The night before her first surgery, the little ballerina wept.
Raigen Lily Jesseph, only 3 years old, sat up in bed and sobbed. Through her tears, she cried, “I don’t want to have surgery,” over and over again. Makenzie and Jaymes Jesseph, Raigen’s parents, overheard from the other room and rushed to her side.
Makenzie held her close, and Jaymes rubbed her legs, but Raigen just wanted to be alone.
“No thank you, don’t touch me,” she said to her parents. So the couple moved to the doorway and watched their daughter cry until she fell back asleep.
“It’s very difficult to see your child go through all that emotion and anxiety, and there’s truly nothing you can do or say that can make it better, because she had to have the surgery. We couldn’t take that away,” said Makenzie, who grew up in Summerville. “We prayed for her, but we had to leave her and let her get it out and have those emotions.”
Since birth, Raigen has suffered from intense abdominal pain and severe headaches. Her parents tried everything — they changed her diet, took her to numerous appointments, scheduled every test the doctors suggested and met with a gastroenterologist — but nothing helped. In December 2018, they decided they needed answers, so they took Raigen to the emergency room at Sacred Heart Children’s Hospital near their home in Spokane, Washington, where she stayed for four nights and five days.
Two days into this hospital stay — her first of three — Raigen was diagnosed with gastroparesis, which is a rare digestive disorder that impedes the stomach from emptying itself properly into the small intestine.
To remedy this malady, the 3-year-old would have to endure a pyloroplasty procedure, or “a surgery to widen the opening in the lower part of the stomach so that stomach contents can empty into the small intestine” as defined by MedlinePlus, a National Institutes of Health website produced by the National Library of Medicine.
At 3:30 a.m. March 1, the Jesseph family gathered their things and drove to Sacred Heart Children’s Hospital for Raigen’s second hospital stay. Doctors told Makenzie and Jaymes the procedure may not adequately treat Raigen’s gastroparesis, but it was a good first step to take. During the surgery, doctors also placed a gastrostomy tube in Raigen’s stomach in case the procedure wasn’t successful and they would have to feed nutrients directly to her.
Fortunately, Makenzie said, Raigen handled the pyloroplasty well, and the doctors were impressed with her progress, especially compared to other children who had to go through the same procedure.
“Given the other kids who heal, she was doing really well. We haven’t had to use the G tube, and the surgery has worked so far,” Makenzie said. “She’s had zero stomach pain since (the procedure) besides normal surgery pain.”
Before the surgery, Raigen had been on a restrictive diet, so she could rarely eat what she wanted. But two weeks after she arrived home from her five-day hospital stay, Raigen finally had the meal she’s been dreaming of for so long: macaroni and cheese, pizza and ice cream.
“She got to eat her pizza and mac and cheese and ice cream, and she can eat anything she wants now,” Makenzie said. “The sad thing is we had to train her on what it feels like to be full. She’s never known what it feels like to be full without stomach pain.”
Makenzie said her little girl had the “biggest grin on her face” when she first tasted her celebration meal. For the first time, the Jessephs’ family meals are more about enjoying food and each other’s company than worrying about Raigen’s stomach pain.
“It’s been a transition for me because my life with her has been limiting her food. Now, we can sit down for dinner and she actually eats her dinner and talks to us the whole time,” Makenzie said. “Meals with the family are more enjoyable and relaxed than they used to be.”
One thing Raigen was not excited about when she got home, however, was the sight of the pole — which the 3-year-old had appropriately named “Poley” — that once held up her bag of liquid food. Raigen had been on a liquid diet for months before the surgery, and hated the feeding tube that ran from her stomach, out of her nose and connected her to Poley, which was her constant companion, but now sits in the corner of her closet.
“We come home from the first surgery and she says, ‘What is Poley doing here still?’” Makenzie said with a laugh. “I told her we had to keep him until we were in the clear. She doesn’t want to talk to or see Poley ever again.”
Although this time of peace and healing was a breath of fresh air for the Jesseph family, their next — and largest — hurdle was fast approaching. Raigen was to face her second surgery of the month on March 25.
This time, doctors would operate on her brain.
No more headaches
In addition to a lifetime of stomach pain, Raigen experienced splitting headaches that could not be explained by her gastroparesis diagnosis, so during her first hospital stay in December, doctors conducted an MRI on the 3-year-old to check for brain tumors.
To Makenzie and Jaymes’ relief, the MRI scan did not reveal any tumors in their Raigen’s brain, but it did discover something else.
That day, Raigen was diagnosed with Type II Chiari Malformation — a congenital brain developmental disorder that pushes the bottom of the brain down into the upper spinal canal, causing pressure and blocking the flow of brain fluid.
Makenzie and Jaymes then realized their little girl would have to undergo brain surgery.
