Teen with bone marrow transplant shares cancer journey online

A 17-year-old documents her treatment for a rare type of lymphoma typically found in older adults

5:00 AM

Author | Beata Mostafavi

girl on left with tan hat beanie and black shirt and green writing and on right with mom smiling same outfit and matching shirts
Lizzy Rhodes and Sarah Garza. Photos courtesy of the Rhodes family

Under the social media name "sissy beats lymphoma," Alizabeth Rhodes documented the days after getting diagnosed with stage four cancer.

One video opens with a scene from her “before life,” showing the teen walking through her high school hallways with friends, her long blond hair swaying over her shoulders.

But the next series of pictures share the harder days: having a chemotherapy port placed under her skin, regular hospitalizations, trouble eating because of mouth sores and chunks of hair falling out with every brush.

“I wanted to share what I was going through to help people understand. It’s a lot harder than you think,” she said.

“I sometimes felt like giving up but realized I couldn’t. I want to tell other people to never give up.”

Now, after nearly a year of treatment and getting a successful bone marrow transplant at University of Michigan Health C.S. Mott Children’s Hospital, the 17-year-old is ready to get back to regular life.

“It was a long journey and I know I’m not finished yet,” she said. “But I’m doing good and I’m glad to be home.

“I finally got here, but I didn’t do it alone.”

An extremely rare diagnosis

Nicknamed “sissy” by her family, as the sister to two brothers, and known as “Lizzy” by her care teams, Alizabeth faced a rare aggressive type of non-Hodgkin lymphoma.

It was especially rare for her young age. Called peripheral T-cell lymphoma, the disease is most typical for older adults ages 55 to 74. 

The blood cancer develops from mature white blood cells called T-cells and natural killer cells and can affect almost every part of the body. In Alizabeth’s case, it had spread to multiple organs. 

Mott specialists reached out to peers across the country as they finalized a treatment plan. 

“Being referred to a full multidisciplinary team was really key to her case,” said Joshua Goldman, M.D., her primary pediatric oncologist at Mott.

“Lizzy had non-specific symptoms. We consulted with not only our internal oncology and pathology teams, but also with colleagues nationally to confidently reach a consensus on her condition and to help guide her treatment course. There are maybe a handful of cases like hers and no standard treatment for this specific disease for someone her age.”

The journey to becoming cancer free

Alizabeth was diagnosed in July 2023, spending most of the next several months in and out of the hospital, with intense chemotherapy treatments every few weeks that often required a weeklong hospitalization or longer. 

After nearly seven months, tests indicated that the cancer cells were gone – but she still needed a bone marrow transplant.

Typically for lymphoma, the Mott pediatric bone marrow transplant team would use a patient’s own stem cells to replace the bone marrow. But in Alizabeth’s case, there was concern about the possibility of lymphoma cells being reinfused into her body during a transplant since the cancer had also affected her bone marrow.

There are maybe a handful of cases like hers and no standard treatment for this specific disease for someone her age.” 

- Joshua Goldman, M.D.

After a final round of chemo and radiation, she received a transplant from an unrelated donor from the bone marrow registry in March 2024. 

She’s been in remission ever since and hasn’t had any return visits to the hospital.

“She’s shown extreme resiliency that has carried her through this very difficult treatment,” Goldman said.

Getting back to regular teen life

Still, life isn’t completely back to normal. Because Alizabeth remains immunocompromised, she’s had to continue to do school remotely and avoid group settings.

“This treatment is very disruptive to teenager’s lives,” said Mark Vander Lugt, M.D., a pediatric hematologist oncologist who treated Alizabeth in the Mott bone marrow transplant clinic.

“We pull them out of school for over a year, restrict a lot of activities and ask them to give up a lot. Lizzy always handled everything exceptionally well. It was nice to see how much support she had from family and friends and how she maintained these connections at the hospital through social media and other ways.”

Alizabeth says she’s grateful for her family, peers, physicians and the cheery nurses who were like “big sisters” who all supported her along the way.  

Most of all, she says, she thanks her mom for always offering strength and comfort.

“My grandma had cancer so I got really anxious and scared and just didn’t know what was going to happen,” she remembered of getting the diagnosis. 

“But my mom said ‘we’ve got this.’ She never left my side.”

Alizabeth has only been attending online classes since her diagnosis last year but hopes to have clearance to return to in-person high school by early 2025.

“She’s handled it way better than I have,” her mom, Sarah Garza, said. 

“She’s been a fighter.” 

Among the things Alizabeth is most looking forward to: Walking through her high school hallways again with her friends, hanging out in groups and getting to go to the movies.

“I like being social. That’s something I’ve missed,” she said.

And over time, she’s gained back energy to do some of her favorite activities like riding her four-wheeler and taking walks. 

“She was so worn out and tired all the time,” Garza said. 

“She’s full of energy and life again. I just want to see her live a normal teen life.”

Alizabeth isn’t sure what the future holds but hopes to someday be an entrepreneur and start her own business. 

“I can’t change any of it,” she said of getting cancer. “I’m just excited to go back to school, graduate and for the future.”

Cases like Alizabeth’s particularly highlight the need for more research in pediatric cancer, her Mott doctors say.

“Our outcomes for this diagnosis aren’t often favorable,” Vander Lugt said. “These types of cancers are very rare in pediatrics and because they’re so rare, they don’t always get studied.

“That means there are a lot of questions around what to do for children with rare malignancies that don’t behave the same way as they do in adults. Determining the most appropriate treatment course for patients like Alizabeth can be challenging because we don’t have as much information. More research on rare conditions like hers will help us find more targeted treatments that will potentially drive better outcomes.”

Learn more about supporting U-M Health C.S. Mott Children's Hospital in the fight to #BlockOutCancer

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More Articles About: C.S. Mott Children’s Hospital Children's Health Pediatric Cancer Cancer Research Cancer: Help, Diagnosis & Treatment Lymphoma Cancer: Cancer Types Bone and Marrow Transplant (BMT) Post-Transplant
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