Social worker: Sickle cell diagnosis turned her into an advocate

She has lived her life with a disease that has disrupted thousands of lives. Now, this IU Health social worker is supporting others like her.

By IU Health Senior Journalist, TJ Banes,

Education around Sickle cell anemia didn’t come easily when Khajae Henry was younger. Born in Jamaica, she was didn’t know about her diagnosis until the age of one. She was in and out of emergency rooms.

“It wasn’t until family immigrated to America that I received adequate Sickle cell anemia education,” said Henry.

The diagnosis is characterized by a group of inherited disorders where red blood cells contort into sickle cell shapes. The cells die early leaving a shortage of red blood cells and can block the blood flow resulting in serious pain. It’s estimated 200,000 Americans are diagnosed with Sickle cell disease. Treatments can include medication, blood transfusions, and in some cases, bone marrow transplantation.

September during “Sickle Cell Awareness Month,” Henry, a social worker at Riley Hospital for Children, is sharing her personal story.

“Something unique to me is that I am a healthcare worker; I live with Sickle cell anemia,” said Henry, 24.

Henry earned both her bachelor’s and master’s degrees from IUPUI within four years. In college she served as a senator in the Bachelor of Social Work Student Association. The club helps future social workers expand their skills and make connections in the community. In her role as senator, Henry served as an advocate for justice.

At IU Health she continues to be a champion for the cause.

“Living with Sickle cell anemia as an adult can be very tumultuous. Sickle cell anemia affects the whole body and can cause a cascade of issues. Working with your healthcare provider to develop an individual treatment plan is paramount in navigating the diagnosis,” said Henry, who lives with a disease that can flare up over weather conditions or stressful situations.

Her personal experiences have created a role for her to focus on advocating and providing hope for others diagnosed with Sickle cell anemia.

“During adolescence, when sick and when a hospital visit was needed, most of my care was in the ER. The ability to build rapport with the pediatric social worker did not come frequently. Once my family did have a chance, we learned what resources were available, and how to get the care I needed,” she said.

“Advocacy as a healthcare provider means making sure patients have a comprehensive treatment plan that is unique to them.”

At IU Health, a team of hematologists and oncologists work with patients living with Sickle cell disease. “The mission is to provide excellent, personalized, lifespan comprehensive care for all patients living with Sickle cell disease,” said IU Health Dr. Andrew Ross Wickman O’Brien, director of the adult Sickle Cell Disease Program. IU Health is a member of the newly formed National Alliance of Sickle Cell Centers, an organization committed to providing support to hospitals and disease centers offering comprehensive patient care.

“We are working with other leaders in sickle cell care across the country to set best practices for sickle cell care. This includes providing not only excellent medical care, but also access to mental health services, social work, and cutting edge research,” said Dr. O’Brien. “We also see it as essential to our role to provide education for patients, families, medical professionals, and communities as a whole as well as advocate for increased funding for sickle cell disease care and research.”

For Henry, feeling well means finding joy through traveling, learning to crochet, and spending time with family.

“When in pain or prolonged crisis it can be easy to forget how rewarding life is, but I want those living with Sickle cell anemia to realize life can be fulfilling and there’s hope on the other side.”

West Emergency department works to expand sickle cell care

September is Sickle Cell Awareness Month and the IU Health West Emergency department is working to expand both clinical care and education to combat the disease.

By Charlotte Stefanski, marketing associate,

September is National Sickle Cell Awareness Month—a blood disorder that impacts about 100,000 Americans.

As IU Health West Hospital has continued to treat patients with sickle cell disease—and has also seen an increase in patients seeking care for it—the emergency department is looking to expand its care offerings and educate team members.

What is sickle cell disease?

While sickle cell disease impacts thousands here in the United States, not much is known about the disease—which has limited treatment options and no cure.

So, what is sickle cell?

“Sickle cell disease is a genetic disease that affects how red blood cells are shaped as they travel through the blood vessels of the body,” said Dr. Karen Crevier, medical director of West’s Emergency department (ED). “This causes complications related to how well the red blood cells can carry oxygen; as well as issues with blood clots, like strokes and pulmonary emboli.”

The most common issue though—and what typically sends those with sickle cell to the ED—is pain crises. During a crisis, red blood cells make microscopic clots in the bones and can cause severe pain, Dr. Crevier explains. 

Dr. Karen Crevier
Dr. Karen Crevier

While anyone can have sickle cell, the disease primarily impacts Black and African American populations. According to the Centers for Disease Control and Prevention (CDC), it occurs in about one in 365 Black or African American births and one in every 16,300 Hispanic American births.

A noticeable increase

As the west side of Indianapolis has experienced rapid growth in the last few years, providers and team members working in the ED have noticed an increase in patients with sickle cell.

Leslie Gibbs, the head advanced practice provider of the emergency room and observation unit at West, said there are plenty of reasons for the increase.

Along with the population growth, Gibbs adds that there’s a critical need for treatment options for those with the disease, especially on the west side of Indianapolis. While pediatric patients with sickle cell can receive robust treatment options with Riley Children’s Health specialists, they’re now looking for adult services as they age out of pediatric care.

“Because of all that, we’ve really identified our population with sickle cell as being one that needs more attention and a more structured approach,” Gibbs said.

When patients with sickle cell come to the ED, they’re typically seeking pain management for a crisis. The first thing team members work on is getting their pain under control, Gibbs said.

