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| Sarah's Reaction |
Two weeks ago Kevin, Sarah's boyfriend (and also high school
sweetheart), came to us and asked us for Sarah's hand in marriage. We gladly gave him our approval. He wound up proposing in Montana where they
had gone for a job interview for Kevin, and a mini vacation. They were sightseeing in a ghost town at an old church and
Kevin got down on one knee, proposed, and was taking pictures the whole
time. Multitasking. So now our youngest daughter is officially
engaged. We know Kevin's family and we
are so happy to have them all now a part of our family.
Last week, Donna and I were also in Sunnyvale at the headquarters of Pharmacyclics, the company that makes Imbruvica, the drug that I am now on. About a month ago I had received an email asking me if I would be interested in participating in a Patient / Caregiver Advisory CLL Forum. At the time I knew nothing about who was putting it on, or what it was really about. I first had a screening interview that asked me about my diagnosis, my history, and my treatments. I must have done a good job in telling my story because at the end of the interview they not only asked me to come, but Donna as well. After two weeks they sent me the itinerary and Pharmacyclics was identified as the company that was putting on this Forum.
On Thursday we flew to San Jose and that evening we went to
a Reception / Dinner where all the participants, the consulting firm
coordinating the Forum, and members of the Pharmacyclics team gathered. I was able to speak directly to many of the
Pharmacyclics team including a doctor that I had seen many years ago at UCSD,
who now works for Pharmacyclics. I
kidded her that she probably knew me pretty well since she had performed a Bone
Marrow Biopsy on me. The staff that we
met told us that this was the place they knew they WANTED to work for. We were able to ask questions about what the
future held for their drug. Because of a
non disclosure form we had to sign, I can't get into specifics, but let's just
say I am VERY excited about the future.
The reception was opened by Bob Duggan, the CEO of Pharmacyclics. His opening remarks were very powerful, and
you could immediately tell that this is his passion and his life. We could tell that his passion has spread
throughout the organization
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| Bob Duggan, CEO of Pharmacyclics with Donna and me |
The next day we were taken to the Pharmacyclics
headquarters. There were 9 patients and
2 caregivers at the session. Bob Duggan
again came down and spoke to us, once again with a passion and fire you rarely
see. He spoke for about 20 minutes,
which for a CEO, must be a very valuable piece of his time. Then all the participants spoke about their
journeys, how long they have been living with CLL, and their treatments. This was a VERY informed group, most of the
patients have had CLL for over 5 years, most have been treated many times. Once again, I can't get into the details, but
it was clear they wanted our opinions on issues and patient advocacy.
At our lunch break, the Chief of Oncology Operations asked
the group if any of us would want to go over to their other building and meet
some of the staff that is working on Imbruvica. She told us that it would be very rewarding for the staff to actually
see real people that are taking Imbruvica and what a difference it has made in our lives. These staff members never interact with
patients so she thought it would be a great experience for both of us. So 6 patients and Donna went over to the
building and into a giant conference room.
There must have 50 Pharmacyclics staff people in the room. Each of us told our stories, how we had
failed other treatments, how close to death we all have been. After about 3 patients spoke people actually left the
room in tears. I was the last one to
speak and by then I think more than half of the staff were crying. It was a very powerful and moving experience
for both the Pharmacyclics staff and the patients.
At the end of the day, Bob Duggan once again came down,
thanked us, and took a picture with all of us.
We then were able to talk to him individually and he seemed delighted to
be able to do this. I know I haven't
ever personally met a billionaire, but he is so down to earth and passionate,
it was amazing.
We feel blessed that we were able to participate in this
Forum and we hope that we contributed something positive, not only to
Pharmacyclics, but to future patients journeys.
The day after we got back from up north (Saturday) we went
out to dinner with Kristen and Donna's parents because Jeff was out of
town. At dinner we of course joked about
Jeff being gone hoping the baby would stay quiet for another 2 days. Being 5 weeks until her due date we thought
the chance of anything happening was slim.
WE WERE WRONG. At 3 a.m. on Sunday
we got a call from Kristen saying her water had broke. We quickly drove over there and took her
right to the hospital. She had started
labor. Jeff quickly bought another
ticket to get the earliest flight into LAX and arrived at 9 a.m. I went and picked him up and brought him to
the hospital. Kristen had reached a
point before he got there where she was not progressing, it seemed she was
waiting for him, as soon as he got there she started progressing. 4 hours later baby LOIS GENEVIEVE came into
this world. Kristen was a real trooper thru the whole delivery and she did a GREAT job. The interesting thing was
that Kristen's doctor was not on call, so the other doctor in the group was on
call. This doctor had been Donna's GYN
for over 10 years. Since Donna was in
the room and they were a little short staffed in labor and delivery, Dr. Kelvie
put Donna to work helping with the delivery.
Talk about good timing.
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| Lois Genevieve |
Even though she was 5 weeks early she was still 6 lbs 2 oz,
and over 20" long. But being
premature, she does have some issues that caused them to take her to the
Neonatal ICU. Being early means the
lungs aren't completely developed so they helped her breathing for less than a day. She was also jaundiced because of the trauma
of the birth, which is very common. So
unfortunately Jeff & Kristen went home without Baby Lois, but she should be
home any day now. We are so proud to
once again be grandparents. We are
especially pleased with the name. They
had not told anyone the name until she was born. Lois was my mother's name, and is also my
step mother's name as well as my aunt's name.
Genevieve was Kristen's grandmother's name. It was so great that they wanted to honor
their families in this way.
What a week.
I actually have NO news to report and am still doing fine.
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