Dr. Julie Chu, a Hematology-Oncology physician at Children’s Hospitals and Clinics of Minnesota, loves to care for her individual patients. And when the person with cancer is a child, family members too become like patients. Pediatric cancer medicine is very family-centered, and the wishes, feelings and perspectives of the adults will impact the care of a child. Each child is a person, not a number or a diagnosis. Many different aspects of each person will impact their illness, their care and their coping.

Dr. Chu has been interested in cancer since her father died of stomach cancer when she was in high school. In college, she found Biology and Biochemistry to be fascinating subjects. Her mother always wanted her to be a doctor, but she was not so sure. Then she took her graduate school and medical school entrance exams, and decided a finite course in medical school would be better than an indefinite quest for a doctorate.

Pediatric medicine was a given, because Dr. Chu always liked kids. After attending medical school at the University of North Dakota, she served as a Resident at the University of Minnesota, where she “just loved” her rotations on the hematology-oncology floor. Dr. Chu left the Midwest for sunshine and warmth. She took her Hematology-Oncology Fellowship at Children’s Hospital in Los Angeles, California. Then, for a time, she began practicing in Oregon. When she was offered an opportunity to come back to the Midwest, to practice with Children’s Clinics in St. Paul, she wanted to return. She “always liked the way they practiced medicine in Minnesota,” and feels comfortable around Midwestern people. Now, after office consolidation, she practices in Minneapolis. Many of the patients she treats have some form of sarcoma.

Dr. Chu “really likes taking care of sick patients” and finds it rewarding to meet with new patients who have serious, life-threatening problems. There is never a dull moment, and many of them overcome their problems, do well, and are able to move forward. She said, “it always surprises me.” You have cases where you think people are so sick, and then “fast forward six months and they’re playing. You still have a mental picture of them intubated and in the Intensive Care Unit.” Other children look well, but run into complications. Each person is unique.

What has struck Dr. Chu through the years is how variable coping is. Culture, emotional state, and personal preferences all play a role. Often, when families have been coming to the hospital for a long time, and have gotten to know the routine and the people, they feel most comfortable at the hospital. It can be difficult to face taking all that away. But when time is short, people may want to go home or visit somewhere else.

Dr. Chu has attended Rein in Sarcoma’s Party in the Park several years, with her fellow oncologist Dr. Nancy McAllister. She also serves on the Medical Advisory Committee working with the Red Flags Campaign. The group has created materials and begun to increase outreach, to try to help patients and doctors identify sarcoma cancers early, before surgery is performed. There needs to be a balance, so not everyone is exposed to the risk of scanning. But better decisions could be made if more people knew about sarcoma.

When asked to name her favorite kind of sky, Dr. Chu recalled an early morning when she was returning from the health club, and how fascinating it was to see the sky completely cloudy in one direction; then, when she turned a different way, it was clear and blue. And in Arches National Park in Arizona, it was amazing how bright blue the sky was. It was so blue.

Her favorite colors? Green and purple.

And I am grateful for having had the privilege to talk with Dr. Chu.

By Christin Garcia

It is hard to watch patients die. Yet getting to know people who face cancer and seeing how they persevere can be gratifying and inspirational. Treating cancer patients helps keep University of Minnesota Professor and orthopaedic surgeon Dr. Ed Cheng grounded and provides him with perspective. Dr. Cheng considers it a privilege to be a physician, to have the opportunity to care for people every day. He also considers Karen Wyckoff to be a great example of how “you can make a difference. One person can make a difference.”

Dr. Cheng was not involved in Karen’s medical care. He knew that patients who are motivated can make a difference, however, and was intrigued by the opportunities her ideas presented. So when the University of Minnesota asked for a doctor to help out with the new organization, carried forward by her parents, he agreed. Dr. Cheng became a founding board member. It has been “quite exciting” to see Rein in Sarcoma grow. RIS has generated energy and enthusiasm at the University, money has been raised to support cancer research, educational materials have been created for doctors and patients, and a new website has been developed. RIS Dr. Cheng teaches surgery at 2010 Mini-Medical School really has been “instrumental in the care, management and support of patients who have this terrible disease, sarcoma.”

