Mother Opens Up About Treating New child with Most cancers (Unique)theinsiderinsight

• When Lauren and Joe Sewell welcomed their fourth little one, Violette, they instantly suspected one thing was unsuitable with their child lady as she wouldn’t feed and her weight plateaued. 
• Within the months following, the couple struggled to discover a prognosis for his or her daughter as medical doctors constantly ‘dismissed’ their worries.
• The mom opens as much as PEOPLE about lastly receiving their daughter’s life-altering prognosis of 4S neuroblastoma.

The hospital room was full when Lauren and Joe Sewell heard the phrases most precisely described as each mum or dad’s worst nightmare. They acknowledged among the gastrointestinal medical doctors standing by, however behind them stood a staff of full strangers who hadn’t but handled the Sewell’s then-3-month-old toddler.

Two of the current attending medical doctors knelt down as they delivered a long-awaited prognosis, the reply to all of the troubling signs that plagued child Violette since she was born in mid-July.

The medical doctors had been easy after they spoke to the Sewells: “I do know we admitted [her] for liver points, however we wish to introduce you to our oncology staff. Your daughter has most cancers,” Lauren, 34, recollects the medical doctors telling her and Joe, 37, in October.

The mother of 4 tells PEOPLE she by no means may’ve predicted her response to the information. There was no visceral cry nor a tearful breakdown. Lauren’s concern and nervousness had been muted by “this overwhelming sense of peace,” as odd as she is aware of that sounds. However lastly — after lengthy stays within the ER, ongoing hospital admissions, MRIs and ultrasounds — it felt like their prayers had been answered.

“We knew one thing was unsuitable, and we simply wanted to determine what to attempt to assist her,” says Lauren. Her instincts had been proper, and although it took months to establish Violette’s stage 4S neuroblastoma, she began chemotherapy lower than 48 hours after getting an official prognosis.

From the very begin, Lauren knew her fourth little one wasn’t effectively. She weighed a wholesome 10 kilos at beginning, like her older siblings — sister Willow, 9, and brothers Broderick, 4, and Shepherd, 3 — although that is about the place the youngsters’ toddler commonalities ended. Violette by no means fed like a traditional child; she usually would not feed in any respect, and after only a few weeks of life, her weight plateaued.

“They had been like, ‘She appears to be like tremendous, she appears to be like tremendous.’ I simply saved saying, ‘However she’s not … Do not simply have a look at her and assume as a result of she’s not a six-pound frail child she’s not sick.'”

Lauren and Joe pursued a full guidelines of all the things which may’ve been inflicting their daughter’s struggles. They adjusted her components to accommodate potential allergy symptoms. They monitored her extreme spit-up, questioning if it was a symptom of reflux. She underwent a lip and tongue-tie revision.

The simplest measures solely briefly improved Violette’s situation. Inside hours, she’d resume wailing and vomiting excessively. At 5 weeks outdated, her pediatrician urgently referred the household 40 minutes away to see specialists at Johns Hopkins Hospital, the place they carried out an ultrasound with outcomes that frightened each Lauren and Joe. The medical doctors, nonetheless, appeared far much less involved.

The ultrasound confirmed three lesions on Violette’s liver, initially prompting the staff to schedule an MRI for the child. After she was admitted to the hospital, the medical doctors advised the Sewells they needed to maintain Violette on fluids and wait a few days to ensure an MRI was completely vital. It may simply be a virus, they reasoned.

Lauren pressed, “What about these lesions? Everyone appeared involved.” The medical doctors had clearly modified their regard for the spots on Violette’s liver. Her mom wasn’t satisfied, although she says the professionals “dismissed” her worries and defined that the spots had been hemangiomas, widespread and benign growths fashioned by further blood vessels.

Although cautious, she understood their reluctance to place younger Violette by means of an MRI with out operating by means of much less intense measures first. Nevertheless the toddler “hit each worst-case situation” inside only a few days, Lauren explains, and Violette ended up spending two weeks at Johns Hopkins.

