Grateful transplant patient plans her legacy

In 2010, Elaine Hoffman was a busy grandmother and wife splitting her time between homes in California and Indiana. Decades before, in the 1970s, she had contracted hepatitis C through a blood transfusion. She was told that someday she might need a liver transplant, but that seemed far off in the future. However, during her stay in California in the winter of 2010, Hoffman realized she was becoming sicker. Feeling confusion, memory loss and symptoms similar to dementia, Hoffman sought the advice of her physicians at Cedars-Sinai. They confirmed what Hoffman had suspected: a liver transplant was imperative, and it couldn’t wait.

However, the transplant list at that time in California was long, especially for a patient with a rare blood type, as Hoffman had. Facing a wait that could take up to a year while growing sicker, Hoffman took the advice of a friend in Indiana who suggested she call IU Health, renowned for its transplant programs. As an Indiana resident, Hoffman was eligible. She returned to Indiana, where she met with Marwan Ghabril, MD, an IU Health hepatologist. He had good news: No one with her blood type was on the waiting list. Ten days later, a donor was found.

Hoffman’s liver transplant not only saved her life; it meant a permanent return to Indiana, so she could continue her treatment at IU Health. She was so grateful for IU Health’s swift action and unparalleled care, that she has included a bequest to IU Health in her estate plans. Her intention is to help other transplant patients and their families.

Incorporating philanthropy into estate planning is a responsible way to ensure your legacy has the impact you wish. Marya Jones, director of planned giving for IU Health Foundation, is an attorney with extensive experience in estate planning.

“It’s a perfect marriage personally and professionally for me,” Jones said. “I get to do what I love, which is help people make wonderful, meaningful gifts and create a legacy that puts a seal on their life experience.” She was also drawn to IU Health because of the care her family members received at IU Health Methodist Hospital.

Jones recognizes there are plenty of barriers to planned giving, including the difficult nature of anticipating one’s death. She says another hurdle is convincing people they can leave enough to make a difference.

“That is really the key thing about planned giving–it gives everyone from the wealthiest person to the person who’s not as well-off the opportunity to say thank you for the care they received, or to honor someone they’ve loved,” she said.

As for Hoffman, now 75, life after her transplant is full of joy and hope. She thrives on spending time with her family and enjoying her great-grandchildren. She said her gift just seemed like the right choice.

“I think people forget about going beyond their family, and using their life and death to honor others,” she said. “I wouldn’t be here if it wasn’t for IU Health. This wasn’t something that was required. But this was what I felt was my obligation to them, for what they did for me.”

Jones encourages anyone interested in discussing planned giving opportunities to contact her. She is happy to collaborate with attorneys and financial advisors, and is committed to finding a way to meet each donor’s individual needs. To explore how giving to IU Health can be part of your estate planning, contact Jones at 317.962.1891 or mjones68@iuhealth.org, or visit iuhealthfoundation.org.

Sunflower: symbol of remembrance

There’s always that one patient who stands out – this one loved sunflowers.

Helen Keller is quoted as saying: “Keep your face to the sunshine and you cannot see the shadow. It’s what sunflowers do.”

Charge Nurse Samantha Phelps can relate to that quote. There was a patient named “Logan” who had his first transplant when he was a 2-years-old. He had a second transplant three decades later and was hospitalized at IU Health for five months. He passed on June 29, 2018.

Phelps still wears a wristband with the words: #LoganStrong. In her second year as a nurse at IU Health, Phelps said: “Logan was one of those patients you’ll always remember. Even on his bad days he was a kind soul with a big heart. He loved to sing old country music.”

And Logan loved sunflowers. His whole hospital room was decorated in sunflowers.

“He said he like sunflowers because they always looked towards the sun, the brightest view,” said Phelps. On the recent anniversary of Logan’s passing, his family sent bouquets of sunflowers to the Transplant Intensive Care Unit. One card was signed: “We will always remember the loving care for Logan.”

Phelps even created her own arrangement – a long-stemmed sunflower standing alone in a bedside urinal.

“I think Logan would find the humor. He was always so positive,” said Phelps. “One of the best things about nursing is getting to connect with my patients and their families on bad days and knowing I help them just a little bit.”