When asked how he became involved in the educational video prepared for patients facing amputation, Dr. Cheng said: “You know they say ideas are born out of necessity, and that was certainly the case here.” The life-changing effects of losing a limb are “so paramount,” patients need to sort through this over a much longer time frame than is available in an office visit. Patients need to understand not only the functional and logistical changes they can expect but also the psychosocial aspect of coping with the loss of their limb. They need to have this information provided in a way that is sensitive and compassionate. If doctors don’t provide help for patients going through this challenging process, they are missing the “art of medicine.” One way to help patients is by hearing and learning from others who have gone through similar experiences.

But when Dr. Cheng set out to look for resources to share with his patients, he couldn’t find them. He identified this as an unmet medical need and decided to ask RIS for funding to help create materials. RIS did award funding, and Dr. Cheng led the efforts to make a video including interviews with adults who have undergone major surgery and limb amputation. He personally found the movie clips inspirational to watch. He learned things he had not known about what people experience, and he has incorporated this knowledge to help his discussions with new patients.

Video for Cancer Patients Facing Amputation

The intent of the video was to help as many people as possible, so it is posted on YouTube as well as the websites of the University’s Cancer Center Sarcoma homepage and Rein in Sarcoma. With time, more and more people are watching the clips, some from places far away.

Those who’ve been involved in making the movie have noted the gratification of knowing that they’ve helped people elsewhere, some of whom they haven’t even seen. “So we have to say thank you to KWRISF,” Dr. Cheng added, “because without them we would not have been able to do it.” Another RIS-funded video is in process to address children’s experiences.

Dr. Cheng always wanted to be a doctor, since he was a boy in elementary school. He received his Medical Degree from Northwestern University in 1983 and did a General Surgery Residency there. He moved to Harvard, where he completed an Orthopaedic Surgery Residency in 1989 and Fellowships in Orthopaedic Oncology and Pediatric Orthopaedic Oncology in 1990. Also in 1990, Dr. Cheng joined the University of Minnesota faculty. He has practiced here ever since.

From time to time, of course, Dr. Cheng does leave the state. For example, this was his second year traveling to Mongolia as a medical missionary, as part of his ministry through the Christian Medical & Dental Society. Dr. Cheng felt called to a broader mission, beyond his practice here, and wished to offer this service in Christ. He had the opportunity to consult with physicians in Mongolia and help care for their patients. He found it rewarding to educate doctors about cancer treatments and complex joint replacements and to help them build their infrastructure. “This is not giving them a fish, but teaching them to fish,” which may leave a lasting legacy. And through the wonders of electronic communication, Dr. Cheng can continue to consult with physicians there, even from his place in Minnesota.

Dr. Cheng loves his work as a physician. “How many people have the chance to help someone out all the time?” he asked. Every day, he gets to “see all these stories” and meet new people. He also has the chance to teach other doctors. And one never knows what else may come along. “RIS just popped up,” he said, and “look what it’s become.” Dr. Cheng would encourage young people who are interested to consider this career. He also would encourage people to “have confidence in knowing that if you think big, you can make a difference.”

By Christin Garcia

Orthopedic surgeon Dr. Denis Clohisy saves lives. With a world-class multidisciplinary team at the University of Minnesota, he is working to save more. RIS funding provides a creative spark and a vital source for a “hopeful research culture” at the U, which may one day contribute badly needed treatment advances for sarcoma. For now, each day, the University team provides outstanding patient care, in an environment enriched and energized by RIS.

Dr. Denis Clohisy has been treating sarcoma patients for 20 years. A surgeon who joined the University of Minnesota Medical School faculty in 1991, Dr. Clohisy was named Chair of the Department of Orthopedic Surgery in November 2007. With a world-class multidisciplinary team, Clohisy is leading efforts to develop better treatments for patients who have sarcoma cancer. These treatments are badly needed, as can be seen in the persistently hard survival rates that accompany some diagnoses. Yet one young woman who lost her life to sarcoma started a revolution, here in Minnesota. Her spirit of hope, her wish for community, can be felt every day. Rein in Sarcoma (RIS) has grown from its small beginnings in 2001, just months before Karen died, to become an important spark for creative ideas, hopeful energy, and inspired patient care at the University.

Have you ever seen the sunflowers? At any event hosted by RIS, gorgeous cloth flowers mark the survivors. At the Party in the Park celebration each July, the sunflowers are out in force. Asked how it feels to see so many people walking around who are there because they have been treated at the University, Dr. Clohisy said this picnic is “the most rewarding day of the year” in his professional life. He loves to have his own children join him there, to see the impact his work is having on so many other lives. The children he has treated hold a special place in Dr. Clohisy’s heart. So, too, do the families who have lost someone to sarcoma. To see their willingness to participate in the organization, despite their loss; “it’s really inspiring.” And hopefully this means the family believes their loved one received the best care possible, even though they could not be cured. This picnic is a very special thing.

