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October 19, 2007
It
is with profound sadness that today
we announce the death of Brian Fleury,
Delbarton Athletic Director, teacher and
baseball coach.
A lifelong resident of Morris County, Brian
Fleury excelled in baseball and played for
Morristown High School. He was named
All-State his junior and senior years,
Gatorade All-American in 1986, and was
recently inducted into Morristown's Athletic
Hall of Fame in its inaugural year. Fleury
was drafted by the Houston Astros following
his senior year, but chose to pursue his
education instead.
Fleury accepted a baseball scholarship to
Georgia Tech and was named Freshman
All-American in the spring of 1987. Later
that year he was diagnosed with Hodgkin's
lymphoma and battled the disease ever since.
Fleury returned to Georgia Tech after a year
of treatment, played for a year and then
decided to accept a scholarship to the
University of Delaware, where he had two
successful seasons and was named the East
Coast Conference Most Valuable Player in
1990. In 2000, Fleury was one of eighty
players named by the Newark Star-Ledger
to the New Jersey All 20th-Century
Baseball Team.
He
was finishing his graduate
assistant/coaching position at Delaware for
his Masters Degree in 1992 when his cancer
reappeared. He received his first bone
marrow transplant in January 1994 and, that
summer, married Jennifer Root and settled in
Morris Plains, New Jersey where they lived
with their five year old son, Timothy. Since
then, Fleury underwent many protocols of
chemotherapy and received a second bone
marrow transplant in 2005 at the Dana Farber
Cancer Center in Boston, Massachusetts.
Coach
Fleury was Director of Athletics, Head
Varsity Baseball coach and a teacher of
English at Delbarton. In his ten years as
Delbarton's Head Baseball coach, his teams
compiled a record of 223-63, and won 9
Northern Hills Conference championships plus
an NJSIAA State Championship in 2002. He
continued to inspire students, his fellow
teachers and the entire Delbarton community
with his relentless determination to succeed
in his battle with cancer.
In
his tribute to Fleury, as he presented him
with the 2006 Delbarton Board of Trustees
Award, Board Chairman Daniel T. Scott '62
remarked: "This year's honoree has taught us
all a life lesson, indeed how to live life
with meaning every day, and how to value
life. Hemingway defined courage has "grace
under pressure" and this man personifies
grace."
Almost precisely one year ago Brian was
inducted into the Delbarton hall of Honor.
In accepting the award, Brian talked about
his life at Delbarton in this way:
"It's hard to put into words exactly why
that is, exactly what it is that makes
Delbarton School such a special place.
Sure, we have great kids, a beautiful
campus, the Abbey, the teachers and coaches,
the alumni. And when taken together, all
those things have something to do with it.
But for me, really, it's simpler than
that-it's more personal than that. The
reason, for me, is in the faces of the guys
I coach with, in the faces of the people I
work with, and especially in the faces of
the boys I coach and teach. Because it's in
their faces where I see proof that God
exists, and it's good for me to see that
every day. It's good for all of us to see
that every day. And that is why, for as
long as I can, I will get up in the morning,
and I'll find my way to Delbarton School."
Today
we bid farewell to a man who represented the
very best qualities that humanity has to
offer: intelligence, ability, sensitivity
and persistence. Let the life of Brian
Fleury serve as inspiration to those he
leaves behind. We extend our deepest
sympathy to his wife, Jen, son Timmy,
parents Shirley and Ed, his extended family
and friends.
Brian
always appreciated the time he had. He
shared his talents and gifts with every
single person with whom he came into
contact. And he never, ever gave up.
The students, faculty and alumni of
Delbarton School will never forget him.
Rest in peace, Brian Fleury.
October 1, 2007
Brian left the ICU
on Sept. 26th and is now in a private,
anti-infection room. He is doing better
everyday, and we are all so proud of him,
plus we are grateful for your prayers, love
and support. It seems he developed two
serious conditions, one a reversible
condition that has to do with
medication levels and the other related to
the GVHD in his liver. The combination of
the two is what caused him to suffer
seizures on the 11th and put him in the
ICU. He receives blood feresis treatments
daily and is doing so well. As he continues
to improve, we hope to move him to RIM,
where he can continue treatments and work
hard to get back on his feet. It's been a
difficult time, obviously, but we believe
his strength is great. Please continue to
pray for him
September 13, 2007
Tuesday,
Sept 11 Brian was taken back to the hospital
due to complications from his recovery from
the graft vs host disease he experienced 3
weeks ago. He is in ICU and his condition is
considered serious. I want you all to know I
can see the fight in him each minute he is
there and know he is trying his hardest to
get better along with the help of his team
of doctors and nurses. I tell him constantly
about your messages and the kindness and
support you have all shown us and our
families. Once again, we are held to visitor
restrictions of immediate family only.
Please continue to pray for his recovery and
know your prayers and support help us to
stay strong.
September 6, 2007
I'm
HOME! I'd be dishonest if I didn't
admit to intermittent doubts about that
actually happening. Plus, I did feel
vulnerable returning home, going from
around-the-clock-care to my recliner!
But with the love I feel from my family and
all of you, things are already feeling more
like normal. Day-to-day, there will be
rises and drops in my blood work, so I have
stay even minded and patient as we move
forward. Was so glad to make it home
the night before Timmy's first day of 1st
Grade!! What a big, handsome boy his
mom sent off that day with a part in his
hair that would have made Elio at the
Lackwana Barbershop proud... The key
remains getting the GVHD under control so I
stay out of serious danger, and the
combination of immuno-suppressants,
steroids, and especially the Photo Pharesis
treatments seem to be doing the trick with
the expertise of my doctors in Morristown
and in Boston. I owe them so much. I
still need help to stand and can't
really make it up steps without help, but I
am walking around the house much more surely
and confidently with everyday that goes by.
Jen has been carrying the load, managing all
of my treatments, pills, injections on a
daily basis, which is yeoman's work to say
the least. I'll be working from home
now via phone and email with Heidi and the
great gang of folks at school, which makes
me feel like I'm getting back in the mix a
little. Best of luck to all the fall teams
who start their seasons, but especially to
the seniors. Have a wonderful year
guys! Also, best of luck to those
Villa Walsh girls--make Mrs. Fleury proud
like I know you will. She misses
you guys so much. Thanks again for all
of your continued prayers and support.
May God bless you all.
August 30, 2007
hello everyone. thanks for your love,
prayers, and support during a very trying
time for us. that support astonishes us at
times, and we feel so blessed for it. over
the past 10 days or so, I've
gone from "fatal failure" to "critical" and
now to "stable." holy cow!!! i'm
continuing the blood photoferesis, which
seems to be working, although it is a long
process. all of my docs agree that
controlling the gvhd in my body is the key
now and of highest priority. the good
news is that we are moving slowly but
steadily towards that goal and things are
significantly better and better.
I've been getting
some good physical therapy work in and feel
a little stronger everyday.
I'll continue to
try my best and i hope to be back at
delbarton soon. i miss you all very much.
finally, please include in your prayers my
friend and fellow patient, erika, who passed
from her battles with lymphoma and gvhd a
few days ago.
August 27, 2007
Brian has had a week
of many blood tests, consults with
specialists and various procedures to
stabilize his condition. As stated
previously, the gvh in his liver remains the
highest priority and most difficult obstacle
to overcome. The team of doctors from NJ to
Boston have been working together around the
clock in order to give Brian the best care
possible and they have been successful in
stabilizing his condition at this time.
Brian has developed a few additional
problems during this time such as medication
induced diabetes, and dangerous low sodium
condition. Brian has begun a process called
photoblood faresis which is a long term
blood treatment to try to control the gvh in
the t-cells and therefore in the liver.
Brian is scheduled to have the
procedure approximately 3 times a week and
he is there for about 3-4 hours per
treatment. The procedure may take weeks or
months to show any improvement to in the gvh
in his liver. During that time the doctors
will continue to closely monitor his
medications and make any changes as
necessary. Today Brian was seen by the
physical rehabilitation specialist and he
was able to walk down the hall for the first
time as long as he was wearing a mask and
gloves for his protection. Thank you again
for your prayers and messages for our family
at this difficult time.
August 24, 2007
Statement from Brian
and Jenn Fleury...
Firstly, we thank all of you for your
prayers, love and support.
While most
indicators point to Brian trying to turn the
corner (and he is), his doctors continue to
refer to him as still at this time their
most critical patient.
