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HOMEA Simple Palate: A Family’s Fight Against Eosinophilic Esophagitis

11/27/2017

By Megan Sandberg, Content Writer for Ink Wordsmiths

7-year-old Kai and 5-year-old Mckenzie Tran live with Eosinophilic Esophagitis, a rare disease in which the body’s response to food allergens results in potentially fatal reactions and chronic tissue damage. Their mother, Jaclyn Tran, agreed to let me accompany her and her children for a night to see what it is like to live with this life-threatening condition.
I sat in the front passenger seat of Jaclyn Tran’s Escalade at 5:30pm on a Monday night, my heels touching two boxes of nutritional shakes. The passenger door slid open. Kai Tran, an adorable 7-year-old with dark brown skin and black hair, looked up at me with large brown eyes. Before I could say who I was, he launched into his own introduction.
“I am allergic to dairy, peanuts—”
“Honey, she knows. She just wants to hear about your day at school.” Jaclyn helped him into his Spongebob Squarepants car seat while I noted on my clipboard dairy, peanuts.
He nestled into his car seat and spoke to Jaclyn. “I did the dessert one. The answer was either chocolate or ice cream and I picked the right one. So they gave me a Smartie.”
He held up a roll of Smarties, and I instantly wondered if he could eat it. Jaclyn froze. She held the seat belt in her left hand. “What?”
“The answer was chocolate or ice cream and I picked the right one,” he repeated. Jaclyn and I looked at each other. Did he eat either?
“Okay,” she said, sighing with relief, clearly understanding him better than me. “Did your teacher make you smell anything again?” Jaclyn asked.
“No,” Kai said, playing with the wrapper of his Smarties before placing it in his lap.
Jaclyn climbed into the driver’s seat and reversed from the parking lot of Kai’s reading and writing center. After a harrowing incident of bullying in his public school, she chose to virtually homeschool Kai, with supplementation from centers like these. It still came with its issues.
“Lately, everything has revolved around food,” she said to me. “The kids got Oreos last week and the teacher knows he can’t have them so she just told him to ‘smell them.’” Jaclyn grabbed a McDonalds soda from the cup holder and passed it back to him. “Honey, we have to do your shake once we get to Sprouts. It’s long overdue.”
In a previous phone conversation, Jaclyn told me the “story of the little blue chair:” the stigmatization of his allergies at public school. During a 504 meeting (part of a statute which ensures the accommodation of children with specific medical needs), Kai was supposed to sit at the head of a nut-free table. Instead, administrators forced him to take a blue chair, sit by himself, and watch everyone else eat in front of him.
“So no one went with you?” I asked.
“No. I was alone.” He looked out the window and sipped the soda.
“People think I’m terrible for giving my children soda,” she said, noticing me watching. “But this is his treat. Imagine if you couldn’t eat anything. Wouldn’t you still want to have some taste?”
I tried to imagine only drinking Coke or Sprite for the rest of my life and had to refocus on the road ahead—I couldn’t do it.
Doctors diagnosed Kai with Eosinophilic Esophagitis in June of 2015. The disease causes white blood counts to skyrocket while the immune system plummets. Its symptoms include overall pain, hives, swelling, vomiting, malabsorption, bowel obstruction, and choking, among countless other horrifying symptoms. Nine weeks premature, Kai spent his first days in the NICU, already experiencing difficulty swallowing. By three years old, he exhibited extreme behavioral problems, and only ate three things: Oreos, Cheetos, and Goldfish. Everything else he refused. And he wouldn’t eat much of it—one small box of Goldfish for an entire day. Soon, an endoscope of his stomach showed over 15 eosinophils, the meter to diagnose the disease. This meant his body was attacking itself, releasing an exorbitant amount of toxins in the face of allergens, damaging organs and tissues. By five years old, his esophagus was completely closed.

Once, at a Halloween party, he ate two mini M&Ms, and had to be rushed to a hospital. Three men held him down to inject steroids and an epi pen. He now avoids all regular foods and relies on a hypoallergenic formula. It is too daunting to list what Kai can’t eat so I will list what he can: tortilla chips (but not all brands), sprinkles, marshmallows (but not all brands), and popcorn (but not all brands). Because of this scant list, Kai receives most of his caloric and nutritional intake from a feeding tube, which was inserted two years ago.
“I lost two teeth!” Kai shouted from the back.
