Well, we certainly have had a topsy turvey week! We celebrated our great news (or so we thought) over the weekend with the awesome company of Gina - and we had an absolutely amazing weekend filled with LOTS of laughter....and funny stories!! I will post some photo's of our weekend together shortly!
On Monday we met with Dr McCrystal to give him an update on our successful admittance to the AU drug trial. When he saw my eye he was concerned that it was still so swollen, and as a result referred me to an Acute Opthamologist on the Monday evening. Unfortunately our "good news" was dampened with the fact that my tear duct is blocked probably due to more cancer.....and whilst they were checking everything else, I was diagnosed with Retinal Cancer in both of my eyes! That explains why I have been having so many problems with my vision, which previously they have put down to the brain radiation!!
Anyway, Marc and I flew into Sydney yesterday and met with the AMAZING Fran. We felt as though a weight had been lifted off of our shoulders as soon as we saw her!
So, basically the next steps are to prioritise our "issues" which at the moment are my breathing and lung function - so we are off to start the new trial drug (derived from a clever little sea sponge) this afternoon, and wiil have a further treatment next Thursday, and I will fly home on the Friday (29/10). We have faith that this drug will have an effect on ALL of our tumours, and start getting things under control again. For this cycle I am required to be based in Sydney so that they can monitor me for side effects etc, however the next cycles may be more flexible, so that I can spend the week inbetween treatments in Melbourne with family and friends which will be great.
Can you believe this - Fran's husband is an Eye Ophemologist - so we have an appointment with him on Friday, so he can take some scans of what is going on with my eyes, so that we can monitor their progress as we make our way through the next treatment.
We caught up with Tim last night for dinner which was great too!
Lou
x
Just another "little" hurdle that I'm sure that the clever little sea sponge will fix for you guys!
ReplyDeleteHad an absolutely BRILLIANT time with you guys in NZ and wish that we could be there in Sydney to hang too! (Hey Tim!!!)
To borrow from the sage words of GrrrrMaman - we, your "fans", continue to love and support you - from all around the world! Hooray for clever little sea sponges, Fran and her hubby!!!
We look forward to hearing how the sea sponge is kicking the cancers' butt!
LOVE YOU!!!
Gina, Cory, Jalen, Shadow, Duke and Tilly
XXXXXX
Ma Cherie Louise......Do you have you left ear ringing ??? my mother used to say when it happens, it is because someone is thinking of you !!!!You must have a real orchestra coming in all the time.
ReplyDeleteI just "googled" retinal cancer....great news : very successfully treatable.
My wish now is : when you will be finished with all those "demons" that you become an Oncologist Doctor like Fran.
I understand that you know a lot of people in Sydney and that you want (and Marc) your privacy. (As per Francoise..nag nag) BUT a quick cup of tea (or stronger) I join you
anywhere !!!!!
MUCH MUCH love
GrrrrrMaman
ps Tomorrow night we are at a dinner for SNOG (Sydney neuro-oncology group)Fran could be there.John (ex) is on the board to thank the North Shore Private for the good job they did on me and a year later on him!!!! (sweet story...hahahaha)
Grrrand Maman said it well (not bad for a foreigner!). We are wishing you all the best and always thinking of you. Go the sea sponge, attack those cancer suckers! Love to you and Marc. xoxoxo Francoise, Adam, Heidi, Fraser and Clover Bear.
ReplyDeleteLou,
ReplyDeleteI am not sure if you have heard of 'Sponge Bob Square Pants' but its a cartoon show on Nick Junior TV Channel. Anyway....I have a good feeling that Sponge Bob and his friends are gonna open a can of whoop ass on this once and for all:)
Like GrrrMammmmmmman (?) says.....ringing in your ears or as my Mum used to say hot ears...Everyone is thinking of you. You are such a special person and I would have you on my team everyday:)
Please stay strong. All my love Sal xxx
Would be great if you both were able to come to Melbourne so we catch up for a good gossip session.
ReplyDeleteI bet Fran's husband being a Eye Ophemologist is a big weight off of both of your shoulders, probably feel like mates from way back which will make everything more comfortable.
Really hanging to see you both to catch up, miss you and lots and lots of love!
Lou xx00
Lou,
ReplyDeleteI know second comment on the same page! Last night I was thinking; each time you reach another dip in this rollercoaster its as if you also get a lift. You must feel reassured that Mr/Dr 'Fran' is an eye specialist? So what I really wanted to say is that every cloud has a silver lining:) xxxx
Ps - its one degree here today. How cold is that for October? Roll on summer xxxx