After unsuccessfully administrating fluids for 3 days, the medical doctors inserted an NG tube to feed Violette by means of her nasal passage “quickly, after which we’ll wean her again to feeding usually,” Lauren recollects of their plan. Inside three days, the specialists decided they wanted to change to “massive bolus feeds each three hours.” They did not assume Violette would should be on a 24-hour steady feed, however over the course of one other three days, they needed to make that adjustment.

“She couldn’t tolerate the 30-, 60- or 90-minute bolus feeds each three hours with out vomiting profusely,” says Lauren. She begged medical doctors to assist, sobbing as she advised them how strongly she felt that Violette’s downside was larger than the “extreme reflux” they maintained was the trigger.

Throughout the two-week collection of worst-case situations, Joe and Lauren saved citing the lesions on Violette’s liver, however their palms had been tied. The gastrointestinal staff noticed no motive to carry out an MRI.

“Even doing a repeat ultrasound at that time, we’d’ve seen extra lesions,” Lauren displays.

However towards the top of that two-week collection of worst-case situations, Violette got here round. She began tolerating her steady feeds. She was discharged in early September at 7 weeks outdated, and he or she went house beneath the care of her dad and mom and a house nurse.

“We thought, ‘Perhaps they’re proper. Perhaps it’s extreme reflux as a result of she’ll develop and get larger and her esophagus will get longer, and perhaps that is simply how she is correct now, and we simply have to present her time,'” Lauren tells PEOPLE.

They weren’t in a position to comply with up with Violette’s gastrointestinal physician till the start of October. By that time, Lauren had already observed her daughter’s situation steadily plummeting again right down to dangerous feeds, poor sleep and loud, unexplained screaming. Below the care of the GI specialist, they began checking containers once more.

“So we did all the things. We doubled her reflux remedy, we modified her components,” says Lauren. By Oct. 19, her daughter stopped tolerating feeds altogether. “Anytime we’d activate her feeding pump, she would instantly vomit.”

As soon as once more, the on-call physician steered it was a GI virus. When mother pushed again, she was advised to attend it out for a few days, strive Pedialyte, give Violette “some intestine relaxation” and reevaluate the scenario on Monday. The infant wasn’t utterly effectively, however she was having moments of reduction. Lauren noticed how Violette had bounced again earlier than.

“You get in your head a little bit bit, ‘Am I exaggerating how dangerous that is or am I the one one that actually sees this?'” she admits to PEOPLE.

On the finish of the weekend, Lauren was alarmed to see her worries had been warranted. Violette’s abdomen was distended — “rock onerous” on the highest and tender on the underside. Their house nurse rushed over and instantly knew they wanted to get again to Hopkins.

“They repeated the ultrasound, they repeated blood work, and we had been within the ER all evening,” says Lauren. When the GI attending arrived the following morning, Lauren advised him all the things she’d noticed of Violette’s situation, like her sensitivity to quantity. The kid could not even tolerate 2 milliliters of remedy. One thing was unsuitable.

The physician hadn’t seen Violette’s ultrasound outcomes but, however he did not wait to dismiss the frightened mom’s considerations.

He mentioned, ‘You are not going to love to listen to this, however which may simply be how she is,'” Lauren remembers over three months later. “I checked out him and I mentioned, ‘With all due respect, you’re unsuitable, and I am not leaving till you do the MRI.'”

She requested him to test on the ultrasound outcomes and watched his disposition morph upon seeing Violette’s scans. “It regarded like he noticed a ghost,” says Lauren. “He simply mentioned, ‘I’ll discuss to some individuals and I feel we will do the ultrasound, or I feel we will do the MRI,’ and he left.”

Lauren and Violette had been advised to attend within the ER till a room opened on the identical ground the place they’d been admitted again in September. When a nurse lastly got here to steer them up, Lauren cooed at her daughter, telling her, “Violette, we will go see our nurse buddies up on the ninth ground.”

