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 187

Filed under: 1 — Rebecca at 8:28 pm on Sunday, October 26, 2008

We attended the long awaited Genetics appointment on Thursday at Kenepuru Hospital.  I haven’t written before now as I thought I would give myself time to calm down.  Unfortunately 3 days hasn’t done it, I am still angry.  The professor that we saw was very nice and had obviously done a fair bit of research into Liams type of tumour, however had not had a look at any of Matthews history as privacy laws being as they are they needed my permission, yada yada yada.  He did write down a family tree, mostly focussing on the Todd side.  Considering that Matt had 8 siblings he decided that there would be more evidence of cancer if there was a genetic link.  What probably pissed me off the most was that he kept telling me that there is no documented link between a Glioma (Matts tumour) and myoepithilial carcinomas.  Well hello, there is hardly any documentation on myoepithilial carcinomas full stop!!!  I find it difficult to believe that they could make these decisions without even looking at Matt’s history, or going into a more detailed family history.  Obviously I don’t have all the needed information about the Todd side as I joined them in 1991 and it wasn’t usually the topic of conversation over a nice cup of tea! 

There are documented rare links between glioma’s and bowel cancer (Matt’s Grandad passed away at a young age from that) but again nothing to link it with Liam’s type.  What I want to know is that isn’t there always going to be a first instance where a link is located?  Why does there already have to have been a link discovered. 

I was then addressed by the Professors supervisor who basically sat there and said to me “Most people in your situation think they are pretty unlucky” What the???  Nah I don’t think that, hell I think I am pretty bloody lucky.  Really what a stupid thing to say.  Then she went on to say that no they would not be doing anymore research into it unless I came up with more information.  I guess that is saying that hey if someone else in the family gets cancer give us a yell.  At least the first Professor said that they wouldn’t be able to give me an answer by the end of that appointment and would do more research, but then she comes in and says, no, no link, see you later. 

As you can tell I am still fuming.  I felt like a child who was being told off for wasting their time, I have never felt patronised by any of the specialist we have seen throughout both Matts and Liams treatment, but by christ that was exactly how I felt at this appointment.

I keep thinking that Liams tumour is so very rare that there has to be someone in the world who is interested in looking into it.  I did say that, with all due respect we are only a country of 4 million people, would there be a benefit of me contacting some of the Doctors overseas, but was shot down again and told that they had looked into the worldwide documentation, but if I wanted to to go ahead, but that it probably wouldn’t help.  Well guess what, I will be contacting the Doctors overseas, and finding somebody that actually does care, and may want to look into our histories, perhaps a student specialising in Oncology who needs to do a thesis or something.  Surely Liam must be of interest to someone???

I haven’t really got the headspace for this at the moment.  I have my first of 4 varisty exams starting on Friday, so once they are over I may be able to sit down and figure out a plan of attack.  But all I can say is look out I am on a mission!

Right, after that vent I feel a bit better, so will leave it at that. 

Becs



6 Comments

508

   Lea White

October 27, 2008 @   

Oh that is so frustrating!!! How can New Zealand ever become a world leader in anything with attitudes like that?

Have you thought to contact St. Jude’s in the States? They are one of the best from what I am able to gather with the number of blogs that I’ve been following.

Hang in there! And good luck with all the exams!

Lea White
http://whitesinnz.blogspot.com

509

   Nic, John & Steven

October 27, 2008 @   

God Becs what a frustrating time! Makes you wonder if these specialists have ever had a personal experience in their family/friends with cancer if more effort and attitude (in the good way) would be more forthcoming. All the very best of luck with your upcoming exams – thoughts will be with you. And once your mission begins you will find what you are looking for – I know you and you will get there!! Take care and …… deep breaths Becs. Nic xx

510

   Aunty Sarah

October 28, 2008 @   

Hi Becs

That is really crap! Plenty of child oncology specialists here in London, let me know if you need an investigator at this end.

Sarah xxx

511

   Alli Thomson

October 29, 2008 @   

Hi Becs

This sucks big time! How frustrating to be treated like that, it seems the only way to get results is to do it yourself!! You go girl, contact as many overseas specialists as you can, if it was our Riley, thats what we would do as well. If there is anyway we can help, just ask!
Alli

514

   Emily

October 30, 2008 @   

GO FOR GOLD BEX!
that made me mad just reading it! Lucky i wasn’t in the meeting!
You’re are def right to look overseas. How stupid to say there is no point. Thats the whole point of research! to discover things! not to find papers on things already discovered.
Anyway big hugs again, Its a nice comfort being able to read about you guys.
lots love
xx

515

   Heather

November 2, 2008 @   

Becs
You are not the only person to strike this in NZ with the “specialists” . I have a friend with a daughter born with various different and unusual problems. If it had not been for my friend getting on the internet and contacting people overseas she would have lost her daughter by now. This included getting her genetics looked at – as they have the heart condition Long Q T in the family. Many a time she has had to tell the doctors what to do as they did not have a clue. Her daughter can get suddenly ill very quickly.
I am very sorry you were treated like that.
Happens way too often. Hugs to Liam.
Heather

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