The sun is surprisingly bright for an April afternoon in the Northwest. The sun’s rays pour through tall windows in the living room, flooding the Jhaveri home with natural light.
Ashley tucks herself into the plush tan couch, one leg curled beneath her body.
She arrived home earlier that afternoon. She took a seven-hour train ride from Cheney, where she’s studying graphic design at Eastern Washington University, to visit her family for the weekend.
As she sits in the quiet house, she strums the strings of her guitar. Akhil asked his oldest daughter to play a song for him. Music is how the pair has always bonded.
Ashley’s voice fills the room.
This is the calming before the storm.
This absolution is always incomplete.
It’s always bittersweet.
Jordan — the youngest of the three Jhaveri girls — plops down next to Ashley. The pair begin to sing another song.
Off to the side sits Akhil. His face lights up as his girls sing. A wide smile spreads across his face. He beams with pride.
In the past, Akhil might have joined in, belting out lyrics with his children. He might have picked up his own guitar and played alongside them. Or he might have danced on the floor in front of them.
But today, all Akhil can do is smile and sing the lyrics in his head. Years ago, ALS robbed Akhil of his ability to sing. The disease also stole Akhil’s ability to walk or even move his legs.
Akhil, 49, slowly begins to speak, his voice breathless, his speech fragmented and often unintelligible to those who don’t see him regularly. He has a song request.
It’s the first song Ashley learned to sing and play on her guitar. She was just 13 years old. Akhil taught her the chords.
So make the best of this test, and don’t ask why,
It’s not a question, but a lesson learned in time.
It’s something unpredictable, but in the end is right,
I hope you had the time of your life.
Living with MS
ALS, or amyotrophic lateral sclerosis, wasn’t the first disease diagnosis the Jhaveri family had to weather.
In 2000, while the family was living in Dallas, Akhil was diagnosed with multiple sclerosis. The diagnosis meant Akhil, then in his mid-30s, was facing a future with a potentially debilitating disease. Akhil’s immune system was attacking his nervous system. Eventually, the attack can damage nerve fibers, distorting nerve impulses traveling to and from the brain and spinal cord.
But the Jhaveri family took the diagnosis in stride. Akhil went on medication. The family moved forward.
“We didn’t probably take it very seriously,” said Akhil’s wife, Laura. “People live long, relatively normal lives with it.”
“After that diagnosis, life went on like normal,” she said.
Akhil occasionally had difficulty walking. He stumbled when he tried to run alongside Jordan while teaching her to ride her first bike.
The girls grew older. Laura home-schooled her children while Akhil worked as an electrical engineer. In October 2009, Akhil took a job as a department manager at Power Testing & Energization in Vancouver.
In March 2011, Laura began to notice Akhil was having more difficulty walking. His speech began to slur — a new symptom. Akhil, an avid cyclist, began to notice a tingling sensation throughout his body, particularly in his legs.
“I was hoping it was my multiple sclerosis,” Akhil said. “Funny when you want multiple sclerosis as your diagnosis.”
But in July 2011, Akhil and his family learned it wasn’t just Akhil’s multiple sclerosis flaring up. Akhil had ALS.
“That was a devastating diagnosis,” Laura said.
Laura and Akhil soon realized life would never be the same.
ALS, commonly known as Lou Gehrig’s Disease, is a progressive neurodegenerative disease that affects nerve cells in the brain and spinal cord. The disease causes nerve cells to gradually break down and die, leading people with ALS to lose the ability to control the muscles needed to move, speak, eat and breathe.
There is no cure.
Telling the girls
Initially, Laura was convinced Akhil and the family would overcome the diagnosis. They got through the MS diagnosis. This, she thought, couldn’t be much different. The more she learned about the disease, though, the clearer the impact of the diagnosis became.
Laura and Akhil first sat down with Ashley and Jordan to break the news. Their middle daughter, Corinne, was out of town at summer camp.
“That was difficult,” Laura said. “We told them straight up: It’s a terminal disease and typically the patients don’t live very long. We need to enjoy the time we have.”
What is ALS?
ALS, or amyotrophic lateral sclerosis, is a progressive neurodegenerative disease that affects nerve cells in the brain and spinal cord. The disease causes nerve cells to gradually break down and die, leading people with ALS to lose the ability to control the muscles needed to move, speak, eat and breathe. There is no cure.
Ashley sat in shock. Then, disbelief.
Ashley had been trying to decide whether to head to college or take a year off after high school. The diagnosis only complicated matters.
“I knew that I wanted to go to college, but I knew with my dad having this terminal illness, that if I left for a year, things might be a lot different,” Ashley said.
Ashley had already been accepted to the University of Washington, but she decided to defer her enrollment.
“I didn’t want to leave my family,” she said. “I didn’t know what my dad would be like.”
When Corinne returned from camp, Akhil and Laura told her.
Corinne’s first reaction was denial. She didn’t see changes in her dad. Surely her parents were wrong. She broke down into tears when they assured Corinne the diagnosis was correct.
Akhil and Laura had arranged for the girls to talk to grief counselors. Corinne didn’t want anything to do with them.
