Mom Begs Doctors to Treat Sick Newborn. 3 Months Later, a Scan Shows Her Liver Resembles '65-Year-Old Alcoholic' (Exclusive)

• When Lauren and Joe Sewell welcomed their fourth child, Violette, they immediately suspected something was wrong with their baby girl as she wouldn’t feed and her weight plateaued. 

• In the months following, the couple struggled to find a diagnosis for their daughter as doctors continuously ‘dismissed’ their worries.

• The mother opens up to PEOPLE about finally receiving their daughter’s life-altering diagnosis of 4S neuroblastoma.

The hospital room was full when Lauren and Joe Sewell heard the words most accurately described as every parent's worst nightmare. They recognized some of the gastrointestinal doctors standing by, but behind them stood a team of complete strangers who hadn't yet treated the Sewell's then-3-month-old infant.

Two of the present attending doctors knelt down as they delivered a long-awaited diagnosis, the answer to all the troubling symptoms that plagued baby Violette since she was born in mid-July.

The doctors were straightforward when they spoke to the Sewells: "I know we admitted [her] for liver issues, but we want to introduce you to our oncology team. Your daughter has cancer," Lauren, 34, recalls the doctors telling her and Joe, 37, in October.

The mom of four tells PEOPLE she never could've predicted her reaction to the news. There was no visceral cry nor a tearful breakdown. Lauren's fear and anxiety were muted by "this overwhelming sense of peace," as odd as she knows that sounds. But finally — after long stays in the ER, ongoing hospital admissions, MRIs and ultrasounds — it felt like their prayers had been answered.

"We knew something was wrong, and we just needed to figure out what to try to help her," says Lauren. Her instincts were right, and though it took months to identify Violette's stage 4S neuroblastoma, she started chemotherapy less than 48 hours after getting an official diagnosis.

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From the very start, Lauren knew her fourth child wasn't well. She weighed a healthy 10 pounds at birth, like her older siblings — sister Willow, 9, and brothers Broderick, 4, and Shepherd, 3 — though that's about where the kids' infant commonalities ended. Violette never fed like a normal baby; she often wouldn't feed at all, and after just a few weeks of life, her weight plateaued.

"They were like, 'She looks fine, she looks fine.' I just kept saying, 'But she's not ... Don't just look at her and assume because she's not a six-pound frail baby she's not sick.'"

Lauren and Joe pursued a full checklist of everything that might've been causing their daughter's struggles. They adjusted her formula to accommodate possible allergies. They monitored her excessive spit-up, wondering if it was a symptom of reflux. She underwent a lip and tongue-tie revision.

The most effective measures only briefly improved Violette's condition. Within hours, she'd resume wailing and vomiting excessively. At 5 weeks old, her pediatrician urgently referred the family 40 minutes away to see specialists at Johns Hopkins Hospital, where they performed an ultrasound with results that worried both Lauren and Joe. The doctors, however, seemed far less concerned.

The ultrasound showed three lesions on Violette's liver, initially prompting the team to schedule an MRI for the baby. After she was admitted to the hospital, the doctors told the Sewells they wanted to keep Violette on fluids and wait a couple of days to make sure an MRI was absolutely necessary. It could just be a virus, they reasoned.

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Lauren pressed, "What about those lesions? Everybody seemed concerned." The doctors had clearly changed their regard for the spots on Violette's liver. Her mother wasn't convinced, though she says the professionals "dismissed" her worries and explained that the spots were hemangiomas, common and benign growths formed by extra blood vessels.

Though wary, she understood their reluctance to put young Violette through an MRI without running through less intense measures first. However the infant "hit every worst-case scenario" within just a few days, Lauren explains, and Violette ended up spending two weeks at Johns Hopkins.

After unsuccessfully administrating fluids for three days, the doctors inserted an NG tube to feed Violette through her nasal passage "temporarily, and then we'll wean her back to feeding normally," Lauren recalls of their plan. Within three days, the experts determined they needed to switch to "large bolus feeds every three hours." They didn't think Violette would need to be on a 24-hour continuous feed, but over the course of another three days, they had to make that adjustment.

"She could not tolerate the 30-, 60- or 90-minute bolus feeds every three hours without vomiting profusely," says Lauren. She begged doctors to help, sobbing as she told them how strongly she felt that Violette's problem was bigger than the "severe reflux" they maintained was the cause.

During the two-week series of worst-case scenarios, Joe and Lauren kept bringing up the lesions on Violette's liver, but their hands were tied. The gastrointestinal team saw no reason to perform an MRI.