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

White Memorial team rallies around Sharon Hartwell

Sharon Hartwell has dedicated herself to serving others. She is the parent of a Special Olympic athlete, a coach, a volunteer and team nurse. She has taught countless individuals life saving skills as an educator at IU Health White Memorial. She has taught teenagers how to be the best babysitter possible.

Hartwell has been a certified child passenger safety technician since September 1998. She provides child passenger safety services to patients and families at IU Health White Memorial Hospital as well as to families throughout White County. She has worked with local law enforcement and fire departments on the proper transportation of children. She has been known to purchase car seats with her own money when monetary contributions are depleted.

Like so many dedicated individuals, Hartwell has many stories to share; least of all her own. In May, Hartwell was diagnosed with Pancreatic, Liver, Lung and Gallbladder Duct Cancer. She immediately had a port placed and started chemo. Her “day” job took a back seat. She needed PTO time to cover her paycheck until her short team disability kicked in. Within 4 -5 hours her work team donated the 240 hours needed.

Team members from EVS took Hartwell “to the ocean” during one of her oncology treatments. They brought in sand and made beautiful cocktails with fruit (without alcohol of course).

Team members from surgery took soup to her house and discovered there were no steps and handrails to get into her house. Soon a collection was started for the deck. Enough money was gathered to cover the entire deck supplies. There was even enough money left over to help with the purchase of glucometer supplies and protein shakes. A couple of team members with family in tow started the deck on Friday morning and finished it around noon on Sunday.

It is hard to determine how many lives have been saved and injuries prevented thanks to Hartwell’s lifelong dedication. Now her team is rallying to save hers.

Why is there a zoo in infusion? Ask this CAR-T patient

One of IU Health Simon Cancer Center’s patients found a way to pass the time while he was in infusion – and entertain the nursing staff too.

Nurse Susan Westrick holds a tiny elephant in the palm of her hand.

“This is the one he made for me,” she said. It’s a paper elephant and part of a herd of six. There are other paper animals too. The origami was created at the hands of a patient from Northeast Indiana.

Jeff McAfee spent many hours at IU Health undergoing treatment for lymphoma. He passed the time creating the small zoo of paper animals displayed in the infusion center at IU Health Simon Cancer Center. On his recent release day, the nurses said they were happy to have the little keepsakes to remember McAfee.

It was Labor Day 2017 when McAfee thought he’d torn a rotator cuff after working on a Habitat for Humanity home. His doctor told him to give it three weeks and see if the pain eased up.

“I went back three weeks later and then three weeks later and it still wasn’t better,” said McAfee. Then on Dec. 11, 2017 he went to an orthopedic surgeon near his hometown of Berne, Ind. He and his wife Linda, his high school sweetheart, were married 45 years ago. They built a home on 40 acres of wooded property with a three-acre pond in Adams County and made the move on Labor Day Weekend 39 years ago.

It was the orthopedic surgeon who notified them that McAfee had a torn rotator cuff but he had something more. An MRI showed a mass in his right shoulder. He had cancer. In a matter of days, McAfee was scheduled to meet with a Fort Wayne oncologist. The first thought was that he had sarcoma.

“We thought if it was sarcoma he’d probably have to have his arm amputated,” said Linda. “It sounds crazy but we rejoiced when we heard the word ‘lymphoma,” add Jeff McAfee. By the beginning of the New Year, McAfee was starting a regime of chemotherapy.

“I went through six rounds and had good success. The large cell lymphoma reacted well. The swelling went down and I was able to move my arm,” said McAfee. At the end of April 2018 he finished chemotherapy and followed with 20 days of radiation at a hospital in Fort Wayne.

Three months later a PET scan showed no evidence of the disease. The parents of three sons and grandparents to 12, looked forward to getting life back to normal. Jeff went back to work and pursued the hobbies he loves. He likes bird watching and hiking and once completed a 100-mile trail in Colorado. He also enjoys fishing for red drum – also known as channel bass – in the backwaters of Louisiana. He and Linda go for long bike rides together and have a goal of riding in 48 states. So far they have 10 more to go.

When he got the “all clear” after chemo and radiation he joined a two-day, 200-mile bike ride benefiting Gateway Woods, a Christian school in Leo, Ind. offering residential and day-treatment programs for students.

