Battling Bruin: Ethan

Posted April 2016

On Oct. 25, 2014, our five-month-old son, Ethan, had an MRI and results revealed he had an optic pathway glioma – that’s the medical term for a tumor in his eye canals and the front part of his brain.

We first noticed Ethan’s eyes would twitch involuntarily at times and after a little research on our own, we dismissed it as part of normal eye development. When he had his four-month check-up, our pediatrician noticed the eye movements and that his head growth had rapidly increased since his last visit. With these two contributing factors, we were referred to a neurosurgeon at Children’s Hospital Los Angeles (CHLA) for a cranial ultrasound. A cranial ultrasound is similar to a pregnancy ultrasound, but of the brain. The ultrasound images revealed a choroid plexus cyst. We were told these are fairly common, pose no threat and that a lot of people have them and never know it because they go away on their own. We were assured the fluid movement in Ethan’s head was normal and that his head size was probably genetic. An MRI was scheduled for Dec. 6 so we could be 100 percent certain our little guy was okay. The pediatric ophthalmologist at CHLA is renowned and his first available opening was not until Nov. 13, over a month away!

We wanted Ethan to be seen much sooner so we contacted the Ronald Reagan UCLA Medical Center and their first opening was not until Nov. 14! Who knew these doctors were in such high demand? Fortunately, UCLA had a cancelation and we were able to get in the following week with the department head, Dr. Demer, who is both a pediatric ophthalmologist and neurologist. He did an intensive exam and confirmed that Ethan had a form of nystagmus, a rapid involuntary movement of the eyes – a challenging developmental hurdle, but not life threatening. Upon further investigation, the doctor noted that his optic nerves appeared to be stressed and swollen, and was concerned that something in the optic chiasm might be causing the nystagmus. He felt we also needed an MRI but that it be much sooner than our Dec. 6 appointment with CHLA.

Ethan’s first MRI revealed the tumor. He was admitted that day and everything since then seems like such a blur of confusion and despair, mixed with images of doctors faces, medical equipment, and the sterile smell of the emergency room.

Ethan underwent a cranial endoscopy surgery on Oct. 29 to obtain a sample of the tumor for pathology testing. During the surgery they implanted a port under his chest for future chemotherapy treatments and also captured detailed photo images of his eyes and optic nerves for future baseline comparisons.

Instead of taking pictures in his first Halloween costume, Ethan had a spinal MRI to check for additional tumors along the spinal cord. Glioma cells commonly travel from the brain within the spinal fluid to the spinal cord. The results showed two other tiny tumors along the spinal cord. After being at CHLA for a week, Ethan received his first round of chemotherapy without any adverse reactions.

It quickly became more apparent that Ethan’s vision was not what it should be. By the end of November it was confirmed he had very little vision left and while we hoped that some would return with treatment, it could very well be permanent damage to his optic nerves caused by pressure from the tumor.

January 2014 revealed additional complications when Ethan needed to have a ventriculoperitoneal shunt placed to help drain the fluid from his brain and a nasogastric tube so we could feed him with a tube directly into his stomach. We got to go home after five days and they brought us our own fancy pump to do his tube feedings at home. The tube feedings continued for about three months and then we were able to wean Ethan off and remove the tube, though he did need to receive feeding therapy until he got up to speed with his eating.

Through our contact at the Braille Institute, we were put in touch with the early start program through our school district and Ethan began receiving physical therapy (he was very behind in crawling and walking) twice a week as well as orientation and mobility therapy for his vision. Chemotherapy continued until the doctors decided his tumor was stable enough to stop treatment. Ethan continues to have MRIs every three or four months to monitor his tumor, it has remained stable. His physical therapy has continued and he has made great progress with getting around. Ethan’s orientation and mobility therapist has recently started introducing him to using a cane to help him navigate the world.

Our family and friends have always been Bruin fans. We are forever grateful to the Ronald Reagan UCLA Medical Center and Dr. Demer for being a part of Ethan’s journey.

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