This story received first place in news feature writing from the South Carolina Press Association in 2018.
This story is published in The Island Packet.
She ran to her TV — heart racing — to smack the power button off. Then a sigh of relief.
She had lost the remote, so it was the only way to get her sudden anxiety to subside.
Sandy Johal was eight months pregnant with her third child — a daughter, Simrit Karam. She was resting her swollen feet that hot summer day in June 2009 on her pillow-padded couch in San Diego while her other other children — daughter Dhaya, 3 years, and son Joban, 1 year, were sleeping.
A St. Jude Children’s Research Hospital commercial interrupted her episode of Grey’s Anatomy.
What she saw scared her.
The commercial showed very ill children with cancer. She had seen those commercials before, but they had never sparked a reaction like the one she had that day — and would have again.
Sandy knew something was wrong with her unborn baby. She never had that sense of foreboding when pregnant with her other two children.
“It was this strong feeling — to the point where I would literally tense up and think, ‘God, please just make her OK.’” she recalled. “But then all the tests were showing nothing out of sorts.”
Her intuition, though, would sadly be proven right. And the events that transpired would lead her and her husband, Sam Johal, to relocate their family 2,400 miles away to a place they had never visited before.
Since coming to Hilton Head several years ago, the couple has been credited with turning around a blighted hotel on the island’s south end — a main tourist destination. And they have begun major renovations at another hotel they own.
Sam has long been in the business of renovating and rebranding properties around the country. But Sandy’s life has changed significantly since her family’s move to the island.
While in San Diego, she was in a project manager position at SAP, the world’s third-largest software company, according to their website. For 15 years, she climbed the corporate ladder, beginning as a junior consultant and working her way up. Her 60- to 70-hour work week demanded most of her time and energy, she said.
“I was never driven by money; it was more success,” she said.
She has a very different life now — one she said is driven by “living with intention,” cherishing each day, and making a difference in the lives of others.
She still spends some time in managing their commercial properties with her husband. But her real passion: waking up around 5 a.m. most days and writing until about noon — something she never had time for while working in corporate America.
She plans to have her first novel published later this year and is working on a second book. She said her novel, a fictional account of a woman learning to trust her intuition, was part of her healing process after the worst two years of her life.
That journey started in 2009 with news no parent wants to hear.
Her daughter had cancer.
‘BACKED INTO A CORNER’
Simrit was born on July 21, 2009. A few months later, in September, Sandy said she discovered a pea-sized lump on the infant’s left thigh while changing her diaper.
It was hard, and she could move it around. The lump confirmed what she had known all along — that her daughter was not OK.
Simrit would be diagnosed with Stage Four Neuroblastoma, a cancer that affects the sympathetic nervous system. By the time she found a doctor who could tell her what was wrong, Simrit had two more lumps on her abdomen and one on her hip. And an ultrasound would show her abdomen was filled with the pea-sized growths.
Neuroblastoma forms in utero, in the early nerve cells of an embryo or fetus, according to the American Cancer Society. It accounts for about 6 percent of all cancers in children and is often diagnosed in infancy.
The day after the diagnosis, the Johal family headed to the hospital in San Diego for chemotherapy. Plans for a family trip to Canada — where Sam and Sandy are from — were canceled.
Sandy reduced her hours at her corporate job to be there for her daughter’s treatment. Sam’s work came to a standstill.
The Johals initially were confident their daughter would beat cancer. But Sandy said she quickly became concerned when she learned that a potential side effect of the main cancer-fighting drug, Etoposide, was, ironically, another type of cancer — leukemia.
She told the doctor she couldn’t sign off on the treatment, only to be persuaded otherwise. The likelihood of Simrit developing leukemia was highly unlikely, and if the treatment wasn’t done, she wouldn’t survive, Sandy was informed.
Sandy said she reluctantly signed the treatment form, doubting her own intuition. Simrit received Etoposide and several other drugs for eight months.
“You’re backed into a corner, and you really have no choice,” Sam said.
The treatment ended in May 2010, and by the fall of 2010, Simrit was declared cancer-free, Sandy said. For the first few months at home, Simrit looked healthy and happy. Sandy said she and Sam devoted every day to their daughter, spending time with her at the beach near their home, in between watching endless reruns of Finding Nemo and Minnie Mouse cartoons, and painting her nails pink.