Asked about the impact RIS has had at the University, Dr. Clohisy discussed the practical support for research, at a time when it is extremely difficult to get funding. By providing money that allows researchers to test their ideas, a necessary first step before they can seek large-scale funding from major organizations, RIS has created “a hopeful research culture.” RIS also has created a culture of scholarship, research and energy that has drawn more people to the field. More doctors are treating sarcoma patients, more scientists are researching sarcoma cancers, and the team works together more collaboratively to share and develop ideas. This is really important. The young post-doctoral scientists dedicated to sarcoma research, in particular, may be the ones who discover breakthrough treatments. Ten years ago, there were not graduate students who knew much about sarcomas or cared to focus their research in the field. This has changed.

By providing money that allows researchers to test their ideas, a necessary first step before they can seek large-scale funding from major organizations, RIS has created “a hopeful research culture.”

University scientists are succeeding, as measured by publication of their work in leading scientific journals and by research funds granted, including a large grant from the prestigious National Institutes of Health. Cutting-edge genetic research takes place at Minnesota, enabled in part by RIS investments.

Yet the most important impact RIS has had goes way beyond this funding. The education and support for patients who otherwise would feel extremely isolated; the collaborative energy among the medical team; the hopeful research culture? All created through RIS. As Dr. Clohisy observed, “If you think about that, it’s quite impressive.” Dr. Clohisy joined the RIS Board of Directors in January of 2017.

You who are reading this article may have a deeply personal understanding about the value RIS brings; the special collaboration between RIS and the University of Minnesota; the need for medical advances. We hope you will continue to support this work with your time, your energy and your financial resources.

We also hope you will continue to share your smiles with other families who face sarcoma. You do remember, how much those smiles can mean?

University of Minnesota Professor and Radiation Oncologist Katie Dusenbery has been involved with Rein in Sarcoma from the start. After all, she tells us, “Karen was my patient.” She appreciates the support RIS provides for her other patients and looks for ways the physicians can say thank you in return. A founding board member, Dr. Dusenbery has focused on the education aspect of RIS’ mission.

She loves introducing medical students to oncology. Each time she does, there is “one more person who knows how wonderful cancer patients are.”

After completing a residency at Michigan State University, Dr. Dusenbery came to Minnesota for a Fellowship in Medical Oncology. She switched to radiation oncology for a time, not intending this to be permanent. She discovered a whole different aspect of taking care of patients that she really liked, and decided to stay. In 1990, she took her first staff position at the University of Minnesota. She has served as Head of the Department of Therapeutic Radiology since 1999 and now is recognized as one of the Best Doctors in America in her field. As she talks, one understands that Dr. Dusenbery has a passion for the clinic; she really cares for her patients, and she wishes to train new doctors who will do so, as well.

The rigorous, multi-disciplinary work in an academic medical center always called to Dr. Dusenbery. She can’t imagine practicing any other way. As you may know, there is a good deal of “gray” when it comes to treating sarcoma cancers. It is easier to make decisions in collaboration – and also fun.

When she began to treat patients with sarcoma cancer, there were no other radiation oncologists specializing in the area. Dr. Dusenbery gravitated to these patients, who often were young, and saw this as a great opportunity for her future work. Although she now shares sarcoma patients with Dr. Chinsoo Cho, who she recruited to her program several years ago, Dr. Dusenbery still treats patients. Especially the kids. With pediatric patients, the first challenge is to see if you can avoid having to give radiation at all. Because their bodies are still growing, their cells can be more vulnerable to radiation damage. They also have much longer lives ahead of them, making the risk of secondary cancers that can develop as a side effect less tolerable. If radiation really is required, “you try to limit the dose as much as you can.”

Just what does a radiation oncologist do? Long-term follow-up with patients, for one thing. “I love that.” But first, they design the radiation field by drawing on a scanned image, slice by slice, to show what areas should be treated and which should be avoided. Dosimetrists and medical physicists help to translate these instructions before the machine is powered on and the precisely targeted beams are delivered. Sounds like Star Wars to me. And there is a lot of art involved. Decisions must be made based on imperfect data. Doctors must balance the goal of controlling the cancer against the desire not to cause harm. One of the most difficult aspects of Dr. Dusenbery’s medical practice is when a patient’s cancer comes back, or a patient experiences a bad side effect, and “you second guess what you should have done.”