Believe us,
there is nothing he would want more than to
see all of you, but at this point his
doctors restrict that.
Brian looks
forward again to your time together and will
continue to fight to get back on his feet.
God Bless.
August 21,2007
Brian was taken to the
hospital on Sunday, August 19, 2007.
The GVH in his
liver has escalated and they are trying to
stabilize his condition.
His condition
is considered serious,
however, he
has shown some improvement in the last
twenty-four hours.
Due to the
severity of his condition he is unable to
receive visitors.
Please keep him
in your prayers and we will post an update
over the next couple of days.
Thank you for
all of your messages of love and concern.
We continue to
feel your support.
July 25,2007
We're already half-way through the summer,
and I'm in the office everyday working with
the sports camp and preparing things in
athletics for the upcoming school year. The
baseball team finished up with a 22-4 record
and a conference championship, mostly due to
a terrific group of seniors whom I'll miss
dearly. Jen, Timmy, and I have had a great
time this summer playing catch, working
around the house, swimming, etc. We're
planning some time away, just the three of
us, to get some needed rest, as both Jen and
I need to re-charge for the hectic schedule
of a high school athletic director. We
recently celebrated our 13th wedding
anniversary, a real feather in Jen's cap
seeing all the trouble I've given her these
13 years! My health has been a bit of a
roller-coaster since late May. First, I had
a "hole" in the back of my eye from the
prednisone I've been on, which inhibited my
vision significantly. It's been corrected
now with laser surgery, but the fluid is not
quite drained yet. Then, the graft v. host
disease in my mouth--which is still an
issue--had creeped into my liver. It
subsided temporarily, but has been causing
significant problems as of late, the most
difficult of which have been fatigue and
jaundice. According to Dr. Papish, I don't
have hepititis, but my liver function is
very similar to a person who does. We're
trying to get it under control with
medication, and Drs. Ho and Papish have been
very conscientious to that end. Finally,
(this is getting boring!), I'm diabetic
again, and am trying to manage my blood
sugar. Taken separately, all these are
managable, but together they've been a
drag. I'm struggling to keep weight on, and
I'm fighting fatigue, but I'm confident that
I'll get "right" soon with the help of my
doctors and the continued love and support
from Jen, Timmy, my friends and family. We
knew two years ago that another transplant
would be a struggle, but decided at that
time to "go for the green, and not lay up."
So it's no time to look back now with
regret--we just have to keep with it and
keep believing that things are going to work
out soon. Just to brag for a minute about
our little slugger, Tim was selected as the
MVP of his team at Mott-Leeney Baseball Camp
in July. He is so proud of himself as are
Jen and I. Takes after his mom…! Enjoy the
rest of the summer and God bless.
June 8,2007
Sorry for being out of
touch, but it's baseball season, and things
have been crazy.
Our team had a
great year, finishing 22-4 with another
conference championship.
I had a terrific
group of kids, but especially a terrific
bunch of seniors whom I'll miss dearly.
Timmy's a little
bummed we lost in the finals of the county
tournament, but he's starting to get over
it.
He got a taste
of that himself as his team lost the final
game of the Wiffle Ball League that Jen ran
again this spring in the backyard.
Clay mound, clay
plate area, painted baselines, and I even
put up a mesh fence this year to top it off.
Jen runs the
whole show for about 20 kids, and she's
dynamite.
On the last day,
I cooked 56 hot dogs for the gang--great
day.
On the health
front, I only had to miss one practice this
spring because the vomiting got too crazy,
but all in all, I'm having a decent stretch,
and being on the field everyday is always a
big plus for me.
Just as we were
getting to the decision to have another
infusion of marrow, the decision took care
of itself as the Graft v Host disease has
spread to my liver.
Not great news,
and some side effects that are tough to deal
with, but my docs believe I have plenty of
GVHD with the mouth and now the liver.
So another
infusion of marrow is out of the question.
Unfortunately, I
had to begin another regimen of
chemotherapy, a drug called Gemzar which
I've had before.
I've asked to
extend the time between treatments outside
of the normal protocol to see if I can get
myself into a holding pattern with as little
chemotherapy as possible.
So far, so good
on that idea.
Hope all of you
are doing well and enjoying basebal season.
God bless.
March 20, 2007
I’ve been back and forth to Boston every 3
weeks since the MDX-010 drug trial began,
mostly for PET / CT scans, blood work, and
meetings with Dr. Ho and the trial folks.
They are watching me closely for any strange
effects of the antibody itself, but also for
any change in the nodes of disease I still
have. Except for a hiccup in January and
February with my white blood count and a
flare up of the graft v. host in my mouth,
all has been well. For some reason, maybe
from the antibody itself or from a chest
infection I had, my mouth went south again,
and I spiked fevers of over 104. My white
count literally bottomed-out on me for
reasons that can’t be explained, but after
some rest, and an injection of Neulasta, I
was as good as new soon, and ready to take
the baseball team to Florida. We had a
great week down there, perfect weather, and
a lot of baseball. I couldn’t have asked
for a better respite from the hospital /
Boston schedule, although I did miss Jen,
Tim, and the dogs. Next year, I promised to
take Timmy with me, as he reminds me
regularly that he is a big part of the team
as our batboy—and he’s right! We didn’t get
great news from the March 19th
scans, as the small nodes in my neck,
abdomen, and under my right arm have
progressed slightly, and there is a new,
very small spot on my spleen. No emergency
by any stretch, but my doctors think it
might be time to try a second donor
lymphocyte infusion (DLI). If you remember,
I had my first one last spring. The
thinking is that, coupled with the antibody,
it will boost my immune system and fight the
lymphoma. The only hitch is that I have to
get off the prednisone I’m taking for the
graft v. host in my mouth without it flaring
up before they give me the second DLI. If
they administered a DLI during a flare-up,
it could get difficult to deal with. So
Drs. Ho, Fisher, and Papish are talking
about a few cycles of chemotherapy—probably
Gemzar or Doxil—to keep the disease in check
or even diminish it while I get off the
prednisone and prepare for the DLI
procedure. It’s always good to remind
myself that this is a long process, and that
I’m willing and ready to do what I have to
do to stay in the game. Jen, Timmy, and I
sincerely believe that we are on the right
course, and that someday soon, the three of
us will be celebrating the start of a long
remission. We just have to keep on rowing
the boat. Besides, is there a better time
of year than baseball season or a better
place to coach it than on the diamond at
Delbarton, or better people to spend it with
than Bruce Shatel and the kids on my team? I
can’t imagine there is. Hope to see you at
the ballpark.
January
24, 2007
It’s been a crazy month. We returned from
Boston after the MDX-010 antibody infusion
once the doctors were sure I was safe from
any sudden or allergic reaction. It was a
few long days for me, but Jen and Tim kept
me going as usual. We kicked a lot of field
goals in the hotel room with one of his new
toys from Santa, and ran more than our fair
share of races in the hotel hallways. I lost
every one! I developed a chest infection
around the same time, which seems to have
caused a flare up of the graft v. host in my
mouth. My doctors are working with me to
straighten it out, but for now I’m back on
Ensure, soup, and prednisone. I make trips
weekly to Boston for tests since they need
to keep a close eye on me during the drug
trial due to the possibility of difficult
side effects. My latest trip included a PET
scan, which showed that things are status
quo. Dr. Ho explained that they weren’t
looking for or expecting a miraculous change
in a positive direction yet, since it’s much
too early to say whether the MDX-010 is
working. It was more that they were ruling
out any progression of disease. So I’m
holding my own, enjoying the winter sports
at Delbarton. On a side note, Charlie Weis,
an old coach and friend of mine, stopped in
to Delbarton to catch up. It was great to
see him, and I appreciate him taking the
time out of an incredibly busy schedule. The
Delbarton students had a blast during the
visit—it was an exciting morning at school
to say the least. (See the picture I
posted.) Things at home are great, as Champ
and Timmy are fast friends. And Jen
continues to do a great job as the AD at
Villa. Stay warm everyone.