He pulled at his lips to show me. I squinted in the dark car. “Wow! Did the tooth fairy give you a good reward?”
“I got 10 dollars.”
“10 dollars?! I wish my tooth fairy was that generous.”
He threw his arms up. “I’m rich, bro!”
Jaclyn chuckled. “Tell Megan what you can ask for Christmas now.”
“All I want for Christmas is my two front teeth!” he sang.
Jaclyn turned to me. “See? He’s just a normal seven-year-old boy.”
***
We pulled into the parking lot of Sprouts, passing a Pizza Hut and Subway.
“Are we going to Pizza Hut?” Kai asked. I looked back and saw a smirk on his face. I didn’t think a 7-year old could muster such spot-on sarcasm.
We pulled into one of the back spots, where Jaclyn pulled a steel water bottle and medical equipment from the trunk.
“I used to be a nurse,” she said, rummaging through a bag of medical equipment. “I loved it. Once I had him, they were going to give me the perfect hours. But once he was diagnosed, I couldn’t do it. Kai, you can hop down. Let’s show Megan.”
He jumped out of the car and stood on the curb. He pulled up his shirt. About one inch to the right of his belly button sat a hexagonal blue patch. Jaclyn clasped a thin, translucent tube to the small, plastic opening in the middle of it. Clear liquid settled in the tube.
“That’s stuff from his stomach. When you see it come up like that, it means you did it right.” She attached a fat syringe to the tube, then positioned the water bottle above, filling the syringe with white liquid. She passed the syringe to Kai, who stared out into the empty parking lot.
I knew I would sound naïve but I still asked: “Do you feel anything?”
He shook his head. “No,” he said, holding it steady.
After the syringe emptied, we walked into Sprouts. He immediately spotted a barrel of marshmallow products and handed a bag to his mom. She showed the ingredients label to me. “He can actually have these. This brand just has cane sugar and soy lecithin.”
He grabbed the bag back and carried it with him.
In the middle of the produce section, Jaclyn stopped. She pointed to the large, cardboard display housing different nuts.
“If he touches this, he will go anaphylactic,” she said.
Kai stood dangerously close to the display. I held my breath. I wanted to reach out and grab him, just in case he lost his balance.
“The problem with this is cross-contamination,” Jaclyn explained. “Let’s say someone touches the nuts, then touches a potato. If I pick up that potato and bring it home? Anaphylactic.”
I shook my head, incredulous, as Kai looked at all of the food he couldn’t eat. Jaclyn pointed to the various displays of fruit. “The only thing I could get in this section are potatoes anyways.”
I looked around at all the mangos, pineapples, peaches, and apples. The staples I picked up in my own grocery trips were fatal to her two children.
She spent $3.50 on the marshmallows then walked back out to the car. While Kai trotted in front of us, she whispered, “He won’t eat them.”
I frowned. If marshmallows were the only thing you could put in your mouth, wouldn’t you want to eat a lot of them?
“Do you think he’s afraid of a reaction?”
“I don’t know.”
In the car, I turned so I could keep the corner of my eye on Kai. He reached in and ate two marshmallows.
“Kai, what do you like to eat? What does your mom make for you?” I asked.
“French fries.”
“When you eat them, how much do you eat?”
“Thirty fries!” He shouted.
Jaclyn raised her eyebrows. “I’d like to see that. Let’s test that out tonight, Kai.”
“Are you going to eat a lot of marshmallows?” I asked.
Kai nodded, then stuffed a palmful of white fluff in his mouth.
Jaclyn looked in the rearview mirror. “Did he really put all of those in his mouth?”
“Yeah,” I said, hoping she’d be happy. Instead, she looked shocked and mildly concerned, like this was the first time he had eaten that much food in one sitting.
***
Kai started coughing in Ralph’s. At first I dismissed it. A lot of little kids cough. Maybe I heard him coughing before.
“Why are you coughing, Kai?” Jaclyn asked as we passed the deli section in Ralph’s, our next grocery stop.
He shrugged, bouncing off to the next aisle.
“He’s reacting to the marshmallows.”
I put my clipboard to my side, feeling betrayed. “But you said he could eat those.”
“It’s also about the amount.”
I watched Kai pass the dairy section. He almost bumped into an elderly man with his partial-skip, partial-run. To anyone else, he did look like the normal 7-year-old: always on the brink of running into a customer’s leg or shelf of food. As long as he kept his shirt down, no one would know his survival depended on that blue patch permanently attached to his stomach.
