LIAM'S JOURNEY

In May of 2006 we lost Matt, Liam's Dad after a courageous battle with a brain tumour, he was 34 years old. In April of 2008 we got the devastating news that 7 year old Liam had an extremely rare form of cancer in his sinus cavity. This blog is where we can update you on Liam's progess with his brave battle. "If children have the ability to ignore all odds and percentages, then maybe we can all learn from them."

Day 205

Filed under: 1 — Rebecca at 8:05 pm on Thursday, November 13, 2008

Hi!

I have finally got the internet back up and running. Not having it for two weeks was very strange, I am not sure what we used to do before internet.

The last week or so has been very busy. We went to Wellington Zoo on Saturday and got to meet the new Paediatric Oncologists, Christian and Mwe Mwe (pronounced Moi Moi) at an afternoon tea with all the rest of the CCF community. It was fabulous to meet them and it wasn’t too long before I bailed Christian up and explained Liams case to him. I was terrified that somehow we were going to slip through the cracks and they weren’t going to have Liams case passed on to them. I told him about Matt and Liam and the family history and he said well there must be a family connection there, and is very very interested in Liam. I was so relieved. Finally someone who is on the same page as me and is actually listening to what I have to say and someone who cares. We now have an appointment to see him on Tuesday where we can sit down and go through all the details, and see what he thinks of the path we have taken so far and what we should do in the immediate future. I must admit I feel like a great big burden has been lifted from my shoulders as the onus for figuring out treatment options has now been passed back to where it belongs. Wellington are lucky to have them and I hope the DHB comes through with their promises to enable us to keep them here.

The rest of the week has passed by in a busy blur, in between all the touch (have ended up coaching if you please) and swimming and other after school activities.

Ashleigh and I went to touch last night, while Jasper and Liam went down and had some special time at the beach. Unfortunately Liam developed a suspected ear infection, and Jasper raced him to Waikanae Medical Centre, who saw him straight away – I think they are used to us by now! – He was not a happy camper and the Doctor could not see his ear drum so wasn’t able to definitively say that he had an infection. So I sat there later thinking if it is not an infection is it something in there pressing on something else, do I overreact and ring Ward 18, do I potentially underreact and not do anything, am I being silly and maybe it really is nothing! Arrrgghh it is really hard to know what to do when everything is so uncertain. I decided in the finish just to keep an eye on him and pamol, ibruprofen and a dose of antibiotics seemed to do the trick, and he has been fine today, even playing a game of touch. I told the ref at touch that Liam was going to play with no shoes on (against the rules) as the shoes slow him down as he struggles to run in them because they twist his foot and he is so fast with no shoes on! He will finally get his splint on the 24th of this month (about 3 months after the first appointment!) and hopefully we can go some way to fixing up his ankle.

Liam and Ashleigh have been invited to ride on the Child Cancer float in the Christmas Parade on Sunday and will be dressed as Pirates, so they are quite excited about that, so if anyone is intending on going look out for them.

Hope this finds everyone well, love still being sent to Shanell, Jason, Kaleb, Jordan and Kyah.

Becs



1 Comment

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   Nic, John & Steven

November 15, 2008 @   

Hi Becs! Great news regarding your ‘meeting’ with Christian and all the very best for Tuesday – sounds like you have someone on your side now so am feeling very positive about where this will head. Not a moment too soon!! Hope you all have fun tomorrow and hope the weather is good for you all. 33 down here today but far too hot if you ask me!! Have been keeping up with Kyah’s journey daily and what an amazing wee girl she is and her family just blow me away with their courage – it is such a heartbreaking experience for them all to be going through and I hope that Kyah is at peace soon. Keep us updated when you find the time! We miss you when you dont post! Take care and hope that wee drinky after your exams was a good one!! Nic x

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