December 20, 2006
Merry Christmas! My
latest scans in November were much like
those in September. Some of the disease was
diminished by the cycles of Vinblastine I
did in October and November, and some
disease found its way to new parts of my
body—the most significant spot being in a
rib on my back, left side. The only reason
that’s more significant than any other
remaining disease is because it gives me
some minor pain. The most recent “big news”
is that I’ve been admitted to the UC Santa
Barbara drug trial for MDX-010, a new
anti-body for failed transplant patients
like me. In my layman’s understanding,
MDX-010 blocks a protein that our bodies
make naturally, which restricts our fighting
T-cells from fighting too aggressively
within our own bodies. The thinking is that,
with the T-cells unblocked, they will be
free to battle aggressively against the
cancer. Good thinking. But with unblocked
T-cells the risks are obvious: graft v. host
disease and auto-immune disease, both of
which could be unpleasant for me. But the
rewards outweigh the risks, and we’re ready
to move forward, always hoping and praying
that this will get me into remission. Jen,
Timmy and I will be leaving for Boston again
on Christmas night, and I’ll be admitted
into the hospital on the morning of the
26th. Don’t
worry—we’ll bring plenty of Tim’s gifts with
us for him and Jen to play with in their
hotel room that week! My best wishes to all
of you for a healthy, Merry Christmas.
November
16, 2006
Things are moving along pretty well. I just
received word from Boston that the antibody
drug trial is now opened again. We will head
back up there right after Thanksgiving for
staging tests, which will determine if I’m
eligible for the trial. I don’t know many of
the details about the trial yet, except that
I’ll have to do it in Boston, and I might
have to follow it up with a second Donor
Lymphocyte Infusion (DLI). The three cycles
of chemo ended last week, and outside of
some nausea and minor bone pain, I thought I
tolerated the Vinblastine very well. I’m
feeling good this week, and looking forward
to a big Delbarton football win and some
tasty snacks over the holiday. The big news
around the Fleury house? We have a new
puppy, a black Labrador that Timmy named,
“Champ.” He’s the cutest thing. (Check out
the new pictures of him.) Have a great
Thanksgiving holiday. I know we will—the
Fleurys have a lot to give thanks for. Be
well.
October 20, 2006
Hey
everyone. Sorry to have been out of touch,
but I’ve been busy working, and I love being
busy. Both good news and bad news from my
latest trip to Boston. It seems that the
disease I had in various places that showed
up on my July scans is about 80% diminished
from the 2 months of Doxil. Good news! But
I have developed some new, small, areas of
disease under both arms and in my abdomen.
Not the stomach itself, just some lymph
nodes in my abdomen. Bad news. So Dr. Ho,
Jen, and I sat down together with Dr.
Fisher, another oncologist at Dana Farber,
and came up with the following plan.
Because I continue to have significant
problems with my mouth and the skin on my
right foot, they don’t want me to use Doxil
for the time being since it can (and has)
contributed to those two problems. So I
will do 3 cycles of a chemo drug called
Vinblastine, which was a part of the very
first chemo protocol I had in 1987. By
reintroducing it after 20 years, Dr. Fisher
believes I’ll get the response we’re hoping
for without the continued damage to my mouth
and skin. If that goes well, I’ll have some
staging tests done (again!) and then be
eligible for the new anti-body trial I
mentioned in the last posting. It’s my
simple understanding that the anti-body
“unblocks” the tolerance of my donor’s
t-cells, which are key in the fight against
disease. Why they aren’t “unblocked”
already?, I don’t’ know, but this is how the
new drug was explained to me and Jen. I
would only get a single infusion of that
anti-body and then possibly follow with
another donor lymphocyte infusion (DLI) like
I had back in April. The DLI may not be
necessary, which would be great, since there
is always that risk of the GVHD progressing
from there. So I feel like we left Boston
with a plan, albeit a hard plan. But as
long as we have a plan, we have hope, so
we’re going with it, hoping and praying for
the best. I’ll keep you posted. My best to
all of you and your families this fall.
Please keep my donor in your
prayers—especially his t-cells!
August 24,
2006
So
I’m halfway through my newest protocol,
still focusing only on this small piece
of the plan. I’d rather not get ahead
of myself and worry about what will be
next for me and my treatments. Dr.
Papish, my local oncologist for years at
the Carol Simon Center in Morristown,
had an idea that he discussed with Dr.
Ho about adding an anti-body called
Rituxan to my infusion schedule. It’s
not really designed for people with my
disease, but he had read studies that
showed it could help with the Graft v.
Host disease. So, I agreed to do four
weeks of it. I’ll have my third of
those infusions plus the second cycle of
Doxil next Tuesday, which will be
another long day in the hospital. I’m
just about weaned off the prednisone,
and am looking forward to staying away
from that drug for a long time. (Would
love to be able to get some sleep!)
Hopefully, once I’m completely off for a
while, the diabetes will regulate itself
back to normal on its own, and I won’t
need any treatment for that. As
expected, my mouth took an abrupt turn
for the worse once I began backing off
the prednisone, but then it turned back
in a positive direction. I don’t know
if it is the Rituxan or not, but it may
be a good sign that the GVHD is
beginning to subside. I really hope
that’s the case so I can put the ol’
feed bag on like I used to! I’m back to
work full-time everyday now and really
am enjoying the time in the office, the
great people I missed so much at the
school, and, of course, the start of the
fall season. As usual, everyone has
gone to great lengths to make me feel a
warm ‘welcome home’, which I so
appreciate. Other big news? I have a
new colleague in the Athletic Director
field. Jen has accepted the job as the
new AD at the Villa Walsh Academy. For
those of you who are not familiar with
Villa, it’s an all-girls Catholic school
just on the other side of the hill from
Delbarton, and competes in the Northern
Hills Conference with us. So, needless
to say, we’ll be working closely this
year, and will have a great time being
busy together. Timmy’s pumped that they
are ‘green’ too! I’m so proud of her,
and believe she’ll benefit from the
great place that Villa is, and they’ll
benefit from the great job she’ll do for
the girls. Timmy starts kindergarten
after Labor Day and is bursting with
excitement about it. He’s especially
curious about what uniform colors the
sports teams are, unaware of course,
that there are no such teams. I head
back to Boston for another re-staging at
the end of September. Until then, I’m
just going to enjoy the next few weeks
as I finish up the chemo and the
anti-body. I’ve found that my stamina
is not quite what I’m used to at work,
but I’m sure that will come back in
time. On a sad note, we had to put our
old, yellow lab, Chet, to sleep last
week. For anyone who loves a dog, you
know how heartbreaking that is. Looking
forward to seeing many of you at the
games this fall. Be present, and
continue to pray for my donor.
July 31, 2006
If
this gets confusing, it’s only because I’m
trying to get my head around this myself as I’m
writing. Bruce and I returned from Boston last
night after a long two days of re-staging and
TRAFFIC. I’m not going to go out of my way to
spin this or rationalize myself into knots, so
here is my best effort at explaining where we
are right now. My counts are good, which is
always a good indicator that my body is doing
what it needs to do. But the uptake on the PET
/ CT scan I had in April hasn’t gone away yet.
In fact, it has become a bit more “intense” on
the scans, which technically qualifies as a
progression, and not a more palatable
“stability” of disease. The spots of disease
are the same size, except for a new, small spot
on my spleen. But there is some gray area
here. The high-dose prednisone I’ve been on for
the GVHD had caused a spike in my blood sugars,
so I’ve become slightly diabetic. That alone
could be what is showing in the spleen, but time
will tell with that. Either way, Dr. Ho thinks
it best to do two quick cycles of chemotherapy (Doxil)
as a way of giving my GVHD and my new marrow
more time to do its thing while simultaneously
(hopefully) diminishing those uptake spots in
their progression. At the same time, he’s going
to begin weaning me off of the prednisone to
reduce my glucose levels and also to see if my
mouth (which is much improved) can hang in there
on its own. Time will tell with that, too. So
what does all this mean? I really wish I knew
for sure, but here’s how I see it. The
transplant has not failed, and it’s wrong to
think that way. I believe that my new marrow
will eventually do what it has to do to fight
the disease, but it just may need to mature, and
the chemo will give it the time to do that. Am
I disappointed? Of course, I’m disappointed,
but not so much so that I’m not ready to hunker
down over the next 8 weeks and plow through the
Doxil, looking forward to some good news from my
late-September scans. I know I have that in
me. We’ve been here before, and we’ll likely be
here at some point again—life isn’t always
beautiful, as you know. But I have so much
support and love from my family and from so many
people from all the various aspects of my life
that I helps me believe that I can get through
anything—that I can just keep getting myself up
from that treatment table if that’s what I have
to do. And if that’s what I have to do, then,
very simply, that’s what I will do. Dr. Ho and
I did talk some “what if” scenarios, which are
promising. There is a new antibody-like drug in
trial for people like me called MDX-010, which
inhibits some “tolerance protein” and positions
my blood cells for a better fight. (I think
that’s how he explained it!). But I’ll worry
about that after the September scans. Right
now, I’m excited to be returning to the Athletic
office at Delbarton, and can’t wait for the
school year to begin. I’ve put some pics of a
recent trip to the Philadelphia Zoo which looked
like a lot of fun. And also one of Jen’s garden
she’s worked so hard on. Keep praying for me
and for my donor. I look forward to seeing many
of you soon.