Teaching others how to navigate these challenges is another great part of Dr. Dusenbery’s job. She loves seeing a resident start out not knowing what they’re doing, then learn, then go out and do well in practice. “When they become a really good doctor.” Teaching doctors how to treat patients well “can make a difference for a lifetime.”

The oncology patients, in particular, have spoken to Dr. Dusenbery. Cancer is “an advanced course in living” and it is really an honor and a privilege to be on the journey with them. One family she joined for the journey was Karen Wyckoff’s. Karen was “such an incredibly wise beyond her years young woman” and it was really fun knowing her. Dr. Dusenbery was a founding Rein in Sarcoma board member. One has the sense that she will stay connected for as long as she is welcomed. And she seeks good ideas, including ideas about how the physicians can thank the group for all the patient support services it provides.

This wish led her to begin the Mini Medical School, which was presented by UMN doctors for several years. Offering families, volunteers and donors the chance to learn about sarcoma, up close and hands-on, the Saturday morning affair was been a big hit with those who’ve attended.

Dr. Dusenbery began the Rein in Sarcoma Scholar program in 2009 (now the Jan Maudlin Sarcoma Scholars), connecting medical residents with the University’s sarcoma team. The scholars coordinate an educational presentation about sarcoma to other medical students, increasing the chance that if they encounter a sarcoma cancer in clinical practice, they will actually notice the signs and respond appropriately. The Jan Maudlin Sarcoma Scholar program offers another benefit: there is “one more person who might become an oncologist.”

We thank Dr. Dusenbery for her long and inspired service to RIS.

By Christin Garcia

Emily Greengard is a Pediatric Medical Oncologist at the Masonic Cancer Center and Assistant Professor at the University of Minnesota. Dr. Greengard has become involved with the RIS Medical Advisory Committee so central to the work of the Red Flags team. Passionate about treating her patients and having the opportunity to combine her practice with research in an academic environment, Dr. Greengard says “it’s nice to wake up every morning and think there’s nothing else you’d rather do.”

A two-part focus

Emily always knew she wanted to be “a doctor treating children,” but did not begin with the idea that her work would be with cancer patients. During her Pediatric Residency at Children’s Memorial Hospital and Northwestern University, she rotated through the children’s oncology practice. There, she “just fell in love with the patients.” She really appreciated the interpersonal relationships that can be developed with patients and their families.
Dr. Greengard knew she wanted to practice in an academic environment, because she wanted some component of her career to be research. She is intrigued by the cancer disease process, with so many incredible research opportunities to advance the field and improve treatments.

Minnesota, and sarcoma

As she completed her Hematology/Oncology Fellowship at the Children’s Hospital of Philadelphia, Dr. Greengard became more and more fascinated by solid tumors, and then by sarcomas. As many of us know all too well, so much more progress is needed to improve outcomes and decrease the toxicity of treatments for this cancer. Dr. Greengard would like to contribute to this advancement.
A lifetime resident of the Midwest except for her time in Philadelphia, Emily was happy to come to Minnesota. When she learned of the job opening, she felt it would be “perfect” for her and “a really great fit.” Offering an academic environment and the opportunity to practice with “grounded, supportive people” who have been successful in building their own practices, she expected it to be a great environment to start her career.

Working with the Red Flags

In 2012, Dr. Greengard joined with Rein in Sarcoma after spending time at the Sarcoma Corner during the annual Party in the Park event. Since that time, she has been active with the Medical Advisory Committee, a group of physicians from the University of Minnesota and Children’s Hospitals and Clinics of Minnesota. Together these doctors meet with members of the RIS team to develop materials and design programs to educate both lay people and professionals.
Missed diagnosis and delayed or inadequate treatments are still all too common with sarcoma. The Red Flags team is working to improve these odds.
When asked what is surprising about her work, Emily said: “How incredibly resilient people are.” No matter what their background, people rise to the occasion and find a way to get through the situation. She said she’s “always so amazed” at how families do.

And we thank Dr. Greengard for her energy, enthusiasm and fine contributions. We hope her practice will go well here, so she may stay in Minnesota for a long time.