They felt relief, and thought the physical and emotional battle was finally over after the eight-month treatment regimen.
But their sense of peace was soon shattered. After less than a year, Simrit became pale and weak, her limbs covered with deep purple bruises.
The Johals found out their daughter had developed Acute Myeloid Leukemia, a cancer of the bone marrow and blood. Sandy said the same doctor who earlier had pushed for the Etoposide treatments — against her intuition — told her the AML was drug-induced — that beating the first cancer is what gave Simrit the second.
Chemotherapy treatments using Etoposide have been linked to the development of AML later on, according to the American Cancer Society. Sandy said she was deeply saddened by the diagnosis; and the doctor, who she noted is considered one of the best pediatric oncologists in San Diego, “apologized profusely” to her about the situation, explaining she had never seen it happen in all her years of practice.
But it wouldn’t change Simrit’s fate: In August 2011, the 2-year-old girl was given six months to live.
Chemotherapy started again and her body responded to it, but the cancer would fill up her bloodstream just two days after each treatment stopped, Sandy said.
Her immune system was so suppressed the family could no longer take her outside, and even had to shower before entering her hospital room to protect her.
Sandy said the doctor had one last plan to tackle the leukemia, which involved a harsh chemo drug that might cause Simrit’s kidneys or heart to fail. She said she and her husband authorized it — because they believed it was their last hope. They made dozens of calls to other cancer treatment centers, all of which said were unable to help their daughter.
Sandy lay on Simrit’s right side in the hospital bed as a doctor and nurse began the new treatment. They talked about Minnie Mouse, and Simrit told her mother she wanted her nails painted. The little girl soon fell asleep.
Simrit withstood 30 minutes of the hour-long treatment before it was stopped because her kidneys showed signs of change, Sandy said.
Hospital staff told the Johal couple that the next step for Simirit would be hospice care. Their hope was gone.
“You never want to give up,” Sandy said.
“She was losing that spirit she always had,” Sam said about their daughter. “She probably realized what was going to happen.”
GOING BACK TO GOD
Hospice workers came to the Johal house each day.
You’re doing so good, Simrit. You’re doing great! Sandy would tell her daughter throughout the treatment process, hoping she didn’t realize how sick she was.
I am. I’m doing great! Simrit would say back.
But one day, after she stopped treatment, Simrit didn’t respond to her mother. She just glanced up from a wooden puzzle of animals she was playing with, met her mother’s gaze, then slowly looked back down at her toy.
“This little 2 year old, she was wise for her years,” Sandy said. “It was a moment that always stays with me.”
Simrit had to be moved to a hospice facility because she was in severe pain and crying constantly, and her morphine pump was no longer working. Sandy said she didn’t want her to pass away at home in front of her two siblings.
On Simrit’s last car ride to the hospice facility, she wailed in the backseat in her father’s lap. Sandy tried to calm her down. Do you want to hear the Minnie Mouse song? Do you want to watch Nemo? Do you want to color?
Simrit was in so much pain she needed to be sedated upon arriving at the hospice facility.
The next day, Simrit was in a sedated coma when her 5-year-old sister Dhaya and 3-year-old brother Joban came to tell her goodbye. She was lying on the bed with her pink, brown and white polka-dotted blanket, occasionally twitching an arm or a leg, mostly asleep.
Simrit’s not feeling well, and now she has to go back to God. And I want you to say goodbye, because you may not see her tomorrow, Sandy told her children.
Dhaya touched Simrit’s hand, and her little sister squeezed it back.
The next day, Sandy sat by Simrit’s bedside, watching her chest rise and fall. Her breathing seemed normal, peaceful.
Then she took her last breath. It was different — like she tried to catch it but couldn’t, her mother recalled.
Sandy said she had a tingling feeling when it happened. Raised a Sikh but not deeply religious, she believes it was Simrit’s soul leaving her body. Her daughter’s suffering had ended.
“I believe there is a God, and especially going through this process, I believe in a lot of different things in terms of forces and the universe and intuition,” she said. “They’re all signs of something, and we need to listen to them.”