In the car, Jacklyn had momentarily broken down. Trying to hide her tears from Kai she whispered, “This is his reality. He may never eat.”
Her words rung in my head as Kai’s cough deepened. Suddenly he turned around and opened his mouth again. “Do you see it?” he asked me. He pointed to his bottom teeth. “Do you see the loose tooth?”
I hid my frustration. Not at him, but at some divine body; now he couldn’t even have his favorite marshmallows? Everywhere we turned, something else was taken from him. I desperately wanted to give it back.
Kai ran ahead again. I asked Jaclyn if she severely restricted her diet too. She nodded.
“One time Kai saw me eating a sandwich and he said, ‘Are you trying to kill me?’”
I looked at Kai, trying to imagine this precocious bundle of energy saying such a biting comment.
“Hey Kai,” she said, baiting him, “I think when I get home I’m going to eat some eggs and peanut butter.”
He turned. “Then I’m feeding you medicine, bro!”
Jaclyn shook her head and laughed. “He knows I’m allergic to some medicine,” she explained. Kai didn’t say this aggressively, nor do I think his use of ‘bro’ was intentionally disrespectful as much as another opportunity to use his favorite word.
In the next aisle, Jaclyn searched for the right brand of popcorn. “Kai, I think they only sell it at Albertson’s.”
“We got jipped, bro!” he said.
“He would’ve barely eaten it anyway,” Jaclyn whispered, then held her hand up. “Maybe a small handful.”
The rest of the grocery trip revealed further complications. He could have Tostito’s Tortilla Chips, but not Mission Tortilla Chips. He could have Pacific Cooler Capri Sun without a reaction but not Fruit Punch Capri Sun. He could have soy lecithin but not soy. The more Jaclyn explained, the more I thought about the nearly fatal trial-and-error it took to distill their grocery list.
As his cough deepened, I became increasingly nervous. I watched Jaclyn, who remained calm and attentive, for any sign this could get worse very quickly. I also couldn’t help but think Kai knew his stomach better than any microscope. He knew, intuitively, what his body could withstand before a reaction. Maybe he lied to me, the stranger, about the 30 french fries, because he thought that’s what ‘normal’ people ate.
Standing in line for check-out, Jaclyn told Kai he could pick out a soda. “Ask Megan if she wants anything,” she added.
He opened the door of the miniature fridge and mumbled, “What do you want?”
He reached for the Sprite.
“Sprite’s actually my favorite too,” I said.
“Really?” he asked, handing me a bottle.
“Yeah, we can be buddies.”
“I like Sprite because it’s green,” he said. “Green makes me feel better.”

***
Back in the car, I sorted through my notes. “Kai and his sister both have the same disease, right? And how do you spell—”
“Kai, spell Mckenzie’s name for Megan.”
“M-c-k-e-n-z-i-e,” he said from the backseat. “She’s actually my sister.”
“Oh yeah?” I said. “Good, I’m glad she actually is.”
“Do you know when her birthday is?” Jaclyn asked him.
“It starts in December.”
I laughed. “Yeah? When does it end?”
He shook his head, giggling.
“They have different allergies though. And it’s shown differently,” Jaclyn explained. “With Mckenzie, it’s more visible. She will break out in hives and scream. He is more quiet. He’ll come up to me and whisper ‘Mom, there’s a rope around my neck.’”
I paused, looking at the road again, imagining a lasso whipped around my collar bone.
“Sometimes he’ll come up to me and say, ‘I want a knife to cut out my stomach.’ Or, sometimes he’ll talk to his stomach. I hear him. He goes ‘it’s okay, I know you’re scared.’”
Eosinophilic Esophagitis is genetic. Khoa Tran, Jaclyn’s husband, discovered his allergies to soy, peanuts, and fruits in his late 30s. These allergies can pass down, and if they cause cell to cell mutations, it can develop into this disease. The only partial “cure” to alleviate some symptoms is steroids. But these can be bad. Especially for Kai.
They made him hallucinate. He stood on a street corner and screamed for his mom and dad even though they stood right next to him. Jaclyn kept yelling “I’m right here! I’m right here!” but it was as if Kai couldn’t even see them.
After Kai got some yelling and singing out of his system, we entered their gated community and drove down the dead-end street to their beautiful home. Kai started talking about his Hot Wheels collection.
