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 128

Filed under: 1 — Rebecca at 8:06 pm on Thursday, August 28, 2008

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.


1 Comment



August 29, 2008 @   

I have caught up on the last few entries and am sympathisising with the “hurry up and wait” drama – we went through that many times over the course of Kyah’s treatment.
One thing I will say is that you are Liam’s advocate. You live with this 24/7 and you are well within your rights as a parent (if nothing else) to nag, nag, nag and demand answers to your questions. Being told to wait while your child’s life potentially hangs in the balance is HUGE! So don’t let the doctors become complacent.
At times I’ve probably driven Rob and Mike nuts with my constant questioning(!) but the reality is, I am Kyah’s voice and if I am not fully informed, then how can I make the right choices.
I hope the waiting is over soon and like you say, you can move forwards rather than sideways!

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