LIAM'S JOURNEY

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

Well so much for my future being paved with lots of dollars, I didn’t win the big 30 million on Saturday night, I did however win $61. I guess that is better than nothing! (Sorry Indu, no cut on the million dollars) We did have a wee bit of excitement when we saw that one of the winners bought their ticket at Johnsonville lotto, which was where Jasper got his from, but alas it wasn’t us. Oh well back to work – oh wait a minute, I don’t have a job, back to the study then!

Anyway, Liam was well enough on Friday so I made him go back to school. He had mooched around all day Thursday saying he was bored, so I thought he was better off back at school. He didn’t seem to agree though, until I told him that it was dress up day, and he immediately changed his tune. I then loaded him up with tissues and wipes in case his eye and nose weeped, and sent him off.

His eye is looking fantastic, it is still slightly swollen and very red but you can see that the eye is in a much better position, and pretty soon apart from him being a bit gappy on the tooth front, and the small scar beside his left eye you will not be able to tell that he has anything wrong with him.

With a bit of luck this is the turning point in the journey and the nightmare of the last 5 years is almost over, and we can returning to being a normal family (as normal as we can be I guess!)

Liam and the lego, Coco looking after his buddy Liam!

And there you have it, Liam has come through another surgery, another page in the book. 

We actually came home yesterday, but stayed with Jasper for the night before returning home this morning.  Liam was so bright and there were no complications save a bit of blood coming from his eye and nose so the registrar checked him and said if I was happy that we could go home.  Obviously he didn’t need to say it twice and about 2 minutes later we were out the door!  I had a message from his surgeon later on saying he came to check on Liam and he assumed all was okay as we weren’t there!

Liam is great, his left eye is swollen shut like someone has punched him, and we stopped at the supermarket on our way home and we got a few strange looks, I am surprised I didn’t get tapped on the shoulder by CYFS!  (Child welfare department for those of you outside of NZ)  He also has two tubes which have been placed in where his tear ducts used to be to enable the tears from his eye to drain into his nose instead of weeping out the eye which has been prone to happen.

I will keep him home from school probably for the rest of the week – will see how he feels tomorrow and he may even be able to go back then.

Becs

Here is the link to an article of interest too – finally we have some paediatric oncologists in Wellington -
http://www.stuff.co.nz/4728622a11.html

I have good news to report!  Liams surgery went really well,  after the initial hiccup of getting his portacath accessed.  He had decided to go with the needle this time instead of the gas as it distresses him so much.  Unfortunately he had worked himself up into such a state that he had convinced himself that it was going to hurt, even though Marcella (District Nurse) had been accessing it with no problems at home.  Indu the anesthetist was absolutely fantastic, she is so very patient and in no rush at all, which was a good thing as it took us half an hour to get him calm enough to get the port accessed!  She is wonderful and I can’t speak too highly of her.   I promised him a million dollars if went he counted he could get to 6, I am going to renege on that deal as he counted too fast and Indu said they were going to set me up, unless of course I win the 30 million on Satuday.  Figure we are in with a good chance as I am sure our future is paved with gold (or lots and lots of dollars!)

The surgery went really well, Charles has adjusted the titanium plate downwards and a little bit forward (or was that backwards can’t remember) and had a good look around.  Again I can’t speak highly enough of him as well, he is such a reassuring presence and I always know he is in safe hands with him. There is absolutely no sign of any regrowth of tumour, so they also took out his portacath.  Yay!!!  It is really nice to be able to have some good news to report for a change.  I am so used to hearing bad news that it was a bit of a shock to the system to get some good news!  This will be the last surgery for quite some time, which is great as I think the poor buggar has had quite about enough.  When I think about what he has endured in his short wee life with losing his Dad and having to go through all of this I figure he has great things in store for him in the future.   

They will obviously keep monitoring him closely with 6 monthly CT scans and 3 monthly chest xrays, as the risk is still there, but hopefully with each passing month and clear scan, he can get back to being a normal kid. 