But the disease also has other serious consequences that can impact the heart, lungs and more. Patients may experience mini strokes in the brain or kidney infarction. So, as patients come in to treat pain, Gibbs and her team also run blood work or take x-rays to ensure there isn’t something more serious.

“These are patients—that often from birth—have extreme pain and microvascular damage in many parts of their body that we don’t even fully understand yet, because it’s not a very well researched disease,” Gibbs said.

Leslie Gibbs
Leslie Gibbs, head advanced practice provider of the emergency department and observation unit

Expanding services and education

Due to the complications surrounding sickle cell disease, IU Health West is looking to standardize the care of patients with sickle cell in the ED and the department’s observation unit.

Both Crevier and Gibbs said treating sickle cell in the ED can be a long and stressful process, for both patients and team members. Managing a pain crisis can be difficult to do in a short ED visit, but patients typically want to avoid being admitted to the hospital or transferred downtown, as that requires an extended stay.

“We are working on processes to get pain better controlled earlier on in the ED stay and facilitate better communication with the outpatient physicians that are managing these patients to hopefully decrease the need for emergent care,” Crevier said.

That’s where West’s six-room observation unit comes in handy. Since it opened three years ago, the unit has served as a comfortable, quiet and short-stay place for those experiencing a pain crisis as team members work on a plan for treatment.

The unit has seen success with that process in the last few years, and now, the ED team looks to develop it into the home for patients with sickle cell.

“When a patient comes into the ED experiencing a pain crisis due to sickle cell, they’ll be worked up to make sure none of those other scary things are happening, but they’re also going to be moved pretty quickly into our observation space,” Gibbs said. “That way, we can give them more time and a more aggressive treatment to help get on top of their pain.”

These patients will also have access to other types of care and services that aren’t in the ED. They’ll be connected with a social worker, who can speak with them about barriers to care, what their resources are like, and also connect them to community groups that can assist in different ways.

West is also trialing a new telehealth component that will connect patients to resources downtown via an iPad.

“This will help get these patients plugged in and get them what they need to manage these crises better, and hopefully prevent the crises from having in the first place,” Gibbs said. “They don’t have to keep interrupting their lives to come into the hospital.”

As patients with sickle cell come to the ED, team members are also looking for easier ways for them to manage their pain. The process can include a fair amount of medication, Gibbs explained, and she’s looking to implement a medication delivery system that the patient can control.

The patient would simply push a button when in severe pain, and a small dose of IV pain medicine would be distributed. This would help patients receive relief during their stay a lot more frequently, which can be a big help for team members if the unit is short-staffed.

Currently, nurses are being trained on the equipment, and along with the telehealth aspect, Gibbs hopes to see both running in the next few months. In the future, she hopes the observation unit can expand to eight beds to accommodate more patients.

The psychosocial impact

Along with the physical side of sickle cell—a painful and chronic disease—there are plenty of psychosocial impacts, including poverty, food insecurity, barriers to healthcare and education, less than ideal housing and more.

“There’s a lot of challenges that are really heaped on top of these patients that are already dealing with a terrible disease,” Gibbs said.

As a social worker stationed in West’s emergency department, Leslie Sheeler’s days are often unpredictable. She could be helping a patient find a primary care doctor, a prescription at a lower price or assisted living. She’s also seen plenty of abuse cases too.

When she first started at West nine years ago, Sheeler didn’t have any patients with sickle cell, but around 2018, that changed. And once COVID-19 became manageable, Dr. Crevier reached out to Sheeler as the ED began its plan to expand sickle cell care.

“I was going to try to help more of their psychosocial issues; Are they seeing their doctor? Are they taking their medication? Are they having issues with transportation or work or food pantries—whatever the case may be,” Sheeler explained.

However, Sheeler admits she didn’t know much about the disease. She reached out to the Martin Center, which has been a resource for sickle cell in the community for more than 40 years. It heavily focuses on education, working with medical professionals, caregivers and more.

Since meeting with the organization, Sheeler has tried different ways to help educate her fellow team members, including bringing the Martin Center to West every Thursday this September. She’s also spoken with team members one-on-one, posted flyers in breakrooms and restrooms and shared links to informational sites.

“We have a wide range of people and roles working in the ED and everybody learns differently,” Sheeler said.

West Emergency Social Workers
Social workers at IU Health West Hospital, pictured from left: Leslie Sheeler, Paula Pettis-Garrett and Kristi Dinn

Sheeler, Gibbs and Crevier all agree that education on sickle cell disease is crucial for team members, as it helps break stereotypes and stigma surrounding it.

When any patient comes into any emergency department seeking pain treatment, there can often be an implicit bias—an unconscious association, belief, or attitude toward any social group. Further education on sickle cell disease can help prevent this line of thinking and create better patient outcomes.

Anytime there is a shift in healthcare practice, education is needed,” Gibbs said. “We are working hard to support our team’s growth in knowledge and skills to better support the complex medical and psychosocial needs of a population that has faced historic racism and underfunded research.”

Sheeler adds that the disease impacts every aspect of life; if someone with sickle cell is in pain, they can’t go to work. If they can’t go to work, they can’t pay their bills, buy food or put gas in their car. If they don’t have gas, they can’t get to the hospital. And if they manage to get to the hospital, that can take time away from work or require childcare.

“I would really like for patients to feel comfortable when they come to us, to know that our staff is aware of sickle cell disease and that they know medically how to help them. We’re sensitive to the stress that they’re going through in their everyday life,” Sheeler said. “I want them to feel like they can come here and ask for help, get what they need and feel supported.”

