Emily’s Stage 4 Burkitt Non-Hodgkin Lymphoma Story
Emily, from Richmond, VA, was diagnosed with stage 4 Burkitt non-Hodgkin lymphoma in November 2022.
Interviewed by: Nikki Murphy
Edited by: Chris Sanchez
Emily’s journey began with unexplained symptoms, including prolonged sickness, speech changes, and an inability to stick her tongue out straight. Initially, doctors misdiagnosed her with Eagle syndrome and anxiety. She also experienced night sweats, petechiae, and severe weakness, but struggled to find a diagnosis until an ENT referred her to palliative care, urging immediate action.
Emily visited the ER, where specialists quickly recognized the severity of her condition. A lymph node biopsy confirmed stage 4 Burkitt lymphoma, affecting her bone marrow, spleen, and central nervous system. She was also found to have hemophagocytic lymphohistiocytosis (HLH).
Emily began aggressive treatment involving 6 rounds of chemotherapy. Chemotherapy caused severe side effects, including mucositis, rapid weight loss, and extreme fatigue. Despite the challenges, Emily remained determined, knowing the transplant could cure both her cancer and HLH.
In May 2023, Emily underwent an autologous stem cell transplant. Afterwards, she endured an intense isolation period, followed by extensive physical therapy to regain strength and mobility. By August, scans confirmed remission, yet Emily found survivorship mentally and emotionally taxing. Returning to her job in special education only 4-5 months post-transplant proved difficult, as her immune system remained compromised. She continues to manage her health with frequent medical appointments, immunotherapy, and physical recovery.
Emily’s journey was not without complications. For instance, she suffered a small stroke during treatment, caused by an oversight in managing her blood thinners. Despite the challenges she faced, she emphasizes the crucial role of self-advocacy, community support, and compassionate medical professionals, particularly her nurses, who provided emotional and practical support during her hospitalization.
Emily actively raises awareness about young adults facing late or misdiagnoses, stressing the need for better medical attention for this demographic. She also highlights the impact of genetic factors and Epstein-Barr virus on her cancer, urging the importance of thorough family history and testing.
Now, Emily finds healing through therapy, volunteering at an animal shelter, and reintroducing physical activity. She plans to explore trauma-focused therapies like eye movement desensitization and reprocessing (EMDR) therapy and continues to engage with online communities for support, including on Instagram. While the fear of relapse lingers, Emily focuses on building a new normal and empowering others to advocate for their health and seek community connections during and after treatment.
- Name:
- Emily S.
- Age at Diagnosis:
- 28
- Diagnosis:
- Burkitt non-Hodgkin lymphoma
- Staging:
- Stage 4
- Initial Symptoms:
- Constant fatigue
- Tongue deviated to the left
- Abscess in right breast
- Petechiae on legs
- Night sweats
- Nausea and vomiting
- Persistent cough
- Treatment:
- Chemotherapy
- Stem cell transplant
- Immunotherapy
This interview has been edited for clarity. This is not medical advice. Please consult with your healthcare provider to make treatment decisions.
Inspired by Emily's story?
Share your story, too!
Related Cancer Stories
More Burkitt Non-Hodgkin Lymphoma Stories
Erin R., Diffuse Large B-Cell Lymphoma (DLBCL) & Burkitt Lymphoma, Stage 4
Symptoms: Lower abdominal pain, blood in stool, loss of appetite
Treatments: Chemotherapy (Part A: R-CHOP, HCVAD, Part B: Methotrexate, Rituxan, Cytarabine)
Emily S., Burkitt Non-Hodgkin Lymphoma, Stage 4
Initial Symptoms: Constant fatigue, tongue deviated to the left, abscess in right breast, petechiae on legs, night sweats, nausea and vomiting, persistent cough
Treatment: Chemotherapy, stem cell transplant, immunotherapy
Ashlee K., Burkitt Lymphoma, Stage 4
Symptoms: Abdominal pain, night sweats, visible mass in the abdomen
Treatments: Surgery (partial colectomy to removed 14 inches of intestine), chemotherapy