Great Days in the Great Plains Jun 1-3, 2012

Great Days in the Great Plains

One the eve of summer, the Great Plains welcomed us with a trip to Sioux Falls, South Dakota, small
town America whose history tells the tale of Indian wars, westward expansion and homesteading. The
trip to a state I may not otherwise ever visit started back in March, when we were invited to the Fargo
film festival. An avid film enthusiast and obstetrician from Sanford Medical Center in Sioux Falls , South
Dakota drove up to Fargo to see our film. Dr. Peter Van Eerden, who travels between both states to
provide high risk perinatalogist services to rural America had heard of our film when I told my former
boss, Dr. Eugene Hoyme. Dr Hoyme used to be the head of the Genetics Department at Stanford and
we worked together for many years in prenatal diagnosis and later in pediatrics in our Down syndrome
clinic. Dr. Hoyme left Stanford in 2007 to become Chief of Pediatrics at Sanford Medical Center in Sioux
Falls, S. Dakota. We joke about how closely the two medical centers are spelled. When our film was
accepted into the Fargo film festival in March 2012, I informed Dr. Hoyme because truthfully he was the
only one in the Dakotas that I knew.

When we met Dr. Peter Van Eerden at the Fargo film festival in March, he was so impressed with our
film that he returned to Sanford Medical Center in Sioux Falls and galvanized interest and funding in
having a community screening there. After many months, and through harnessing many collaborative
groups such as the CF Foundation, Dakotas/Minnesota Chapter, LifeSource (the region’s organ donation
organization) and the medical center, a wonderful event was planned.

Isa and I were met at the airport by Dr. Hoyme, whose warm smile and genuine kindness brought back
memories of the privilege it was to work with him. He escorted us to our hotel, even if we had our own
rental car, just to be sure we didn’t get lost. Now, in little Sioux Falls, I’m sure we wouldn’t have gotten
lost, but his was an example of fine Midwest hospitality. After a quiet moment to freshen up, we were
met by Dr. Peter Van Eerden and driven to Sanford’s Children’s Hospital in downtown for a media
interview. The big event of showing the film was the next day and the local news was invited to have us
share our story and increase interest in the event. The interview was in the lobby of the children’s
hospital, which looked more like a castle from a fairytale book, with a large ceiling, flags resembling
coats of arms, a fireplace and animal drawings from a Shrek-like medieval world all over the walls. From
the outside the hospital WAS a Castle, shaped like one with towers and spires with flags upon them.
Each floor of the hospital was divided by a fairytale story, so as you walked the halls children were
meant to feel safe, intrigued, entertained and not scared. The hospital was gorgeous- clean, spacious
and at moments, I felt like I was more in a Disneyland ride than I was in an advanced Children’s Hospital.
Dr. Hoyme is a geneticist and we heard about his work with fetal alcohol syndrome (particularly among
the Native American populations), general genetics, Down syndrome and other conditions. The prenatal
diagnosis world was much smaller in this particular geographic region due to the prevalence of
Christianity and pro-life beliefs, with only 2 genetic counselors doing prenatal counseling and 2 others
working with the pediatric/adult population. After the news interview, we were invited on a tour of the
hospital, led by the Director of Clinical Operations, Todd, a wonderful friendly man who stood 6 foot 7, and another
hospital administrator. The hospital had recently opened a heart center, specializing in the treatment of
all heart conditions for people of all ages. The halls and waiting areas felt more like the Hilton lobby than
a hospital. In the Neonatal Intensive Care Unit, each room was private with meticulous care taken to
maximize quality of life at the hospital. For example, the supply closet in each room had two doors- one
that opened to the hallway, and one that opened in the patient’s room. That way, when the staff had to
restock supplies, they didn’t have to disturb the patient since they could restock from the outside of the
room. About one foot above the floor in each hallway was a secret trap door the size of a book. When
opened there was a hidden display case of a fairytale diorama with animals and colorful nature scenes.
This was so that children wandering the halls could enjoy their strolls searching for the next trap door
while following a fairytale story. It was lavish and inviting, and surely would make anyone feel
welcomed, comfortable and downright at home. Not exactly a recipe for inviting compliance for the rare
few who enjoy spending time in the hospital and have a better quality of life there than at home. I
couldn’t help but wonder if this was a reflection of the competition in the medical system that each
hospital had to be better, more beautiful, more welcoming and more hand-holding as they strive to
meet the assumed fragility and emotional angst of everyone coming into its doors. Witnessing this
gorgeous hospital and all the thought that went into it was admirable and impressive, but I couldn’t help
but wonder if the opulence in the medical system will soon backfire with financial chaos just as it has in
other areas of our society. At the same time, I was relieved to know that the building of this new
hospital was financed by charitable donations especially by a famous football player, whose name of
course I can’t recall.

