Ewing Sarcoma in the Brain: Jake's Story

When 2-year-old Jake Honig woke from surgery on Aug. 4, 2012, he had an immediate request: pancakes and juice. His words were some of the sweetest his parents, Mike and Janet, had ever heard.

The previous seven hours had been a tense time of waiting as Jake had a tumor removed from his brain at The Children's Hospital of Philadelphia (CHOP). To hear him speak right away was a great joy, and over the next eight months, as he went through a difficult treatment regimen for a rare pediatric cancer, their son continued to show a resilience they found inspiring.

jakeJake had seemed in perfect health until July 2012, when something strange began to happen: For 12 straight days, he vomited one time between 6 and 8 p.m.

“We couldn’t figure out what it was,” Mike recalls. The Honigs took Jake to his pediatrician and the emergency room of their local hospital several times. Doctors suggested acid reflux or food poisoning. An ultrasound of his stomach showed nothing.

On the twelfth day, after Jake vomited, something even scarier happened.

“He grabbed the back of his head and went to the floor,” Mike remembers. Jake was unresponsive until they arrived at the emergency room, when he regained consciousness.

Doctors ordered a CT scan and then came in with terrible news: CT showed a tumor in the lower right quadrant of Jake’s brain. The doctors recommended he be transferred to CHOP.

Searching for answers 

“We went into panic mode,” Mike recalls. During a time of confusion and fear, an ambulance arrived and carried them to CHOP. It was the night of Aug. 3, 2012. Jake was immediately admitted to the Pediatric Intensive Care Unit (PICU).

“When we got to CHOP, everybody was just so calm,” Mike recalls, “and we felt like were in such great hands. It was such a relief, because the hours prior to that were just chaos.”

The Cancer Center at CHOP is home to one of the world’s largest, most skilled teams of oncologists and surgeons with expertise in pediatric brain tumors. They are leaders in patient care, and in research into the causes of pediatric brain tumors. Patients travel from around the world to be treated by this team.

Jake’s doctors explained his symptoms: Tumors sometimes cause vomiting at the same time each day because they can impede the passage of cerebral spinal fluid through the brain, causing pressure to build. This can be temporarily relieved, at regular intervals, by vomiting. This build-up of fluid can also cause loss of consciousness.

The next day, after an MRI study to accurately map the tumor’s location, neurosurgeon Phillip Storm, MD, operated, and was able to remove all of the tumor.

Tumor was Ewing sarcoma

After the surgery, Jake’s tumor was diagnosed as Ewing sarcoma, a type of cancer rarely found in the brain; more often it appears in the bones of the legs and arms.

A few weeks after his surgery, Jake began the next phase of intense treatment.

From September 2012 through April 2013, the Honigs made the 90-minute trip from their home in Howell, NJ, to CHOP dozens of times, as Jake was in and out of the Hospital for rounds of chemotherapy and proton radiation therapy.

CHOP is one of just a few hospitals to offer proton therapy specifically for children — this extremely precise form of radiation destroys tumor cells, while causing less damage to surrounding tissue. It is particularly valuable for treating tumors of the head because it can spare brain function that may be damaged by traditional radiation.

The treatment was exhausting. “It really wore him and us down,” Mike remembers.

The Cancer Center staff, including his primary oncologist, Angela Sievert, MD, MPH, helped keep Jake and his family going.

“We would get home sometimes after a five-day stay and he would say ‘I want to go back to the doctor’s house,’” Mike says. “The nurses, the doctors, the cleaning crew, the child life specialists, the people that bring the food, the whole place was amazing. We were blown away by their ability to make the patients feel comfortable, and we truly feel that had a major impact on Jake’s recovery and having him get well so fast.”

Long-term follow-up care

The first week in April marked the end of Jake’s chemotherapy. But not the end of Jake’s care at CHOP. The Cancer Center team will provide long-term follow-up, including regular brain MRI studies for at least the next four years. Because treatment for brain tumors can affect cognitive skills, a team of psychologists will monitor Jake to ensure he gets help right away if needed.

Jake has returned to health and home with enthusiasm, delighting his parents and little sister, Gianna.

“He’s doing fantastic,” Mike says. “He loves to be outside, throw the basketball around and kick the soccer ball. He loves any form of transportation — airplanes, cars. He’s up for anything these days. He’s just happy to be a typical 3-year-old.”

Jake was selected as a Patient Ambassador for the 2013 Four Seasons Parkway Run & Walk. This annual event raises funds to support pediatric cancer research at CHOP, including studies of brain tumors that affect kids like Jake.