Very Severe Aplastic Anemia: A mother's path from caregiver to advocate

Jodi Nelc learned the importance of knowledge and advocacy when her daughter faced a bone marrow transplant and a severe case of graft-versus-host disesase (GVHD).

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Jodi Nelc 

Neenah, Wisconsin 
Mother and Caregiver for her daughter, Victoria 
Very Severe Aplastic Anemia and Graft-versus-Host Disease 
Transplanted in 2009 
Many thanks to the American Society for Transplantation and Cellular Therapy for helping us share Jodi and Victoria’s story.  
In the course of Jodi Nelc’s life, her innate talents and gifts have been redirected and repurposed in ways she could never have foreseen. In 2009, Jodi’s daughter and young mother, Victoria, was diagnosed with severe aplastic anemia. At the time, the medical world was entirely alien to Jodi. She even remembers protesting biology class in high school because of her aversion to dissecting frogs.  
“When Victoria fell ill, I didn’t know which way to turn. I knew nothing about anything medical.”  
Ultimately, she discovered a wellspring of inner resources she initially didn’t realize she had. In law school, Jodi had learned to memorize and analyze data sets. As the mother of a seriously ill daughter, she redeployed those analytical abilities to decipher medical research.  
Later, as a public-facing patient advocate, she drew on her powers of communication to transform deeply personal loss and hard-won medical insight into a supportive online community that now serves thousands of patients and caregivers.  
From the moment of Victoria’s first symptoms, Jodi was at her side.  
By the time Victoria was correctly diagnosed, she had suffered six miscarriages and been led to believe, briefly, that she had leukemia.  
As the mother of two young sons, Victoria was fiercely determined to survive. Her sons, Max and Hunter, were just two and one years old at the time of her transplant and she was determined to protect them from her illness.  
Victoria understood intuitively that she needed, above all, to preserve her energies for healing and mothering her sons. So she deputized Jodi, saying, “I’m putting myself on a need-to-know basis, and I’ll tell you when I need to know. Your job, Mom, is to know.” Jodi took on this assignment, “to know,” as a sacred mission, educating herself as quickly and intensively as possible.  
While Jodi and Victoria remained optimistic, they felt the presence of a higher power determining Victoria’s path. Jodi recalls at one point asking Victoria, “Don’t you wonder why you?” Victoria responded, “Oh Mama, don’t ever ask that. It’s me for a reason. I think it’s because I have such a strong relationship with my Lord.”  
Victoria went on to request that, if the worst came pass, she be buried ‘up north,’ on the southern shoreline of Lake Superior, a place their family loved and returned to play together summer after summer, so that “…my boys have to go up north to see me, and they’ll love the north like I did.”  
Sadly, Victoria developed an unusually severe case of graft-versus-host disease (GVHD), a common side effect in patients transplanted with cells from a donor. She simultaneously experienced both the acute form of GVHD, which typically occurs during the first 30 days after transplant, and the chronic form of GVHD which typically occurs later, which was previously not recognized as a possibility by the medical community. After a valiant three-year struggle, she succumbed to the disease.
Along the way, Jodi not only steadfastly stuck by her daughter’s side, she continued to educate herself about GVHD. In the first few months after transplant, one of Victoria’s doctors attributed her intestinal distress to “the flu” rather than acute GVHD. Through her research, Jodi knew that Victoria was exhibiting symptoms of acute GVHD and was able to communicate that to Victoria’s doctors which altered her treatment.  
In the early days, when Victoria was first diagnosed, Jodi recalls how uplifted she and Victoria were by a Facebook page called Aplastic Anemia: Your Fight Is My Fight, run by a woman named Exie who had aplastic anemia and was seeking community. “Until that moment,” Jodi recalls, “Victoria and I were in a black tunnel with no light at the other end… Exie wrapped her arms around us and led us through the tunnel of understanding until we had enough knowledge to stand on our feet… then we too researched and learned.” 
At the onset of Victoria’s GVHD, Jodi decided to create two Facebook groups to help people who were struggling with GVHD connect and support each other. She has since created several other Facebook groups including one called GVHD Upside, a group where those living with GVHD can share positive communications because “everyone needs a break from the real hard facts and time for laughs with people who share commonalities," explains Jodi. Her newest group, Her newest group called Graft-versus-Host Bereavementlaunched November 1, 2023 on Victoria’s birthday, supports “families and loved ones who have passed due to GVHD or related complications.”  Overall, her Facebook groups have touched the lives of thousands of over 7,000 GVHD patients and caregivers worldwide.
In October of 2023, the GVHD Alliance a consortium of organizations, including BMT InfoNet, that support people living with GVHD – presented Jodi with the Meredith A. Cowden Patient Advocacy Achievement Award in recognition of her extraordinary work building community among GVHD patients and caregivers. The award honors an advocate each year “who is making a profound difference in the lives of GVHD patients.”    
The fact that Jodi’s Patient Advocacy Achievement Award was presented on October 13th has special resonance for her, as October 13th of 2009 is the date that Victoria was first diagnosed. On that very day, fourteen years prior, Jodi’s journey as a caretaker and advocate began.  
In the wake of Victoria’s life, Jodi has transformed her loss into a fuel of motherly love that touches the lives of patients and families worldwide. She’s done for hundreds of others what Exie did for her and for Victoria – offer hope through solidarity. Through her advocacy work for others, Jodi has created a legacy that honors Victoria, surely one her daughter would be enormously proud of. Jodi describes her work in beautifully simple terms: “I advocate. I seek to help people understand their newfound world and clear confusion. I love speaking for those who cannot speak for themselves…and I like to think the Holy Spirit guides people into my path.”  
Check out some of Jodi's other GVHD-related Facebook groups:
Graft-versus Host Disease : a private group for people living with GVHD
Bronchiolitis Obliterans Syndrome; a group for GVHD patients with BOS
The American Society for Transplantation and Cellular Therapy (ASTCT), formerly known as the American Society for Blood and Marrow Transplantation, is a professional society of more than 2,200 healthcare professionals and scientists from over 45 countries who are dedicated to improving the application and success of blood and marrow transplantation and related cellular therapies. ASTCT strives to be the leading organization promoting research, education, and clinical practice to deliver the best, comprehensive patient care.