The hospital chapel was circular, with a ceiling that was illuminated in a soft blue. They were lights
behind the ceiling wall emanating through tiny holes, making the pattern of the constellations. As time
and seasons changed the lights changed and constellation pattern changed to demonstrate seasonal
skies and times of twilight and dawn. Wow. Over the top. The chapel was adorned with multi-faith
books and religious icons, which I found ironic since every patient room was equipped with a Bible.

We left the hospital tour feeling that our own local children’s hospital has a lot to live up to , and
while under construction right now with a new hospital planning to open in 2018, what kind of special
attributes will the new Lucile Packard Children’s Hospital at Stanford have? We rushed back to the hotel, changed and gathered some books and CD’s and headed to the Washington Pavilion for the 5:30pm reception prior to the showing of The Power of Two. It was a night on the town in Sioux Falls. Dr. Van Eerden, Dr. Hoyme and their staff had arranged a
catered reception with a harpist, open bar, and “meet and greet” opportunity prior to our event.

The local CF clinic was involved and the CF Foundation local chapter was incredibly supportive so it was
a packed house. After the National CF Foundation office requested all chapters to not support our film,
it was incredibly refreshing to have the support and admiration of a few rare CF Foundation chapters
and staff like those in Sioux Falls and Honolulu (see previous blog entry). We are so grateful to the CFF
Chapters that think independently, foster educational events like the film, and value the potential of the
film to increase CF awareness and fundraising toward a cure. There were about 200 people attending
the event, mostly from the CF community, but also some healthcare providers, local citizens who heard
about it in the news, and several people from the transplant community. The film was well received and
we had a very successful Q&A afterwards with intimate and emotional questions from the audience
about how to talk to your children about CF, when to know you are ready for transplant, and what
key elements helps survival. Sanford Medical Center had bought 10 books and raffled them off to the
attendees. We met several CF adults, including one who was in his seventies and did not look at all like
he had CF. He reached out his hand to shake, and without knowing he had CF due to his age, we shook
it. Then he opened his mouth to speak and the CF radar shot out- in his voice, I knew instantly he had
CF. I asked him if he had CF, he said yes, and I proceeded to reprimand him for shaking our hand, stating
that he should have known better. I explained the issue of cross infection and that we should not touch
each other. It made it worse when I asked if he had MRSA and he said yes. I immediately said I have
to excuse myself to wash my hands. I was probably rude, but we have to educate people who are not
cross infection conscious and we have to give tough love about it. It frustrates me how ignorant some
people are about cross infection. Later, I apologized for being so upfront and harsh in my greeting of him, and explained the implications of cross infection. All CFers were told to wear masks in the theatre and most complied. It
is the game we all have to play if we want to have any interaction at all. We want the CF community
to know that we and The Power of Two care about the health and safety of everyone with CF and we
are very cross infection conscious. I truly wish everyone with CF would learn safe practices rather than
isolate themselves so much that when they do meet people with CF, they do the wrong things because
they haven’t been educated. Isolation breeds ignorance, in my opinion. Safe sex, not abstinence…

Anyway, the evening ended with many accolades and a heartfelt welcome and viewing of the film. Isa
and I hadn’t eaten lunch and we headed to our favorite west-of-the-Rockies food destination – Cracker
Barrel for a true Americana meal. At 10pm, I enjoyed fried okra, macaroni and cheese and chicken and
dumplings.

