

Take care, until the next posting.

Becs