Keeping up with new resources

While medication is used to mitigate the symptoms of sickle cell disease, Dr. Crevier adds that a multidisciplinary approach to the disease is essential.

Connecting patients to sickle cell education and other community resources only helps their outcome.

“When managed well, these patients can live fulfilling lives, but this takes a multidisciplinary approach; patients need to have good follow-up care and ways to get to their appointments,” Dr. Crevier said. “Whatever we can do to decrease barriers to these resources will help improve their lives.”

‘See your doctor’: Patient recounts gynecologic cancer journey

Marilyn Hoffman was first diagnosed with gynecologic cancer in 2020. She would fight cancer with several teams at IU Health, including North, University and Methodist hospitals.

By Charlotte Stefanski, marketing associate,

For many, September signifies the beginning fall, with cooler weather, football and bonfires.

For Marilyn Hoffman, the month marks the two-year anniversary of her gynecologic cancer diagnosis.

September is Gynecologic Cancer Awareness Month; a type of cancer that includes malignancies of the uterus, cervix, vulva, vagina and fallopian tubes. Endometrial cancer, which involves the innermost lining of the uterus, is the fourth most common cancer in women in the United States.

Back in 2020, just a few months after retiring and moving back to Indiana, Hoffman had scheduled her annual exam with her gynecologist.

During the exam, she remembered him saying, “Oh, we better take a look at this,” followed by, “That doesn’t look good.”

She was sent to an IU Health obstetrics (OB) oncologist, Dr. Paul Mayor, who diagnosed Hoffman with vulvar cancer, more specifically, cancer of the labia. Hoffman knew her family had a history with breast and skin cancers, but nothing like this.

“Shock and awe are the right words. I was scared,” Hoffman said. “What’s the prognosis? What’s next?”

From there, Hoffman would begin a two-year-long journey of care with several teams at IU Health, including North, University and Methodist hospitals and the Simon Cancer Center downtown.

At first, she underwent lymph node surgery in October 2020. Four nodes were positive for cancer on the left side, which is the same side where the labia cancer was present. Later that November, she had a chemotherapy port placed and was scheduled for 32 rounds of radiation as well.

Hoffman was treated with cisplatin in small doses, and she remembered having a small amount of side effects, including losing her hair. But by week five of radiation, she was in serious pain. Those treatments were completed in January, and she’d have to wait until March for her next PET (positron emission tomography) scan to detect cancer cells.

There were questionable spots on her scan, so Dr. Mayor did another biopsy. It appeared that the chemotherapy and radiation didn’t work; Hoffman’s cancer was back.

“I then had a radical lobectomy in June of 2021, where they took away six of the major body parts,” Hoffman explained. “I was able to continue to urinate and have bowel movements normally, but there were other parts that were taken away.”

Hoffman’s care team then worked with a plastic surgeon at University Hospital to complete the procedure. But that August, some of her wounds opened back up. She then started comprehensive wound care at IU Health Methodist. Hoffman’s twin sister, Carolyn, drove her every day to her 61 hyperbaric oxygen therapy treatments at the hospital.

“That was about a three-hour process. So, she got to enjoy Methodist lunch every day,” Hoffman joked.

Marilyn Hoffman
Marilyn Hoffman (pictured center) alongside her sister and brother-in-law

However, another PET scan that November showed that her cancer had come back. Dr. Mayor had moved on to another practice, and Hoffman was introduced to Dr. Lisa Landrum, who had just come to Indiana that September to lead the Gynecology- Oncology team as the division director at IU School of Medicine.  

Currently, she sees patients at the IU Health Joe & Shelly Schwarz Cancer Center in Carmel for cancers involving the uterus, cervix, ovaries, fallopian tubes, vulva and vagina, as well as gestational trophoblastic neoplasia.    

Dr. Landrum’s practice includes both surgery and prescribing chemotherapy, and she works closely with providers in radiation oncology when the treatment is appropriate.

“She was very proactive. She did another surgery, just to make sure what was shown on the PET scan was cancer, and she did come back and say it was cancer,” Hoffman said. “At that point, she recommended a total pelvic exenteration.”

The surgery would include removing 13 more organs, and Hoffman would need to use an ostomy bag. It was a big decision, and Hoffman and her care team decided to wait until after the holidays so she could spend time with her family and prepare herself.

“In Marilyn’s case, the only opportunity for curative treatment was a very extensive surgery,” Dr. Landrum explained. “We discussed the lifelong changes that this surgery would have on her, but she understood this was her only hope for cure.”

Dr. Lisa Landrum
Dr. Lisa Landrum

Since the procedure, Hoffman has been cancer free. She still visits the Schwarz Cancer Center every three months for her PET scans and for any check-ups with Dr. Landrum.

She doesn’t know where she would be without family. All four of her sisters are in the area and have helped take care of her, and she currently lives with her twin, Carolyn, and her husband.

“When things were getting pretty tough, I couldn’t sleep or eat. My nieces and nephews would send pictures of their beautiful babies and told me to get better,” Hoffman said. “I just feel for people that aren’t surrounded by family like that, because I don’t know how they could get through it.”

While Hoffman has had a long journey with IU Health, she’s extremely thankful for all of her providers, surgeons, nurses and team members. During some of the hardest moments of being treated for cancer during a pandemic, she remembered those working the front desk at Schwarz Cancer Center.

Due to COVID-19, she had to go in alone, but those at the front desk were always warm, welcoming and remembered her name. She also thanks Dr. Landrum, who was not only a physician, but an advocate.

