The Ben Brandenburg Fund for Ewing Sarcoma Research

During the Christmas break of 2019, Ben complained about occasional stiffness and mild pain in his right leg. It was more consistent and sometimes accompanied by a limp by late January. He was taken for an x-ray, and we were told that everything looked normal. However, the pain continued to increase.

Ben never complained about pain, so his mother knew something was wrong. She took him to an orthopedist who immediately saw something she didn’t like in the x-ray and sent us for MRI. We were sent down to Johns Hopkins immediately after the MRI as it showed a significant growth on Ben’s right hip. 

At Johns Hopkins, they indicated that it was most likely a malignancy and probably a type of cancer called Ewing Sarcoma. A battery of scans and a biopsy confirmed the suspicion; a central line was installed for chemotherapy and thus began the whirlwind of cancer treatments.

Ben went through 14 rounds of chemotherapy and 25 rounds of proton radiation. His tumor responded very well, but we decided on surgery as the best course of action to remove the cancer. He had an internal hemipelvectomy in September of 2020, a massive surgery that removed the bulk of his right hip and hip socket and built an artificial hip socket out of scar tissue (flail hip), which required three months of non-weight bearing. The week of Thanksgiving 2020, Ben’s treatments were finished; we were thankful indeed!

Ewings patients are monitored closely post-therapy, and his initial scans in the first week of March 2021 showed a small nodule in his right lung. A follow-up scan six weeks later confirmed our worst fear; his cancer had returned.

Ben enrolled in a trial at the Dana-Farber Cancer Institute. We spent the bulk of the summer in Boston, and while it was not the most enjoyable of circumstances, Ben really enjoyed his time in the city. We had four treatment cycles in Boston, and his tumors responded very favorably. He was released from the trial officially but returned to Baltimore to continue the therapy and start high school. 

In Baltimore, he continued the same treatment and began radiation therapy. We had another set of scans the week of Thanksgiving, showing that his disease was stable. At this point, Ben had something on the order of twenty rounds of chemotherapy, 35 days of radiation, and surgery that removed his tumor but also a large portion of his bone marrow. As such, he had an increasingly difficult time recovering from the toxic effects of his therapy. We intended to have another round of chemotherapy in mid-December, but his counts didn’t recover. Instead of pushing ahead with another round of chemotherapy in late December and risking delays to radiation therapy in January, we elected to hold the chemotherapy. His initial scan at the start of radiation still looked good, but he had a cough, and it worsened throughout the radiation treatments. During the second week of treatment, there appeared to be “something” on the scan, and a CT was ordered. It showed a multitude of tumors throughout his lungs and in his lymph node near his right bronchi, pushing in on his airway. His right lung was also partially collapsed. 

We halted his trial therapy and regrouped. While in Boston, they sequenced the DNA of his tumor and identified that it would likely respond to a drug called Palbociclib, so we tried that treatment. To help improve the situation in his lungs, he also had a stent put in to open his airway. They took a biopsy during that procedure, and all of the tumor tissue came back necrotic. We were hopeful that we found a treatment that would cure him. We continued another round of that therapy and scheduled a PET scan to see how he was responding. While the cancer was responding extremely well in some areas, regrettably, it continued to grow and spread in others. His disease had mutated.

We looked into other trials, but while he was waiting for some required wash-out periods, his health continued to decline. Fluid built up around his lungs, and he was hospitalized for observation. A number of interventions ultimately proved fruitless, and he passed away on March 27, 2022

While there are countless things we’d change in hindsight, it’s not clear that anything would have changed the result. What is very clear is much work needs to be done to improve outcomes for children and young adults who are diagnosed with Ewing Sarcoma. Ben’s fund will focus on a few key areas. First, early detection and awareness. Too often, Ewing Sarcoma is confused with growing pains or “dings” from sports or just kids being kids. Given how rare this disease is, that assumption is almost always correct, but the results are devastating when it isn’t. Knowing the signs and having the tools to discover ES early while it is more likely to have a favorable outcome are key. Developing tools to understand the origins of ES and being able to replicate it in a lab setting to accelerate testing and treatment is critical. Third, a better understanding of the genomics of the patient and the disease and how they change and react to therapy will provide vital insights into treatment paradigms. A “standard” treatment may not be appropriate for patients with certain mutations. Fourth, research into better therapies that are more effective and ideally less toxic will be necessary to improve outcomes for patients. The Ben Brandenburg Fund for Ewing Sarcoma Research will be a lasting legacy to Ben’s memory and will continue to fight this horrid disease so that fewer children will have to suffer from Ewing Sarcoma.