NF2 Hero Nicholas Lindeback was just four years old when his parents first heard the word neurofibromatosis. The year before, when Nick was three, his parents, Peter and Angie, noticed that their toddler was walking a little funny, but they assumed their bright little boy was simply still learning to walk. Then, when the whole family went on a ski trip to Colorado, during a lesson, the ski instructor struggled to get a boot on the boy’s foot.
“That’s when we decided we needed to get him checked out,” said Peter. “We had to go to several different specialists, and nobody could tell us what was going on. Finally, a doctor’s assistant asked Nick to stick his legs out and point his toes up. His right toes came up, but his left ones didn’t.”
They told us Nick had foot drop, a difficulty in lifting the front part of the foot, which led to new tests; first, a brain scan, then a spine scan, and then an EMG (electromyography), which indicated that there was no electric current getting to the nerves in Nick’s legs. Finally, a scan of his pelvic area revealed a tumor growing on his left sciatic nerve. “And that was the first time we heard the word neurofibromatosis,” said Peter.
But Nick didn’t meet all of the diagnostic criteria to be diagnosed with NF, and it was too risky to biopsy the tumor on his sciatic nerve. All they could do was watch and wait while his foot progressively got worse.
At age seven, Nick had to undergo major reconstructive surgery on his foot, a tendon transfer procedure, which left him in a cast for an entire summer. “It was a pretty brutal experience, one of his worst surgeries – he was incapacitated for almost two months,” said Nick’s father. “But the surgery was successful in that it certainly helped his foot.”
Two years later, Nick developed some spots on his belly. They had one of them biopsied, and that was when it was confirmed that Nick had a diagnosis of neurofibromatosis type 2 (NF2), now called NF2-related schwannomatosis.
Having an official NF2 diagnosis triggered new scans, which revealed vestibular schwannomas, and tumors on the hearing nerves in both of his ears. In the years that followed, Nick had major surgery to remove a tumor on his upper spine and, shortly thereafter, surgery to remove a brain tumor, which they discovered was cancerous. Nick then had to endure six weeks of radiation therapy at Boston Massachusetts General Hospital while his sister Chloe stayed home in Arizona and away from her family.
“It’s been tough on all of us and for his sister, Chloe. We took off for Nick’s radiation therapy in Boston, and Chloe was here with just my mom, her grandmother, for two months. She had to start high school as a freshman – at a new school – without us, without the emotional support she needed from her parents. It’s been tough on her,” said Peter.
Around the age of twelve, Nick’s hearing started to deteriorate, and his doctors were concerned about the vestibular schwannoma on his right side. It was decided that he would go through the difficult procedure to have it removed.
After much waiting and many interruptions due to the COVID-19 pandemic, Nick underwent a grueling 10-and-a-half-hour procedure to take the tumor out and to receive an auditory brainstem implant, or ABI.
“We knew his hearing was suffering on the right side, but when he woke up after surgery, he couldn’t hear us, or he couldn’t understand us. Essentially, he woke up deaf. He hears some sounds now, but word recognition is zero. He’s virtually deaf,” said Peter.
Earlier this year, another MRI revealed substantial growth in a tumor in this pelvic area, which is the primary area of concern for Nick and his family right now, as well as two to three tumors in his spine. It’s only a matter of time before Nick will undergo another difficult and risky surgery.
“Right now, we’re just waiting,” said Peter. “Given what he’s been through this year, one of the goals right now is to see if there is a way to do some medical prevention, to see if we can delay surgery or give him a little more time before another surgery.
THE FAMILY BAND
Nick’s father, Peter, is an avid musician who naturally introduced his children to music at an early age. “I’ve been playing guitar since I was 13 years old,” he said, “So I put a guitar into Chloe’s hands when she was about five or six, and by the time she was around 13 or 14, she started getting into it. She has quite a knack for it.”
The Lindebacks also got Nick a drum set and had both Nick and Chloe in lessons. The talented siblings’ musical skills progressed quite rapidly, so the family started playing songs together and recording videos to post on Facebook and YouTube. “It was around the onset of COVID when we were all at the house and bored. We just started occasionally working on songs,” said Peter.
Now 16, Chloe has been playing in the local and regional All-Star band. Last year Chloe joined a 45-day tour, playing guitar in shows every night across the country.
Since he lost his hearing, Nick hasn’t been trying to play the drums. One evening this summer, the family went into the music room and decided to try and play a song. Peter tapped the drum beat to Nick and everyone agreed that they would all follow him.
“We were playing a Foo Fighters song. And he was holding the same drum beat constantly through the whole thing. And we got through almost the entire song, and it was a lot of fun, and Nick enjoyed it. And after everybody left, I asked him if he knew what song we were playing— and he didn’t. It was a tough thing to hear,” said Peter.
Music is just one of many difficult new things for Nick now that he has lost his hearing. He relies on technology to communicate with people and is trying to learn American Sign Language, which will take many years to master.
And then there is school. Nick’s family pursued an IEP for Nick, and he has been given some accommodations, including a paraprofessional support person, who is with him at school every day. “Academically, he’s doing quite well, better than we thought. Even though we were saying, don’t worry about grades and all that,” Peter shared.
“It’s been a long road for a young person who is only 13. Nick has had eight surgeries. He’s a total trooper. He has normal reactions that you would expect, and sometimes he gets upset about things. He has good days and bad days. He’s had days where he is depressed and struggled after he lost his hearing. He went into a depression and wanted to lay in bed all day. . . . The other thing that happened last year, right before his birthday, was our golden retriever of seven years passed. So yeah, that was … You know. Not good timing, right? Because he was such a, he wasn’t a service dog, but he was there for all of it, all the worst parts.”
To help Nick and Chloe cope with the loss of their beloved dog, Peter and Angie got their kids a batch of golden retrievers. They now have three 80-pound golden retrievers.
“They’ll lick you to death if you lay on the floor. And they’re not easy to push off. But the dogs have been a considerable part of this recovery, emotionally, because they’re always there with tails wagging.”
