Mikayla Bonner's family

Mikayla Bonner: A Young Life Remembered, A Legacy of Healing Through Donation

Mikayla Bonner, Donor Hero.

Mikayla was 14 when she passed away from a pulmonary embolism. 

Mikayla Bonner was bright, vibrant, had a great smile, and made friends with people who had difficulty making friends. Most of all, she made memories with her mother, Kola Atkins, and younger sisters, Mattie and Mae.

Mikayla was 14 when she passed away from a pulmonary embolism. Mom said there was “no hesitation” to make her an eye and tissue donor.

“Mikayla’s heart valves went to two babies that night that were at Children’s Mercy. So those moms got to hold their babies. Lots of her skin went to burn victims at Children’s Mercy. I find great comfort in that those moms got to hold their babies.”

Mom joined the donor registry at age 16. “I’ve always talked about organ donation with my girls and family growing up. It’s not an easy conversation, but you just work it in. This is what you do to help other people.”

Mattie and Mae followed Mikayla’s example through Girl Scouts, their love of music and helping others. “We’re able to take comfort in knowing she helped people even before she passed away, and now she’s continuing to help people. She’s being remembered in a way that I think she’d like to be remembered.”

The family shares lots of stories about Mikayla. “We won’t let her be forgotten. We still remember her.”

Summit Outlines the Crucial Relationship Between MTN and Palliative Care Providers

Midwest Transplant Network welcomed 62 attendees both in person and virtually for a Palliative Care Summit Jan. 16. The event focused on defining the role of palliative care in the organ donation process and collaborating with palliative care teams to best support families when faced with end-of-life decisions.

Additional topics included differentiating the donor process between first person authorization (FPA) and non-FPA, and an explanation of the family readiness assessment tool (FRAT). The summit was provided in partnership with MTN and Stormont Vail Health Topeka, Kan.

Palliative Care Summit image from inside MTN.

Pilot Program Results
Janelle Williamson, MS, APRN, NP-C, ACHPN, FPCN, served as the keynote speaker. Williamson is a Palliative Care Nurse Practitioner at Stormont Vail Health. She provided a review of a pilot program at Stormont Vail Health during the past year aimed at developing best practices to collaborate and include donation in end-of-life care planning conversations. Supportive data from the pilot program demonstrated improved donation outcomes with 64% of families saying yes to donation before a collaborative approach and 78% when MTN and palliative care worked as a team to support the families together.

A Doctor’s Perspective
“The summit provided compelling evidence that greater collaboration between MTN and palliative medicine provides a clear benefit for families facing donation considerations,” said Erin Khouri, DO AAEM, Saint Luke’s Physician Group, Supportive and Palliative Medicine Division.

Khouri added, “I appreciate the opportunity to share this information with my team, and to work on better supporting our MTN colleagues as we all support patients and families.”

Frontline Experiences
MTN Family Services Coordinator III, John Michael Segars, Pharm.D., shared stories from his work that fully immersed attendees in end-of-life experiences and when to begin the conversation about organ, eye and tissue donation. “You never know what to expect when you walk into a room with a family,” Segars said. “We get to know the families and learn more about their loved ones. We want to be transparent with the families and fold the donation conversation in at the right time for the family.”

The Greatest Benefit
MTN’s Hospital Services Coordinator I, Mallory Reitemeier, MSN, RN, CMSRN, said, “I think the greatest benefit of the summit was hearing Janelle’s perspective on the importance of collaboration between MTN and palliative care.”

Reitemeier said the data shows the impact a positive relationship between palliative care and MTN can have. “Hearing from a relatable, palliative clinician makes the work we’ve done impactful. I am hopeful she has inspired attendees to leverage the relationship between their palliative care teams and MTN to maximize the gift of donation.”

 

 

 

Dawn Romano from MTN.

From Cancer Survivor to Advocate: Dawn Romano’s Journey with Tissue Donation and Hope

Dawn Romano from MTN.

Tissue Donation is Lifesaving for Cancer Survivor Dawn Romano.

Dawn Romano, LCSW, LSCSW, Midwest Transplant Network Authorization Educator, shares her experience with cancer and breast reconstruction.

Dawn Romano is a clinically licensed social worker who focuses on organ and tissue donation as an Authorization Educator for Midwest Transplant Network. She joined MTN 15 years ago as a Family Services Coordinator.

Through the years Dawn has grown in her roles at MTN. “I have learned how to care for a family in their time of need and beyond,” she said.

What is the most challenging learning experience Dawn has faced? It was when she became a donor tissue recipient during her recovery from breast cancer and multiple surgeries associated with her care. She was diagnosed with an early stage of breast cancer in April 2008. She had a lumpectomy and 33 rounds of radiation. She believed she was cancer-free until life handed her another curveball in the summer of 2015.

She felt a lump on her breast but ignored it because she didn’t think it was cancer again. A mammogram and biopsies confirmed the cancer had returned and was more aggressive. The next four months included chemotherapy treatments, hair loss and discouragement. “Looking at myself after the double mastectomy was the hardest thing to see and live with.”

Becoming a Donor Tissue Recipient

Dawn and her surgeon discussed the possibility of breast reconstruction. “I wanted to do whatever it took to feel like a natural woman,” she said. “I wanted to be the healthiest version of myself that was possible.”

Reflecting on her breast reconstruction Dawn said it is an intimate and personal decision after a mastectomy. “Everyone needs to weigh the options and make their own decisions. Having breasts was important to me. I wanted to create a new normal.”

She stressed it’s important for people to know the reconstruction process is complex and takes longer than you expect. “People don’t realize it is more than a surgery,” Dawn said.

What helped Dawn was the strength she found in her faith, family and friends. “I started a blog to sort through my own emotions and thoughts. I documented the milestones and how I felt physically and emotionally,” she said. “It was also therapeutic for me to put my thoughts in writing and share it with others.”

Cancer changed Dawn’s life in many ways. “I have learned patience and grace; how strong I am and how much I am loved,” she said.

Dawn Romano speaking to MTN about her tissue gift.

Helping Others

Today, Dawn has no evidence of cancer and is driven to help others. She is now involved in educating people about cancer while supporting and mentoring individuals through the process. Her daily blog is now an October event promoting Breast Cancer Awareness Month. She also shares her story informally with people.

She was raised to be a strong woman, and Dawn has always advocated for others. Her cancer and breast reconstruction have made her stronger than ever and she offers the following advice.

“First, it’s vital not to put off having your exam done,” Dawn said. “Men and women both need to have their tests done. People are often uncomfortable getting a mammogram, but cancer is more uncomfortable than having a mammogram.”

The second point is always taking another person with you to your doctor’s appointments. “Having another person there will help you get the details you need, and they can also ask questions. When you hear the doctor say you have cancer, it’s difficult to hear anything else after that.”

A Heartfelt Thanks

Thanking her donor heroes is the most important thing for Dawn. “We often hear that tissue donation is life-enhancing, but for many of us, it has saved our lives in countless ways.”

Dawn wrote touching letters to her donor hero families and shares a few of her thoughts here: Every day when I look in the mirror I am reminded of cancer. It’s been an extremely difficult and life-changing journey. But I’m alive and I’m a fighter. And I know I’m not alone on this journey. I have an amazing support system by my side, but I also have your loved one who has become a part of this journey and fights alongside me.