Patient wants to get back in the pool and back to school

Diagnosed with Aplastic anemia, Rebecca Richardson’s life has slowed down. A competitive swimmer, she’s hoping to build herself back up enough so she can get back to her favorite exercise.

By T.J. Banes, Senior Journalist, IU Health.
Reach Banes via email: tfender1@iuhealth.org

For ten years, Rebecca Richardson has been in the pool – competing in the breaststroke and relays. It’s a sport she loves.

When she was diagnosed five years ago with Aplastic anemia, she continued to power through. The condition occurs when the bone marrow doesn’t produce an adequate amount of blood cells. It can cause fatigue, a higher risk of infections and uncontrolled bleeding.

For a time, Richardson said her symptoms subsided but then they returned in December of 2018.

Adopted from China at the age of nine months, Richardson said her medical records were inadequate. She was unaware of any complications. So her parents Bret and Tamara Richardson advocated for testing until they had a diagnosis.

“I also have Hepatitis B so we think that triggered the anemia. I first started on meds to decrease the virus in my blood. Then we started treatments for the anemia,” said Richardson. Under the care of IU Health Dr. Robert Nelson she started receiving blood and platelet transfusions.

“Apparently it’s really rare. My doctor told me six out of a million in the U.S. have it but 12 out of a million in China have it,” said Richardson. The Aplastic anemia International Foundation reports the autoimmune disease can affect people of any age, regardless of race or gender. It also appears more often in Asian Americans. Each year between 600 and 900 people in the U.S. are diagnosed.

Even though she had days when her energy levels were low, Richardson loved swimming and completed her career on the Varsity team at Noblesville High School. She graduated in 2018 and began the fall semester at IUPUI. She plans to major in computer science and integrate it into another subject.

“When I relapsed it came back with full force so now I’m taking a break,” said Richardson. She passes the time playing with her golden retriever and mini dachshund.

“Family time is really important to me. We’re all really close,” said Richardson. She has two older sisters and enjoys spending time with her niece and nephew. “I can’t do as much physical activity as I’d like, but I still drive. I just went on a trip to Milwaukee with a friend,” said Richardson. “So you can do the things you want to do. You just take it slower and limit yourself.”

It’s the kind of patient “good-bye” that feels great

After two bouts of testicular cancer, Stephen DeVoie recently made his last trip to IU Health Simon Cancer Center.

Just minutes before sharing their story, Stephen and Jennifer DeVoie had received an “all clear” from IU Health Simon Cancer Center oncologist Dr. Lawrence Einhorn.

It was the words that they had been waiting four years to hear.

Kim Baker has been an IU Health medical care social worker in integrated care management for the past three years. She’s known the DeVoie’s since before they were married. And she shared their happiness with them when they got their good news.

“Jennifer and Stephen went from dating, to an engagement, to marriage, and to an active lifestyle now that Stephen is better,” said Baker. “With my role as a bone marrow transplant social worker, I was able to provide continuity of care throughout their medical journey – before, during and after transplant. Simultaneously, I was able to enjoy their growth as a couple throughout their personal journey.”

It was a journey that began in the spring of 2015. Stephen felt severe pain in his left flank. As soon as Jennifer pulled into the driveway from work they drove to ER near their home in Boubonnais, Ill. – about 55 miles south of Chicago. Tests showed he had testicular cancer. He had testicular swelling the size of softball, was hospitalized for an orchiectomy, and began chemotherapy in June of 2015. He has also been diagnosed with Charcot-Marie-Tooth disorder (CMT), a rare hereditary disease that damages nerves in the arms and legs His father also has CMT.

“I initially just thought the aches and pains were associated with the CMT,” said Stephen, 31. He and Jennifer met in October of 2013. Their first date was to a local gaming store. They knew right away they were compatible. They both love playing board and video games. They were married Dec. 23, 2017 in a private ceremony officiated by a friend.

“We have a lot of opposites that kind of mesh rather than clash,” said Jennifer. The couple bought a two-bedroom home with a fenced-in backyard and just enough room for all of Jennifer’s collectible bunnies.

Stephen is an only child; Jennifer has two older brothers. Her parents Marge and Ken Love live in Hawaii. Stephen’s parents Don and June LaVoie, along with their extended family have supported them throughout their relationship and Stephen’s diagnosis.

One of the first people they met at IU Health was Kim Baker.

“Kim is phenomenal. She was our main support. With family so far away, we depended on the staff here beyond medical support,” said Jennifer. “The nurses were fantastic.” Baker displays the couple’s wedding picture in her office and she wears beaded jewelry handmade by Jennifer – a testimony of their bond.