July 14, 2006
The trip to the Dana Farber in Boston last week was
pretty good. I left there feeling better about
things than I expected to--had an unusual sense of
foreboding for some reason heading up there. But my
blood counts were very positive, and my vitals were
terrific. Resting pulse 70, and blood pressure
120/70. So in that sense, Dr. Ho was pleased with
the shape I'm in. The good news, as can sometimes be
the case with these things, is a bit of a paradox. I
definitely have Graft v. Host disease working in the
skin of my right foot and in both palms of my hands.
A little ugly, but having pretty feet and cuticles
has no bearing on how I make my living, so I'm good
with that. But I do have a pretty serious case of it
still in my mouth, which has been a significant
struggle for me when it comes to talking and eating.
So first, the idea of doing another donor marrow
infusion is completely off the table, as another one
could be very dangerous for me. It's my
understanding that the key is to get some graft v.
host working, which is a good sign that my new
marrow will engage foreign cells, without getting
too much of it, which could be a difficult time. So
it's a really good sign that I have graft v. host
disease at all. But to be honest, Doc Ho is worried
that I might be developing a chronic case of it with
the mouth since I've had it since late-March. I've
lost 21 pounds since April 21 and 41 since the
actual day of the transplant last August. He decided
to put me on high-dose prednisone (I hate that drug)
to see if we can control it better with that. So
far, I do see some improvement, so that's a sign
that maybe there is some light at the end of the
tunnel. And if I had my wish, there will be a
pepperoni pizza at the end of that tunnel, too! I
head back to Boston in two weeks for a review of my
mouth and the all-important re-staging scans and
tests to see where I am with any disease. Please
keep praying for my doctors and my donor, and for
Jen and Timmy, of whom I couldn't be more proud at
how brave they were this year.
June 21, 2006
Sorry to have been out
of touch, and I hope everyone is enjoying the start
of summer. The Delbarton season ended, and I was
proud the team made a run at the end to win the
Northern Hills Conference championship. It’s always
a bittersweet thing, the end of a season. I really
fall in love with the seniors and regret how much
I’ll miss them. And then our summer legion schedule
begins, and I already start thinking about how we’re
going to shape up for next year. Coaching is a
great way to make a life! I head back to Boston
for important tests with Dr. Ho in about 2 weeks.
At that time, he’ll make a decision about a second
Donor Lymphocyte Infusion. My understanding is that
he’ll determine if the Graft v. Host disease that
has developed in my mouth—and now in my right foot
and the palms of my hands—is enough to feel like my
marrow is engaged and fighting foreign cells. Part
of me wants the second infusion, thinking that we
should really ring out the sponge if we can. But he
warns me that too much Graft v. Host could be very
dangerous, or at the very least, extremely difficult
to endure. Judging from the state of my mouth, I do
believe and appreciate his caution. My mouth is a
mess, and eating and talking remain a challenge.
The good news is that I am cleared to begin working
in the office for 4 hours per day beginning in July,
just making sure that I limit my exposure to
crowds. I can’t wait! As usual, Delbarton has gone
above and beyond and is re-fitting my office to be
clean and safe for me. Last but not least, please
keep Jen in your prayers. She had to have an
emergency appendectomy this past weekend. She’s had
some year! But as usual, her spirits are great, and
she’s recovering well. Timmy wanted me to say ‘Hi!’
to everyone, too. Boy, do I love that little guy.
There are a few new pics from the spring
May 26, 2006
Things are kind of status quo right now, waiting, hoping, praying that the DLI is doing its thing. My blood counts have been good, and I’m enjoying my time with my team at Delbarton, and with my team at home. Jen started a backyard Wiffle ball league for Timmy and his friends. There is a blue team and a red team, and from the play-by-play I get from Tim about his games, it sounds to me that everyone is having a blast. I believe the red team won last night 24-17 in 4 innings! My mouth isn’t really much better yet, which leads Dr. Ho to believe that it is, in fact, Graft v. Host disease. It’s not very pleasant, but I’m learning how to deal with it better and better, and having a little GVH right now is a good thing. Sometimes I do have the urge to eat something substantial, so I numb my mouth with gelled Lidocaine and have a hamburger. I can’t really taste it much when I do that, but it feels good going down. An added variable lately has been some trouble with my right hand. After doing some tests, Dr. Mulford believes that all the surgery, radiation, and chemotherapy over the years has done some nerve damage to my right hand. The numbness isn’t so bad, but the flare-ups are pretty painful. I think there are some things we can do to improve it down the road, but for now we’re just trying to calm the nerve down. Have a great Memorial Day weekend. Enjoy the parades!
May
1, 2006
Hey everyone.
What great weather we’re having. I had one of those
moments yesterday in batting practice prior to our
tournament game when things felt good, things made
sense, and I wouldn’t have wished to have been
anywhere else in the world than on our baseball
field at Delbarton School. The kids were chatting
and hitting, Coach Sigrist was throwing BP, and
Bruce and I were sitting in our customary spot next
to the batting shell. Over the PA, Travis Tritt was
singing, “It’s a Great Day to be Alive.” Ranks up
there as one of my favorite mornings of the year, a
touching reminder of how lucky I am to do what I
do. Yesterday, I drove down to Princeton with the
elder Coach Shatel to see one of my former players,
Dan DeGeorge, play SS against Cornell. Beautiful
day, too, and I was so proud to see how Danny
handled himself out there. I had the DLI in Boston
last Friday, which went well, and I returned to
recover at home for the weekend. Doc Ho says it’s
time to wait and see, as we monitor my blood counts
for the next 7 weeks. At that time, we’ll run more
tests and make a decision about a second donor
infusion. The only setback has been my mouth. He
believes that I’ve started some GVHD in my mouth.
And while it is pretty unpleasant, especially when I
try to eat, it isn’t necessarily a bad thing to have
a little GHVD working. So it’s a lot of Ensure
shakes and yogurt for me! I’ll do the bulk of my
blood work in Morristown and then head to Boston
again in another week, so Doc Ho can keep track of
the GVHD. I have to use several rinses and
cleansers to manage it since it could get out of
control, which would spell trouble. Please enjoy
these great spring days, and I’ll catch up soon.
Timmy, Jen, and I have a date in the yard to hit
some wiffle balls! I’ll have some more pics next
week.
April 16, 2006
Jen and I wish
all of you a Happy Easter. I returned from Boston
just in time for our game vs. Madison. It was a
hectic trip, rushing up there for tests, scans, and
consent forms, and then rushing back for baseball.
But I wouldn’t want to have missed a game for the
world, and God bless Jen for understanding that
about me and being willing to drive me directly from
Boston to Madison High School! (She “gets” me.) My
PET scan was good, showing only residual uptake in a
few small nodes in my chest, which according to Dr.
Ho, are probably on their way out. So the Donor
Lymphocyte Infusion (DLI) is scheduled for next
week, which is a promising step in the right
direction. Dr. Ho explained that he will give me a
slightly reduced dosage of my donor’s cells, so as
not to risk the onslaught of an acute case of Graft
v. Host Disease (GVHD). As I explained in earlier
posts, he does want to see some very slight signs of
GVHD, which would be an indication that my new
marrow is interested in engaging foreign cells like
cancer cells. Since he can’t take back the cells
once he gives them to me, he’d rather give me a
lower dose of them now, and then another DLI in 2
months if I still don’t show those minimal signs of
GVHD. The shift in thinking for me is the one from
chemotherapy to immunotherapy. He’s confident the
first DLI will take care of the residual uptake in
my chest, and hopefully will continue to empower my
immune system itself to fight future cancer cells
rather than having to rely on the toxins of
chemotherapy to do that fighting. Like I told a
friend of mine who is suffering right now, it takes
a thick skin to continue such a fight. But we all
have more layers of skin than we think we do, and,
if we just believe in ourselves, we can handle so
much more than we think we’re capable of. Happy
Easter, and please keep my donor in your prayers.