"Even doing a repeat ultrasound at that point, we would've seen more lesions," Lauren reflects.

But toward the end of that two-week series of worst-case scenarios, Violette came around. She started tolerating her continuous feeds. She was discharged in early September at 7 weeks old, and she went home under the care of her parents and a home nurse.

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"We thought, 'Maybe they're right. Maybe it is severe reflux because she'll grow and get bigger and her esophagus will get longer, and maybe that's just how she is right now, and we just have to give her time,'" Lauren tells PEOPLE.

They weren't able to follow up with Violette's gastrointestinal doctor until the beginning of October. By that point, Lauren had already noticed her daughter's condition steadily plummeting back down to bad feeds, poor sleep and loud, unexplained screaming. Under the care of the GI specialist, they started checking boxes again.

"So we did everything. We doubled her reflux medication, we changed her formula," says Lauren. By Oct. 19, her daughter stopped tolerating feeds altogether. "Anytime we would turn on her feeding pump, she would immediately vomit."

Once again, the on-call doctor suggested it was a GI virus. When mom pushed back, she was told to wait it out for a couple of days, try Pedialyte, give Violette "some gut rest" and reevaluate the situation on Monday. The baby wasn't completely well, but she was having moments of relief. Lauren saw how Violette had bounced back before.

"You get in your head a little bit, 'Am I exaggerating how bad this is or am I the only one that truly sees this?'" she admits to PEOPLE.

At the end of the weekend, Lauren was alarmed to see her worries were warranted. Violette's stomach was distended — "rock hard" on the top and soft on the bottom. Their home nurse rushed over and immediately knew they needed to get back to Hopkins.

"They repeated the ultrasound, they repeated blood work, and we were in the ER all night," says Lauren. When the GI attending arrived the next morning, Lauren told him everything she'd observed of Violette's condition, like her sensitivity to volume. The child couldn't even tolerate 2 milliliters of medication. Something was wrong.

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The doctor hadn't seen Violette's ultrasound results yet, but he didn't wait to dismiss the worried mother's concerns.

He said, 'You're not going to like to hear this, but that might just be how she is,'" Lauren remembers over three months later. "I looked at him and I said, 'With all due respect, you are wrong, and I'm not leaving until you do the MRI.'"

She asked him to check on the ultrasound results and watched his disposition morph upon seeing Violette's scans. "It looked like he saw a ghost," says Lauren. "He just said, 'I'm going to talk to some people and I think we're going to do the ultrasound, or I think we're going to do the MRI,' and he left."

Lauren and Violette were told to wait in the ER until a room opened on the same floor where they’d been admitted back in September. When a nurse finally came to lead them up, Lauren cooed at her daughter, telling her, “Violette, we're going to go see our nurse friends up on the ninth floor."

She remembers how the nurse cut in to correct her that they weren’t going to the ninth floor. Despite what Lauren was told, they were now heading up to the 11th floor. She asked what happens there.

“It’s the oncology floor,” the nurse answered, then — in response to Lauren’s obvious shock — added, “But don't freak out. It's fine.”

Staying calm was a tall order for the mom, who called her husband to avoid spiraling by herself. The GI doctor came in to explain that Violette wasn’t going to be admitted for feeding issues again. This time, they needed to treat her liver, which had quadrupled in size within just five weeks.

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They hadn’t figured out the cause of its enlargement, but they knew Violette was on the verge of liver failure. One of her doctors said he had never seen anything like that in a pediatric patient.

"I asked him, 'When have you seen this before on an ultrasound?' And his response was 65-year-old alcoholics," Lauren recalls to PEOPLE. "At that point, I'm having a panic attack because I'm thinking she's going to need a liver transplant."

She and Joe were locked in a tense hold as they awaited results from Violette's MRI. The report populated Lauren's email before the doctors had a chance to gently deliver the news of the scans.

"Naturally I'm going to look at it because I've been waiting three months," she explains. "I opened it up and at the very top of the report it says, 'Suspected neuroblastoma, innumerable tumors covering liver, mass found on adrenal gland.' And that's how we found out."

Lauren's reaction — her unexpected peace of mind — was probably accompanied by a level of shock, she believes. But she did become emotional discussing how they would deal with Violette's pain levels going forward.

"I don't think we realized how much pain she was in," Lauren details. "She was on a morphine pump of constant morphine when she was three months old, and she had that for a month, six weeks."

