Kirsten Chapter 2 - "Letting Go"

Two years ago, we moved Jaxon into his college dorm. I could have never predicted the lessons that I myself would learn and it wasn’t what you might expect.

Jaxon has severe food allergies to milk, tree nuts and fish. He started out life with 11 food allergies. After a life-threatening reaction as a baby, we began our journey as food allergy parents. My husband and I sought out a food allergy pediatric doctor at Arkansas Children’s Hospital. We educated ourselves and then made opportunities to educate others. We worked hard behind the scenes making activities like sports, parties and band as safe as possible so he wouldn’t miss out. I had a mission and I can honestly say that it consumed me.

The prevalence of food allergies wasn’t quite what it is today. I didn’t have the internet at my fingertips and I certainly didn’t have Facebook support groups. I did have determination. I didn’t want to accept the hardships that I knew my son would have to face every day. I wanted what all parents want for their kids--normalcy, inclusion and happiness.

Photo by  Randy Bacon

Photo by Randy Bacon

So we made 8-hour round trips to Arkansas Children’s Hospital where Jaxon had blood and skin tests, food challenges and was one of the first participants in an FDA Phase 1 study in peanut Oral Immunotherapy. This study took Jaxon six years to complete and resulted in marking his peanut allergy off his list. The study was new, scary and involved trips to the hospital every two weeks. It would require daily consumption of tiny amounts of peanut powder in hopes that he would build up a tolerance. The only reason Jaxon agreed to participate was the hope that food allergy kids coming up behind him would benefit, and they certainly have as OIT is now a treatment option.

So after 18 years of learning from experts, there was one expert that I had yet to learn from. It was my son. When Jaxon was asked to write his story for 7 Billion Ones two years ago, he at first refused. I was baffled. How could he not want to take this opportunity and use this platform to teach others? He told me that he had nothing to say that would be worth reading. After pleading with him to write his story anyway, he eventually agreed to try.

I’m embarrassed to say that it never occurred to me that this would be a painful process for him. Throughout his childhood, he didn’t let food allergies hold him back. He played sports. He was in band. He went to parties. As parents, we did our due diligence. We supplied safe foods when possible, trained others on epi-pen usage, educated his friends, teachers, and other adults. As far as we were concerned, he was living as normal life as possible.

When I read Jaxon’s story two years ago, I cried. I cried for the isolation he felt despite my best efforts. I thought I had succeeded in helping create a life where his food allergies didn’t hold him back. But I learned he felt loneliness at times. Even though he would attend school pizza parties and act like it was no big deal by not eating or by bringing safe food, he still felt left out. He felt different because he was different and admitting this made these hurtful feelings very real. But what emerged from telling his story was his liberation. When Jaxon put his feelings on paper, he was arming himself with the tools he needed for the next chapter in his life.

Jaxon’s story was released just prior to starting college. Needless to say, we never imagined the reach it would have. As it turns out, Jaxon did have something worth reading. Jaxon’s positivity is contagious, but the part that resonated with most people was how he addressed the social isolation element of food allergies. As we received more feedback from the story than we could keep up with, we learned that his words were empowering other food allergic kids. And in turn, this empowered Jaxon.

That fall, Jaxon was asked to speak at a Food Allergy Research & Education (FARE) Teen Summit. He spoke in an “adult-free” room where he and his peers discussed how they deal with feelings of isolation in school, around friends, and in dating situations. They left the room feeling validated and strengthened knowing they weren’t alone. They learned it’s normal for their allergies to make them feel different in some situations, and that these allergies don’t define them. After the summit, Jaxon and his peers left with more confidence and determination to face their daily challenges.

When I drove away from Jaxon on his first day at college, I left with a new understanding. We had met with the food service company at his college three times during that summer. We informed the campus clinic about his severe food allergies and history of anaphylaxis. We talked with his roommate, who coincidentally happened to be an Eagle Scout with epinephrine training. And then I officially passed the baton to Jaxon and have watched him flourish over the past two years.

Photo by  Randy Bacon

Photo by Randy Bacon

There have been a few a hiccups along the way, including two ER visits, but he has navigated through social events, fraternity retreats, and an Astro-physics conference. He no longer lives with the “food allergy kid” label and controls who and when he tells someone about his life-threatening condition. He has learned when and who to trust in preparing his food. Most importantly, he is finally living a “normal life” on his own terms.

As it turns out, Jaxon is the real expert on food allergies. Even though I’ve been with him every day on this journey, I have never walked a day in his shoes. Even though I have armed myself with research and medical facts, I have never known the feeling of sitting at IHOP drinking a glass of water while all my friends are eating breakfast and the staff decides last minute that they can’t provide me a safe meal. Even though I’d like to secretly follow him around each day with a basket of safe food, I have to let go.





Kirsten's Story "Now An Expert"

I’m a mother. I’m a nurse. I’m an educator. I’m a social worker. I’m a researcher. I wear many hats. After raising a child with severe, multiple food allergies, I’m now an expert.