March 29, 2006
Well, the past two weeks have been
action-packed, with state ice hockey, Tim’s return to
pre-school, and the start of baseball season.
Congratulations to the Delbarton ice hockey team and to
“Uncle Bruce” on their recent state championship. The
exciting games really gave Tim a thrill, and he’s talked
about little else, colored little else, and re-enacted
little else since the big game. Also, thanks to the
kids and teachers at Joyful Noise, Tim’s pre-school, for
making his return so warm and exciting for him. Jen’s
been able to sneak out for some therapeutic time in her
garden while Tim’s at school, and I’ve been back on the
baseball field in the afternoons coaching the game and
the kids I love. The biggest downer recently is the
trouble I’m having controlling the mouth sores I get
from Doxil. Right now, my mouth is as bad as it’s ever
been, and I haven’t been able to eat much solid food for
over a week. We’re still managing my restrictions well,
and I want to thank everyone for “playing by the rules”
when it comes to contact with me. It’s hard not to
shake hands or give a hug, but it’s part of the deal for
now. Dr. Ho has been great in his support of me, but
also reminded me in a talk we had last week not to lose
focus. While I have been healing and recovering from
the bone marrow transplant very well, it’s really not
yet time to celebrate since our most important
work—getting me back into remission—is still not done.
It was a timely talk, and one that did re-center me to
prepare for what’s become the all-important DLI that I
will have sometime in late April. There are a few new
pictures to see: Timmy and Emma at Continental Arena;
Timmy and Emma with his favorite player Matt Schillings;
and Timmy working as our bat boy. Please be well, and
continue to keep my donor in your prayers.
March 14, 2006
We’re back from
Boston this week, and don’t have to return until
mid-April. Doc Ho postponed my Donor Lymphocyte
Infusion to have me do one more round of chemo.
Luckily, that delay also gives him time to fight
with my insurance company since they won’t approve
the DLI even after a second appeal—something about
it being an experimental measure for Hodgkin’s
Lymphoma. It’s my understanding that the success of
the DLI depends a great deal on timing, and if I can
get it at a time that my blood counts are good and I
have little or no cancer in my body, then the
percentages increase for me to get into remission.
While I feel good (great!) about my body’s recovery,
I am a bit restless about the remission. After 4
consecutive years of chemo and a second transplant
this year, I would enjoy some disease-free time, to
say the least. Last week, I had two of the best
days I’ve had all year. On Monday, I went to watch
the start of baseball practice. I thought I knew
how much I missed them, until I went that day. It
was great seeing them. And on Tuesday, I sat high
up, alone in the seats at Mennen Arena and watched
Timmy skate. He’s been practicing a lot, and seeing
him skate for the first time made me glad I was
sitting alone up there so as not to embarrass
myself. What a thrill. I can join the baseball
team once they return from Florida, so coaching is a
“go” for this spring. Honestly, I don’t know how I
would have handled not being able to coach this
year. It’s what I do, and so much of who I am. I
do have to continue to be very careful with
exposure, so I’ll be laying low at the field. No
locker room, no crowds, no handshaking, kissing, or
piggy-back rides for me! Just give me a wave if you
happen to see me out there—I promise to wave back.
March 1, 2006
I’m heading to
Boston this Friday for a few quick tests and a
meeting with Dr. Ho, and then back again next week
for the DLI…finally. With spring in the air, we’re
anxious to have some of my restrictions lifted after
my visit, and look forward to what we hope to be the
beginning of a long, healthy stretch. But enough
about me. I wanted to write a little about Mrs.
Anne Donnelly, who passed away recently from
cancer. Mrs. Donnelly was the long-time Athletic
Department secretary at Morristown High School, and
a special person to any athlete or coach who knew
and worked with her. Over the past 20 years, I’ve
had the great pleasure to know Mrs. Donnelly from
the days when I’d hang out in her office during
study hall, begging her to write me a pass so I
could be late to class. And even in recent years as
an AD, I looked forward to hearing her voice when I
called the high school to confirm or schedule a
game. She was a warm and caring person, but
especially so if you were a Colonial and wore the
maroon and white. She really cared about the kids
who played and the coaches who coached, and
Morristown HS won’t quite be the same without her.
I learned from a bunch of recent letters and emails
that she made it known in her last days that,
instead of flowers, she wanted people to make a
donation to my trust fund. If you didn’t know her,
that gesture alone should give you a sense of who
she was. I was so touched that she would think of
me at a time at such a difficult time, and I thank
all of you who wrote to me on her behalf. Finally,
congrats to Coach Whalen and the basketball team on
their county championship, and good luck to the
hockey team, the wrestlers, and the runners who are
competing in the upcoming state tournaments. (I put
some new pictures up of Jen at the Martha Show,
still a hot topic in this house if you can believe
it.)
February 21, 2006
Our latest family
highlight was seeing Jen and some of her friends in
the television audience of a recent Martha Stewart
Show, one of my wife’s favorite things. She had a
great day, and her smile made us all happy, even
though Tim and I have had to hear about it since
then in every last detail! I began my second cycle
of chemo last week, and, as expected, I definitely
feel a reduction in the tumors in my neck. The
effects of the chemo are relatively mild, so with
the virus finally gone, I’ve felt better in the last
two weeks than I felt all of December and January.
I’m finally eating well again, which helps me to
feel stronger everyday. We head back to Boston
twice in the next two weeks, first for a few tests
and to sign consent forms, and then for the Donor
Lymphocyte Infusion. That procedure is expected to
go well as I’m quite literally just getting an
infusion of what are now my own lymphocytes. There
are some risks associated with the DLI, but I feel
really good about it going in. Also, I think it’s a
good sign that I’ve increasingly felt the itch to
get back to normal life. And while I understand
that I still have a ways to go yet regarding my
recovery, and that I’ll be under continuing
restrictions, I believe it’s a good sign that I’m
looking forward to being myself again, and doing the
things I love to do. Thanks for all of the ongoing
support and love, as your thoughts and prayers
really have made our family continue to feel
special. And thanks, too, for including my donor in
your prayers. He must be a special man to answer
the call once more for me.
February
3, 2006
Hey everyone. I
started the chemo last week, which was pretty
uneventful. It felt funny to be back in the TX chair at
Carol Simon in Morristown Memorial again. Don’t get me
wrong, I was almost glad to be there, glad to be getting
started, but because I’ve been in that chair for years
now, it also felt like I had gone a long way to go
nowhere. Believe it or not, I’m still struggling a
little with the remnants of that virus. Clinically,
there is really nothing that can be done, so I just have
to let it run its course. Things at home are great.
Timmy turns 5 this weekend, and Jen has planned a little
get together for him with kids and cupcakes at
Build-A-Bear. (Tim believes that if Jen didn’t throw
together a birthday party, then, in his words, he’ll
“stay 4 forever.”) We bought him a Fat Head for his
bedroom wall. He’s going to go nuts when he sees Tom
Brady hanging over him every night! I shake my head in
wonder sometimes at the joy he brings to me and Jen. I
also have to say what a thrill it’s been to receive a
bunch of posts and emails from my former teammates at
Georgia Tech. If you know me well, then you know how
much I believe in the magic of being on a team. And if
you’re lucky enough (like I’ve been) to be on a special
one, like that ’87 Georgia Tech team, then the
friendships you formed there will last you a lifetime.
Thanks to all you guys for checking in, it really meant
the world to me. Feel free to check out some new pics
of Jen and Tim at the beach visiting her cousin on Long
Island, and of us doing a bull pen workout in the
kitchen! Be well, and please remember to keep my donor
in your prayers.
January 20, 2006
We’re back from Boston, kind of a crazy drive with
all that rain and wind. My virus is finally getting better,
which is a relief, and I was in good enough shape on
Wednesday to have my scans in Boston. They showed what I
expected them to show and a little more. I have disease now
in my left neck, my right parotid, under both arms and also
some small nodes in my chest. Of course, we were alarmed at
first, that list seems a little overwhelming when you first
hear it. Jen, Dr. Ho, and I had a good talk and, after he
consulted with another doctor at Dana Farber, we’re going
with the following plan. First, he’s taken me off of the
anti-rejection medicines completely to “activate” my new
marrow. There is an increased risk of graft v. host
disease, but I was pretty far along in the weaning process,
so he was comfortable with it. Since my white count is
good, he’s going to give me two cycles of chemotherapy,
using a drug called Doxil, which I’ve had before and had a
lot of success with. We expect the chemo to reduce or
eliminate the disease after two cycles, at which time Dr. Ho
wants to give my new marrow a “boost” by infusing me with
another dose of my donor’s lymphocytes. The thinking is
this: if the chemo can clean me up, my new marrow—combined
with a boost of my donor’s lymphocytes—will have enough
punch to keep new cancer cells from forming. This in no way
means that the transplant hasn’t been a success, since I’m
still mid-stream. In fact, without the transplant, I
wouldn’t be in a position to get the donor lymphocyte
infusion, which is the key to this new course of action.