Stephen DeVoie first became a patient at IU Health Simon Cancer Center in the spring of 2017.

“Everything seemed calm and we thought the cancer was gone and then he started complaining of pain again,” said Jennifer. Tests showed the cancer had spread and was compromising the vena cava. Stephen had another surgery closer to home and then his oncologist referred him to IU Health and Dr. Lawrence Einhorn – known for his successful treatment of testicular cancer – germ cell tumors – using a mix of high dose chemotherapies and peripheral stem cell transplant.

“Dr. Einhorn is just easy going and obviously knows what he’s talking about. No question is too weird. He’s just great,” said Stephen.

Stephen completed his bone marrow transplant and the couple was on their way back to Illinois when their red Toyota Camry was struck by a semi on I-65. It was 4:30 in the afternoon and they weren’t even out of Indiana when they ended up back at the hospital.

“We’ve been through more together in our six years than most people have been through in decades,” said Jennifer. They hit a guardrail and walked away from their totaled car with bumps, bruises, scratches, and nothing but the clothes on their backs.

Since completing his treatments, Stephen says he feels great.

“In April of 2018 Dr. Einhorn said he didn’t want to see us again until 2019,” said Stephen, “We came back and we’ve pretty much graduated from IU Health,” said Jennifer. “It’s the kind of ‘good bye that feels great.”

–By T.J. Banes, Journalist, IU Health. Reach Banes via email tfender1@iuhealth.org.

Oh the stories this nurse could tell

After 45 years, Methodist RN Susie Crichlow is hanging up her scrubs.

By Maureen Gilmer, IU Health senior journalist
mgilmer1@iuhealth.org

Susie Crichlow will never forget the elderly patient who came into the emergency department one night decades ago.

The woman was memorable not because of her injury or illness but because of what she was wearing – underneath her clothing.

She had some money tucked away, she told the nurse. “Nobody’s gonna take my money.”

When Crichlow offered to have hospital security hold the money for her, she refused. It wasn’t until the woman’s daughters arrived and persuaded her to put on a hospital gown that the cash was found neatly tucked into her undergarments.

$35,000.

“I thought I was going to fall over,” Crichlow said, laughing as she told the story after her retirement from IU Health Methodist Hospital last week.

Crichlow worked her entire 45-year nursing career at Methodist, nearly all of it in the emergency department. Stories like the one above are legendary in the ED, where humor and heartache are constant companions.

There was sadness, of course. And trauma – whether it was Indy 500 drivers rushed in for treatment after horrifying crashes or the husband of a dear friend dying in the ED.

But what Crichlow remembers most are the friendships that formed.

Many of those friends turned out Thursday for her retirement party, appropriately set up in a room adjacent to the ED, so people could come and go as needed. Crichlow didn’t want a big affair – just some good sandwiches, a white and lemon curd cake and the chance to reminisce with her colleagues.

One of her favorite pictures from the event shows her with Dr. Chuck Shufflebarger, who worked nights in the ED as medical director, and Jack (Skip) Keene. “Three legends,” someone commented.

Crichlow worked nights for more than a dozen years while her kids were young.

“There’s a great camaraderie on nights, and you get to know each other well.”

There were adventures over the years, too.

She recalls working with the late Dr. Henry (Hank) Bock, longtime emergency medicine specialist at Methodist and senior director of medical services for the Indianapolis Motor Speedway, when he was overseeing the launch of LifeLine in the late 1970s.

Before the first medical flight, Dr. Bock asked Crichlow if she wanted to join him on a practice ride out to Eagle Creek Airport. She said yes and jumped in.

“As soon as we got in the air, all I could think was I have just done the stupidest thing of my life,” Crichlow said. “I have a little girl at home, I am five months pregnant now, and I’m in a helicopter. What if something goes wrong?”

Lucky for everyone, nothing went wrong. “That was an exciting time,” she said.

Her daughters, now grown with kids of their own, were on hand for their mom’s party. But there was someone missing.

The night before her last shift in the hospital that has seen her through so many changes, including a health scare earlier this year, Crichlow admits there were a few tears.

“It didn’t have to do with retirement so much as I wanted my husband there,” she said. “I wanted Doug to be there to see the finish line with me.”

Doug Crichlow, her champion and chief encourager, whom she met while both were students at DePauw University, died 13 years ago.

“He was such a part of my career, I just wanted him there.”

Crichlow’s heart informed her work, her friends say. She was a champion for compassion, according to Linda Rohyans, who worked with Crichlow on the Clinical Informatics team.