She was sad, but she wanted to process the life-changing news on her own.
Jordan was just 11 years old when Akhil was diagnosed. She had never heard of ALS, but she knew the news wasn’t good.
She was heartbroken.
“The only part I understood was the prognosis of six months to however long,” she said.
“What am I going to do?” she remembers thinking. “What am I going to do if my dad dies?”
“The only part I understood was the prognosis of six months to however long. What am I going to do? What am I going to do if my dad dies?” Jordan Jhaveri
At first, Akhil seemed to be doing OK physically. He would stumble from time to time, and his speech would sometimes be slurred. Eventually, as his coordination began to slide, Akhil started using a walker and wore leg braces.
Still, Akhil was able to get around and continued to work.
In November 2012, Akhil fell while in his office. He tried to work from home, but by December, Akhil went on disability and retired from his engineering career.
At the time, Laura was still home-schooling Jordan. She enjoyed teaching her daughter but realized she needed to give it up in order to support her family. So, she started her own business.
After months of planning, Laura launched Killa Bites, a sweets business that specializes in bite-sized cakes, called Cake Bombs, in October 2013. Not long after, Laura recruited Donna Suomi, who had experience making biscotti, to be her business partner. Killa Bites products, which also include gourmet popcorn, are now sold in stores, restaurants, wineries and coffee shops across the county.
The disease progressed steadily. Before long, Akhil could no longer walk. He couldn’t move his arms. His speech became less intelligible.
As Akhil’s diaphragm muscle slowly dies, his breathing has become more labored. His breaths are more shallow, making talking more difficult. Akhil can still speak, but his sentences are fragmented, broken by pauses after every couple of words so Akhil can catch his breath. And those who aren’t around Akhil regularly often have difficulty understanding him.
Though Akhil’s physical condition had deteriorated significantly in the two years since he left his career, his general health remained steady.
That, too, was about to change.
Akhil in crisis
In late 2014, as fall began to fade into winter, Akhil was hospitalized with breathing issues. After he was released from the hospital, Akhil caught a cold. Mucus began to build up in his lungs, causing more breathing problems, so Akhil made an appointment with his pulmonologist.
At the appointment, the family received more devastating news: Akhil didn’t have long to live. An X-ray showed one of Akhil’s lungs wasn’t getting any oxygen.
They gave Akhil three options: go home and die, probably soon; go to the hospital for outpatient treatment to remove the fluid from his lungs; or go to the hospital and undergo whatever treatments they could come up with to prolong his life.
“Akhil thought he wanted to go home and die,” Laura said.
But at the encouragement of Laura and his neurologist, Akhil agreed to go to the hospital for a bronchoscopy to suction the fluid from his lungs.
“He was in pretty bad shape,” Laura said.
“Things were very grim at the hospital. They told him they didn’t think he would survive.” Laura Jhaveri
The procedure seemed to work. But then, just as quickly as his lungs were drained, they filled with fluid again. Akhil underwent an emergency bronchoscopy in the middle of the night.
“Things were very grim at the hospital,” Laura said. “They told him they didn’t think he would survive.”
Caregivers told Laura to begin thinking about funeral arrangements. Family and friends rushed to Akhil’s bedside, some traveling from Texas and Florida, to say goodbye.
After the second bronchoscopy, Akhil prayed. He was tired of suffering. He was ready to stop fighting.
“I wanted to die,” Akhil said.
But Akhil’s fight wasn’t over. God spoke to Akhil. He said he wasn’t done with Akhil yet.
After that night, Akhil’s health took a turn for the better.
Two days later, Akhil returned home. Not to die, but to continue living.
Marissa Harshman: 360-735-4546; firstname.lastname@example.org; twitter.com/MarissaHarshman
Reporting for this series
Story grew from hospice care idea
We met Akhil and Laura Jhaveri on a Friday afternoon in early April.
We were interested in doing a project about hospice care, and the folks at Hospice Southwest connected us with the Jhaveris. Just a few months earlier, Akhil, who has ALS, enrolled in the hospice program after complications from a cold nearly took his life.
The Jhaveris agreed to let us spend some time with them to understand the role of hospice care in their lives and to learn more about Akhil’s disease.
After spending a few afternoons with the Jhaveris, we realized their story was about so much more than hospice care.
They’re a dynamic, vibrant family. Their story is one of strength, perseverance, hope, faith and love.
We spent the next seven months getting to know them.
We interviewed each member of the family — Akhil, Laura, and their daughters, Ashley, 22, Corinne, 20, and Jordan, 15 — and Akhil’s caregiver, Russell Warner.
We observed Akhil’s morning and evening routines. We sat in on visits with his hospice nurse and bath aide.
We tagged along to violin recitals, joined family barbecues and watched as Akhil interacted with longtime friends and former co-workers. Some afternoons, we just hung out on the couch.
Our three-day report, “A Strong Man,” launches today. The story is told in words, video and photography.
We hope our effort shows, to borrow Akhil’s words, how a loving family triumphs over tragedy.
— Marissa Harshman and Ariane Kunze