May sound like a lot of positive spin, but we believe we’ve
got a plan in place that can work. I ran the plan by Timmy,
who gave me a wink, and said, “Sounds like a good deal,
Dad.” How can you argue with that?
January
10, 2006
Well, no one said this would be
easy. It seems that sometime last week, I became infected
with a virus. It was bound to happen sooner or later, no
matter how many restrictions I am under. In any event,
because I’m pretty tired and achy, and because I have some
swollen glands, Dr. Ho has postponed my scans in
Morristown. Instead, he wants me to come to Boston next
week, hoping that my viral symptoms are gone, so I can have
the PET scans there. There is little doubt in his mind or
mine that the scans will show some small tumors at the base
of the left side of my neck, but he didn’t want to make a
decision on what to do about that based on a scan that might
show false positives in other parts of my body because of
the infection. We have talked on the phone a few times, and
I believe he is a smart man and has some good ideas that
we’ll discuss next week. So, for now, I’m just laying low
at home, waiting for things to get back on track next week,
which I’m hoping they will.
Hang in there
everyone. I’ll let you know what the news is from
Boston.
December 30, 2005
I hope you all had a Merry Christmas, and cheers to a healthy and happy 2006! This is a tough update for me to write, since my Boston trip didn’t go so well. My aspiration was what I expected, and I stayed sore for a few days. And the blood counts looked really good. But it looks as though some small nodes are present in my left neck again, and I’ll have scans early next week in Morristown which I’m sure will confirm that. Without going into too much detail, I haven’t technically been treated for any disease since the end of July when I completed my last cycle of chemotherapy prior to the transplant. The doxil I was taking then usually gives me a 4-5 month window of NED (No Evidence of Disease), and I’m about at that 4-5 month period now. Since the transplant is still in its grafting stage, my new marrow continues to be suppressed by the anti-rejection medicines and isn’t ‘active’ enough to exert itself against any disease. So all that said, here’s where we are: once the scans come back next week with confirmation, then Dr. Ho will begin a “rapid taper” to get me off the anti-rejection medicine, which will allow my new marrow to get to work, and (hopefully) get rid of those small nodes in my neck before they spread. The biggest risk involved is that a rapid taper does increase the chances of acquiring graft v. host disease. So it’s a tightrope walk, so say the least, but I have confidence in Dr. Ho to get me over what, so far, has been the biggest hurdle of this transplant. Jen and I both agree that we’ve been here before, and we can handle where this takes us. We’ll just have to stay focused and keep on believing in good things. I’m a little worried, and it took me a few days to clear my head, but after thinking about it, I realize that it’s not time to panic. It’s all going to be okay.
On a lighter note, we had a wonderful Christmas. All the credit for that goes to Tim, as Christmas with a 4 ½ year old boy is the best tonic for lifting your spirits. I was surprised, he actually slept until 2:44 AM on Christmas Eve!
December 5, 2005
Hello
everyone. Not much to update as things are kind of status quo
right now. I have begun the weaning off process for the
anti-rejection medicine. As I understand it, this stage could
go very smoothly or it could get ugly and / or dangerous, really
a wide range of side effects. Only time will tell. But Dr. Ho
has explained that, in his experience, it’s actually a good
thing if I get a small case of Graph vs. Host disease
since it’s an indicator to him that the marrow is willing to
fight. I definitely want a marrow that fights, so I’m hoping my
donor is a tough guy! We had a very nice, quiet Thanksgiving.
Jen and I had some turkey with all the trimmings, and Timmy had
his chicken nuggets. We did get him to try a little turkey
breast. He gave it a rating of 6 on a scale of 1-10. I am
heading back up to Boston in a few
weeks for more tests, including another bone marrow aspiration
in my pelvis. I can’t stand that test—hurts a lot. Timmy, Jen
and I are also making his Christmas list and getting ready to
send it off to Santa. He wants a Batman bike, but is concerned
that Santa will have to put a bike rack on the sleigh in order
to get it here, which might cause some labor issues with the
reindeer. Whatever, Tim… There are some new pictures,
including the Kristiansen’s Confirmation group who raked my
leaves for me. I’ll post some from the Morris Plains Car Wash
as soon as I get some good ones. Please have a great week and
remember to keep my donor in your prayers. Thanks.
November 21, 2005
The trip to
Boston was a good one, all my tests, including that critical liver test I was worried about, were good as well. Even though it wasn’t like all would’ve been a disaster if it went poorly or all is going to be peaches because it went well, it’s still nice when you get good news, I think. Dr. Ho and I had a long talk about where I am and where he believes I’m going. Being a cancer patient for 19 years now, I look to have those talks every now and then with my doctors to see if we’re reading off the same script. He was surprised that I take a walk everyday, and that I do a Tae-Bo workout at all at this point, but I assured him (like I assure Jen) that I’m not pushing too hard. He did stress to me that no restrictions are going to be lifted any time soon, and that I have to remain very careful and patient, but he also remarked that my strength and my devotion to getting better is nice to see. Long term, he explained that the longer I can remain disease free, the more likely I it is that I will remain disease free, which I saw as a positive statement. He’s not one to guess or speculate much, so even though I tried, I couldn’t get him to take give me his opinion if he thought I would remain disease free for a while. Couldn’t get Ho to crack—he’s a tough one!! Finally, I have started being weaned off the Pro-graff and Rapamune, and in doing so, have entered into the next stage of the transplant. I feel ready for the next stage, and I’m hoping for the best. Be well and have a wonderful Thanksgiving.
November 14, 2005
I'm heading up to Boston this week for some more tests and (hopefully) some good news about my recent test results. I feel like I'm ready to get on with the next stage of the transplant at this point. Below is the letter of thanks I asked my sister to read at the dinner the other night. I hope you get from it, whether you were there or not, my sincerest sense of gratitude....
Greetings to everyone who took the time out of their busy schedules to be here tonight. I hope you are all enjoying yourselves. I’ve been relatively secluded since mid-August, so you can imagine how much I wish I could be there with you.
Thinking of tonight, I feel woefully inadequate, incapable almost, in my ability to say thank you. I harbor so many fears about my illness and where this long journey will eventually lead me. And honestly, most of those fears have less to do with me and more to do with my wife and son, Jen and Timmy, my two sisters, Jill and Carrie, and my parents, Ed and Shirley. I worry so much and so often about how my illness has affected them, and about the great unfairness in what they’ve had to suffer over the last nineteen years because of me. As difficult as it has been for me at times, my illness has made life for them harder than it should have to be, and I’ve always lamented what they’ve had to deal with as a result of my illness. But with the support you have shown me by being here tonight, you have alleviated a significant portion of that worry, and for that, I am truly and eternally grateful.
Specifically, I want to thank those who put this dinner and this trust fund together, as I’m sure it has taken a significant amount of time and effort to make it all happen. And generally, I want to thank all of you for your ongoing love and support, your emails and notes, your prayers and phone calls, your friendship and concern. And I believe it has been just that awesome support which has lifted me over the tide of my most difficult days and brought me safely to a place where I felt good and loved, and out of harm’s way.
Every season since I’ve become a coach, I’ve written in the bill of my cap three words that serve as a personal reminder to me about the kind of coach I hope to be, having borrowed those words from Gale Sayers’ biography. I write, “I AM THIRD” in my hat. Simply stated, “My family and loved ones come first, my team comes second, and I am third.” I never wanted or intended to make it public. The words were just for me, a personal and private reminder each day when I put on my cap of the kind of man I hoped to become one day, a man who cares about, and cares for others more than he cares for himself. And now, along with the words in the bill of my cap, all of you will serve as that same reminder to me, a reminder that good people do care for others more than they care for themselves, that good people are concerned about those they love in spite of what struggles they might have going on in their own lives. And so my gratitude extends beyond this night, as your support will be an enduring reminder to me that putting yourself third really is the best way to live. Jen, Timmy, and I thank you so much for that gift. Or as Jen puts it so much more eloquently and more simply than I do: “thank you for caring so much about our family.”
