Boy battles rare brain disorder

An inspirational story about a young man battling a rare brain disorder

It’s often inspiring to meet parents who have done just about everything they could for a child with a rare and complicated health condition. Geneva and Mike Barone are such parents. Their 15-year-old son, Noah, has a condition that has left a slew of doctors with years of expertise scratching their heads.

Since 2006, Noah, a vibrant and witty young man, has been living with an inflammatory pseudotumor (IPT) in his brain. IPTs are benign lesions that can affect all organ systems but originate in the central nervous system. They act much like a tumor.

Noah’s symptoms began with restricted movement in his eyes. Living in Iowa at the time, he underwent a magnetic resonance imaging (MRI) test, which showed multiple lesions within the area of his skull where his eyes are and near his carotid arteries, located in the neck, among other areas.

A biopsy was performed to test the lesions, which led to Noah’s diagnosis of IPT, a condition that is inoperable.

To further complicate things, the Barone family was in the process of moving to Louisville after a job transfer. As Noah’s health issues progressed, he began experiencing intense migraine headaches.

Salvatore J. Bertolone, M.D., pediatric hematologist and oncologist at Norton Children’s Hospital and U of L Physicians – Pediatric Cancer & Blood Diseases, was the first doctor Noah began seeing after the family’s move to Louisville. Dr. Bertolone sent Noah to an ophthalmologist, who performed surgery to improve his eyesight, and started Noah on steroids to further improve function in his eyes and relieve his migraines.

“Noah’s eyes responded immediately once on the steroids,” Geneva said. “Unfortunately, the steroids were just a short-term fix.”

Noah was on steroids for close to a year until he experienced a seizure episode while running at school. Geneva frantically called Dr. Bertolone, who immediately got Noah an appointment with Vinay Puri, M.D., a pediatric neurologist with Norton Children’s Hospital and U of L Physicians – Child Neurology.

Dr. Puri recommended high-dose steroids to combat Noah’s low energy, balance and mobility. This required Noah to have a port placed beneath his skin to make it less painful to receive frequent steroid injections.

“Noah experienced a lot of anxiety and sadness during this time,” Geneva said. “It’s just not something you ever want to see your child go through at such a young age.”

In 2011, Noah began chemotherapy as his mobility, breathing and eating became difficult because his brain stem wasn’t functioning properly.

“We tried four or five different types of chemotherapy and didn’t really receive good responses from them,” Geneva said. “While Noah’s tumor wasn’t cancer, it was the only way his doctors knew how to treat the IPT because they had never seen anything like it.”

Noah’s condition was further complicated by his body producing too many white blood cells, which largely control the immune system. The production of too many of these cells causes Noah’s immune system to run into overdrive.

The next step in treating the IPT was meeting with a radiation oncologist. In April 2012, Noah received his first whole brain radiation treatment.

Geneva remembers Dr. Bertolone suggesting this route so if there were any “rogue soldiers,” or cells that cause the IPT to grow, they could kill them all at one time. The whole brain radiation turned out to be a success by shrinking some of the areas of the PT, which significantly improved Noah’s ability to breathe and eat.

Dr. Bertolone continued to research treatment options and found a chemotherapy-type drug called Revlimid, which is used to treat inflammatory disorders and various cancers.

Revlimid is a derivative of thalidomide, which has been successful in fighting malignant adult cancers. This specific type of chemotherapy has direct effects on tumors, decreases blood vessel growth, and causes clots and anti-inflammatory responses.

Beginning in June 2014, Noah took Revlimid by mouth for 21 days, then was treated with VP-16, another chemotherapy drug, for the next three days.

“After these treatments, Noah saw improvement in just a week’s time,” Geneva said. “His speech is better, his whole body is more mobile and he has more energy. Before we started this treatment, Noah was in a wheelchair. Now he is able to move using a walker.”

According to Geneva, the doctors at Norton Children’s Hospital have taken into account Noah’s quality of life when recommending treatments and courses of action to make his life better.

Currently, Noah returns to Norton Children’s Hospital for regular checkups.

“Noah’s doctors have been ecstatic about his progress,” Geneva said. “Since being on this course of treatment, there has been moderate to major reduction in the lesions in his brain.

“God has taken care of us, and I feel we’ve been put into this situation for a reason. We try to keep a positive outlook instead of having gloomy days. Noah has been such a trouper and is learning to appreciate each and every day for what it is.”


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