The next morning was the Sioux Falls CF fundraiser walk, Great Strides. There were over 300 people in
attendance which was impressive for a small town. The support and family networks of each attendee
blew me away. People made team t-shirts, kids were on the spotlight for the day and we met some
amazing families. We met two grandmothers who were taking care of their 7 year old granddaughter
with CF. She had the G551D mutation and had just started the new drug, Kalydeco, made by Vertex ,
that fixes that genetic defect and restores normal CFTR function. I listened in awe at the incredible
change that this child had experienced in 8 weeks. Her CF symptoms were almost resolving- amazing.
I have so much hope that children her age will never have to experience transplants because genetic
medicine will fix the defect. I spoke to a father of a 19 year old who had attended the film the previous
night. After the film, on the drive home, he stated that they were able to have a heart-to-heart and
reflect on the film. The film truly affected his son, and inspired him to take better care of himself. The
father said of Anna Modlin, who depicts end-stage CF in our film, “Tell Anna Modlin that she changed
my son’s life.” That , my friends, is why we did the film. Not for personal accolades or recognition at ALL,
but to inspire people with CF to take better care of themselves, to cherish life and to meet families with
this shared experience from all over the USA.

The Great Strides walk in Sioux Falls was in a park that weaved around the Big Sioux River. The beautiful
June morning brought vast blue skies, a few wispy white feather-like clouds and greenery that showed
that summer was on its way. Rolling green hills met meadows and wooded streambeds, and people
enjoyed the sun with grins, excitement and true community fellowship. The entire Great Strides was 6
miles long! I petered out as my blood suger plummeted at mile 3 and had to take the emergency golf
cart back to get some sugar. Darn insulin! I shouldn’t have taken so much! Isa did the entire distance, jog
walking it and coming in completely overheated and sweaty. By 11AM it was over 80 degrees. The CF
Foundation of the Dakotas/Minnesota Executive Director, Patrick Kirby, was fun, dynamic, energetic and
so enthusiastic. He epitomized what I call “good folk” and true dedication. Bless him!

In the afternoon, Isa and I headed to downtown Sioux Falls. Museums on frontier life, Indian history
and Harley Davidsons beckoned us. So did cute boutiques in downtown’s mainstreet- and we ended
up getting stuck there. We were intrigued by Americana and tantalized by what we hoped were low
Mid-west prices. Isa enjoyed a buffalo burger while I chose something on the lighter side since my gut
problems returned exactly one month after stopping chemo. The digestion struggle continues…

After being sucked into shopping we headed back to the hotel to refresh ourselves, and then headed to
Dr. Gene Hoyme’s home for a dinner invitation. Dr. Hoyme, my former Genetics colleague at Stanford,
had organized a huge dinner party in the backyard of his gorgeous multiroom ornate mansion in a
comfortable neighborhood of Sioux Falls. It was the kind of home I always dreamed of – bright, natural
wood, artistic and warm and comforting. The home was decorated with art from Dr. Hoyme’s places of
work- South Africa, Arizona, Vermont, California- he was a man of many chapters in his life.

On the edge of some woods, we sat outdoors on large tables among genetic counselors, geneticists, CF
care providers and researchers chatting away as we enjoyed homemade beef brisket, macaroni salad,
beans, bread and slaw. So American and so delicious. The night was peaceful, the pace of life enticing
and the people so kind and interesting. For a moment I was attracted to small town America and the
prospect of moving away from the rat-race of the Bay Area. I was intrigued by being in a town bound
by faith, history and community. Then I was reminded of the 30-below zero winters, the lack of any
transplant center, almost no ethnic diversity, and many (though not all) with differing sociopolitical
views (one of the Sioux falls residents said that S. Dakota is such a politically red state that it is “burning
in flames.”) Could I live here? What would I do if I had a transplant complication in the dead of winter
and had to get to Minneapolis, the closest lung transplant center? My observation that those living far
from a lung transplant center have the lowest survival would apply to myself and I’m not sure I want to
take that risk. What defines happiness where we live? Acceptance, compatibility, the feeling of being
home and belonging somewhere? Am I destined to live in the crowded and crazy Bay Area forever?