First thing the following day, a biopsy confirmed their suspicions, though they were only able to survey Violette's liver. The organ was so massive that the surgeons weren't able to reach her adrenal gland, where they later found out the cancer originated. It had already started spreading by the time her doctors caught it, but luckily it was still only isolated in her liver.

"Her oncologist said he would bet a lot of money that she had it in utero just with how drastic and how fast everything happened," Lauren notes. "That's why when she was born, she was in pain and then it was just spreading to her liver."

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In some cases, these types of cancers are caught during the mother's pregnancy, and the newborn can go right into chemotherapy. Such is not the case for Violette, however, 4S neuroblastoma — the "4S" distinction is specific to patients 12 months and younger — is generally quite treatable, says Lauren. Some diagnosed infants don't even need to have chemotherapy.

"Under the age of one, sometimes their body will kick in a natural immune system response and fight the cancer on its own with nothing," Lauren adds. "Violette's body did not do that. The hope was maybe that would kick in eventually, but unfortunately for some reason for her it's not doing that."

Additionally, Lauren says studies have shown that 4S neuroblastoma accompanied by liver enlargement have "a grim prognosis," she says.

But there is hope; on the day Violette was diagnosed, her lead oncologist told Lauren about a 4-year-old girl who only needed four rounds of chemotherapy. Now she only comes in to see the doctor for semi-annual check-ups.

"She had the same thing Violette did, and she's doing great," says the Maryland mom. "So there are children that do have the liver enlargement that go on and they don't relapse and they live a pretty normal life."

Violette gets a low dose of chemotherapy; it's delivered over the course of three days, and then she has two and a half weeks before the cycle is considered complete. Her rounds of chemo are completed in sets, so she'll do two rounds of chemo over the course of six weeks. Then her oncologists will repeat an MRI to check on the egg-like masses on her liver to measure the treatment's efficacy.

At first, the doctors weren't totally pleased with the progression. The five tumors only decreased by about 10%, and they needed to shrink even more to avoid further feeding issues.

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"We repeated, ended cycles three and four and then did another MRI in the beginning of January, and that had a more drastic decrease," Lauren shares, though she notes her daughter still has trouble feeding and keeping on weight because there's one especially big tumor that blocks Violette's stomach.

Violette's sixth round of chemo started on Feb. 11, and her next MRI is scheduled for Feb. 27. Per usual, they'll reevaluate to see if she needs another set of cycles, however, they're close to reaching the limit for her specific cancer. 4S neuroblastoma can only have eight cycles of chemo, so based on her MRI scans, they'll need to decide if they should proceed or hold off for a few months.

"Talking to her oncologist, there's a very high probability that she's going to need the full eight, but we're just praying that maybe miraculously these tumors shrink," says Lauren. "That the larger tumor just shrinks very, very drastically so we can just monitor her after that and she doesn't have to do the next two cycles."

Violette spent nine weeks in the hospital after her official diagnosis in October, and during that time her parents ran into many doctors and nurses who previously tended to the child. When Lauren told them why she was back, she says they remembered her unrelenting intuition.

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"I said to them, 'I'm just begging you, if you ever have a child come in — and even if you think it's a virus or you think it's reflux — check all the boxes, make sure that there's no doubt that that's what it is.' And if a parent is telling you something is wrong ... believe them until you've proven them otherwise," says Lauren. "A lot of them say, 'We will remember her case for the rest of our life.'"

As proud as she is to have fought for Violette's attentive medical care, Lauren admits that there are definitely moments when she finds herself grieving.

"She's my last baby and I haven't gotten to just soak it up with her. It's been fight or flight, it's been survival mode since the minute she was born. But you can't sit in that place ... It's impossible to stay there because she needs me," says Lauren.

Luckily, she's been able to lean on her friends, family and church community. And in looking to her loved ones for support, several thousand more people started cheering on the Sewells all around the world.

Lauren wasn't sure how to tell everyone about Violette's diagnosis when it happened. It was overwhelming to handle and overwhelming to share, so one of her nurses suggested Lauren send out a blast on social media.

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The mom already had somewhat of a presence online posting lifestyle and family content, but she'd slowed down sharing while expecting Violette. Her past fertility struggles made her hesitant to document the pregnancy, and she planned to go up with a surprise birth announcement when the time came.

Since Violette was ill from day one, Lauren held off on uploading anything. By the time they got a diagnosis, life looked a lot different from her last Instagram post, but Lauren agreed with the nurse. Everyone who needed to know about the situation was already following her on social media.

Lauren's sister-in-law, Caitlin Sewell, also launched a GoFundMe page to raise money for the family during Violette's treatment.