“Susie always strove to do her very best in whatever she did, so the patients would receive the best of care and her colleagues would receive encouragement and motivation to provide the best of care.”

Rohyans said when the two began working together, she discovered her new friend’s “passion for life, her love of family, her reverence for her friendships, her drive to do the right thing and to genuinely advocate for those less fortunate,” she said.

“I love Susie, not only for what she has meant in my life, but in the lives of everyone she has touched. We are better people for having her in our lives.”

As Crichlow walked out of the Methodist ED as a nurse for the last time, her girls, Katy and Jenny, recorded a video of their mom saying goodbye. That’s when it became real for her.

“I waved and I thought, ‘Oh my gosh, this is really it.’ ”

Tributes to the longtime nurse poured in via Facebook. Following are just a few of those comments:

“Wow, another legacy goes into the sunset of retirement. So happy to have worked with you so many years. Enjoy the future.”

“Congratulations Susie on your years of service and unending dedication to furthering emergency care.”

“So pleased for you and thankful you were there many times to support us when we visited Methodist’s emergency room. I can only guess the number of lives you impacted. Well done.”

“I am a better person because I worked with you.”

“You have been an asset to Methodist Hospital for all these years! No matter what department you’ve been in you have given it your all.”

“I was so very privileged to have worked with you! You took Katie, Teresa and I under your wings as we were new DePauw grads, and you knew just what we were going through! Thank you for all of your years of service, and wishing you much happiness in this next chapter of your life!”

This warrior hopes to become a pediatric neurosurgeon

Even before she became a patient at IU Health Simon Cancer Center Abigail “Abbi” Sarabyn knew she wanted to be doctor.

It was finals week at IUPUI and Abigail “Abbi” Sarabyn was like any other college student – stressed out and looking forward to summer break. But something happened that changed her focus.

“I wasn’t feeling well and when I coughed or sneezed there was pain in my chest,” said Sarabyn, 22. She made a solo trip to her primary care physician thinking she’d get some meds to get her through finals.

Beginning in elementary school, Sarabyn played school and club volleyball. She was a fit athlete and rarely had any illness. A 2016 graduate of Pike High School she remembers a twisted ankle and more than one concussion but other than that she was healthy.

Her parents James and Kim Sarabyn describe their youngest child as “stubborn to a fault but very compassionate.” They say as a little girl she was always strong-willed and independent. She also has a brother Matthew, 25.

So when Abbi returned to her primary care physician a second and third time, her parents weren’t surprised by her persistence. The second time she complained of stomach pain and her doctor thought maybe she had an ulcer. But days later she returned with shooting pains up her arm.

“Since it was finals week, I knew I was stressed but the dots weren’t connecting. Something was wrong,” said Sarabyn. She drove herself to urgent care and was referred to IU Health West for blood work and scans. Her mom met her at the hospital and they received the results together. Her blood levels were elevated. Scans showed a softball-size mass in her chest and blood clots in the lower lobes.

“After that they said they would send us directly to IU Health Simon Cancer Center. We transferred her and things snowballed from there,” said Kim Sarabyn. It was April 30 and this 22-year-old college student and healthy athlete was about to face a test outside the classroom – one of the biggest challenges of her life.

Abbi Sarabyn was diagnosed with Diffuse Large Cell B-Cell Lymphoma (DLCBL). The cancer starts in the white blood cells and usually grows in lymph nodes- the pea-sized glands in the neck, groin, armpits and other parts of the immune system. It can grow fast but three out of four people are reportedly disease free after treatment.

At Simon Cancer Center, in the care of oncologist Dr. Jose Azar, Sarabyn learned she had fluid around her heart and tumors on each kidney, her adrenal gland and small intestine. During her weekend hospitalization her small bowel erupted and she was taken into emergency surgery.

“That surgery saved her life,” said her mom. But as the mass in her chest continued to grow and push against her esophagus, the family knew Abbi needed to begin chemotherapy as soon as she healed from surgery.

In May she started a regime that continues every 21 days. It seems to be working.

“The mass is significantly reduced – about 80 to 90 percent and the lymph nodes are down 80 percent,” said Abbi. “Everyone we’ve dealt with has been so nice. I had a list of questions for Dr. Azar and he is so nice. He’s informative and answers all the questions in a way I understand the answers. I think in the end this experience will make me a better doctor.”

Sarabyn has known since eighth grade she wanted to study neuroscience. “I’ve always been interested in dream and sleep cycles and I really want to work in pediatrics as a neurosurgeon,” she said. She recently was recognized for her academic standing with the Hawryluk Family Scholarship – a $5,000 award.