“It’s definitely my faith that has kept me going,” said McAfee. “If we wouldn’t have had that I’m not sure how we would have gotten through this. There have been people praying for us from the east to the west, from the north to the south.”’

The couple didn’t know then but they were about to face another battle.

In early October Jeff had swelling in his right knee. He had been running and thought it might be a pulled muscle. But further tests showed cancer.

“They did a FISH analysis and it showed three breakages in the DNA causing it to be very aggressive. It was triple hit lymphoma,” said Linda. Fish Cancer Diagnosis or Fluorescence in situ hybridization is a test that maps the genetic material in human cells.

He again began chemotherapy in Fort Wayne in preparation for a stem cell transplant. His oncologist referred McAfee to IU Health Simon Cancer Center and on Nov. 12, 2018 he met Dr. Jose Azar.

His course of treatment changed. Instead of a stem cell transplant, McAfee became a candidate for an innovative gene therapy known as CAR-T cell. The 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.

Under the care of Dr. Mohammad Abu Zaid he spent 11 days at IU Health and became one of the first patients at IU Health to receive the CAR-T therapy on March 25, 2019. Three months later he received the news he was hoping for, “No evidence of the disease.”

He tears up as he talks about the care he received at IU Health.

“I would say the level of care we got from the nurses and doctors was amazing. We never felt rushed with all the questions we had about CAR-T. Every doctor was willing to sit and talk and the level of communication between departments was amazing,” said McAfee. “It’s not just the nurses and doctors, it’s everyone from the receptionists to the people in the food service,” added Linda McAfee.

“I would say we are invested in IU Health,” said Jeff McAfee. “I would say IU Health is invested in you,” said his wife, adding that it will be strange not returning to the hospital.

But they already have plans. Their 45th wedding anniversary is in August and they hope to head west and ride their bikes in four more states.

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

Childhood diagnosis takes teacher to transfusion for treatment

She was diagnosed in infancy with an immune deficiency. After spending years as a patient at Riley Hospital for Children, Elizabeth Erne now seeks treatment at IU Health Simon Cancer Center.

She was less than a year old when Elizabeth Erne was diagnosed with Common Variable Immune Deficiency (CIVD).

The disorder is known to make patients more susceptible to bacteria, viruses, and infections. The diagnosis ultimately led to regular visits to Riley Hospital where Erne’s family traveled three hours from their northern Indiana home and she received eight hours of treatment every four weeks.

“My first memories were about the age of eight when I started a clinical trial. I had terrible reactions – back pain and high fever,” said Erne, a Kindergarten teacher who lives in Warsaw, Ind. “The treatments got better as I got older. It took less time and the reactions weren’t as bad.” Now she comes every two weeks to IU Health Simon Cancer Center for the infusions.

She was in the sixth grade when Erne was grocery shopping with her mom and she complained of a stomachache. It was at that time that her life was defined by more than one diagnosis.

“My stomach looked swollen I found out my spleen was enlarged and I had another diagnosis. My spleen was digesting my platelets and wasn’t letting them out,” said Erne. “I was rushed to Riley and my spleen was taken out and they gave me a port. They thought I had lymphoma and was hospital three months during the summer before seventh grade year. The diagnosis was Immune Thrombocytopenic Purpura ITP), a bleeding disorder where the immune system destroys platelets, necessary for blood to clot.

“I remember watching fireworks on the rooftop of Riley. That was one of my better memories. Riley always had such cool experiences to distract you – like visits from Colts players and racecar drivers,” said Erne. A 2014 graduate of Triton Junior-Senior High School she was in a class of about 50. She tried to remain as active as possible in school taking part in softball and National Honor Society. But her diagnosis continued. At one point she was told she had bronchiolitis, a lung infection that causes inflammation and congestion in children.

“With CIVD you learn that you get lots of other illness. You get sick over a lot of little things,” said Erne. She’s learned to live with it and her family has been there to support her – her parents Brian and Kim Erne and her older sister Nicole.

She remembers her senior year getting ready to head for the big class trip to Washington, DC. When she was diagnosed with shingles.

“I’m a history buff and was really looking forward to that trip but I pretty much spent the time in isolation,” said Erne.

After high school she went to Ball State where she pursued a teaching degree.

