It's about time for an update!

From my Son Scott:
Hello again everyone!

It's been months since my last email and I'm not sure where I left off...

Hayley had the brain biopsy done in December, and with the results of swelling in the sample they extracted they diagnosed her as having CNS Vasculitis. (Central Nervous System Vasculitis).

As a treatment the doctors were satisfied that we agreed to putting Hayley on a 3 month cycle of Prednisone steroids to help reduce the swelling in her brain. They then would re-examine her status, and then decide what next.

So after 3 months of steroids, and the mood swings that come with them we're happy to report that our little Hayley is doing great. She's packed on a few pounds, mostly in the face and tummy, but with all the dancing she does she's managed to stay in pretty good shape. Some say she looks better with a little more meat on her.

This week, Monique & Denise took Hayley back to Sick Kids for another MRI scan.
The next day we went back downtown to meet with Dr. Benseler and who had already looked at the results.

Right away she asked if we wanted to see the MRI results, and we were very pleased to be able to see the scan side by side with the scan of 3 months ago.

The difference was amazing! And not just because they finally got a new MRI machine to replace the one that broke when they had a flood in December.

Swelling shows up as white areas on the scan. Comparing the two scans, if I had to give a percentage of how much of the "white area" is gone since the last scan 3 months ago, I'd say the scan is 85% better.

We are waiting on an email photo of the scan but haven't got it yet.
When we get the email photo we'll we able to show some of you the before and after pictures.

Anyway, pictures say a 1000 words, and we didn't need much more than that to know that we're doing the right thing.

Even though there have been a few minor headaches and body pangs, these seem to coincide with changes to her Prednisone dosage. Usually about 2-3 days after the change. The doctors agree that this is common but are very pleased with how well she has responded to treatment. In fact she commented on how well she has just kept on going as nothing was wrong. Oh to be a kid again!!

Being that there is still some evidence of swelling, and it's not recommended that you stop the steroids "cold turkey", they want to be safe they and have her stay on the same dosage one more week, and then continue with a slower "drug taper" over the next 22 weeks. 3 weeks @ Xmg, 2 wks @ Ymg, etc.

If all goes well that makes the magic day August 10th!

Eventually she'll be down to a mere 2.5mg or 1/2 pill a day.
Compared to the 10 pills a day she started with before Christmas this will be, as Hayley would say "easy-peasy" <- spelling??

By my count that's about 33 weeks. I think that the doctors told us "3 months" just to get her started. Knowing full well that once you start you can't stop quickly.

Anyway, we're so happy that she hasn't had any real adverse reactions to the drugs, and that she's doing so well, and that the MRI revealed such a marked improvement, that it's OK with us if she stays on it until it's all gone. By that I mean when the MRI's show no white/light spots on the scan.

When I think back to the day in the critical care unit when Hayley had tubes in her, couldn't speak to us, or even see us, and was hooked up to all kinds of machines I think about how lucky we are that she's OK and seemingly getting better every week/month. Having a hospital like Sick Kids so close by is also a godsend.

There will be another MRI in 3 months to check on things and I think that if the swelling is gone they will stick to the August 10th date. If not they may extend if some time longer. We will be keeping our fingers crossed.

Monique and I want to say THANK YOU AGAIN to everyone who has been thinking about Hayley.


Scott Roe