Margaret Shepard (@margieshepard) published a blog post · December 20th, 2012
Jackson Hoeger: Family and Medical Staff Journey Together to Reach Positive Outcome
"Initially, we thought he had strep throat," says Jennifer. "At the same time, Jackson's teacher noticed a dramatic change in his handwriting, and his well-behaved and happy demeanor began to disappear."
As the symptoms persisted, Jennifer and husband Marty suspected a migraine headache or internal pressure on his eye, so brought him to a specialist. A CT scan, however, showed no visible tumor mass or abnormalities.
Jackson Suffers a Seizure
The next day, Jackson exhibited stroke-like symptoms, and was rushed to the emergency room at the University of Iowa Hospital, where he suffered a long seizure. It would be the first of many seizures he would experience in the coming weeks and months. That evening, Jackson had an MRI, but it, too, showed nothing unusual.
"Over the next few weeks, Jackson saw several doctors, all of whom had different opinions as to what was causing his symptoms," says Jennifer. "Eventually Jackson was diagnosed with what is called a pseudo tumor. A pseudotumor cerebri occurs when there are signs of increased pressure inside the head without an identifiable cause. The increased pressure affects many areas of the brain and the patient experiences severe headaches.
Medication helped ease Jackson's headaches, but his behavior became aggressive, and in March 2005, Jackson experienced another major seizure. Jackson's physician then believed he might have epilepsy. Unsatisfied with the epilepsy diagnosis, Jackson's parents traveled to Mayo Clinic for a second opinion.
Diagnosed with a Neural Ectodermal Tumor
At Mayo Clinic, Jackson underwent testing for six weeks. Finally, on May 17, he was diagnosed with a rare condition — disseminated primitive neural ectodermal tumor. "This a type of tumor where the cells are dispersed in a thin layer that covers the surfaces of the brain like a layer of frosting on top of a cake. It is difficult to detect with conventional scanning methods," says pediatric neuro-oncologist, Cynthia Wetmore, M.D., Ph.D. who began working with the family after Jackson's diagnosis.
Jackson then began his long journey to recovery. A central venous catheter was inserted to administer chemotherapy and blood transfusions. He was given morphine for pain relief, and afterwards a second dose of morphine left him temporarily paralyzed on his right side, leading to the realization that he was allergic to morphine.
During treatment, Jackson received physical therapy and occupational therapy to regain the strength he had lost on his right side, and in the summer began radiation treatments.
"All through the radiation treatments Jackson was having multiple seizures," says Jennifer. "It was a constant challenge to get the right combination of medications to keep them under control."
In June 2005, after a few radiation treatments were completed, Jackson underwent the first of two procedures to harvest peripheral blood stem cells that would help him recover from the high-dose chemotherapy he was scheduled to receive.
Working as a Team
"Throughout this whole experience, we really appreciated everyone at Mayo — we were like a team working together," says Jennifer. "They let us be part of the plan. They asked what we thought. They also made decisions by considering Jackson himself, even though those decisions might have gone against a protocol. We felt comfortable asking questions, and they went out of their way and helped us through this."
According to Dr. Wetmore, it is critical that patients who have neural ectodermal tumors be treated at a healthcare center familiar with this kind of tumor in order to receive the best treatment possible. "If a physician has not had experience with this type of tumor before, it is more difficult to diagnose and treat it properly," she says.
On the Road to Recovery
In October, Jackson began high-dosage chemotherapy infusions.
After his second treatment in November, Jackson developed a severe case of pneumonia and needed to be airlifted back to Mayo Clinic. After several days in the hospital, Jackson was once again well enough to return home.
"Over the next three months, we tried to nurse him back to health," says Jennifer. "He was weak and would have up to 20 seizures a day."
In March of 2006, Jackson and his family finally got good news — an MRI showed the tumor had not grown, and, in fact, was improving; three months later, Jackson and his family went on a Disney Cruise — courtesy of the nonprofit Make A Wish Foundation.
Playing T-Ball, Enjoying Life
Now, Jackson is in first grade and doing well — even playing on a T-ball team — and has been tumor-free for the past two years. The chance that cancer will return drops significantly after the two-year marker.
In contemplating the difficult journey Jackson has been through, Jennifer strongly believes his recovery is a miracle, and has been volunteering with the Lance Armstrong Foundation as a way to give back. She also credits Mayo Clinic staff in bringing about a positive outcome.
"Dr. Wetmore had such a wonderful sense of optimism," she says. "She told us, 'Someday, I want you to come back to share your story with another family.' We in fact did this — and I felt like we had graduated."