Dear Celalettin, June 21, 2012
Thank you for sending me the e-copy
of the paper detailing JoAnne's ofatumumab experience. Several days ago I went
online to track it down but found that I would have to pay $50 for a one-day
access. I figured that as contributing author, you would have ready
access. During my career, I spent a lot of time reading, analyzing and data
mining the medical literature so the value of the paper is not lost on me at
all. I find it to be a very unique and poignant keepsake of our transplant
voyage. I would like to get hard copy reprints to include in our family history
and will make a note to contact you once the article is hard copy
published.
Now to the more important. Please
accept my apologies for not responding to your voice mail message of condolence
sooner. I listened to it in a timely manner, but have found it challenging to
craft a proper response. The sadness and sorrow that came through in the tone
of your message has left me quite humbled.
I often recall the first time that
JoAnne and I met with you. She, of course, was at a critical and anxiety
provoking crossroad in her life. We had talked to friends and colleagues with
some familiarity of the University program. We had it in our mind that Linda Burns
was the doctor for us. She was leaving for an extended period however, so we
decided to meet with Celalettin Ustun, the physician relatively new to the UMn
BMT program, assigned to us upon referral. As we gained a better understanding
of how the transplant would unfold, we became more comfortable in your hands.
It did not take long for both of us
to realize how fortunate we were that our paths crossed. In the final
summation, I can say it no better than JoAnne and I saw it as a God given
blessing that we were invited to travel the SCT trail with you as our guide. In
time, we learned of your genuine compassion and empathy for JoAnne. We were
comforted by your forthright approach to the challenges that seemed to
endlessly confront her. Our spirits and confidence were boosted by your
introspective manner and the way you would be considering the options for
JoAnne's treatment whether we were in the same room together or after you had
gone home for the evening or weekend.
In all honesty, I was not brimming with
confidence when JoAnne began the transplant process. Early complications dimmed
my outlook further. Over a few months however, I watched you and the BMT squad
repeatedly rescue her from precarious settings. Our confidence grew and our
outlook for the future began to fill with optimism. Even when that heinous
Richter's Transformation descended upon her, we found hope and ultimately
success against the cancer in your knowledge and skill.
On June 5th, JoAnne finally let go of
the rope in her lengthy tug of war with CLL. She is at peace and no doubt
smiling as she did throughout her life. It was a sad day for all of us who
cared for her, and I am sure an additionally exasperating day for you. When I
look at the statistics, the odds are very long that a beautiful young woman in
her 40's should be stricken with CLL. The rarity of a Richter's Transformation
at the point of her transplant seems almost incalculable. For it to be detected
and effectively treated is highly implausible. And then to suffer demise at the
hands of infection and GVHD. I will struggle for a time as to whether we should
have opted for transplant sooner, but one must ask whether JoAnne's spirit and
compassion were finally more desperately needed elsewhere. She had completed
her mission on earth and resides now as a citizen of a better place.
You may be aware that during JoAnne's
transplant, I maintained a blog so that friends and family could be kept up to
date on her progress. It was also cheap therapy for me. I wrote a letter to Kathy and I hope that
you have seen it. It conveys more of my feelings about the UMn BMT team. I also
posted about the Captains of the Ship I hope these
messages convey the depths of our gratitude. There are numerous other messages
and pictures as well. While you are a highly trained man of medicine, in
our experience, you are first and foremost a kind-hearted human being. I
am sure there are days when the challenges of your work and life can become
discouraging. I recognize that you are a busy fellow, but it might not hurt to
keep handy a bookmark to the blog. While the ending is sad, JoAnne waged a
valiant effort against her CLL while surrounded and supported by the fellowship
of loving, extraordinary people including you and your team. She lived a life
that honored God and inspired others to more highly value life and living.
There may be times when her memory can serve as reminder of the powerful and
positive impact you have on lives.
On July 14, we will conduct a
Saturday evening memorial service and reception to celebrate JoAnne's life. If
your schedule allows it, please consider joining us. Additional details will be
sent in the coming days.
In the interim, here is wishing you
and your's God's blessings and continued fulfillment on your journey. Give your
wife and those two bright-eyed young boys a special hug on JoAnne's behalf when
you get home tonight. She was all about kids and family.
Peace,
Kevin Petersen
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