"I never expected the first video to blow up the way that it did and just all of these messages and people rallying behind us," Lauren says of the Instagram Reel she posted on Oct. 28, which now has 3.6 million views. "We were overwhelmed with gratitude."

At the time when she posted that now-viral update, Lauren was meant to be in New Orleans with her mother, cousin and 9-year-old daughter, Willow. The four of them were supposed to see Taylor Swift on her iconic Eras Tour.

Lauren bought the tickets a year earlier as a birthday surprise for super-Swiftie Willow. It was going to be a full-circle moment for the whole family.

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"My cousin — we're the same age — and we grew up going to Taylor Swift concerts," Lauren continues. "My mom surprised me my freshman year of college going to her very first solo tour."

Lauren and her cousin, Callan, have made amazing memories at Swift's performances. They attended the Fearless Tour after wedding dress shopping together and finding the perfect gown for Lauren's nuptials to Joe. Swift, she says, "has always been kind of intertwined into things."

The Eras Tour would bring it all together: Lauren and Callan's longtime friendship and fandom and a new generation of moms surprising their daughters. But, two days before they were meant to leave for Louisiana, Violette was diagnosed with cancer.

"I knew that I couldn't leave. She wasn't stable enough for me to get on a plane and go," says Lauren. She insisted her family members go on without her, and luckily, her mom and cousin still made it "the best weekend" for Willow.

Back on the oncology floor in Maryland, the staff knew what Lauren was missing out on, and they sought out a way to make her sacrifice hurt just a little less. One of the nurses decorated their hospital door with an Eras Tour theme, but instead of the standard Swift style, she made it all "Violette's version."

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That one gesture became a full-fledged movement on Lauren's Instagram page — where she boasts over 42,700 followers. She refers to Violette's cancer journey as "Fearless Violette's Version," a nod to Swift's 2021 re-recording of her sophomore studio album.

The singer's presence also remains throughout Violette's hospital stays. It's become a tradition for the nurses to bring in Swift-inspired decor and sing for each round of the baby's chemotherapy. They'll take song titles or lyrics and twist them to include Violette.

During one of her MRIs, Lauren found a website that lets users insert photos into the Eras Tour poster format. She added pictures of Violette and printed the custom image on t-shirts. On the back, the merchandise reads "Fearless Violette's Version."

"So that's been kind of her theme as she's fighting cancer," says Lauren, noting how she's seen her social media followers enjoy the concept. "Even though it's something that's heavy with a baby having cancer, it's just kind of spun a little light to it."

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As daunting as it initially felt to share Violette's story so widely, Lauren has found Instagram to be a "very comforting" place as a mom. She's heard from several other parents whose kids have 4S neuroblastoma, and she's even heard from adults who had the cancer themselves during infancy. Her inbox is filled with success stories told from the other side of the disease.

"When the days get really hard, or she's backtracking and things aren't going as well, and we feel like we're not making that much progress ... seeing those stories, it's given [us] hope," says Lauren.

Lauren ran into a particularly meaningful form of hope at Johns Hopkins a couple of weeks ago, when she brought Violette in for an appointment. Willow wanted to come along, so the big sister played in a waiting room for the duration of the check-up.

Holding Violette in her arms, Lauren came out to check on her eldest, and she noticed a little girl standing there as well. Nearby, her mother seemed to be watching Lauren, and they struck up a conversation. The woman said her daughter is called Scarlett, and she's 4 years old.

"She looked at me and she said, 'Do you mind me asking what your daughter has?' And when I told her, she just had this smile," Lauren recalls to PEOPLE. "But it just was a very comforting smile. She said, 'Oh. That's what Scarlett had.'"

After learning Violette and Scarlett shared the same oncologist, Lauren quickly put the pieces together. This was the girl that the doctor mentioned on the day Violette was diagnosed. There she was, growing up healthy like the oncologist said.

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"It was completely just coincidence and fate that we ran into them," Lauren reflects. After her encounter with Scarlett and her mother, Violette's doctor said he saw that they met. Lauren asked if that's who he mentioned back in October, and though he couldn't confirm the fact, she was warmed by his smile.

Instead, modern technology helped solidify what Lauren already knew. Scarlett's mom found her on Instagram and wrote to her right away. She said she couldn't stop thinking about Lauren and Violette. They started exchanging messages that keep spirits high even on the Sewells' hardest days.

"She said, 'You're going to get there. It might be slow, but you're going to get there,'" Lauren says, recounting her communications with the fellow mom. "It was just really, really neat to have that."

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