“She was very attentive, very proactive. I know all doctors probably do this, but it was just a special experience with her. Her personality is just very calming—she just really sets you at ease and you have her undivided attention the whole time you’re with her,” Hoffman says.

When it comes to advice, both Hoffman and Dr. Landrum encourage all women to continue getting their annual exams to detect early signs of gynecologic cancers.

“It’s very important for women to be attuned to changes in their body. Postmenopausal bleeding is not normal and should be immediately evaluated by your primary OB/GYN. Please get your annual exams with pap tests to evaluate for precancerous changes in the cervix,” Dr. Landrum advised. “I would also encourage vaccination with human papillomavirus vaccine to reduce risk of cervical, vaginal, and vulvar cancers as well as smoking cessation. Women should also pay attention to discomfort or pain in the abdomen and pelvis that doesn’t resolve, or changes in bowel or bladder function.”

“Just make sure you go see your doctor, and don’t wait. There’s always this fear of the unknown that sets us all back,” Hoffman said. “But you have to face it and go do it. Don’t be afraid.”

Living Donors Celebrated for Selfless Acts of Compassion

By IU Health Senior Journalist, TJ Banes,

They’ve been called, “Heroes,” “Angels,” and “Warriors.” They are the living organ donors who saved a life. This week, IU Health celebrated those champions who offered the gift of life through liver and kidney donations.

In a special event, people who donated a life-saving organ in the past four years, were treated to a reception and Indians Baseball game. The event is typically held every two years, honoring those who were organ donors during that timeframe. The 2020 event was postponed due to the pandemic, so this year’s event was one of the largest in its history.

Since the first appreciation event in 2010, hundreds of living donors have been celebrated by IU Health. But for their recipients, these donors are celebrated every day.

Karen Angellotti beamed as her husband, Mark, talked about donating his kidney to her in January of 2021. She had been on dialysis for over a year leading up to the transplant. The couple married in 2001 and Mark said: “When you have a leading nephrologist tell you the downside of dialysis, you know what you have to do.”

Johanna Kikendall attended the event with her husband, Steve Kikendall, her brother-in-law, Jack Kikendall, and his wife, Sherrie Kikendall. Johanna was the living kidney donor for Jack Kikendall.

“He’s not just my brother-in-law, he’s my husband’s best friend and if something happened to him, my husband would never be the same,” she said.

IU Health Dr. Jonathan Fridell, chief of abdominal transplant and surgical director of the pancreas transplant program, told the guests that this month, the United States marked a historical milestone achieving one million transplants. “That was made possible by each of you in this room,” he said.

According to Donate Life Indiana, more than 100,000 men, women and children nationally are waiting at any given moment for a lifesaving organ transplant. More than 1,000 of those waiting are Hoosiers. Last year 4.2 million Hoosiers signed up to be organ donors; 276 organ donors saved the lives of others needing lifesaving transplants, 949 lifesaving organs were transplanted to recipients.

At IU Health many recipients receive kidney and liver transplants from living donors. As of August 2022, surgeons at IU Health performed 162 kidney transplants (158 adult and four pediatric) this year.

Living kidney donors help give renewed health to people experiencing kidney failure. Living donors reduce or eliminate the need for patients to start dialysis and a healthy kidney from a living donor can function better and last longer than a kidney from a deceased donor.

A living kidney donor isn’t necessarily related to the recipient. Compatibility is based on blood type and tissue typing. Age and size are also taken into consideration. If a healthy donor is incompatible with the intended recipient, the donor may opt to be part of paired donation. Also known as “donor swap” recipient /donor pairs are matched according to compatibility. Over the years, IU Health’s kidney transplant team has performed a number of paired donations. Some chains have included multiple people.

Chad Hoefle donated his kidney to a stranger in November of 2021. He was joined at the reception by his wife Melanie Hoefle, mother, Mary Bartkowiak, and niece Jordyn Kamp.

In July 2020 IU Health restarted the living liver transplantation program. Since then, the transplant team has performed 22 living donor transplants.

Carrie Rhodes was eager to see her surgeon, Dr. Chandrashekhar Kubal. As she greeted the doctor who supported her through one of the biggest decisions of her life, Rhodes’ husband took a photo of the two. Rhodes was the first non-directed living liver donor in August of 2020. She and her husband have since become acquainted with her recipient and his wife.

“It was a faith-based decision. I felt Jesus blessed my life and I felt called to help someone else,” said Rhodes.

As of August 2022, IU Health performed 100 liver transplants this year, (95 adult and five pediatric). Some of those transplants were a result of living donation. Donate Life America reports there are 14,000 people in the United States on the waiting list at any given time for a liver transplant. The number of patients waiting far surpasses the number of deceased donors. Many patients spend years waiting for a liver donor. Living donors reduce that wait time. An organ from a living donor can function better and last longer than one from a deceased donor because it is healthy. Like kidney donation, liver donation is done by working with a team of IU Health transplant experts including surgeons, donor coordinators, social workers, dietitians, pharmacists, and financial coordinators.

Living donors undergo an initial screening, multiple tests and evaluations. The transplant involves removing a portion of the donor’s liver and then using it to replace the diseased liver in the recipient. The liver regenerates and returns to full function within a month. Both kidney and liver donors are typically discharged from the hospital within a few days.

“It’s a highlight seeing you all here and knowing you are doing so well,” said IU Health Dr. Asif Sharfuddin, who serves as medical director of kidney and pancreas transplantation.

As he asked each living donor to stand, the room erupted in applause.