She remembers how the nurse minimize in to right her that they weren’t going to the ninth ground. Regardless of what Lauren was advised, they had been now heading as much as the eleventh ground. She requested what occurs there. 

“It’s the oncology ground,” the nurse answered, then — in response to Lauren’s apparent shock — added, “However do not freak out. It is tremendous.”

Staying calm was a tall order for the mother, who referred to as her husband to keep away from spiraling by herself. The GI physician got here in to clarify that Violette wasn’t going to be admitted for feeding points once more. This time, they wanted to deal with her liver, which had quadrupled in dimension inside simply 5 weeks.

They hadn’t discovered the reason for its enlargement, however they knew Violette was on the verge of liver failure. One among her medical doctors mentioned he had by no means seen something like that in a pediatric affected person.

“I requested him, ‘When have you ever seen this earlier than on an ultrasound?’ And his response was 65-year-old alcoholics,” Lauren recollects to PEOPLE. “At that time, I am having a panic assault as a result of I am pondering she’s going to want a liver transplant.”

She and Joe had been locked in a tense maintain as they awaited outcomes from Violette’s MRI. The report populated Lauren’s e-mail earlier than the medical doctors had an opportunity to softly ship the information of the scans.

“Naturally I am going to take a look at it as a result of I have been ready three months,” she explains. “I opened it up and on the very high of the report it says, ‘Suspected neuroblastoma, innumerable tumors protecting liver, mass discovered on adrenal gland.’ And that is how we discovered.”

Lauren’s response — her surprising peace of thoughts — was most likely accompanied by a degree of shock, she believes. However she did grow to be emotional discussing how they might take care of Violette’s ache ranges going ahead.

“I do not assume we realized how a lot ache she was in,” Lauren particulars. “She was on a morphine pump of fixed morphine when she was three months outdated, and he or she had that for a month, six weeks.”

Very first thing the next day, a biopsy confirmed their suspicions, although they had been solely in a position to survey Violette’s liver. The organ was so huge that the surgeons weren’t in a position to attain her adrenal gland, the place they later discovered the most cancers originated. It had already began spreading by the point her medical doctors caught it, however fortunately it was nonetheless solely remoted in her liver.

“Her oncologist mentioned he would guess some huge cash that she had it in utero simply with how drastic and how briskly all the things occurred,” Lauren notes. “That is why when she was born, she was in ache after which it was simply spreading to her liver.”

In some circumstances, a majority of these cancers are caught through the mom’s being pregnant, and the new child can go proper into chemotherapy. Such is just not the case for Violette, nonetheless, 4S neuroblastoma — the “4S” distinction is restricted to sufferers 12 months and youthful — is usually fairly treatable, says Lauren. Some recognized infants do not even must have chemotherapy.

“Below the age of 1, typically their physique will kick in a pure immune system response and combat the most cancers by itself with nothing,” Lauren provides. “Violette’s physique didn’t do this. The hope was perhaps that will kick in ultimately, however sadly for some motive for her it is not doing that.”

Moreover, Lauren says research have proven that 4S neuroblastoma accompanied by liver enlargement have “a grim prognosis,” she says.

However there’s hope; on the day Violette was recognized, her lead oncologist advised Lauren a few 4-year-old lady who solely wanted 4 rounds of chemotherapy. Now she solely is available in to see the physician for semi-annual check-ups.

“She had the identical factor Violette did, and he or she’s doing nice,” says the Maryland mother. “So there are kids that do have the liver enlargement that go on they usually do not relapse they usually stay a reasonably regular life.”

Violette will get a low dose of chemotherapy; it is delivered over the course of three days, after which she has two and a half weeks earlier than the cycle is taken into account full. Her rounds of chemo are accomplished in units, so she’ll do two rounds of chemo over the course of six weeks. Then her oncologists will repeat an MRI to test on the egg-like plenty on her liver to measure the therapy’s efficacy.

At first, the medical doctors weren’t completely happy with the development. The 5 tumors solely decreased by about 10%, they usually wanted to shrink much more to keep away from additional feeding points.