On the way home, we were invited to Dr. Van Eerden’s home for a tour. He lived close to Dr. Hoyme
and also had a gorgeous home with many rooms, extravangantly decorated with international art, color
and character. Dr. Peter Van Eerden’s partner, Hugo, was a New York fashion designer with an eye for
style and interior design. In his home we admired a red velvet couch, a colorful tile staircase, 12 foot
high bronze castle doors from Indonesia decorating the wall, and a wooden warrior statue from the
South Pacific. We also met their three adorable dogs, including a tiny obese terrier/Chihuahua who had
a health problem that made him a XX male. It was clear that an enormous amount of time and energy
was put into making this such a comfortable, impressive house. Inside I lamented in my neglected home
life- the fact that I hadn’t vacuumed in 8 months, there was a botany experiment growing in my tub (ie
mold) and my husband had to go to the store to buy toilet paper because I didn’t have time even for
that! I vowed that another life goal would be to do a little more nesting and care for my home like Dr.
Hoyme, Hugo and Peter did.

The night was late and we slept deeply. The next morning we had about half a day to see more until
we had to head to the airport. Quickly we grabbed breakfast, and headed to Sioux falls, the namesake
waterfall that gave the town its name. The Sioux river created a ½ mile cascade of multiple waterfalls
that became a base camp for the first settlers in the 1800’s. It became the location of a fort for the
American Calvary as they hunted out Sioux Indians and other “enemies” of the expanding West. It was
bittersweet and since Dances With Wolves was one of my most influential films, I could only imagine
what it used to be like before the WalMarts, Starbucks and Bass Pro Shops took over the great tall grass
prairie. Isa brought her bagpipes since she was competing the next week and insisted on practicing at
the falls. While people took pictures and listened to her sound, I walked around, enjoying the sound
of the falls, collecting a sample of water for my American river collection, and praying not to get skin
cancer from the sun. After about an hour we headed to some recommended state parks about 20
miles outside of Sioux falls. Within minutes on the freeway, we were in true American farm country.
Silos, cows, hay rolls, long stretches of grassland and red barns littered the scenery. No wonder the
US government of the 1800’s wanted to take over this land- it was truly great land for opportunity to
those who didn’t understand the nomadic lives of Native Americans. We drove past old churches, a
John Deere tractor dealer, and even got stuck behind a huge tractor driving 15 miles per hour. In our
impatient Bay Area ways, we freaked out for being slow as our time before having to head to the airport
was limited.

We landed in Garretson, South Dakota, a tiny town with a main street that consisted of a library, market,
post office, bar and some sort of American Legion club. It was dead on Sunday morning with not a
soul in sight. In the window of a store hung a crayon drawing made by a child with the American flag,
a yellow ribbon and the words scribbled “Thank you troops for serving our country.” Railroad tracks
marked the west side of town, the Salt Point Creek was on the north side and farmland on the Southeast
sides. The main street was surrounded by modest homes with mailboxes that sat out by the curb, large
lawns and welcoming porches. We found a local market and bought overpriced local cheese and cured
meat, and the only natural healthy-looking bread product in the store- imported wheat crackers. This
was a store that sold soda pop for $1, processed cheese, twinkies, Webers bread and had the smallest
fruit/vegetable section in any market I had ever seen. I will refrain on commenting on the contribution
of the food industry on health problems in rural America.

We headed to Devil’s Gulch park, famous as a historic hide out for the American outlaw, Jesse James.
After walking through rolling hills, over bridges that looked down on a deep gulch surrounded by coarse
grey and green rock (the famous Sioux quartzite of the region), green meadows and a campground,
we came to a river and sat under a tree on a grassy hill by the banks to eat our picnic lunch. Kayakers
floated by, wildflowers sprinkled the opposite bank on the other side of the river, a family down river
were fishing on a Sunday afternoon- the atmosphere was peaceful and delicious. Rarely in my hectic
life at home do I have time to sit by a river for a picnic with my best friend, Isa. Life couldn’t have been
better.