She’s taking a semester off school to finish her treatment but hopes to be on track to graduate in 2021.

“I’ve known since she started playing volleyball that she was a warrior, playing through pain and never giving up,” said her mother. “We have been so overwhelmed by all the support – people praying for her everywhere.” Many friends and family members wear neon green #Abbistrong t-shirts to show their support.

And Abbi has her own symbols to remind her of her strength – three crosses tattooed to her skin. “The one on my hand reminds me to do God’s work; the one on my feet reminds me to go where God leads me; and the one on my neck reminds me to stay focused.”

— By T.J. Banes, Journalist, IU Health.
Reach Banes via email tfender1@iuhealth.org.

Giving Birth: Paoli Hospital delivers on the extras

When Lauren and Josh Shipman married, they made their home in Paoli near family. When expecting their first sons, they chose nearby IU Health Bloomington Hospital for the deliveries of Eli and Sam. But when Lauren was expecting a third time, the couple – with rave reviews from friends – decided to stay even closer to home. Isaac was delivered at IU Health Paoli Hospital.



“We actually had friends that – with their first born – had planned to go to another hospital,” explains Josh. “Things didn’t work out and they ended up here at Paoli. And they loved their experience so much that when they were expecting their second, they didn’t hesitate to choose Paoli.”

“A couple of my friends really liked the Jacuzzi tub they could use during labor and things like that were main reasons we chose Paoli,” adds Lauren.

With her previous pregnancies, Lauren’s water broke, starting her labor and the process of traveling to IU Health Bloomington Hospital. That was not a factor with Isaac’s birth. Lauren was a couple of days overdue that February when she had a morning appointment with Yolanda Yoder, MD, a family practice physician in Paoli.

Dr. Yoder scheduled an induction for that afternoon. The induction progressed quickly, requiring the anesthesiologist to take an immediate course of action. Throughout the process, the anesthesiologist, along with the doctors and nurses, made sure the Shipmans understood what was going on in each aspect of care they received. “It was immediately obvious that they love what they do,” says Lauren. “They were very sincere to us, to our kids, to our baby.”

Convenience and proximity were important to the Shipmans. Since the family lives in Paoli, the two older sons could be close to their parents while staying with grandparents. “I think the big thing is the location. Especially for local people. You don’t have to drive an hour while you’re in labor. That’s not very convenient for a mother,” points out Lauren.

But location, coupled with care, made the experience unforgettable. “The staff is really dedicated to ensure your stay is really pleasant. You could tell they really care about their jobs and their patients – mothers and fathers and the babies. They do those little extra special things that mean a lot to the parents,” Lauren says.

“With our two older boys, they made them big brother certificates which were very special for them, especially when a lot of attention was focused on the baby at the time. They wheeled in a steak dinner for all of us to share. The nurses also made Isaac a decorative birth certificate and even asked how his nursery was decorated so we could hang it in his nursery when we got home. It’s just those little extra touches that they went above and beyond that made it a nice day for us.”

She points out that while some parents, especially first-time parents, might initially be concerned that it is a smaller OB unit, what she and her husband found is that it is a modern facility with upgraded equipment, updated ultrasound and a birthing tub that mothers can use for relaxation while they’re laboring.

“For us, obviously we were really impressed with the medical aspect of it. The doctors and the nurses were very knowledgeable,” she adds.

“We also know how important this facility is to the community and to the area, and we wanted to support the hospital and the staff,” concludes Josh Shipman.

Dr. Yoder adds her own perspective: “IU Health Paoli is a great place to deliver a baby for several reasons. One thing we are known for is our flexibility. We encourage our patients to develop a birth plan. We encourage as much flexibility as they want. We are known for being able to honor those (plans) because of our excellent nursing staff ratio.

“We’re able to accommodate them and their individual requests. We have everything from the typical natural labor with the birthing tub. We have a variety of other uses for equipment. We encourage them to get up and walk around instead of being hooked up to a monitor; we encourage the natural birthing process as much as possible. And we have C-section staff available 24-hours a day, so in the event that natural labor turns into the need for something else, we are ready to move.”

New Pulmonary Rehab program offered at IU Health White Memorial

Indiana University Health White Memorial is adding a Pulmonary Rehabilitation program. Pulmonary Rehab is a program designed to assist patients with lung or breathing problems in learning to live a more satisfying life within the limits of their disease.