Eighteen years ago, my son Jaxon was born. I was young and inexperienced with all the challenges first-time motherhood brings. I will never forget the day when we were told our baby was allergic to milk, eggs, peanuts, tree nuts, fish, beef, pork, poultry, wheat, corn and soy.

When Jaxon was nine months old, we traveled to Kansas City for a weekend trip visiting my husband who was there for job training. I was pushing Jaxon in the stroller at a shopping mall. I gave him a spoonful of my soft serve ice cream and continued pushing him. Although I couldn’t see his face, I could hear him smacking his lips. I remember thinking that he must really be enjoying the treat. So I stopped walking and moved to the front of the stroller to give him another bite. What I saw frightened me. Jaxon’s face was red, blotchy and swollen. His lips were giant and looked like two blisters. I had no idea what I was dealing with. As luck would have it, there was a hospital emergency room on the opposite corner and I rushed there. After treating Jaxon, the ER doctor told me he was probably allergic to milk and we should avoid it. It was simple advice given with no haste or concern, which is exactly how I treated it.

7 billion ones, randy bacon, jaxon adams, kirsten adams, food allergies

Then a few months later, I learned just how concerned I should be. My husband and I were having dinner with my parents in Ozark, Mo. My mom gave Jaxon a tiny bite of fish. In no time, his face began to swell. All I knew about food allergy reactions was the small amount of information I had gathered since his ice cream incident. All I was sure of was that we needed to get to the emergency room fast.

My husband, Jaxon and I jumped in the car and started driving at a high speed up highway 65. My son was eerily quiet and his physical appearance was changing by the second. He looked like a patchwork quilt of burned, red skin. He was no longer recognizable as my baby. My husband called 911 from the highway and we were told to continue to the ER and we would be met by a team of medical personnel. Time was of the essence. During that drive, Jaxon never made a sound. And at one point, I could no longer tell if he was alive.

That day will forever be stuck in my mind and I relive it every time my son walks out the front door without me. That day forever changed me. I was no longer just a mother, I was a fierce protector and I had a lot I needed to learn. I had no former experience with food allergy. The extent of my knowledge was that some people could get a rash if they ate a strawberry, for instance. I had no idea that food could be a poison and kill its victims.

Lucky for us, Arkansas Children’s Hospital in Little Rock is one of the leading pediatric research hospitals in the country on food allergy and only a four hour drive away. In our quest for food allergy knowledge, we made an appointment with the head of the allergy department and off we went. When we arrived at our appointment with our list of 11 food allergies and our malnourished, gaunt baby with a “failure to thrive” diagnosis looming near, I was feeling pretty hopeless. But after our visit with the doctor, the research staff and a nutritionist, we were finally gaining some of the tools we needed to help our son survive.

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Our doctor was hopeful that our previous diagnosis of 11 foods either contained some false positives or enough time had passed that Jaxon could have outgrown them. We repeated both blood and skin testing to get an idea of what foods might fall into this “gray area.” So over the next year, we would return to the hospital for food challenges. This was both exhilarating and excruciating. We were able to cross many foods off his list while also getting confirmation that his milk allergy was still one of the worst. During his milk challenge, Jaxon only had one sip when he again experienced anaphylaxis.

By the summer before kindergarten, Jaxon was down to five foods: milk, eggs, peanuts, tree nuts and fish. After three years of research, doctor appointments, hospital stays and finally getting a handle on how to keep my son alive, I was not prepared mentally to send my son off to school. So that summer, my husband and I met with the school’s principal, counselor, 504 Coordinator, and future teacher to come up with a strategy to get Jaxon through a school day. Although I was apprehensive at first, I quickly learned that Nixa Schools was my teammate. We both had a vested interest in Jaxon’s success. We came up with a plan and not demands and this made all the difference.

I knew that many of the people that would be around my son had the same lack of food allergy education that I had as a new mom. So when my son was to start school, I began my quest of taking my new tools and educating these people. We had already met with the school staff and had a plan, so the next step was meeting with the parents of our son’s future classmates. Nixa Schools allowed us to speak at both parent orientation and also directly to Jaxon’s classmate’s parents. My husband and I poured our hearts out to these parents. I remember my husband telling the group, “we just want him to come home at the end of the day.” We urged them to walk a day in our shoes and begged them not to send messy toxic foods like yogurt and peanut butter with their children that might end up on desk tops and door knobs. Once they heard our story and saw our emotional struggle, they offered us empathy and compassion that still gets me emotional.

But it was the next group that I educated that surprised me the most. Jaxon’s 5-year-old classmates turned out to be his protectors and mini body guards throughout all his years in school. Jaxon and I spoke to these kids on the first day of school. I told these kids that I needed their help to keep Jaxon safe at school and they took their job very seriously. I told them how certain foods could not only make Jaxon very sick, but could kill him. I explained that Jaxon would always bring a safe lunch from home, but that I needed them to wash their hands after eating and drinking so that food residue didn’t spread to the surfaces of the room. We joked about all the foods that Jaxon had never tried like chocolate chip cookies and pizza. I went into that classroom thinking these kids might laugh at my son or bully him in some way, and I left that classroom realizing these kids just could be the key to his safety.