“We repeated, ended cycles three and 4 after which did one other MRI to start with of January, and that had a extra drastic lower,” Lauren shares, although she notes her daughter nonetheless has bother feeding and conserving on weight as a result of there’s one particularly large tumor that blocks Violette’s abdomen.

Violette’s sixth spherical of chemo began on Feb. 11, and her subsequent MRI is scheduled for Feb. 27. Per typical, they’re going to reevaluate to see if she wants one other set of cycles, nonetheless, they’re near reaching the restrict for her particular most cancers. 4S neuroblastoma can solely have eight cycles of chemo, so based mostly on her MRI scans, they’re going to must resolve if they need to proceed or maintain off for a number of months.

“Speaking to her oncologist, there is a very excessive chance that she’s going to want the complete eight, however we’re simply praying that perhaps miraculously these tumors shrink,” says Lauren. “That the bigger tumor simply shrinks very, very drastically so we are able to simply monitor her after that and he or she would not must do the following two cycles.”

Violette spent 9 weeks within the hospital after her official prognosis in October, and through that point her dad and mom bumped into many medical doctors and nurses who beforehand tended to the kid. When Lauren advised them why she was again, she says they remembered her unrelenting instinct.

“I mentioned to them, ‘I am simply begging you, for those who ever have a baby are available in — and even for those who assume it is a virus otherwise you assume it is reflux — test all of the containers, be sure that there is not any doubt that that is what it’s.’ And if a mum or dad is telling you one thing is unsuitable … consider them till you have confirmed them in any other case,” says Lauren. “Loads of them say, ‘We’ll bear in mind her case for the remainder of our life.'”

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

“She’s my final child and I have not gotten to only soak it up together with her. It has been combat or flight, it has been survival mode for the reason that minute she was born. However you possibly can’t sit in that place … It is unimaginable to remain there as a result of she wants me,” says Lauren.

Fortunately, she’s been in a position to lean on her buddies, household and church group. And in trying to her family members for assist, a number of thousand extra individuals began cheering on the Sewells all around the globe.

Lauren wasn’t certain the way to inform everybody about Violette’s prognosis when it occurred. It was overwhelming to deal with and overwhelming to share, so considered one of her nurses steered Lauren ship out a blast on social media.

The mother already had considerably of a presence online posting life-style and household content material, however she’d slowed down sharing whereas anticipating Violette. Her previous fertility struggles made her hesitant to doc the being pregnant, and he or she deliberate to go up with a shock beginning announcement when the time got here.

Since Violette was sick from day one, Lauren held off on importing something. By the point they obtained a prognosis, life regarded quite a bit totally different from her final Instagram put up, however Lauren agreed with the nurse. Everybody who wanted to know in regards to the scenario was already following her on social media.

Lauren’s sister-in-law, Caitlin Sewell, additionally launched a GoFundMe web page to boost cash for the household throughout Violette’s therapy.

“I by no means anticipated the primary video to explode the best way that it did and simply all of those messages and folks rallying behind us,” Lauren says of the Instagram Reel she posted on Oct. 28, which now has 3.6 million views. “We had been overwhelmed with gratitude.”

On the time when she posted that now-viral replace, Lauren was meant to be in New Orleans together with her mom, cousin and 9-year-old daughter, Willow. The 4 of them had been imagined to see Taylor Swift on her iconic Eras Tour.

Lauren purchased the tickets a yr earlier as a birthday shock for super-Swiftie Willow. It was going to be a full-circle second for the entire household.

“My cousin — we’re the identical age — and we grew up going to Taylor Swift live shows,” Lauren continues. “My mother shocked me my freshman yr of school going to her very first solo tour.”

Lauren and her cousin, Callan, have made superb recollections at Swift’s performances. They attended the Fearless Tour after marriage ceremony costume procuring collectively and discovering the right robe for Lauren’s nuptials to Joe. Swift, she says, “has at all times been form of intertwined into issues.”