“The pulmonary rehabilitation program is a combination of education, exercise, goal-setting and long-term maintenance for continued success,” said Ryan Hancock, MD, family medicine with IU Health Arnett Medical Offices located in Monticello. “It is amazing to see patients get into the program and understand the impact it will have on their lives – to see them excel and become committed to their new routine.”

The pulmonary rehabilitation program includes the following features: exercise, education, medication and equipment education, and breathing techniques.

Exercise is used to help patients increase endurance, strength and flexibility. Patients may walk, ride a stationary bike or do exercises in a chair. They will be taught stretches to do before and after exercise and they will use weights to build strength. Pulse, heart rate and oxygen levels may be checked during exercise.

The program also educates patients about their lung problems, including how the lungs work and how their problem may be affecting breathing. Medication and equipment education is used to show how and when patients should take medications and how to use oxygen (if prescribed). Additionally, breathing techniques are discussed to help patients learn to control shortness of breath, including pursed-lip and diaphragmatic breathing.

“Overall, the program has a number of benefits to our patients,” said Hancock. “Most importantly, pulmonary rehabilitation helps eliminate hospital visits and improve patients’ overall quality of life.”

Some of the many program benefits to patients include the opportunity to:

  • Do the everyday things they love
  • Improve overall strength, endurance and independence
  • Perform daily activities, such as household tasks, with less shortness of breath
  • Understand symptoms and medications – this can mean fewer emergency room visits and less time in the hospital
  • Learn to relax and not panic when patients feel short of breath
  • Quit smoking – even now, this is the most important change patients can make to their health

To learn more about the pulmonary rehabilitation program at IU Health White Memorial Hospital call 574.583.2667.

Mother, daughter – One is a miracle; the other is a hero

When her mom’s heart stopped beating, a young girl called 911 and was coached through CPR by a dispatcher.

Walking through the hospital doors is kind of a big deal for Misty Moore and her daughter Hayley McKinley, 10.

First there’s the idea that Moore can even walk – something she was unable to do six months ago. Then there’s the idea that everybody knows Hayley.

“You don’t remember me? Well we remember you. You’re my buddy. You’re the IU Health West mascot,” said Nurse Kapri Ames, Director of Emergency Services, Pediatrics. Like Ames, other nurses, occupational therapists, and a chaplain have vivid memories of Hayley McKinley and her mother – memories they soon won’t forget.

It was 9 p.m. on Monday, Feb. 11 when Moore told her daughter that her chest hurt and she was going to rest on the couch. Hayley curled up next to her mom. Like any other night, the 10-year-old planned to remain downstairs until her dad Brandon McKinley, returned home from work. She would tell him “good night” and then go upstairs to her room.

“I’m so glad I didn’t fall asleep,” said Hayley. When her mom began gasping for air, Hayley called her dad, who was on his way home from Terre Haute where he was completing his day as a mechanic for a gas company. When she didn’t get an immediate response she called 911. Over the phone, Indianapolis Fire Department dispatcher, Kris Mayfield began walking Hayley through CPR.

“I was crying at the beginning but the operator was being so calm and that’s what I needed,” said Hayley, who turns 11 on September 12th.

***

This is a girl who is in the sixth grade at Bridgeport Elementary, a member of an award-winning math bowl team, and a softball player who once dressed up as Colonel Sanders for a school project about historical figures. She’s a girl who shrugs her shoulders in that “no big deal” way when her dad talks about her recognition of heroism by the American Red Cross. She’s the same girl who first learned about CPR by seeing a poster hanging in her school’s gym.

Brandon McKinley estimates his daughter performed CPR for about three minutes before he walked in the front door and took over.

“I walked into a nightmare. Haley was pushing with everything she had. She yelled, ‘daddy help’ and I took over coached by the dispatcher,” said McKinley. When Wayne Township emergency responders arrived, Moore was rushed to IU Health West. “They had to shock her five times. Fortunately my mom got there so Hayley didn’t have to see all that,” said McKinley.

The last thing Moore remembers is going to work that day at the Marion County Assessor’s office. Her chest hurt then and she told McKinley she thought she had strained a muscle lifting files. The couple, together 13 years, met through family members. They talked throughout the day and Moore said she had no reason to think there was anything serious with her health. Both her parents suffered strokes but Moore said had regular doctor check ups and had no history of high blood pressure or diabetes.

***

Everything changed on that February night.

“They told me there was a 25 percent chance she’d wake up,” said McKinley. His fiancé suffered a heart attack and multiple Ischemic strokes, obstructing the blood supply to the brain.

Moore was hospitalized for weeks – spending part of that time in a medical induced coma.

