Practitioners twice-misdiagnosed Jenise Bohbrink. Her cancer is so rare that it went undetected. Now she’s a patient at IU Health undergoing a bone marrow transplant.
It was a month packed with activity – a surprise 40th
birthday party for her husband, her children’s birthdays, the 25th
Anniversary of the Brown County Community Foundation where she worked as a development program assistant.
Cancer was one of the last words Jenise Bohbrink wanted to hear in September of 2018. Friends and family members know Bohbrink as a giver. She’s served as a volunteer for the Brown County Literacy Coalition, and the Brown County weekend backpack food program, and a Sunday school teacher at Nashville United Methodist Church.
Even when she first learned of her diagnosis her thoughts were on her family. How would she tell them? Even more disturbing than the word “cancer” was the full diagnosis: Primary cutaneous gamma delta T-Cell Lymphoma. Some researchers indicate fewer than 100 cases of the rare skin cancer have been reported worldwide.
For Bohbrink, the symptoms were typical of the cases that are misdiagnosed.
“I live in the woods so when spots appeared on my legs, we thought they were bug bites,” said Bohbrink who married Brent Bohbrink May 28, 2011. They have two children Averi, 6 and Owen, 4. The family lives in Morgantown, Ind.
When the spots didn’t go away she visited her dermatologist. The first diagnosis was Lupus. Then came the diagnosis of Lyme disease. Her biopsy results were then sent to multiple labs for confirmation of the T-Cell Lymphoma.
“Once we had more information we went for a walk around the pasture and I told my husband we need to tell our families in person,” said Bohbrink. So they headed to Fort Wayne to meet her parents via Danville to meet Brent’s family.
In a journal, Bohbrink wrote: “Neither Brent nor I slept. Tears . . . fear. . . worry . . . scared – all the emotions were there but there was also peace about the situation. . . Got will take care of us.”
Within a matter of days she was referred to IU Health hematologist/oncologist Dr. Michael Robertson and her schedule was filled with appointments – including a CT of her chest, abdomen and pelvis, and surgery to place her port (that she nicknamed “Casanova.”) The CT came back clear and she began chemotherapy on September 17, 2018.
Throughout her treatment, Bohbrink managed to maintain a sense of humor. She referred to the stage of losing her hair as “a visit by Cousin It from the Adam’s family.” She let her kids shave her head. After starting her second round of chemo, she wore a wig and dressed up with her husband and kids in Super Hero costumes to celebrate Halloween. She also wrote a blog entry on the “benefits to being bald due to chemo” that included: “Huge savings on shampoo and conditioner,” and “Halloween wigs fit better.”
In November, a PET scan showed the cancer was gone from her legs. She moved forward with the fifth and sixth rounds of chemo and began meeting with the transplant team at IU Health to discuss her preventative stem cell transfusion.
She finished chemotherapy on Dec. 31, 2018 and started the New Year with the words she had waited to hear: “You are in complete remission.”
On April 23, under the care of Dr. Sherif S. Farag, Bohbrink was admitted to IU Health University Hospital to prepare for the countdown to her stem cell transplant. Both of her brothers Travis and Aaron Platt were haploidentical donors. Travis was chosen as the Bohbrink’s donor and April 29 became her “cell-ebration day.”
Just days before her release on May 21, Bohbrink talked about the support she received from her transplant and oncology doctors and nurses. She praised her family – parents John and Marilyn Platt, her brothers and sister, Jonell Malcomb and friends from her church and community.
“My biggest support came from God,” said Bohbrink. When I first heard the word ‘cancer’ I was scared and I said ‘God I need you. I need your help.’ From that point on I was calm. It’s not me battling cancer; it’s me beating cancer.”
— By T.J. Banes, Journalist, IU Health.
Reach Banes via email tfender1@iuhealth.org.