“Here I am someone with an immune deficiency and my doctors said teaching wasn’t the best choice, but I couldn’t deny my passion for children. So I became a germ freak,” said Erne who worked as a Kindergarten teacher. She met a marketing major named Jayden Mosier her freshman year in college.

“Once I met him he embraced my health and understood my challenges. Our sophomore year we lived one floor apart in our dorms and he helped me make good choices about taking care of myself,” said Erne. She graduated from Ball State in May of 2018 and they were engaged last November.

“He asked me on Nov. 17 to marry him. We had just adopted a beagle from the shelter and his mom was taking pictures of us for our Christmas card,” said Erne. “ It was a cold and snowy day and he asked me to marry him. Because I was outside in the cold I contracted pneumonia.” She was hospitalized for a month had two surgeries including one to remove the infection from her lung.

“I spent my birthday in December on a ventilator because the infection wasn’t clearing up. It was a scary time but in a way it really showed us what life will be like – forever,” said Erne.

And now she’s looking forward to this December. The couple will exchange vows on Dec. 21 – 16 days after her 24th birthday.

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

Then there were four . . . plus a few more

When long-time IU Health employee Ashley Cain adopted two children, her co-workers surrounded her with support.

They always knew they wanted children. But five years into their marriage Ashley and Andrew Cain learned they needed to rethink the way they would start a family of their own.

“I’ve always had a pull to adopt and then when I talked to a Department of Child Services worker, I knew it was the right choice,” said Ashley Cain, who has worked at IU Health for 11 years. She asked her husband out on their first date to Starbucks and they will be married 11 years in August.

Once they made the decision to become foster parents they got their first phone call for placement hours after receiving their license in March 2017. A month later a boy named Elijah and a girl named Mariah entered their home and forever changed their lives.

At the time, Ashley was working in IU Health Homecare and her co-workers organized a baby shower to help the couple get ready for the new arrivals.

“I was blessed with cribs, beds, linens, just about everything we needed to welcome the kids into our home,” said Ashley. Coworkers donated other items that they no longer needed.

Fast-forward two years – Ashley is working as an account coordinator for Commercial Health Plans when she and Andrew complete the adoption of the children. Again, her IU Health coworkers offered their support.

“Ashley is a coworker but she’s also a friend. We work together 40 hours a week but we also talk on weekends and evenings,” said Kelly Estridge, who organized a surprise adoption celebration with other coworkers. “Her situation intrigued me because I’ve never known anyone going through the adoption process. It was a long emotional journey for Ashley and her husband and I am glad I was there to offer support.” Estridge, along with co-worker Katelyn Williams were both in the courtroom during the adoption proceedings.

On June 3, 2019 Elijah, 4 and Mariah, 3, legally became part of the Cain family. In addition to coworkers, there were more than 40 people in the court chambers.

“The judge walked in and said ‘whoa.’ We filled up the whole lobby of the third floor at the Hamilton County Courthouse,” said Cain. The two newest additions to the family are among 13 grandchildren on Ashley’s side of the family and six on her husband’s side.

Both children have visited Cain’s coworkers at IU Health and are getting familiar with their extended family.

“Mariah is a spitfire. She’s fun. She loves to dance and do anything to make you laugh,” said Cain. “Elijah is talkative. He’s reserved but likes the attention,” said Estridge.

“I can’t say enough about the support of my IU Health coworkers. They’ve been like family,” said Cain. She added that she and her husband utilized IU Health’s adoption assistance to help pay legal fees.

“Being a foster parent is such a rewarding experience – not just for you but also for the child. I’ve also seen how it has touched the lives of others. I’ve received so much support on the job and have seen how being involved in the lives of coworkers builds morale and teamwork,” said Cain. As she was leaving her office with leftover cake from the celebration, she met another IU Health team member who asked about the party. When she mentioned the word “adoption” she learned that he, too was an adoptive parent. It struck up an instant conversation.

As a special gift from her staff, Cain received a photo session for her new family.

“Up until the adoption I wasn’t able to show any pictures of the kids. Now, we’re all about that,” said Cain. “We’re heading to Myrtle Beach in a couple months for a family vacation where the kids will see the ocean for the first time. I imagine there will be lots of pictures.”

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