Child with An Aggressive Form of Brain Cancer Becomes A Story of Hope after Proton Therapy

August Johansen
“When you hear a story of someone else’s success it helps you build your courage and strength. I think it is important to share August’s story because he deserves to have his story told.” (Erica Johansen, mother of August)
August Johansen
Brain Cancer Survivor

My name is Erica and my son August is an anomaly. August was diagnosed at 5 and a half months old with an anaplastic ependymoma, an aggressive form of brain cancer that is extremely rare in infants. The tumor was found by chance after we took August in for what we thought was a virus. During an examination, an ER physician suggested his soft spot felt firmer than expected. After a CT scan of his head, the doctor discovered a tumor was blocking the fourth ventricle of August’s brain, preventing the brain fluid from draining properly. The pressure was causing hydrocephalus and August needed to be CareFlighted to Dallas for emergency surgery to relieve the pressure. After an MRI, we were told the tumor was more extensive than anticipated.

The next Monday, August underwent a 14- to 15-hour brain surgery to debulk the tumor as much as possible. The tumor was wrapped around August’s spinal cord and brainstem, and there were a lot of potential complications. Miraculously, August tolerated surgery well and the surgeons removed a large portion of the tumor and sent it to pathology.

On August’s 6-month birthday, we received his diagnosis of anaplastic ependymoma. The diagnosis was devastating. Our physician, our neurosurgeon, and the oncologist who was brought in to consult met weekly at the hospital’s tumor board, a group of doctors who meet to discuss challenging or unusual cases. They brought August’s case to the group. Since August’s cancer was so rare in infants, a new treatment plan needed to be developed. The goal was to control the growth of the tumor until he got closer to one year old. It was then that proton therapy came up as a solution.

August immediately began an aggressive treatment schedule consisting of several rounds of chemo and intense drugs. After four treatment cycles, the doctors performed another MRI and determined that the remaining tumor was above the threshold that they felt would be beneficial for his outcomes with proton therapy.

At that point, August underwent a second brain surgery that was microscopic in nature, doing detailed work around the brainstem to remove the remaining tumor growth.

However, during that surgery August suffered a brainstem stroke, making his recovery longer than anticipated. August spent 38 days in the ICU before moving to another floor for more recovery. Once we were discharged, August was able to start proton therapy.

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August started proton therapy and continued to recover well during radiation. During the six-week course of radiation, he gained 6 pounds, started meeting milestones and began sitting up unassisted again.

And now, August is thriving.

I felt it was important to share August’s story for a number of reasons. First and foremost is that my son has overcome so much, and we want to honor that. Honor not just his resilience, but also his spirit. I also wanted to reach people interested in proton therapy or those considering it for their own children. They need to know that there is a treatment option that can help.

I want August’s story to reassure parents that there is a path forward. When you hear a story of someone else’s success, it helps you build your courage and strength. I think it is important to share August’s story because he deserves to have his story told. Our family hopes to inspire others to be proactive in seeking care.

The information included in this testimonial is based on one patient’s unique experience and is not intended to represent all patient outcomes or expectations.

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