The Eras Tour would carry all of it collectively: Lauren and Callan’s longtime friendship and fandom and a brand new era of mothers stunning their daughters. However, two days earlier than they had been meant to depart for Louisiana, Violette was recognized with most cancers.

“I knew that I could not depart. She wasn’t secure sufficient for me to get on a airplane and go,” says Lauren. She insisted her members of the family go on with out her, and fortunately, her mother and cousin nonetheless made it “one of the best weekend” for Willow.

Again on the oncology ground in Maryland, the workers knew what Lauren was lacking out on, they usually sought out a technique to make her sacrifice harm just a bit much less. One of many nurses embellished their hospital door with an Eras Tour theme, however as an alternative of the usual Swift fashion, she made it all “Violette’s version.”

That one gesture turned a full-fledged motion on Lauren’s Instagram web page — the place she boasts over 42,700 followers. She refers to Violette’s most cancers journey as “Fearless Violette’s Model,” a nod to Swift’s 2021 re-recording of her sophomore studio album.

The singer’s presence additionally stays all through Violette’s hospital stays. It is grow to be a practice for the nurses to herald Swift-inspired decor and sing for every spherical of the child’s chemotherapy. They’re going to take track titles or lyrics and twist them to incorporate Violette.

Throughout considered one of her MRIs, Lauren discovered a web site that lets customers insert images into the Eras Tour poster format. She added footage of Violette and printed the customized picture on t-shirts. On the again, the merchandise reads “Fearless Violette’s Model.”

“In order that’s been form of her theme as she’s preventing most cancers,” says Lauren, noting how she’s seen her social media followers benefit from the idea. “Regardless that it is one thing that is heavy with a child having most cancers, it is simply form of spun a little bit mild to it.”

As daunting because it initially felt to share Violette’s story so extensively, Lauren has discovered Instagram to be a “very comforting” place as a mother. She’s heard from a number of different dad and mom whose children have 4S neuroblastoma, and he or she’s even heard from adults who had the most cancers themselves throughout infancy. Her inbox is full of success tales advised from the opposite aspect of the illness.

“When the times get actually onerous, or she’s backtracking and issues aren’t going as effectively, and we really feel like we’re not making that a lot progress … seeing these tales, it is given [us] hope,” says Lauren.

Lauren bumped into a very significant type of hope at Johns Hopkins a few weeks in the past, when she introduced Violette in for an appointment. Willow needed to come back alongside, so the large sister performed in a ready room during the check-up.

Holding Violette in her arms, Lauren got here out to test on her eldest, and he or she observed a little bit lady standing there as effectively. Close by, her mom gave the impression to be watching Lauren, they usually struck up a dialog. The girl mentioned her daughter is known as Scarlett, and he or she’s 4 years outdated.

“She checked out me and he or she mentioned, ‘Do you thoughts me asking what your daughter has?’ And after I advised her, she simply had this smile,” Lauren recollects to PEOPLE. “Nevertheless it simply was a really comforting smile. She mentioned, ‘Oh. That is what Scarlett had.'”

After studying Violette and Scarlett shared the identical oncologist, Lauren rapidly put the items collectively. This was the lady that the physician talked about on the day Violette was recognized. There she was, rising up wholesome just like the oncologist mentioned.

“It was utterly simply coincidence and destiny that we bumped into them,” Lauren displays. After her encounter with Scarlett and her mom, Violette’s physician mentioned he noticed that they met. Lauren requested if that is who he talked about again in October, and although he could not affirm the very fact, she was warmed by his smile.

As a substitute, fashionable expertise helped solidify what Lauren already knew. Scarlett’s mother discovered her on Instagram and wrote to her instantly. She mentioned she could not cease serious about Lauren and Violette. They began exchanging messages that preserve spirits excessive even on the Sewells’ hardest days.

“She mentioned, ‘You are going to get there. It may be sluggish, however you are going to get there,'” Lauren says, recounting her communications with the guy mother. “It was simply actually, actually neat to have that.”