Nurses Jennifer Markowitz and Stacy Westmoreland were part of a team of caregivers for Moore and her family. Chaplain Michael Gilbert was also part of that team. A big focus on that care was Moore’s daughter.

“With anyone who has cardiac arrest there is a guarded prognosis. With low oxygen to the brain their prognosis is unknown at that time. You have to give it time to see if they will recover. It was a scary time for Hayley,” said Westmoreland. “I spent a tremendous amount of time talking to her. When she got here she was not looking good but I talked a lot to Haley about what a wonderful thing she did and if she doesn’t make it it’s not her fault. I think she got the sense she did something amazing but she wanted it to keep going. She wanted her mom back and I wanted to make sure as a 10-year-old she knew that she had done everything she could,” said Markowitz. To help ease some of the fears of the unknown, Gilbert consulted pediatric caregivers at Riley Hospital who helped him prepare for Hayley’s initial hospital visit with her mom.

“I spoke with them maybe five minutes and I had a list of 10 things to do,” said Gilbert. There were two matching teddy bears brought in – one for Haley and one for her mom, time limits set for Haley to be in the room with breaks offered for her to process the situation. Staff members got her a doctor kit and kept her busy with errands and trips to the hospital cafeteria for soft drinks and snacks. They made paper hearts for visitors to sign – encouraging messages that Haley could also read.

***

Haley wrote her own letter to the staff members who cared for her mom.

“I want to thank you so, so, so much for what you do, how you help me, my mom and dad and all the people who visited my mom. You helped us be happier. I don’t know if it is possible to have the best and worst day of your life in the same week but that sure happened to me,” Haley wrote. She now has her sights set on becoming a nurse or firefighter.

The best day came when her mom showed the first signs of awareness with a single tear trickling down her cheek. Slowly she began to recognize the people around her. To encourage her recovery, Gilbert told her he’d be her “Dancing with the Stars” partner and occupational therapist Jessica Herceg arranged backstage passes for Moore to see her favorite group – New Kids on the Block, one she first saw in concert at the age of 14.

“I was talking about how special Misty’s story is and I felt like something really amazing needed to happen for her,” said Herceg. One person got in touch with another person and before they knew it, Misty had a personal backstage meet and greet with the group.

About five days after she arrived at IU Health West, Moore could sit on the side of her bed. “By the time she left the hospital she could walk about 80-feet – a big struggle and also a big accomplishment,” said McKinley.

Months of physical therapy have helped Moore learn to walk, talk and care for herself. She longs for the day she can drive her daughter to after school activities and shopping outings but for now says she is blessed to be alive.

“I’m a walking miracle,” said Moore, “Because of my daughter, my hero, I’m lucky to be alive.”

— By T.J. Banes, Journalist, IU Health.
Reach Banes via email tfender1@iuhealth.org.

New intestine, new chance to live his life

Tony Finch can’t say enough about the transplant team at IU Health. Years of searching for answers resulted in a second chance at life.

There’s a paper calendar that Lisa Finch thumbs through looking at dates that correlate with her husband’s hospitalization. After a couple of minutes of looking over the highlighted sections of each month, she just says: “He was in and out of the hospital a lot.”

Chronic diarrhea resulted in Tony Finch becoming dehydrated and malnourished. Practitioners could tell he was losing ground when his weight dropped from 180 pounds to 119 pounds. After several months of testing and trying various medicines, Finch was diagnosed with Collagenous enteritis. The rare disorder generally associated with adults over the age of 45, is a type of inflammation – a collagen under the lining of the colon. In some cases medications improve the condition. For Finch, there was no relief. With the help of IU Health dietitian Tracy Burch last year he began Total Parenteral Nutrition (TPN), intravenous IV nutrition to begin building his strength. On Nov. 8, 2018 he was listed for a small bowel transplant.

A native of Russiaville, Ind. Finch was raised in the country – the youngest of three boys. “I played in the creek a lot and in the woods,” said Finch, 56. He met his wife Lisa at a local arcade when she was 16 and he was 19. That was 37 years ago and this December marks their 34th
wedding anniversary.

She’s been with him throughout his illness. It’s not his first extended stay at IU Health.

The couple hadn’t been together very long when Finch had a car wreck and suffered severe spinal cord injuries. He was paralyzed on his right side from the waist down.

“I often wonder how the same person can experience such awful things twice in their life. That time was different – much harder. We had two young daughters ages three and seven months,” said Lisa Finch. He spent two months in IU Health Methodist Hospital and months after that in rehabilitation.

