A delayed diagnosis of rhabdomyosarcoma complicates a young woman’s first year of college
The pain and discomfort persisted and Aaliyah soon found it difficult to eat certain foods. Due to COVID-19, Aaliyah had to wait until things reopened to seek medical care. Finally, in the summer of 2020, Aaliyah visited her dentist. The dentist assumed it was an infection and prescribed her antibiotics. After trying the antibiotics for two weeks, with no change to the jaw pain, Aaliyah was referred to an oral maxillofacial surgeon. The oral surgeon ordered a CT Scan and several x-rays. The CT scan showed a thyroid-related issue but nothing clearly linked to her jaw. He did notice that Aaliyah had a limited mouth opening and gave her jaw exercises with tongue depressors to help with that. Even after doing the jaw exercises, the pain and discomfort remained.
After hearing that she also has trismus, Aaliyah researched possible medical conditions and figured she might have a temporomandibular joint (TMJ) disorder. Aaliyah then went to her pediatrician and told him about her symptoms. Her pediatrician told her to do some jaw exercises and suggested that the pain will eventually go away. She saw an otolaryngologist who also told Aaliyah to do various jaw exercises. However, the pain and discomfort persisted.
Aaliyah and her parents found another oral maxillofacial surgeon. This doctor ordered an MRI with contrast; however, the MRI technician questioned it. This led to Aaliyah getting an MRI without contrast and anything significantly detectable was overlooked. However, the doctor noticed that Aaliyah’s right mandibular condyle was significantly smaller than the left, and her jaw was stuck, but no further investigation was done. Aaliyah was referred to another oral maxillofacial surgeon that specializes in TMJ disorders in December 2020. After more than a year trying to alleviate her jaw pain, Aaliyah had to revert to a soft food diet because of the worsened trismus.
On January 6th, 2021, Aaliyah had an arthrocentesis done. At first, Aaliyah saw some improvement, but then the pain remained and the mouth opening never widened. Botox and other injections were used in order to get Aaliyah’s mouth to open, but nothing worked. By this point, a high school senior, Aaliyah was unable to sleep more than a few hours each night due to severe pain and headaches. On April 15, 2021, Aaliyah had surgery to remove tissue from her jaw and replace it with fat in hopes to keep it from being stuck. Following surgery, neck pain began and jaw pain worsened. At this point, Aaliyah started to see a chiropractor. The chiropractor upon evaluating Aaliyah noticed that Aaliyah had significant trauma to her neck and back despite never being in an accident. After working with the chiropractor, the neck pain got better, but back pain began.
By early summer of 2021, Aaliyah began to focus on attending college. Following another arthrocentesis in July, Aaliyah was advised to have a temporomandibular joint replacement surgery in December, more than six months away. On August 18, 2021, Aaliyah left for the University of Pittsburgh. She studied through the pain and relied on her roommate to assist with the simplest of tasks. The pain continued. While at Pitt, she briefly saw a chiropractor who was helping with back pain management, but still the pain remained. Many nights, Aaliyah would call her mother in the middle of the night to work through the pain and worry.
Around this same time, one of the implant technicians reviewing her scans in preparation for the December implant questioned whether there was a tumor in her jaw. While others dismissed the tumor, Aaliyah’s mother, Louneta, pursued this observation and asked for the surgeon to look into the area.
Finally, an MRI with contrast was scheduled for September 25, 2021. Aaliyah came home from Pittsburgh for the scan. The oral maxillofacial surgeon met with the family the following day and shared a potential diagnosis of sarcoma in her jaw.
The maxillofacial surgeon outlined three potential treatment centers, one of which included treatment at Georgetown University Hospital. Given that Aaliyah’s father Robert works at Georgetown Hospital, they decided to pursue treatment there. Thankfully, two days later, the family was able to meet with Jeffrey Toretsky, M.D., who immediately created a treatment plan. To alleviate Aaliyah’s pain, Dr. Toretsky prescribed medications, provided her with a back brace and then ordered a pet scan and biopsy. A couple of days later, Aaliyah received a diagnosis of Stage IV Rhabdomyosarcoma. The cancer which originated in the jaw had now spread to the brain, lungs, liver, spine and other bones.
Aaliyah did not return to the University of Pittsburgh as her treatment began right away.
Between Fall 2021 to Spring 2022, Aaliyah endured eight rounds of chemotherapy and 33 days of radiation. She has experienced incredible improvement and the tumors have already shrunk. Aaliyah is grateful to God for protecting her and giving her Dr. Toretsky and the awesome team at Georgetown University Hospital.
In June 2022, she and her family joined CCF and local oncology researchers and others at the annual CCF Research Symposium to share her story.
A video of her presentation about her journey can be found here.
In addition to being a student, Aaliyah enjoys music and plays three instruments, including the piano, violin, and saxophone.
Ever since Aaliyah was in elementary school, she wanted to become a pediatric oncologist. This experience has confirmed Aaliyah’s passion for cancer research and she aspires to be an oncologist — as good as the ones she currently sees.
Children’s Cancer Foundation (CCF)is thankful that Aaliyah is under the care of Dr. Toretsky. We’re grateful for her bravery and willingness to share her difficult journey to reach an accurate diagnosis, which took far too long.
The reality is that pediatric cancer is often overlooked and young patients can go for months, or even years, suffering or feeling dismissed. Aaliyah’s pain and symptoms were very real and, yet, it took over a year and a half to receive a correct diagnosis.
January 2023 Update
With tremendous heartbreak, CCF shares that Aaliyah lost her courageous fight with rhabdomyosarcoma on December 23, 2022. We have no words, other than we are shattered. Our thoughts are with the Beckles Family. This loss is unacceptable and motivates CCF to continue our mission in raising critical funds to ensure that treatments are available.
August 2024 Update
The Beckles family launched “Alive for Aaliyah” last year to continue her legacy. They are presently organizing a fundraiser where an anonymous donor will be matching every donation in her honor up to $10,000. Read more…
Her sister made this tribute to Aaliyah in honor of this fundraiser.