“If you are standing next to a living donor, thank them,” said Dr. Sharfuddin.

Watch for a video next week on IU Health Facebook to learn more about this special event.

‘Pierre Michelle’ has saved the day for this patient more than once

<p><em><strong>If it weren’t for one special shaggy dog, LaDonna Cummins may not be able to tell her remarkable story of surviving the highs and lows of diabetes.</strong></em><br></p>
<p><em>By IU Health Senior Journalist TJ Banes, </em><a href=””></a></p>
<p>There was the time she was spared from driving into a bridge, and then there was the time she was rescued after her car had a flat on a cold and snowy night. </p>
<p>LaDonna Cummins looks back at those scary times and is thankful for her faithful companion, affectionately named, “Pierre Michelle.” The 7-year-old Labradoodle became Cummins’ service dog at the age of 5 months.</p>
<p>Since the age of 17, Cummins has dealt with the highs and lows of brittle diabetes, a type of diabetes that is difficult to manage and can disrupt everyday life. It causes extreme swings in blood sugar. For Cummins, some of those changes were so quick and severe that she feared for her life. </p>
<p>In 2014, she learned about Diabetic Alert Dogs of America. Based in Las Vegas, Nev. the program specially trains dogs to alert diabetic handlers in advance of low (hypoglycemia) or high (hyperglycemia) blood sugar events before they become dangerous. A Diabetic Alert Dog’s early detection allows the handler to take the proper steps to return their blood sugar to a normal healthy range.</p>
<p>The dogs attend an intensive 12-week course and must pass an evaluation. The training includes basic obedience, public access exposure and scent detection. </p>
<p>“I got to Vegas and saw 20 puppies. I was told not to play with them so I sat still,” said Cummins. One dog came and sat at her feet and never moved. At one point, when Cummins’ blood sugar dropped to 62, the dog began licking Cummins’ feet. </p>
<p>“That was it. She chose me,” said Cummins, who named the Labradoodle, “Pierre Michelle.” As part of the scent training, Cummins mailed several frozen cotton balls saturated with her saliva to the Nevada training center. Each cotton ball had a different blood sugar level and Pierre Michelle was trained to detect the high and low glucose levels. </p>
<p>“She can fetch an orange juice from the pantry and open the can with her teeth when I get too low,” said Cummins, who turns 60 on October 20th. In one of the scariest episodes, Cummins was driving with Pierre Michelle in the back seat. As Cummins’ blood sugar levels dropped, Pierre Michelle jumped into the front seat and began to paw at her owner to keep her alert. When an ambulance arrived, the 70-pound dog would not allow anyone near Cummins until her owner told her to sit. Before she got the service dog, Cummins said there was one scary accident that landed her car under a gas truck. </p>
<p>Not only is Pierre Michelle a friend to Cummins, but she has grown to love an extended family. Cummins married her husband, Kerry four years ago. Together, they have a blended family of six children, 14 grandchildren, and four great grandchildren. </p>
<p>Not long after Cummins acquired Pierre Michelle, she was listed for a pancreas transplant. In March 2015, in the care of IU Health’s <a href=”″>Dr. Jonathan Fridell</a>, she received a new pancreas. Pierre Michelle was again trained to detect the sugar levels of her owner post-transplant. Cummins enjoyed improved health until two years later when she was diagnosed for the second time with breast cancer. Ten years had passed since her first diagnosis. In the care of <a href=”″>Dr. Bryan Schneider</a> she underwent radiation. During one of her treatments, Pierre Michelle jumped onboard the bed as Cummins was wheeled down the hospital hall. </p>
<p>It was during her second cancer diagnosis that Cummins was introduced to IU Health’s Cancer Resource Center and CompleteLife Program. Located on the first floor of Simon Cancer Center the programs offer information and education to help cancer patients navigate their cancer journey. Patients also have access to support groups and complimentary yoga, music, art, and massage therapies. </p>
<p>Cummins was given some art materials to help her pass the time in the hospital.</p>
<p>“I found it quiet and peaceful and encouraging. It got me to think of others and I made scarves to donate to other patients,” she said. During a recent checkup she returned to the Cancer Resource Center in hopes of volunteering her time.</p>
<p>And of course she’ll bring Pierre Michelle along on her return hospital visits. </p>
<p>“We’ve been through quite a lot together,” said Cummins. Her faithful companion has accompanied her several times on a plane, aboard a boat on the Florida coast, and always in the car. </p>
<p>“Not only has she gotten me through my share of hospital visits, she too, has had hip replacements and ACL surgery. We’re in it together.” </p>

Technology expands reach, impact of pediatric behavioral health practice

The last few years have been tough on virtually everyone’s mental health, but children seem to have especially suffered. Caregivers report that the need for pediatric mental health services skyrocketed during the pandemic, and demand continues to climb.

In its effort to meet this demand, Indiana University Health Southern Indiana Physicians (SIP) Pediatric Behavioral Health Unit (SBU) is leveraging grants, including money from IU Health Foundation. This funding allows clinicians to tap into a resource that not only responds to needs but also creates an environment that’s familiar to kids: technology.

Statistics for southern Indiana make the need for pediatric behavioral health services obvious. In the 10-county region served by SIP, referrals for SBU’s services jumped from 1,800 in 2019 to 7,800 in 2020. In 2021, roughly 10,500 patients were seen in pediatric offices for behavioral health reasons.