November 7, 2005
It’s Monday morning, and no word yet regarding the results of my liver test. To be honest, I am pretty anxious about it, not because I feel anything is wrong or that I expect bad news, but because bad news would change the course I’m on right now, which I feel is a pretty good one. So, I’ll let you all know once I know. Aside from that, things are decent, so I thought I’d take a minute to thank all the good folks in Morris Plains who, along with some Delbarton guys, organized the car wash and bake sale at the firehouse. I got so many nice emails about what a terrific day it was. And I’d like also to thank the people who have worked so hard to plan the big dinner event for this Thursday evening. It really stops me in my tracks sometimes to think about how lucky I am (and my family is) to have such support and love. Timmy had a great time at Halloween prowling the neighborhood with Jen, Emma, and Uncle Bruce. Please enjoy the beautiful weather and thanks for keeping my donor in your prayers. Take a look at the new pictures Jen took! Be well.
October 27, 2005
Hey everyone. Boston was a bit of a mixed bag, as most of my test results were decent, but my liver tests weren’t very good. Dr. Ho believes that the liver results could be attributed to one of two things: low magnesium levels or the start of some Graph vs. Host disease in my liver. I’ve had a chronically low magnesium level since I did the pre-transplant chemotherapy in August, and I’ve had all the symptoms of low magnesium: legs cramps, headaches, and fatigue. So, in my “I’m-Almost-a-Doctor” opinion, the liver tests are due to the low magnesium! The magnesium is obviously the one I’d choose to be the culprit, since the prospect of having any GVHD in my liver doesn’t make me all that happy. Dr. Ho decided to increase my magnesium intake and redo the liver tests in 2 weeks. Right now, I’m taking in pill form the equivalent of 63 bananas per day in magnesium, or 45 cups of spinach for all you green, leafy vegetable people. If the liver levels go back down in 2 weeks, then he’ll begin weaning me off the Pro-graff and Rapamune at that time. If they don’t, then I’ll have to wait and see what comes next. I am a little discouraged at delaying things 2 weeks, but, as Jen reminds me, I have to be patient and remember that things have been on schedule thus far, so I’m lucky that way. Please have fun this Halloween. Timmy is going to be Dash from “The Incredibles.” He believes he’s at least that fast, and sometimes tells me while we’re sitting together on the couch… “Dad, did you see that?” “See what?” “I just ran upstairs and back—that’s how fast I am.”
October 19, 2005 Update:
I’m approaching the next big stage with the transplant this week. Monday, I have an important PET / CT scan to see if any cancer is present. Hopefully, my scans will be clean which will allow me to begin the process to wean myself off of the Pro-Graff medicines at a normal rate. If I do show some disease, then Dr. Ho will likely speed up that process to activate the new marrow faster, so it can get to the business of fighting the cancer cells. At the normal rate, Dr. Ho explains that it takes about 4-6 months to completely get off of the Pro-Graff medicine. This time is a very sensitive one for me since I will be increasingly at a greater risk to contract GVHD (Graph vs. Host Disease). And if I have to speed up that process to get off the medicine more quickly, the chances of a difficult case of GVHD increase. My bone marrow test a few weeks ago came back with a 99% chimerism, which means that 99% of my bone marrow is now my donor’s—a percentage that Dr. Ho said was great for Day 30. With a 99% chimerism, I told Jen that, as a burger and fries guy, I’m worried that I’ll start having sudden hankerings for French cuisine and opera, but she thinks I’m nuts. All that said, I think I’m ready to move forward. And even though it’s comforting to know I’ve had that “extra” protection from the drugs over the last two months, I am anxious to see if my body is ready to handle things when the rubber meets the road. I’ll be leaving for Boston again on Thursday for my Day 60 work-up. I’ll be thinking of all of you and will be in touch soon. Enjoy the beautiful weather this week.
October 7, 2005 Update:
Hey everyone. I’m enjoying the pace of my days being at home, and have fallen into a routine that I like. The three of us take a walk most every morning around
Morris Plains, noticing some early Halloween decorations and the arrival of fall with the leaves on the ground. I read a lot and work on the computer for some of the day, since daytime TV is a total bust. But it’s playoff baseball season, and there’s nothing like it. Also, Timmy and I spend parts of the day playing with his little football, baseball, or hockey guys, which typically goes something like this,
“Woooooooo!!! That red guy, that number 5, goes in the penalty box, Dad.”
“There’s no penalty box in football, Tim, that’s hockey.”
“How come?”
“Because that’s the rules. In football, your team just loses yardage on a penalty.”
“How come?”
“I don’t know, ask your mother. She’ll know.”
“I can’t. Her is watching Marfa.”
“SHE is watching Martha, not HER.”
“Who?”
“Forget it…….Tim, a guy can’t block a field goal by standing on the goal post.”
“How come?”
“Because no one can jump that high.”
“I can.”
“No, Tim, you can’t. Trust me.”
“But I can because I’m really good at football and at jumping.”
“Maybe, but you can’t jump that high.”
“How come?”
“Ask your mother.”
“Her is watching Marfa.”
“Ugh.”
On a serious note, I’m trying to recharge my battery to get ready for the next stage and all that might come with it. And when I get down about how long this road seems and how tired I already am, I remind myself that patience is a good thing, and that getting too far ahead of myself does me no good. So it’s day by day. Have a great weekend, keep the messages coming, and please remember to keep my donor in your prayers.
September 30, 2005 Update:
Dr. Ho cut me loose for a little while, so we didn’t hesitate to drive home to Morris Plains a few days ago. Although I’m still under the same restrictions as far as diet and exposure (for fear of infection), it sure is great to be back in our house. Honestly, I can’t say I ever felt a greater sense of accomplishment than when I saw how happy Timmy was to be here. It made us feel so good to know we’ve given our son a house (a home, really) that he loves so much. We weren’t home 10 minutes before he was taking slap shots in the driveway at our chocolate lab, Bubba, and smacking wiffle balls over our neighbor’s fence! Even though it was painful, the Chimera test went well, except I had some bleeding trouble for a few days since I’m still on blood thinners for the clots I have. Today, I am 37 days post-transplant and my blood test this morning was good. I can do the blood work and a PET/CT scan here in Morristown before I have to go back to Boston in a few weeks. I’m sort of in a holding pattern until Dr. Ho begins to wean me off of the Pro-graph and Rapamune, the two drugs that “protect” me from my new bone marrow. If the marrow grows too strong, too quickly, it can cause an acute case of GVHD, which would spell trouble for my organs, especially my skin, kidneys, and liver. But at Day 60, he will start to slowly back off on those drugs because, sooner or later, we have to let my new marrow fight the cancer cells. I’d be lying if I didn’t feel a certain amount of stress from all this. In fact, there are moments when we are all very scared at where this can take me—and us. But most days I’m confident that things will go well as long as I stay focused day-to-day. And staying focused sure is easier for me with all the love and support I get from so many people, but especially from my family. I went for a nice walk this morning—what a beautiful day it is. (Oh, and by the way, there is a Giants helmet on the wall, but it’s just a lousy one, okay? And anyway, I’m a Jets fan.)
September 23, 2005 Update:
Jen and I thank you for all of your posts, notes, and prayers. I’m at Day 30 post-transplant, a nice, little benchmark according to Dr. Ho. Today I will be in the hospital for my chimera test, as they will remove some bone marrow from my hip bone. I’m not really looking forward to the procedure itself, but I am optimistically awaiting the results. All good news, even small news, lifts my spirits, and reminds me that I’m on the right track. And honestly, there are days when all of us up here need our spirits lifted, and while we have embraced as a family the burdens of fighting illness for as long as we have, there are those moments of pause that can be difficult when we ever just stop to think about it. Jen successfully took her stitches out today, and Tim and I continue to work on drawing the NFL helmets. On that note, what’s with all the new logos? Don’t they make helmets like the Colts anymore, just a blue horseshoe? Some good stuff…Timmy received a nice invitation from the Harvard baseball coach to come to practice and have ice cream with the team afterwards, and Jen couldn’t be more excited about the debut of “Martha Stewart, The Apprentice.” Finally, Dr. Ho mentioned that I may be able to come home soon for a few days in between hospital visits. And even though so many of you have offered to make dinners and stop by when we do eventually get home, I had to promise him that I’d follow the same strict guidelines about food and visitors, so I won’t be able to take anyone up on their kind offers just yet. Any infection could trigger Graph vs. Host disease, and that would set me back significantly. As always, please keep my donor in your prayers, and know that I miss you all and hope that you are doing great. (Tim took the new picture of Jen and me. He’s very proud.)