Simrit died on April 18, 2012. Her mother, father and close family members scattered her ashes on the Pacific Ocean, as is customary in the Sikh faith. Sandy’s brother marked the spot in the water with GPS.
The spot was near a beach marker with the number 18 on it.
LEAVING A LIVING LEGACY
Sandy, who had quit her corporate job three months before Simrit’s passing, said she felt emotionally “dead” for more than a year afterward. She said images of her daughter would constantly fill her mind.
Slowly, she realized what she had to do.
“The whole experience of Simrit, the intuitive feelings, all of that to me resonated that there’s more to life than meets the eye,” she said.
She started writing — mostly private — about the intuition she had experienced — knowing something was wrong with her unborn baby, knowing something bad would happen to Simrit with the Etoposide treatments.
Knowing she should have trusted her gut feelings all along.
Around the same time, Sam said he had two Hilton Head properties “fall into” his lap as potential investments, though the couple never had visited the resort island before.
Those properties — what’s now the Best Western Ocean Breeze Inn and the Grand Hilton Head Inn — needed the renovation and rebranding that Sam specialized in. Initially, the Johals said they declined the purchase because the asking price was too high. About six months later, the price was right.
Typically, the family didn’t relocate to where Sam’s projects were. Sandy had said she never wanted to leave San Diego, but it was difficult to heal emotionally with reminders of Simrit everywhere.
“I don’t know how it evolved; it all just happened so quickly,” Sandy recalled. “We just looked at each other and said, ‘Let’s put our heart and soul into this (Hilton Head) property and see what we can do.’”
In early 2015, Sam moved to Hilton Head. In the summer of 2016, Sandy and their children joined him. The family now lives in the Moss Creek community, she said.
The couple say they are trying to leave a positive mark on the island they call home. Those who know them are quick to praise them for revitalizing a rundown hotel on the island’s south side.
Sam, along with his cousin and business partner, Hari Johal, renovated the present Best Western Ocean Breeze Inn on Lemoyne Avenue. The hotel, formerly known as the Metropolitan Hotel annex, had sat vacant between 2008 and 2015, and had been declared a public nuisance. It reopened in November 2015.
“It was drug dealers, drug users, prostitutes, homeless and gang graffiti,” said Bruce Bartow, an eight-year resident of the Ocean Walk Villas condominiums located next to the hotel, adding that with the renovation, “I cannot stress enough the dramatic and positive impact on the South Forest Beach community.”
Plans for the Grand Hilton Head Inn, on South Forest Beach Drive near the Best Western, call for a full exterior and interior renovation to create a high-end boutique hotel, according to Sam. Work has begun on that project.
The Johals also renovated another property they own, the Chimney Cove apartments off William Hilton Parkway. Sandy said the place was in “horrible condition” when they acquired it. That project came with some controversy, as tenants were evicted before the work began. The apartments now house hospitality workers.
These days, Sandy said she fills in as manager on an as-needed basis at the Best Western. Her involvement is limited, though, as she works to edit her novel, a screenplay and begins work on a new book.
“I know we’ll stay here trying to redevelop the island because we love it so much,” Sandy said. “It’s just stunningly beautiful.”
She also hopes to make more of an impact in the future — for herself and Simrit. Since Simrit’s passing, she said she has donated to the Children’s Neuroblastoma Cancer Foundation and the Leukemia and Lymphoma Society. She also plans to be involved with the Children’s Relief Fund and Special Olympics.
One day, she would like to set up a charity program for pediatric cancer patients in India — her nationality — who aren’t able to get treatment.
“I feel like I’m doing it for (Simrit) because it’s her legacy living on,” Sandy said. “But some of it is just my heart. It’s a mission for me not just to exist. I want to make an impact.”
She said she no longer cries like she used to when she remembers Simrit. And when it’s quiet and peaceful, she said she can feel her daughter’s presence.
“I don’t think the pain ever goes away,” Sandy said. “But for some reason, I really, fully believe she’s happy.”
Next week, on July 21, the Johal family will gather to remember Simrit in celebration of her birthday. In past years, Dhaya and Joban have released balloons into the air. This year, Sandy said the family will spend the day at the beach — Simrit’s favorite place — writing notes to her.
Alexandra Kincaid 