By Christin Garcia

Could you ever imagine sarcoma cancer, with a fairy tale ending? University of Minnesota Professor and cancer geneticist Dr. David Largaespada is working hard to make this happen. Through creative collaboration with others at the University and supported in part by RIS, Dr. Largaespada seeks both to better understand how cancer grows in people and to find new ways to stop it. He is drawn to sarcoma in part because it affects young people, and also because it is understudied. There are “more ideas than ever” being tried against the more common cancers. Dr. Largaespada would like to try these ideas against sarcoma cancer, as well. He expects to see “exciting new research in the near future.” To learn more about these possibilities, click here.

David Largaespada received his Ph.D. in Cellular and Molecular Biology at the University of Wisconsin-Madison in 1992, then did a postdoctoral fellowship at the National Cancer Institute, and finally joined the University of Minnesota in 1996. He holds a joint appointment as Professor in the Department of Genetics, Cell Biology and Development and in the Department of Pediatrics. His cancer research has received national attention, with publication in elite scientific journals and funding support from the National Institutes of Health. Several years ago, through a confluence of happenings, Dr. Largaespada began turning his talents towards sarcoma cancer.

You may have seen headlines about Largaespada’s unique model for identifying the genetic changes that could cause cancer, titled “Sleeping Beauty” because it uses awakened genetic material that was inactive for millennia. If you wish to learn more about this work, just type “largaespada sleeping beauty” into your favorite search engine. You could read for hours! What I will tell you about this work is that it led Dr. Largaespada, ultimately, to us.

When he began using the Sleeping Beauty model, sarcomas were among the first cancers Largaespada found. He looked around the University and saw that others were working with sarcomas. He has long had an interest in pediatric cancers, and felt that sarcomas were understudied. For all these reasons, Dr. Largaespada and his lab began to consider sarcoma. Currently, they have projects underway to apply the Sleeping Beauty model to both osteosarcoma and rhabdomyosarcoma. Through this model, they seek to identify those precise genetic changes in a normal bone or muscle cell that lead to the growth and spread of cancer. Identifying these changes may allow doctors to provide more effective cancer treatments and may provide scientists with new ideas for stopping cancer.

Dr. Largaespada conducts other sarcoma research, as well. One goal is to improve the speed and precision with which potential new treatments could be tested. Largaespada’s lab is working with vectors, which can be thought of as cargo trucks that carry certain types of genetic material into cells. His graduate student Brandon Moriarity is making “a really fancy cargo truck.” If they succeed, they may be able to match up the genetic changes in a particular tumor with the drugs that will offer the best chance for a response. This information can be really important in the clinic, to allow doctors to give the most effective treatments to their patients. The more scientists learn about cancer, the more they understand that each person’s tumor develops in a unique way. The genetic changes within the tumor may be more important than the body part where it first appeared. This may require scientists and pharmaceutical companies to have “a new way of thinking” about how to develop treatments. And perhaps, it could open new possibilities for sarcoma patients.

In 2010, Dr. Largaespada and his colleague Dr. Bridget Charboneau used their RIS grant to build upon literature suggesting that certain fibroblast growth factors may be important in causing rhabdomyosarcoma. When they blocked the action of these growth factors in the lab, the cancer cells did in fact slow down. When they also blocked an insulin growth factor, as well, the cancer cells slowed down even more. Although there are not drugs available right now to achieve all this blocking in people’s bodies, Dr. Largaespada is talking with Dr. Brenda Weigel about the possibilities.

This balance, between basic science research and clinical application, is important to Dr. Largaespada. He firmly believes we need more basic information about the process of cancer development. “On the other hand,” he said, “I’m impatient, like a lot of people.” Against the more common cancers, there are “more ideas than ever before” being tried in people. In case the answer to sarcoma is “already sitting right there,” Dr. Largaespada says: “Let’s try it.”

And trying it, he is. Every other week, Dr. Largaespada meets with a group including physicians Drs. Denis Clohisy, Keith Skubitz and Brenda Weigel and scientists Drs. Logan Spector and Subbaya Subramanian, all working together to find better treatments for sarcoma cancer. At the close of our interview Largaespada said, “I would like to have emphasized the fact that we’ve organized ourselves and created this sarcoma program.” There is a “community of labs” and a collaboration among people. “I expect lots of exciting research in the near future,” he said. And we are hopeful!

Click here for more info on Dr. Largaespada’s research lab

By Christin Garcia