THE O'NEILS: May 2011

Sunday, May 29, 2011

One of our trips to Perth (Maple fest)

Once we had children, especially, we started several annual ``traditions``...Going to Maple fest in Perth is one of them. Highlights include spending time with the Devlin`s, pancake breakfast,music, shopping, more food, kids activities, small petting zoo etc. It is always fun, the girls love it and so do we. I didn`t post pics of the activities this year but just a few quick shots of our little fam aside the big ben statue...Already looking forward to next year!

The mommy and Daddy...

Baby Alexia...

...big girl Olivia

Tuesday, May 03, 2011

On the cancer front...

I do realize it has been sometime since I posted an update on the cancer front. Looking back I haven`t written anything since September and December of last year. Mainly I was waiting for my first official post treatment scan so that i could forget all the difficulties in my recovery and have a brilliant update for you all declaring that the SCT worked and that I was in remission.

Sadly, that is not the post I will be making today. At the end of March I suddenly had a pain (and lump in the nodes under my left arm)...it literally came out of nowhere and to be honest i didn`t think too much of it because nodes associated with Hodgkin's disease are not typically painful. Regardless I mentioned it to my doctors and was sent for an ultrasound and biopsy of the enlarged nodes.

A week later I received the result which had come back positive for lymphoma. Disappointing and upsetting to say the least. I figured that was a call i would get one day, but i figured it would be a number of years down the road...not 6 months post transplant and 3 months post radiation. Anyway, the biopsy did confirm lymphoma and subsequent scan showed stable disease in some areas, disease progression in other areas and some new disease as well.

This has been an incredibly overwhelming time for me. This disease is not something that is going away. Over the last 16 years since my initial diagnosis i have been through standard first and second lines of treatment...and then last year a 3rd line of treatment which was a second auto SCT (still a very risky proceedure). Now i am just trying to find ways (treatments) that are not super-toxic and that can manage the disease for as long as possible.

The option I have chosen next unfortunately takes me out of the country every 3 weeks (for up to a year) and will be a huge finacial burden on our family. This is a trial drug which is currently waiting FDA approval in the US. The drug cost for now is covered under a compassion care program, but the hospital adminstration fees are through the roof and not covered by any provencial or private insurance plans...as well travel, lodging and gas...FUN. It`s called SGN-35 (from seatle genetics). The closest facility offering this trial program is in Rochester NY. I am currently waiting to be contacted by them for a consultation, hopefully to be accepted into the program without delay and begin the treatments asap. Hopefully I am able to get in several infusions before the drug is FDA approved because at that time unless the drug company brings the drug on the trial phase to Canada, I won`t have access to it anymore. Apparently it is showing very promissing results, and so I keep ``hope``.

In a nutshell, that`s about where we`re at on my cancer front. I put off this update long enough. I will try to update these sort of details more frequently in combonation with the photos i try to post regularly.

-Stacy :)