Liam is now sitting up in bed quite happily making his latest Lego acquisition, a secret agents truck type thingee.  All things going well we should be home tomorrow but he will take it easy for the rest of the week, unless I am feeling particularly mean and might send him back to school!

The staff here are great as usual, we met a nurse in the theatre reception who has been following this blog, (hi!, forgot to ask your name!!) and have been looked after by the fantastic nurses yet again.  Liams nurse at the moment Tamara and I have just spent the last 20 minutes or so talking about shift work and how much we hate it!

Thanks for all the messages, its nice to know people are still reading the blog and thinking about us. 

Love Becs, and the mighty lego building Liam

We have had a good week for the last week of the school holidays.  I took the kids to the movies one day and to the gym a couple of times where they did a bit of a “jump jam” session which they had a marvellous time at.  On Friday Carol and I took them to do a spot of ten pin bowling, and we were a bit upset when we were beaten by a 6 year old and an 8 year old.  Always next time I guess!

I attended Kyah’s 3rd birthday party yesterday, her parents Shanell and Jason had brought it forward as they know that she will not make it till her actual birthday next month.  It was a big decision to go, I did hesitate as I was unsure about all the emotions that were to be faced.  In the end Catherine (another CCF Mum) and I packed up some meals and presents and headed in, minus our children.  (Liam and Ash were both at parties).  I am so pleased that we went, it was such a celebration for Kyah and the family, and it blew away all the sadness I was feeling to see them and be able to not only say goodbye, but feel like we were helping in some small minute way.  It was also great to see that Kyah was awake and alert for most of it, and aware of what was happening around her.  They are and awesome and inspiring family. 

Today we got up early (lucky I enjoyed my last sleep in for the holidays yesterday) as we were participating in the Tour of Waikanae.  This essentially is a bike ride around Waikanae, which you can choose either the 25, 50, 75 or 100km options.  Jasper took Jessica, Amelia and Liam on the 25k route, so that Olivia and I could attempt the 50k track as her and I are doing the Cycle Challenge around Lake Taupo in late November.  It has been a beautiful day, and I even have a little bit of sunburn to show for it!  The kids did really well and enjoyed the ride, and Olivia was brilliant, keeping up with a fast pace and we completed the course in just over 2 hours.  I will post the finshline photos when we get them.

We spent the rest of the day at the beach, and had a BBQ for dinner.  All and all it has been a fantastic weekend to end a fantastic week.  Can’t say I’m too upset about the end of the holidays tho!

Liam is scheduled for his surgery on Wednesday at Hutt Hospital, we are first on the list again so are due there at 7.15 in the morning.  He will be in surgery for about 2 hours, and if the area is free of tumour they will take out his portacath which will be good as he needs to have it flushed every 4 weeks at the moment.  We will be staying at the hospital for about 2 days, so I will update the blog after the surgery, so all fingers crossed please for a clean and clear result.

Hope this finds everyone well

Becs

Today is my 35th birthday!  I have had a nice weekend, Jasper and I went out for lunch on Friday, then we had a few friends around for a BBQ last night which was lovely and the kids brought me a big box of chocolates for breakfast this morning!  (Jasper also cooked me some eggs!)  It has always been one of the tougher days since Matt died to get through as he always used to make such a big fuss of me and its these times that I feel his loss the most, so it was great to have Jasper around looking after me.

The kids had a great time playing playstation and bashing each other for most of last night.  I have had a nice quiet day today, (few too many bourbons last night I think) and will aim for an early night, after all I’m on the downward slide to 40 now!

I do feel so sad that I can hit 35 but Matt only made it to 34 and it looks like little Kyah may not even make it to her 3rd birthday.  It just isn’t fair, I wish with so much of my heart that I could take Shanell and Jasons pain away and make Kyah well again. 

We have a tentative date for Liam’s next surgery being the 15th October.  I am a little nervous in case Charles finds some recurrence of the tumour while he is dropping the plate, but will cross that bridge if or when we come to it.

The kids and I have decided to go jump into the spa so will write more later!

Becs