September 1998 January 1999 January 2000
To: A long list of family and friends of The
Bruyeres
Re: The next step in our cancer
journey
Dear friends,
We are writing to share with you the next
significant step in our cancer journey: Chris will undergo a major surgery at
Memorial Sloan Kettering Cancer Center in New York on March 7th, 2000 (date will
be confirmed on March 6). The two of us will be in New York for 2 to 4 weeks
following the operation. We will be out of touch during that time, so we thought
we would bring you up to date BEFORE and ask for your help DURING.
A
little bit of background.
==================
Chris has not been feeling
very well since early January. He lost his appetite, feels tired/exhausted all
the time, has difficulty sleeping for more than a few hours at a time, and has a
significant amount of discomfort in the abdominal area. As most of you who
have seen us recently understand, this is a significant and sudden deterioration
in his health.
Starting in August 1999, our oncologist suggested we take
a break from chemo. Summer and the back to school period were great. In October,
we decided to go to Boston and start on a macrobiotic diet. Although
socially difficult, the diet went well. When we visited our oncologist again, he
suggested we stay off chemo a while longer to give Chris' immune system a chance
to recover, and he mentioned (again!) that there are "limited options". We
thought this would be a good time to get a second opinion from Memorial Sloan
Kettering (MSK) Cancer Center in New York, and he agreed.
The oncologist
at MSK said he didn't think it was a small cell neuroendocrine cancer - it's
often misdiagnosed, and it's a very aggressive cancer (i.e. twenty months later,
Chris wouldn't normally still be around). So back home, we insisted on doing
another biopsy (we had suggested this on a couple of occasions, but had been
told that it was not necessary). The biopsy was done December 17 and sent to
both Toronto and New York for analysis. New York called us in early February to
let us know that it was, as they had suspected, a different cancer: Desmoplastic
Small Round Cell Tumor (DSRCT).
Although we were happy to finally have a
specific diagnosis, it is a very rare cancer and it means that Chris went
through 20 months of sub-optimal chemo. You see, the chemo drugs used for Chris'
treatment are similar to the ones normally used to treat DSRCT, however in
different doses and cocktails. The tumors have now developed a resistance to
these chemos, so four out of the five chemo drugs are no longer very effective.
There is one chemo drug left to try.
New York strongly recommended an
aggressive debulking surgery first, followed by chemotherapy. Our oncologists in
Toronto had dismissed the surgery option twice in the past (too difficult, too
many tumors, and not a good quality of life to follow). Their recommended plan
was to begin a chemo treatment as if we had just found out about it (probably in
lower doses than optimal, and with an expectation of reducing the tumors by
about 20%). You can imagine our confusion and the difficulty in making a
decision. As always in these cases, it is best to listen to your heart, or gut
feel, and ours is pointing south of the border.
Our
Strategy
=========
1. Remove 90-95% of the tumors with this debulking
surgery in New York. Recovery will take 3 to 4 weeks.
2. Give high dose
ifosfomide chemo (the only one Chris hasn't had yet) to get another 3-5% of the
tumors.
3. Try an experimental treatment for the balance...
The
overall goal is to beat all odds and write about our cancer journey with a happy
ending!
How you can help (since most of you
asked.)
================================
On March 7th at noon EST, we are
asking each of our friends & family to take two minutes to say a prayer,
think positive thoughts, or send healing energy to Chris. You see, we are very
fortunate to have a large and supportive circle of friends & family and we
are convinced that when all that positive energy is combined, miracles can
happen. The operation will last 6 to 8 hours on that day. Following the
operation, to help with the difficult recovery, please continue to send positive
energy his way. We thank you in advance!
Many of you have offered us
financial assistance and we are very grateful for this "safety net". However, we
think we will be OK financially because the Ontario health care system will
probably agree to cover the expenses for the operation in New York (that's
another story, but it's a long one). If, for some reason, OHIP doesn't come
through, then we would need to do some kind of a fund-raiser. But for now, we
are keeping positive thoughts.
The two of us will be in New York for
about four weeks. Gabriella's sister Kathy will become an instant mom (she has
been a constant aunt since she moved back to Toronto) and we know the children
will be in good hands. We will be calling home every single night,
so Kathy will have the latest news at any given time (at our home 416-444-8111).
She volunteered to work on a web page and post daily updates: http://members.home.net/katherine.sahapoglu/
(still work in progress and accepting help!). We also formed a telephone chain
for our close family & friends without email.
With love from our
family to yours,
Gabriella &
Chris
Kathy
Cell:
416-346-0678
Cell: 416-579-6335
bruyerefamily@rogers.com katherine.sahapoglu@rogers.com