SBU Manager Mary Balle says these visits include children and adolescents with a wide range of mental health challenges, including anxiety, depression and substance use. In some children, COVID-19 protocols provoked isolation and obsessive compulsive disorder tendencies—constantly wanting to wash their hands, for example—while news about mass shootings made others afraid to go to school. Now monkeypox is upsetting kids. Violent thoughts and aggression are increasing.

“These kids are carrying the weight of the world on their shoulders,” said Balle.

Mary Balle, Indiana University Health Southern Indiana Physicians Pediatric Behavioral Health Unit manager

And if that’s not enough, Balle noted that most of these children, along with their parents, don’t even realize they are suffering from mental health challenges.

Technology, though, is helping SBU detect these issues and connect patients to an appropriate provider in a timely manner. To do this, SBU uses pre-screening surveys that can be accessed on a computer, tablet or even smart phone.

Because kids are so accustomed to communicating through devices, they often answer questions more candidly through a device than face-to-face, Balle said. Through such screening, caregivers have helped kids on both ends of the spectrum—from early signs of depression to those who have overdosed, were about to kill themselves or were experiencing serious trauma. To accommodate more screenings, SBU is seeking additional funds for the purchase of more iPads.

“Technology helps us catch them earlier and do interventions,” Balle said.

Opportunities go beyond screenings, she added. SBU also received a grant to provide tele-med services to area school systems, serving kids facing barriers to care such as distance or time demands. Another grant is allowing SBU to set up virtual group counseling sessions.

The SIP caregivers support the program themselves, Balle noted. The SIP pediatricians diverted clinic staff to the behavioral health program, and they have dedicated three offices and another entire floor in their building to behavioral health services. In addition, practice physicians and nurses have pursued additional training in order to be well-informed about their patients’ mental health needs.

With more funds, Balle said, SBU would add even more technology, as well as staff members to follow up on care needs.

The goal in all of this? Catch children’s mental health challenges early, connect them to care and help them see through the darkness. “When you show a child the beauty of the world, they’re more likely to be optimistic,” Balle said.

If you’d like to support advancements SBU’s advancements in telehealth, contact IU Health Foundation Senior Development Officer Emily Trinkle at 812.345.5625.

The (virtual) reality of chemotherapy

Chemotherapy infusions can last anywhere from five minutes to eight or more hours –a long time to sit still during what can be an uncomfortable treatment session.

To help relieve some of that distress, the Indiana University Health Joe and Shelly Schwarz Cancer Center at IU Health North Hospital is exploring the usage of virtual reality (VR) as a distraction intervention for patients undergoing chemotherapy and other infusion treatments. VR devices allow patients to “visit” faraway places, play games or watch television shows, movies and concerts.

Support from IU Health Foundation donors helped the center purchase four pairs of VR sets, and patients began testing the devices just last month.

“With VR, our patients can escape the sterile chemotherapy room for anywhere in the world,” said Ann Bredensteiner, manager of Integrative Health and Volunteers at IU Health North Hospital, and brainchild behind the application for VR funding. “Maybe it’s for the calming sounds of the rainforest, a sunny beach or lush green landscape—wherever they choose, it helps distract them and pass the time.”

Ann Bredensteiner, manager of Integrative Health and Volunteers at IU Health North Hospital

Research shows that patients who have access to VR during chemo sessions have an altered perception of time and a reduction in stress and anxiety.

“The opportunities for this technology in soothing our patients are endless,” said Bredensteiner.

Originally planned to launch in 2020, the introduction of VR was derailed by pandemic hygiene policies and visitor limitations, including the volunteers who were going to teach patients how to use the headsets.

Now, two years later, Bredensteiner and her team are excited to see this technology in action.

With additional funding, they hope to secure a VR set for every chemo bay at Schwarz Cancer Center. To reach this goal, the center needs 18 additional headsets. Each cost roughly $400.

Donor generosity could also help fund a full-time technology team member who can manage VR and be on hand to assist every patient during infusion treatments.

“With donor support, we will be able to provide even more comfort to every patient in our infusion bays,” said Bredensteiner. “The more support we have, the more patients we can help momentarily escape the reality of chemotherapy and their diagnosis.”

If you’d like to support advancements in technology at the Joe and Shelly Schwarz Cancer Center at IU Health North Hospital, contact IU Health Foundation Senior Development Officer Leigh Ann Erickson at 317.373.0142.

Patient: ‘ICU Survivorship Program helps in ways I didn’t think possible’

Over the past two years the number of patients treated in ICU grew exponentially. Many cases were similar; many needs very different. One thing was clear: They needed continued care after they left the hospital. One program answers that call.

By IU Health Senior Journalist, TJ Banes,

Even on his strongest days, Richard “Rick” Letherberry’s voice is weak. He often walks with the assistance of a cane.

One year ago this month, Letherberry was diagnosed with COVID-19 pneumonia that attacked his lungs. He spent three months in the hospital. At one point he was in a coma and also on a ventilator for more than a month.

His wife, Caressa “Angel” Letherberry recalls the tragic day that his family was summoned to say their “good-byes.” At 38, Letherberry’s life and the life of his family changed forever.

As he continued to fight back, the virus took a brutal toll. He suffered sepsis, intense pain, difficulty breathing, walking, and talking. He experienced both cognitive and emotional challenges. He needs help with the things he once did with ease – like putting on his shoes and socks.

This man, a resident of Plainfield, Ind. is a father of three children who earns his living as a truck driver. He has been married to his wife for 11 years and has enjoyed serving as a youth pastor and minister of music.

But COVID took its toll.