After a short lunch and indulging on classic American candies bought the day before at Cracker Barrel,
we headed back to the car. We had only about 1.5 hours left before having to head back to the airport
and two more parks teased us for a visit. We had to make a choice and ultimately chose to drive to
Leverne, Minnesota to go to Blue Mound State Park, famous for Indian burial mounds. As we
approached the state border it was 1pm and over 85 degrees. We came to the trailhead that pointed to
the Indian mounds and headed out. There were no mountains or hills, no trees, just a trail into the
prairie. We marched in the heat with our faces covered in sunblock, heads under wide-rim hats, and
gloves on our hands looking like complete sun-phobic dorks but that is what we have to do this far out
from transplant when we are skin cancers waiting to happen. In the distance, behind a large fenced
corrale was the “buffalo enclosure,” where a herd of buffalo- a reminder of the history and tragedy of
this place, where millions of buffalo once roamed and were slaughtered by greedy trappers. After about
2 miles, no domes were in site and the clock was ticking. We continued on a trail which really looked just
like a wagon wheel mark in the middle of an endless grassy prairie. Isa ran ahead to people in the
distance to inquire. We put our stuff down and started to jog. I had not jogged since before
chemotherapy caused me horrible neuropathy in my feet so I felt awkward and unstable. But who could
pass up a chance to jog in the great prairie in 85 degree heat in the middle of the day? I ran, not far and
not fast, but boy did it feel good. I could not keep up with Isa, but only rejoiced in what I could do after
six months of chemotherapy. My legs were numb and tingling as always and each step took
concentration, but the feet cooperated and I was thankful to God for that moment of bliss. I passed
boulders of red Sioux quartzite and saw distant woods that weaved through grassland obviously
following a creek. In a while Isa returned, and we put our hands up to Heaven feeling like two little
people in the vastness of this endless green grassy prairie under a contrasting blue sky. It was the
donate life colors- green and blue- juxtaposed together as LIFE in its natural glory. We felt so alive.

Turns out that the entire area we were frolicking on WAS the great Indian mound, according to those Isa
spoke with up trail. We said a prayer for the lives lost here and the stories that could have been told by
the Natives who struggled in this place of history.

Time was tight and we began to jog back to the car. We had to get back to the airport! Jogging became
less pleasurable with each 50 feet as my fatigued legs burned and I had to stop more often than not. Isa
was eons ahead of me, and in the distance I saw her reach the car, get in and drive it to the trailhead
so that by the time I finished, I jumped in the car as she sped off. Sweaty, hair in shambles, panting and
dehydrated we rushed off to the airport, stopping only at a quick mini-mart to buy water to guzzle so
our intestines didn’t turn to concrete in the heat. Life was good and things couldn’t be more Stenzel-
esque. We joked that no one else would ever tolerate our travel style- a desperate rushed go-go-go
fueled by the firm belief that we will never return to each place we visit, a notion that surprisingly has
not yet come to fruition. I hope to be back to South Dakota some day, this time on the West side to visit
the Black Hills, Custer State Park, the Chief Joseph monument, and oh, yeah, those four famous white
guys’ heads carved into a mountain. It is a state of immense beauty, nature, Native American heritage
and American history.

We made it back to the airport just in time. Sioux Falls was a small airport with just 3 baggage claim
carousols and 2 gates. Unlike San Francisco, it was a mere 15 minutes between returning our rental car
and being at our gate ready to board. Life was good and we were blessed with another amazing trip,
thanks to the support, generosity and interest of others. Midwest hospitality never fails and we were
once again showered with opportunity to share our film and story while seeing America, getting to know
Americans, loving America and reflecting on its history and our place in it.

THank you for reading this immensely long blog!

ANA STENZEL

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1 Comments to “Great Days in the Great Plains Jun 1-3, 2012”

  1. Kathrin says:

    I love your long blogs. Thank you so much for sharing your thoughts and adventures! There is always something in it that makes me re-think my own beliefs and actions.
    Much love to you!
    Kathrin, form Germany (with cf, as you might have guessed…)

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