Onwards

Today was a tough day just like last Monday was. But somehow, the finality of Michael telling us this was the end of the road surgically and that Rosie was one of a tiny percentage of his patients (0.2%, he offered when I quipped that Rosie was very special) whose AVMs he had not been able to obliterate completely, meant that both Rosie and I were pretty flat this afternoon. We both just lay around for a while after Michael had been to talk to us, absorbing the information and quietly being flat together. While I was out of the room talking to Jo on the phone, a parcel from Sandra was delivered to Rosie and when I came back in, she was holding what looked like a nicely boxed bottle of whiskey.



In fact, it was a set of three magnetic games played on a rolled up magnetic cloth board: chess, draughts and backgammon.

While Rosie was still compelled to be in bed because of the restriction on movement after an angiogram, Felicity, the excellent speech pathologist, came and spent an hour and 45 minutes working with her. It was a great use of the "down" time and started to give Rosie (and me) our mojos back. After the early ward dinner, which I enjoyed but Rosie just tasted, preferring several of Rosalind's brownies instead, I talked Rosie into getting out of bed, letting me brush her hair, getting dressed and going for a walk with me.



We walked around our whole floor, outside around the 3rd floor garden, down to the ground floor and around some corridors we hadn't explored before (doing reading exercises when door signs presented themselves), outside the cafe and up the footpath outside the hospital to where you can see the Travelodge, back up to our floor and around those two wards again - a good workout to regain some energy and optimism.

We were about to look for Masterchef on Rosie's TV when Jo, Sandro and Alex came to visit. Alex is 17 and has had a lot of hospital time in his young life because of having leukemia as a child. Having endured lots of brain irradiation, chemo and rehab, he has a special perspective on what Rosie's going through as does Jo on what the Mum feels, so it was good to have them for company tonight. We got out Sandra's new backgammon game and taught Alex and Rosie the basics so they could play while we had a cuppa with Jo's choc chip cookies. After they left, Rosie was energized, back in form and keen to amuse herself with SIMs on her computer before bed. I set her up for the night with phone, nurse-call and light remote at the ready and left to do laundry and watch tennis at the Travelodge.



I wish the surgery had given her the complete cure she wants, that she were one of the 90% for whom the procedure goes without a hitch and that we were celebrating tonight but it is still a moving, inspiring and positive experience taking this life journey with her. Journey is an overused word but quite appropriate in this case, I think.

Bon Voyage, Jessye, and visit from Michael

At 12:15, Sandro came to take Jessye to the airport. It has been fantastic having her here for two weeks - she and Sophie have kept Rosie's spirits up during the long haul and Jessye has done special duty as Rosie's sleepover buddy.












At about 1:00, Michael and David came to talk to us. Michael said that the remaining AVM was in a critical part of the thalamus and he would not want to take any more of the thalamus out surgically because of the unacceptable risk of harm to Rosie. He was sure that he had gone to the limit of what surgery could do for her and that none of his respected colleagues anywhere in the world, including Robert Spetzler in Phoenix, would consider doing more.
He thought that her two surgeries removed the risk of hemorrhage in the near future and that there may now be a role for Gamma Knife, a radiotherapy technique. We already discussed this possibility at our early consultations and knew that Macquarie is the only place in Australia with Gamma Knife. In fact, I had already been in touch with John Fuller, who is the Gamma Knife guy here, through a connection with a good engineer friend in Melbourne who is working on pioneering equipment with one of the Macquarie surgeons.
Michael talked about the international leaders in this technique in Pittsburgh and at the Mayo Clinic in Rochester, Minnesota and said that Macquarie has connections with both and that they regularly confer about cases in the planning stages of treatment. We'll talk more about that later.
Michael would like another comprehensive MRI of the thalamus done tomorrow and then we'll proceed with talking to John Fuller later in the week.

Not all clear

We talked to Dr Wilkinson who said we would need to talk in detail with Prof Morgan but from the initial quick look, it seems there is still some AVM left. Not the news we had been hoping for, of course.
We're back in the room and Rosie will be flat on her back till about 2pm. She's not happy about the result but is not distraught and is still able to laugh and carry on with Jessye who's ineptly feeding her cookies because Rosie can't bend her left arm due to the cannula again.


She said she had a bad feeling about it because she started having headaches at the end of the week after not having any for a while and wondered why. Maybe she could feel something afoot.

Out of angio

Rosie's in the angio recovery room for half an hour then she can go back to her room to lie flat for four hours. We're waiting for Dr Wilkinson to tell us something but the guy who brought her out (don't know his level of expertise - might be a nurse) said, from what he could gather, they couldn't see anything, ie no AVM.
Let's hope he's right.

Cafe

She just went in at 8:57. Michael came to see us just before and said he'd be tied up in surgery all day so wouldn't be able to see us till the end of the day but that Dr Wilkinson, the angiographer, would give us an idea. Jessye and I are having brek in the cafe then will wait in the angiography waiting room. Should be 30-40 mins.

Rd 2, day 7, waiting for angiogram

The puzzle was useful for while we were waiting for Rosie's porter to wheel her off.




Rosie put the last piece in (apart from the blue one we can't find)....


Triumphantly!



Finally, we made our way to the angio area. Rosie has the "Mum, really?!" face on.



Basically cheerful and just wanting to get on with it. She quite enjoyed the last angio because she could see the screen and watch like reality TV.




They are all on Fiji time here so we are still waiting - up the river helps pass the time.