“He had a beautiful singing voice but COVID stole that from us,” said his wife. And there’s more. With bilateral drop foot, he doesn’t walk the same. Letherberry used to love to play basketball. “Now he walks like an 80-year-old man and can’t play sports,” said Angel Letherberry.

Originally from Pensacola, Fla., Rick Letherberry says he’s heartbroken that he will never walk the beach again.

After a year off work, he recently returned to truck driving but it hasn’t been easy. He gets tired and continues to fight the long-term effects of the pneumonia and COVID-19. To help fight those effects, Letherberry is part of the IU Health ICU Survivor Center. Letherberry has been in the care of Dr. Sikander Khan and Dr. Conan Chittick.

“Dr. Khan is referring him out to all these specialists – occupational and physical therapy and also psychiatric therapy,” said his wife. Dr. Khan specializes in pulmonary critical care and oversaw the majority of COVID-19 patients treated at IU Health Methodist Hospital. After their discharge many patients voiced concerns about their quality of life – a majority experiencing fatigue and depression.

“We took part in a six-month research study on the effects of COVID and mental health,” said Angel Letherberry. Through the ICU Survivor Center, patients like Letherberry receive follow-up care and support. That support focuses on offering multi-disciplinary care that can address various aspects of the patient’s needs such as sleeping issues, anxiety, and overall physical health. The goal is to maximize the recovery for patients, reduce unnecessary hospital readmissions, increase patient satisfaction and decrease mortality.

“The ICU Survivorship Program helps in ways I didn’t think possible. It’s not like a regular doctor visit where you tell them what’s going on and they give you medicine and that’s that,” said Letherberry. “It’s like a one-stop shop. I went in expecting to see a doctor and met a nurse, social worker, and a chaplain. I’ve never felt so cared for by a doctor in my life.”

The ICU Survivorship Program also operates with a pulmonologist, nurse practitioner, nurse navigator, pharmacist, and a mindfulness trainer to create individualized care plans for patients. The team collaborates closely with therapy teams and makes referrals to the IU Health Center of Life for Thoracic Transplant as needed. Last year, the team saw 59 patients, and had more than 600 referrals.

“I hope the program continues to grow and reach more patients,” said Angel Letherberry. “I wish I’d known about it when he was in ICU but I was so focused on him not dying and I was just thinking about the future and what to expect. I’m thankful he’s alive and we have this support”

Patient empowered by small steps; Gives team, family members hope

<p><em><strong>He’s 24 and has been in the hospital for months – part of that time spent in a coma. Now, Daniel Preuss is communicating in ways that at one time seemed impossible.</strong></em><br></p>
<p><em>By IU Health Senior Journalist, TJ Banes, </em><a href=””></a></p>
<p>It’s been said that, “Music is a language that doesn’t speak in particular words. It speaks in emotions.” On a recent Friday, in a room at IU Health University Hospital’s Progressive Care Unit there was both music and a whole lot of emotion. For many in the room, it was nothing short of a miracle. </p>
<p>Daniel Preuss came to IU Health to be treated for lymphoma. Days turned into months. He was in a coma and intubated. As he began to attempt to communicate with his caregivers, there were challenges – not only with his speech but with his sight and hearing. It was difficult for him to verbalize his needs and equally difficult for team members to tell him about his condition and care. </p>
<p>After lots of observation and consultations physical therapists, nurses, occupational and speech therapists, collaborated on a plan. They learned that Preuss had both hearing and sight impairments that occurred after he came to the hospital for treatment. </p>
<p>At first they thought the cause was from his disease impacting his central nervous system. Then they thought it may have been caused by his chemotherapy regime. Because the acute loss was so new, Preuss did not know Braille. Team members Elizabeth Dimick, an occupational therapist, Jamie Pulliza, manager of adult speech language pathology, Stephanie Roberts, speech pathologist, <a href=”″>Dr. Laura Prince</a>, who specializes in physical medicine and rehabilitation, Christa Kaeser, physical therapist, Megan O’Brien, speech pathologist, and nurse Karlee Guerrero began experimenting with ways to communicate with Preuss. They also consulted with speech language pathology colleagues who specialize in neurologic deficits, Andrea Schaeff and Jill Stewart. </p>
<p>They started with hand squeezes – one squeeze meant, “Yes,” two squeezes meant, “No.” As Preuss’ condition began to improve he showed determination to communicate in full sentences. They wrote letters on his palm but soon learned they needed to “write” faster to keep up with his questions. They eventually began bringing a letter board to Preuss’ room where they could trace the shapes with is finger. </p>
<p>He adapted quickly and began asking more and more questions. His confidence increased as he began to recognize some of his team members by their touch. </p>
<p>Team members say he developed a special trust with Guerrero and asked for her when she wasn’t in the room. The two developed a special handshake so Preuss knew it was his nurse when she walked in the room. </p>
<p>“I have put my heart and soul into him for the last month,” said Guerrero, who has been with IU Health for two years. Close to her patient’s age, Guerrero said it was important to her to make time to hang out with Preuss and get to know him. They talked about things outside the hospital. She learned he is the father to four children, one is named after his favorite car, a 1969 “Chevelle;” he proposed to his fiancé while he was in the hospital; he works as a mechanic and is a percussionist who loves rock and country music. </p>
<p>That interest in music added another layer to Pruess’ healing recently. </p>
<figure><img src=”{asset:2884235:url||}” data-image=”2884235″ style=”opacity: 1;”></figure>
<p>IU Health music therapist Emily Caudill began working with Preuss first to assess what he could feel and what he could hear. Using an instrument called a “Pentatonic Bass Metallophone,” similar to an xylophone, Caudill placed a mallet in Preuess’ right hand. She then guided him hand-over-hand as he struck the notes with minimal assistance.</p>
<p>Preuss’ mother witnessed the initial music session and noticed a change in Preuess’ expression and emotion. “He seemed to relax and smiled as he realized he was recognizing the sounds of the music,” said Caudill. Preuss had at times reported a ringing in his ear. Caudill, who was treated with ototoxic chemotherapy for ovarian cancer in 2012, also experiences ringing in her ears. She knew to watch for signs of agitation to ensure the music did not exacerbate the ringing.</p>
<p>But this was different. </p>
<p>“He verbalized a response after playing each note and reported hearing every single note of the C major scale,” said Caudill. “My personal experience is that the brain can sometimes compensate for hearing loss by producing high-frequency ringing in the ear. This is called tinnitus,” said Caudill. When she learned Preuss was a percussionist, Caudill chose instruments that might be familiar to him. One of those instruments was a “cabasa.” When she spelled the word, Preuss nodded and acknowledged that he understood. </p>
<p>Music therapy is part of IU Health’s CompleteLife Program that attends to the whole person – mind, body, and soul. In addition to music, patients can receive complimentary, yoga, art, and massage therapy. </p>
<p>When Caudill realized that Preuss did have some degree of residual hearing she said one of the goals was to use the sounds and instruments to promote a sense of empowerment and autonomy in a situation where he had limited control over what was happening to his body.</p>
<p> As the music therapy continued, Caudill played a series of notes and Preuss accurately replicated the series. As his inflection changed, Preuss indicated that he could hear the low frequency sounds. In all, Caudill said Preuss responded to three of five bass notes and all eight notes of the C major scale, beginning with middle C. </p>
<p>When his fingers were traced on the letters to ask how he felt. He responded: “Alright.” Then he smiled and eagerly pursued the music therapy. </p>
<p>It wasn’t just Preuss’ facial expressions that changed during the session. The room was filled with his caregivers. As Preuss prepared for discharge to rehabilitation, the team planned co-treatment with music, physical and occupational therapy. </p>
<p>Caudill provided opportunities for Preuss to continue playing the instrument as he worked toward his physical therapy goals – sitting and then standing. Physical Therapist Sydney Rusboldt was joined by nursing student, Maria Escobar, along with occupational therapist Dimick, and nurse Guerrero as they carefully repositioned Preuss. The team approach was to include the music to help him relax, manage his pain, and anxiety.</p>
<p>There was cheering. There were tears. </p>
<p>“I see a lot of cancer patients but I don’t see a lot like Daniel,” said Guerrero. “He is one of the most motivated people I know. The first thing he asks every morning is, ‘when is therapy?’” </p>