September 16, 2005 Update:
Hey everyone! Today is Day 22
post-transplant and everything is going well. I saw Dr. Ho
yesterday for some tests, and he’s pleased with my progress thus
far. As he explains it, next week I will have a Chimera test, which
removes some bone marrow from my hip, so he can determine the ratio
of my donor’s marrow to mine. It is his hope that he will begin
weaning me off of the pro-graph medicines by Day 60. That medicine,
in effect, protects me from my donor’s marrow growing too fast and
aggressively in my system, which could result in it attacking my
organs—something that would be a bad deal! I’m struggling a little
with a lack of appetite, and I have some hand tremors as a side
effect of one of my medications, but the fevers are gone, so that’s
a relief. Jen trimmed up what’s left of my hair even though she had
to go to the emergency room herself the other night. She cut her
finger and the tendon in her finger on a can of vegetables, so she
had to get a few stitches. But she’s hanging in there as she always
does, and now has an excuse for why she cut my hair a little
crooked! Timmy and I are working on drawing the helmets and
uniforms of all the NFL teams. It’s his plan to hang them all over
the apartment, so it “looks like a locker room, Dad.”
September 8, 2005 Update:
It’s been a difficult week in Boston that, to avoid being a downer, I’ll sum up quickly: fevers, chills, bone pain, exhaustion, and some hair loss. But yesterday’s hospital visit was positive for a lot of reasons. First, my donor cells have engrafted, and have begun to make cells on their own. As a result, Dr. Ho felt like I could take my access line out, so they sat me down, snipped the suture, and began pulling. (I couldn’t make some of this stuff up!) It was going well until it got snagged on something, so they called in another doctor to make sure that it wasn’t going to break off in my arm, which would be a bad deal. It was a tense few moments, but it all worked out, so that is a big relief. In my layman’s understanding, my recovery will be a series of ups and downs, dealing with the reconstitution of my body’s systems and my ability to survive the equivalent of a hostile take over of my own body’s bone marrow by my donor’s marrow. But I have a great deal of trust in Dr. Ho, and he says that things are going well, although we are still only in the early stages. (Check out Jen’s pic of Dr. Ho, Timmy, and me.) I hope you all are excited about school beginning and the start of fall. I’ve always loved how beautiful Morris Plains and the Delbarton campus are in the fall. Enjoy every minute of it! Please remember my donor in your prayers, and thanks for all the messages, cards, and letters—the hospital forwarded them to me.
September 2, 2005 Update:
It's Friday evening, and I just returned
to the apartment after a day at the hospital. Blood work, dressing
change to protect my access line, and a transfusion. My bloods are
still hovering at the low end this week, but my doctor says that is
normal for the stage I'm in right now, so not to worry.
Technically, I am at what he calls Day 9 post-transplant. All said,
I am feeling okay, just tired and some bone pain from one of the
drugs. Speaking of drugs, I think Jen could work as a nurse when
this is all said and done. She gives me three injections a day, and
manages my drug schedule, which includes about 26 pills per day and
one liquid suspension. Without a doubt, she is doing all of the
heavy lifting right now. I did go for a short walk outside for the
first time today because it looked so nice out. The mask and gloves
made me feel like I was Trick-Or-Treating, but what can you do! My
biggest concern right now is that my son has more and more Red Sox
gear. And that could be a bad deal.
August 28, 2005 Update:
Hey everyone! First, thanks so much for all the messages. You can't imagine the source of strength they've been (and will continue to be) for Jen and me, and my entire family. I came home from the hospital this past weekend after what was, honestly, a very tough stretch for me. Besides the very difficult physical aspects of the transplant procedure, the stress associated with all that is still ahead of me can be debilitating at times. And, of course, I worry so much about Jen and Timmy, and I miss home, my dogs, my friends, and Delbarton a great deal. That said, the next important bridge I have to cross is for my body to begin making blood cells again, and I hope to avoid an acute case of Graph vs. Host disease (GVHD). It's also very important that I continue to protect myself from infection. (Although I should say that it's Jen who protects me she s been incredible!) Please remember to include my donor in your prayers. What an amazing thing that he is from Europe--unbelievable stuff. Jen sent some new pictures this week for the web site if you want to check them out
August 26, 2005 Update:
Brian finished the pre-transplant chemo well, even though the following days of rest were really hard on him. The nausea took its toll. But he bounced back in time for the transplant, which began at 1:30 AM on Thursday, Aug 25. His new marrow cells arrived from Europe (yes, Europe!!) by airplane at Logan Airport at 8:30 PM that night, and then the lab scrubbed them to get rid of as many of the red cells as possible. So the actual transplant didn't start until very early Thursday morning. Even though he was anxious, Brian handled it like a trooper, and began to feel better by that evening. I was able to be with him during the transplant and stay next to him throughout the night. It was a difficult stage in all this, but he did great.
August 22, 2005 Update:
Brian was admitted to the hospital on Wednesday, August 17th. The pick line was placed successfully under Brian's right arm. He has been receiving Chemo-Therapy treatments for about six hours every day, and will continue through this weekend. He is in good spirits, and is in great hands with the nurses and doctors from Dana Farber and Brigham & Women's Hospital. Thanks to Matt & Kathleen Sigrist, Timmy and I are familiar with the area. I have been able to be with Brian often, while Timmy has had a tour of Fenway, been to the Museum of Science and the aquarium with Kathy and Matt. Thank you for all of the love and support you have been sending through the website. Since we are not allowed to have visitors except family, it mans so much to us to read your messages. Brian is scheduled to have the donor cells given to him on wednesday August 24th.
August 11, 2005 Update:
Yesterday was our last day of testing at Dana Farber prior to my admit date of August 16. It was a long day of tests, consent forms, and tough conversations about the transplant and the possible side effects from all the various drugs involved. But we did get settled with a very nice place for my family to stay while I’m up there and for me to stay intermittently for post-transplant testing and follow-up. I learned that, because of my past surgery, radiation, and blood clots, they won’t be able to put in a traditional Hickman line to access my heart for the transplant. Instead, it looks like a ‘pick-line’ that will go into my right arm and then be snaked up to my heart from there. That will take place on Day 1, the same day I begin the chemotherapy. Finally, while I’d love to see many of you, my doctor was very strict about visitors—only immediate family until he gives the green (or yellow) light. He continues to stress the risks involved since I don’t have a family-related donor.
August 2, 2005 Update:
The National Marrow Donor Program and Dana Farber have found a terrific donor match for me, and as long as the donor agrees to do the collection of his bone marrow on August 23, then it looks like I'll be admitted to Dana Farber to begin the procedure on August 16. Even though we've been planning on this for months now, the 16th sure feels like short notice! But, all things considered, I feel ready to start moving things forward. The Dana Farber web site has some excellent information on the procedure itself if you are curious, but it will begin with the insertion of the Hickman line into my heart and then with some pre-transplant chemotherapy to suppress my own bone marrow.
July 25, 2005 Update:
Brian continues his chemotherapy treatments and testing to keep things "status quo" as the search for the donor continues, with the good news that the National Marrow Donor Program has narrowed their search to a few people who are matches for Brian. Hopefully, a donor will be ready very soon. In the interim, the work to prepare the house has begun for Brian's return home once he completes the transplant in Boston. Because he will have a non-sibling, non-related donor, we have to ensure that the environment he re-enters is relatively free from anything that could potentially give him an infection or complicate his recovery. Brian is in great spirits and continues to spend time at Delbarton in the Athletic Office and with his family.
July 13, 2005
Update:
Brian continues the testing regimen that is preparing him for his second bone marrow transplant. Also, he continues the cycles of chemotherapy to treat the cancer, as the goal is to enter the transplant with minimal disease. The donor picture looks promising but is a long and tedious process. The National Marrow Donor Program continues to identify and test potential donors for Brian. In the meantime, Brian is feeling well and enjoying his time at home with Jen and Timmy. As well, he continues to work in the Athletic Office at Delbarton School and to coach the Sugar Loaf American Legion team at Delbarton this summer.
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