This time, Finch feels like he’s got another chance. Under the care of Dr. Richard Mangus, he received an intestinal transplant on July 7th
and he says he feels great and is ready to get out and make up for missed time – especially spending time with his family. His daughters are now married and he’s a grandfather to five.

“He’s spent so much time in the hospital or not feeling well that he’s missed a lot of holidays and special occasions,” said Lisa Finch. “I can’t say enough about Dr. Mangus and the transplant team here. They’ve all been great. The nurses even got me a cake and decorated my room for my birthday on August. 4th,” said Tony Finch. “But I’m missing my grandchildren – I haven’t even met the fifth one who was just born recently. I’m ready to go home.”

— By T.J. Banes, Journalist, IU Health.
Reach Banes via email tfender1@iuhealth.org.

“When we learned about CAR-T, we knew it’s what we had to do”

There was a cough that wouldn’t quit. Now Devon Tesler is preparing for a groundbreaking new gene therapy.

As he reclined in the third floor apheresis unit of IU Health University Hospital Devon Tesler talked about life before his diagnosis.

At a very young age his mom, Michelle Byrd recognized a giving heart in her middle child. Devon, 20, has an older sister Kate Tesler, 22 and a younger brother Conner Tesler, 19.

“When he was young if they wanted something, he’d give it to them – Yu-Gi-oh trading cards, whatever – he’d save up money and spend it on them,” said Byrd. He’s been known to pay for a friend’s lunch or movie ticket and when the family moved into a new home and his younger brother wanted the bigger room, Tesler relented.

“As a toddler he was completely different than my first baby. All he wanted to do was eat and sleep,” said Byrd. Her middle child weighed in more than nine pounds at birth and when he started to talk he used a deep husky voice said his mom.

A 2017 graduate of Hamilton Southeastern High School, Tesler dabbled in several sports – baseball, football, and hockey – in elementary and junior high. He continued with football his freshman year of high school and then got interested in weight training.

When he dropped a few pounds he thought it was probably due to increased activity.

***

It was last July when the family was taking off for their annual vacation to Traverse City, Mich. that Tesler learned he has Non-Hodgkin lymphoma. He’d been coughing since March and made a couple trips to the doctor. First he was put on antibiotics, then allergy medication. His physician suggested an x-ray just a few days before the family was headed out for their vacation.

“They suggested a second scan so we got them in Michigan and had them sent to IU Health. We had to wait through the Fourth of July holiday before we heard the results,” said Byrd. Within days, Tesler was in the care of IU Health hematologist/oncologist Dr. Hillary Wu. He started six rounds of chemotherapy followed by several rounds of radiology. “It was looking like it was working and then he started coughing again. As we began to prepare for a stem cell transplant, his condition grew worse. Then we learned about CAR-T therapy and we knew we had to do it,” said Byrd.

The innovative gene therapy uses custom-made cells to attack a patient’s own specific cancer. CAR-T cell therapy allows doctors to isolate T-lymphocyte cells – the body’s cells that fight infections and are active in immune response. The T cells are then engineered to express a chimeric antigen receptor (CAR) that targets a protein on a patient’s cancer cells, attaches to them and eventually kills them. Indiana University Health is one of the first sites in Indiana to administer the treatment. One of the first phases in the therapy involved Tesler’s lengthy visit to apheresis to remove his blood plasma, separate the plasma cells, and then reintroduce cells. Tesler is one of the youngest adult patients to receive the innovative therapy at IU Health.

“It’s all a process that we’re learning about. With apheresis they extract Car-T cells then send them to manufacturers. Then in about 21 days they’ll send them back IU to test them and make sure they’re viable before they’ll start chemo again and reintroduce the cells. We don’t expect him to get to the final stage until about four weeks,” said Byrd.

***

Tesler grins as nurse Sarah Isaacs checks on the apheresis progress. This is a better day than others he’s had recently. He’s just finished up a four-day hospital stay – rushed by ambulance with a high fever and elevated heart rate. He’s looking for light at the end of the tunnel.

“When I first heard the words ‘Non-Hodgkin lymphoma’ it was new to me. I knew it wasn’t good. It was surreal,” said Tesler. He was 19 at the time and in his first year of college at IUPU studying health science. He had just been promoted from a bus boy to a server at Bubba’s 33, a restaurant in Fishers, and was enjoying the summer with his high school friends who have scattered to various colleges.

“Of course the first thing that happened was I worried. I worried that I had dismissed a lot of signs – like the chills at night or the sweating or the weight loss. I just thought I’d been chalking it up to other things and here it was something worse than a cough,” said Tesler. He’d had no other serious illness until his diagnosis. In fact, he says the worst thing that ever happened to him was when he was four and a neighbor girl ran over his right leg on her bike and broke a bone.