She heard the words ‘ovarian cancer’ on her 60th birthday

<p><em><strong>About 19,880 women will receive a diagnosis of ovarian cancer. Stephanie Walker was one of those women.</strong></em><br></p>
<p><em>By IU Health Senior Journalist, TJ Banes, </em><a href=””></a></p>
<p>In the early stages, many women have no symptoms at all. Stephanie Walker was wise. She listened to her body and became suspicious when she was bloated and uncomfortable. She first went to the emergency room and then followed up with her gynecologist. That was in November of 2021. </p>
<p>On November 4, Walker’s 60th birthday, a blood test – CA-125 – indicated she has ovarian cancer. This month is Ovarian Cancer Awareness Month, a time to educate women about the signs, symptoms, and treatment for ovarian cancer, </p>
<p>The American Cancer Society reports that about half the women diagnosed with ovarian cancer are 63 years or older. It is more common in white women than African American Women. There is no way to prevent most ovarian cancers but there are things that women can do to lower their risks of the most common type of ovarian cancer, epithelial ovarian cancer. Those things include maintaining a healthy weight and avoiding hormone replacement therapy after menopause. Also suggested by the American Cancer Society are using contraceptives and tubal ligation and hysterectomy. If there is a family history of ovarian cancer, women may consider genetic counseling or testing. Overall, it is suggested that women talk to their physician if they have risks or concerns. </p>
<p>For Walker, the diagnosis came as a surprise. She has no family history, has enjoyed excellent health most of her life, and has maintained an active lifestyle. </p>
<p>“Just a few weeks before my diagnosis I was kayaking in Florida and sailing past a bunch of 20-year-old college students,” said Walker, who has been married to her husband, Chris, for 35 years. They have two adults daughters and four grandchildren. A long-time resident of Seymour, Ind. she is retired from operating “Stephie’s Pawn Shop.” </p>
<p>“Ovarian Cancer has been called the ‘silent killer’ and it’s true. There are few signs,” said Walker. In addition to kayaking she was taking trips with her grandson to Walt Disney World, biking several miles, and hiking in the woods.</p>
<p>With a Stage 3 diagnosis, she is in the care of Dr. Stephanie Robertson at IU Health Simon Cancer Center. She began chemotherapy a few days before Thanksgiving last year and in May took a trip with her daughter to celebrate her remission. Now she is getting blood transfusions to improve her iron levels. </p>
<p>“I love Dr. Robertson. She told me, ‘it isn’t curable but it doesn’t mean you can’t fight it.’ It gave me hope,” said Walker. In the past four months she has taken three trips – including one to the ocean where she reeled in a 170-pound sailfish. “I’m living my life and I’m going to make every day count.” </p>