“When I get a car,” Kai said. “Then I can have a wife and two kids.”
Jaclyn laughed. “He always says that.”
I turned around in my seat and smiled at him. “Kai. You are well beyond your peers.”
***
Doctors told Jaclyn this disease involved the lowest quality of life for its sufferers, even more so than cancer patients. This is because there is no course of treatment which may put it in remission. Instead, the disease evolves as the child grows, and puberty may cause those affected to experience subdued or escalated symptoms. There is no way to predict how Kai’s body will change, or remain static, in the coming years. All she can do is closely monitor him and his food supply.
Back at the house, I watched Jaclyn put away the meager groceries, eying the pantry. Shelves of protein powders lined the walls. Jaclyn explained her and Khoa try to drink a lot of shakes so Kai knows they “do shakes” too.
Mckenzie, dolled up in princess gear, remote-controlled a Hello Kitty car up to my legs. She said hello per her mom’s request then re-focused on her driving.
Mckenzie was also a premature baby, in the NICU for 3 weeks, also with feeding issues. By six months old, she began developing rashes which doctors dismissed as eczema. Just in case it was allergies, they gave Jaclyn an epi pen. Two weeks later, Jaclyn had to use it. Mckenzie’s body swelled up so severely it looked like her face was tightened by saran wrap. But because she eats (chicken, steaks, chips, cheerios, and the occasional, allergy-free baked good), she does not have a feeding tube.
Kai sat at the table, playing with a Lego toy. After I took a picture of Mckenzie, he said, “My sister is kind of cute.”
Jaclyn smiled. “Kai, tell Megan what you tell the girls at your school.”
He pushed the Lego up and down. “You look very pretty today.”
“Good boy,” Jaclyn said, putting away the Cheerios.
Jaclyn sees the silver lining in Kai and Mckenzie’s shared diagnosis. No one is eating pizza while the other drinks only water. They will always understand each other’s plights.
Once Jaclyn finished stocking the pantry, she showed me a picture of Kai before his feeding tube.
“Do you see his ribs?”
A slight sound escaped from my lips as I took in the difference. Kai’s ribs peeked through the skin, his belly distended like a starving child.
“Kai,” Jaclyn said suddenly, turning. “Don’t get mad.”
I turned around and saw Kai in front of his father, who was sitting on the couch. Dancing With The Stars played quietly in the background as Mckenzie scooted around her car. Kai remained silent, but jumped up and down in frustration, shaking his dad’s hands. Apparently, Jaclyn had told her husband about Kai’s coughing when we came in the house.
“Kai, really. It’s okay. It’s not his fault,” Jaclyn said to him from the kitchen.
I looked at her, confused.
She leaned into me. “He thinks his dad won’t let him eat the marshmallows anymore.”

***
For Kai and Mckenzie, living with this disease is their reality. Instead of using pity, Jaclyn teaches them how to be their own advocates. Kai is learning to analyze the “May Contain” list on food packages. He also makes others aware of his allergies, even, as evidenced with me, before saying his own name. He is learning what his reactions are connected to, and what he can do to prevent them. Jaclyn strives to educate her children as best as possible, but she also wants to make the world—already impossibly dangerous—just a little easier for her children by educating others.
To build this awareness, Jaclyn started her nonprofit organization My Simple Palate. She hopes to educate communities on allergens, raise awareness of rare diseases, and advocate against the type of bullying and stigmatization Kai experienced in his own classroom. She has also joined community groups and participates in the Mission Viejo Chamber of Commerce.
When I walked back in the kitchen after chatting with Jaclyn in private, Kai had calmed down and returned to playing. Mckenzie watched her car zoom past the couch. Jaclyn asked Kai one final question: what do you want to be when you grow up?
“A police officer. But don’t worry mom, I’ll still do my shakes.”
Jaclyn Tran is a member of the Mission Viejo Chamber of Commerce and the founder of My Simple Palate, a nonprofit organization aimed to raise awareness of food allergens, rare diseases, and bullying. She has recently become a certified Aller-Coach to begin teaching other families how to manage these types of severely restricted diets. You can read her recipe ideas and contact her at www.mysimplepalate.com.
Megan Sandberg is a Staff Writer at Ink Wordsmiths, a content-creation company located in Mission Viejo, CA specializing in all things-writing.