The day of her second surgery, Raigen was feeling more calm than she had before her first operation. Makenzie thinks this is because she had already gone through something similar with the pyloroplasty, so she wasn’t as scared. Makenzie, though, was terrified.
“Jaymes handled it okay just because she did so well with the other surgery, but I had a lot of emotion, especially when they wheeled her out and left for the prep room,” she said. “That’s when it hit me and I just started sobbing. At that stage, there’s nothing else you can do but pray.”
The Jesseph couple and 10 of their family members spent four hours in the waiting room, consoling one another. Makenzie said for the first hour and a half, she couldn’t think or do anything except cry.
But eventually, those four hours passed, and Makenzie and Jaymes entered the recovery room to check on their daughter together.
“There’s just something about seeing your little baby like that...” Makenzie said, her words trailing off. “She looked pale, and she was still sleeping.”
Raigen was soon moved to a small room in the pediatric intensive care unit where only two people can visit at a time. Makenzie and Jaymes would switch out as each family member would approach the bed, give sleeping Raigen a quick kiss on the cheek or forehead, and leave.
In the PICU, only one parent is allowed to spend the night in the room, so the two decided Makenzie would be the one to stay. Luckily, an overnight room opened up down the hall, so Jaymes had a place to sleep nearby.
Makenzie said it was an extremely rough night for Raigen.
“She threw up all the time (as the nurses tried) to get her pain managed. There was no comfortable position for her, so we would sit her up or try to get her to sleep, but there was nothing that would make the pain go away for the first 24 hours,” she said. “As a parent, you’ll do anything to take your kid’s pain away, and yet we couldn’t. This was the worst we’ve ever seen it.”
By 11 the next morning, Raigen was transferred to a new room in the post-surgical wing for her extended stay. Makenzie said once they arrived, it felt like they could finally breathe, relax and heal together as a family.
“The PICU was a tiny room. I felt claustrophobic there, and it made me feel more anxious,” Makenzie said. “Once we transferred out, the room we got was like a little apartment. It felt like ‘Oh, now we’re home,’ even though we were still in the hospital.”
Over the next six days of Raigen’s final hospital stay, friends and family did their best to make the healing process as warm and comfortable as possible. The room soon filled with balloons, cards and four new stuffed unicorns. Makenzie’s mom, Summerville resident Heather Way, even sewed Raigen her own hospital gown and robe — a purple garment featuring, of course, unicorns and rainbows.
“She had a huge unicorn balloon, and some star balloons — there were probably 12 different kinds. The first time she was admitted in December was when she started loving balloons,” Makenzie said. “She stares at them and talks about them all the time. No matter what, we made sure to get some for her.”
Makenzie said while their family members were supportive and offered a hand, it was not easy for them to see Raigen so weak after her surgery.
“Nobody really understood how much pain she would be in,” she said. “Everyone struggled because she struggled. Raigen, through all of this, has really touched a lot of people’s lives with her strength, resilience and her thought for people.”
Through connections in La Grande, the Jessephs made friends with a family whose infant daughter, Haven, recently had open heart surgery. Raigen would pray and draw pictures for “Baby Shaven,” as she calls her, even while she was still healing from her own surgery.
“Even though baby Haven is younger, it reminded Raigen she’s not the only one who has to go through this,” Makenzie said, adding that knowing Haven’s family has helped them all. “Unless you walk the journey of your kid going through this, sometimes it’s hard to grasp the severity of it even though you still care a lot.”
Next up: birthday parties, ballet and preschool
The day the Jessephs finally left the children’s hospital, Raigen felt confused.
“She thought when she left the hospital she would be all better. She started crying (and said), ‘But this is supposed to be gone,’” Makenzie recalled. “It’s a lot for a little girl to process.”
The past few weeks for Raigen have been full of playing cash register, watching “American Idol” and dancing with her mom, and eating whatever foods she can stomach. She has had a daily problem with nausea and vomiting because of the brain surgery, but Makenzie said the doctors advised her this is a normal part of the healing process.
“When they said it’s a long, hard recovery, they did not lie,” she said. “(Raigen is) going a little stir crazy because she’s very social, so staying at home is becoming more difficult.”
Makenzie said Raigen’s halfway-recovery mark of six weeks is near her fourth birthday, so the family is planning a “big unicorn sparkle bash” at the end of May to celebrate her life and everything she’s overcome.
“She said she wants a unicorn cake, to go to the park and swing and see her friends,” Makenzie said. “She just wants to have fun again and have as many people around as possible.”
By late summer, Raigen’s 12-week recovery will come to an end, and it will be time for her to start preschool and go back to ballet, an activity she sorely misses. Makenzie said she is amazed by how strong her little girl has been through all of this pain before she even started school.
“I don’t ever want to go through that again, and I don’t want anyone else to go through that,” she said. “We know God has big plans for her after having her walk through this at such a young age.”