He worried most about how his friends would accept the news.

“He’s always had a close-knit group of friends. He’d do anything for them,” said Byrd. When they get together they enjoy board games, card games and movies – especially Star Wars. Tesler once gave his own money to buy one of the friends a saber just to see him smile. “Devon’s the type of guy who will open a door to anyone. If five people want a cookie, he’ll give it up and get more,” said Byrd.

He sent a group message to his friends to tell them about his diagnosis. This is the same group who showed up at his house and climbed through a window with food from Taco Bell when he went through a high school break up. That same group showed up again after his first session of chemotherapy.

It’s a different kind of summer, he says. “Normally, I’d be taking trips back to Traverse City and Captiva Island and working security for concerts with my friend. I’d be working and getting ready to go back to school.”

Now, he’s waiting and hoping that this new therapy that he is just learning about will be enough to get him back to good health. And as he waits he chills.

“I’ve done a lot of thinking. I still love making people smile more than anything,” said Tesler. “I guess if I had a life motto I’d say, ‘smile, be positive, help others and be the change you want to see in the world.’”

— By T.J. Banes, Journalist, IU Health.
Reach Banes via email tfender1@iuhealth.org.

Mom of toddler: “It’s OK to feel sad and overwhelmed”

A rare cancer diagnosis isn’t the first blow Lara Aikman has faced. With the support of her family, she’s determined to triumph over this disease.

Nancy Benson issues a warning to guests entering her daughter’s hospital room at IU Health University Hospital: “There may be tears. In fact, there may be lots of tears.”

Sitting near a window bundled in two blankets made by her friends, Lara Aikman attempts to smile as she talks about the disappointments in a life that spans less than three decades. As she listens, her mother shakes her head as if such heartache should happen to someone much older.

At 29, Aikman has lost her father, uncle, and father-in-law to lung cancer. She’s experienced the grief of miscarriage and has mourned the loss of her second pregnancy. She was induced at 24 weeks with a little boy named “Charlie,” who passed in 2016 diagnosed with Trisomy 13, a genetic defect.

“She almost died then. She had preeclampsia so bad that her blood pressure was super high and her liver and kidneys were severely affected,” said Benson.

In June she faced more distressful news. After two bone marrow biopsies she was diagnosed with Myelodysplastic syndromes (MDS). The condition occurs when blood-forming cells become abnormal. It’s often referred to as “bone marrow failure disorder.” According to the MDS Foundation 75 percent of patients diagnosed are 60 years or older. An estimated 60 to 170,000 people live with MDS in the United States. There are about 87,000 new cases worldwide each year. A stem cell transplant is considered the only way to potentially cure MDS.

“I had no symptoms. I felt fine. I had to go for a routine physical for work and was referred to a hematologist,” said Aikman. Not only was the news a shock, it came at a time of her life when she was just beginning to welcome the joy of marriage and motherhood.

A 2009 graduate of Washington High School, Aikman met her husband Robbie when she was a senior. He was starting his freshman year of college. After high school she enrolled in the University of Southern Indiana but switched to Vincennes University to be closer to Robbie. They married on Nov. 23, 2013 in front of about 200 guests at St. James Lutheran Church in Holland, Ind. The wedding party was dressed all in black and white and the bridesmaids carried bouquets of roses accented with peacock feathers. The couple enjoyed a cruise for their honeymoon and settled back in Washington, Ind.

After the loss of two pregnancies, they welcomed a son Cooper who turns two on September 18. That milestone is one that helps Aikman focus on getting well.

A stem cell transplant on August 15 falls on the same day her father would have turned 72. Under the care of hematologists/oncologists Dr. Larry Cripe and Dr. Robert Nelson she has been on transfusion support twice a week since the end of May.

“My brother Dustin was tested and was a half match but we found a perfect match through the bone marrow registry – a 29-year-old male,” said Aikman. “Actually she learned on her birthday on July 3 that there were three perfect matches and that was the best birthday present of all,” added her mom.

“I miss being with my boys – going to the park, the zoo, and museums,” said Aikman. “We’re a tough resilient family and we put our faith in God. We also know it’s ok to cry and that everyone goes through trials. If I were to give anyone any advice I’d definitely say, ‘It’s ok to feel sad and overwhelmed.’”

— By T.J. Banes, Journalist, IU Health.
Reach Banes via email tfender1@iuhealth.org.