LIAM'S JOURNEY

Liam turned 8 years old today, I still find it hard to believe that I am old enough to have an 8 year old!  I can still very clearly see Matt holding this wee baby just after he was born. 

I rung More FM birthday calls this morning and he was quite impressed to hear his name on the radio, but even more impressed when he won the prize!  We called into the station after school and picked it up – a free game of tenpin bowling. 

He was very spoilt and got lots of presents, chose McDonalds for dinner and is now busy sitting building his latest lego. 

Now the countdown begins for Ashleigh’s birthday next Wednesday!

Becs

Just thought I would post this crazy photo of Coco with her head on my work where I am trying to study, and yes she is asleep!!

Just thought you would like to see Liam with his new haircut sitting with Coco.  What a handsome lad!  All is well, you can see in the photo that most of the swelling has gone down on his face, however his eye is still too high.  It is his 8th birthday on Wednesday which he is eagerly awaiting.  His party is at Glow Golf (mini putt under infrared lights) on Sunday so that should be a bit of a laugh.  Ashleigh also turns 6 a week later on the 20th and she is having her party at ten pin bowling.  Note the theme of letting other people clean up the mess!

Take care

Becs

Not one to sit on my laurels I contacted the authors of the article that I was given to read regarding myoepithilial carcinomas.  It didn’t phase me one bit that they were Doctors working at a hospital attached to Harvard Universtiy!  I was amazed when they got back to me within a few hours.  They gave me a couple of names of a paediatric oncologist and an adult oncologist who has some experience in successfully treating these types of tumours.  I have passed these onto our oncologist who is going to get in contact with them.  It is great to have someone who can perhaps make some decisions or at least recommendations for us instead of us having to make them.

I have spent the afternoon making balloon animals for Liam and Ashleigh (woman of many talents) – well actually I made Ashleigh a swan and she decided it looked like a dog poo, so maybe I’m not as good as I thought!

Liam is doing well, although the tube in his tearduct seems to be annoying him so we may need to get that looked at next week, but other than that he is doing great and looking great.

Thats all from us for now.

Take care and thanks for all the messages and support!

Becs

This has got to have been the hardest decision I have ever had to make in my life.  I have agonised over it all weekend, changing my mind about every ten minutes.  I woke up at about 2am on saturday morning and decided that I was going to adopt the “wait and see” approach, but of course then a couple of hours later – after lying staring at the ceiling for two hours – I had changed my mind again.  I did however receive some words of wisdom from a friend yesterday (thanks Mel xx) that the decision I made in the wee small hours was probably what my heart was telling me to do.

 I therefore let the oncologist know this morning that I did not want Liam to have to go through the localised radiotherapy, the risks just too high and the side effects too numerous.  I would also like to wait for the opinions from the US and Australia – if they recommend radiotherapy then I will consider it, but we will monitor Liams progress as it is for now. 

Now that I have made the decision I feel alot better as it has been a particularly rough time and I have probably never felt the loss of Matt more than I do at this moment as it is a decision we should have been making together. 

I now await the “experts” opinions before progressing any further, and I can try and turn my mind back to studying all about the New Zealand Taxation system *yawn*.

Take care

Becs 

The day we have been waiting for for 101 days has final come.  Liams tumour has been confirmed as a:

Low grade malignant myoepithilial carcinoma.

This is incredibly rare and the only documentation regarding these types of tumour that the oncologist has been able to find, documents 29 paediatric cases worldwide.  I am still having to make the tough decisions regarding radiotherapy, so am busy gathering all the information I can lay my hands on so we can make the best informed decision possible.  The oncologist is also going to get liams file together and send it to the US, Melbourne and Sydney to get the thoughts from people he values the opinions of.  Maybe once we have all this information we can make the best decision in the circumstances.

I am off to the Child Cancer Foundation tomorrow for a bit of a Mums pamper day with brunch, makeup and hand and foot massages and the kids are off to the movies with their Papa.  I think they are seeing Kung Fu Panda, so hopefully they don’t try to karate chop me when I pick them up.

 Have a good weekend

Becs

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