7 billion ones, randy bacon, jaxon adams, kirsten adams, food allergies

Jaxon and I have always had a special bond. We both are cut from the same cloth in that we don’t want a sugar-coated version of the truth. So as soon as he could talk, I began telling him that certain foods could kill him. I wasn’t trying to scare him, although I can see that as a viable strategy, I was trying to educate him. As his mother and protector, we had to trust each other. And when he was in third grade, I needed all his trust for what I was about to ask him to do.

We got a call from Arkansas Children’s Hospital asking Jaxon to participate in a Phase 1 Immunology study that might one day lead to a cure to peanut allergy. Up until this time, strict avoidance of a food was the only option for those suffering from food allergy. This study was suggesting that if you could give a person a tiny amount of a food, then by slowly increasing a daily dosage of the food, this person could build up a tolerance. I had two concerns with this study. The first concern was that when a similar study was done with an injectable food protein, a child died from the study. So in Jaxon’s study, the food protein would be ingested instead of injected. And secondly, Jaxon would have to begin the study by eating enough of this peanut powder to have a reaction so the researchers could figure out at what amount to begin with.

So after telling Jaxon his whole life that a peanut could kill him, I would now be asking him to eat peanut every day. I can truly say that Jaxon’s only motivation for being a pioneer in food allergy research was to help those kids coming up behind him. As a mother, I was hopeful that the study was also the way to his cure. After lengthy discussion, my husband, Jaxon and I decided the risks of the study were worth the possible outcome. So for the next six years, Jaxon and I made the trek to Arkansas Children’s Hospital. We discovered that 1/12 of one peanut would cause anaphylaxis in Jaxon. That was a hard day. But over the next six years, countless trips to Arkansas, and daily vigilance of ingesting peanut powder, Jaxon became a pioneer in food allergy research. Because of him and the other few kids that made it through this study, the treatment of food allergy is forever changed. Immunology is now being practiced all over the country. Jaxon is my hero, and his list of food allergies dropped down to four.

The thing about food allergies is that we can spend years gathering information and educating those around us, and accidents will still happen. When Jaxon was in seventh grade, he and a large group of students won a “dreaded” pizza reward party for good behavior. I had done my due diligence by emailing the assistant principal the day before to remind her about the need for hand washing before any activities at the party. The cheese grease from the pizza can get all over the kids’ hands and be transferred to other surfaces. The party was at the end of the day and when I arrived to pick up Jaxon, I was shocked. His eyes were nearly swollen shut and he had hives all over his face and body. I drove him directly to the ER and he spent the next 10 days sick and on a round of steroids.

7 billion ones, randy bacon, jaxon adams, kirsten adams, food allergies

I took a picture of Jaxon and took it into the school to meet with the assistant principal the following school day. She said there were so many students at the party that hand washing couldn’t be enforced. After eating the pizza, the kids played relay races where they touched each other and handed off items. That contact with milk (pizza grease) caused Jaxon to have a food allergy reaction. Since the party was at the end of the day, no adult noticed Jaxon’s swelling and rash. Ironically, one of those boys that attended kindergarten with him did notice and said something to Jaxon as he was on his way out to the car line to meet me. So as careful as we all had been over the years, Jaxon still had a food allergy reaction at school that wasn’t noticed or treated by the staff or even Jaxon himself. Do I think it will happen again?

Absolutely.

One struggle in educating people on food allergy is that those that suffer from it might have varying degrees of severity leading to different precautions. With Jaxon, we have to be leery of cross contamination. This means eating at restaurants rarely happens. He has been able to eat successfully at Chipotle and Red Robin, but most restaurants aren’t equipped to deal with multiple allergies. And honestly, it’s hard to trust strangers to change their gloves or use fresh utensils. We have established a personal relationship with the staff at Primas in Ozark which is willing to cook Jaxon’s chips and taco shells in a pan of separate oil. We all take for granted the ability to show up at a restaurant and order off of a menu, or to attend your school’s pizza party, or accept an invitation to your friend’s house for dinner, or accompany your bandmates on a trip to Hawaii. These are things he has never been able to do.

7 billion ones, randy bacon, jaxon adams, kirsten adams, food allergies

Now we are moving on to a new frontier—college! As Jaxon looks at which college to attend next year, he has to consider which school can safely feed him. Four college visits later, we have found that the success of eating safely will again hinge on our ability to establish personal relationships. His perspective colleges have agreed to work closely with us on ordering safe foods and preparing special meals each day. After 13 years of bringing a sack lunch from home, Jaxon will now be eating three meals a day in a cafeteria. I’m again passing the torch to complete strangers in hope that they will care for my child as vehemently as I do.

I’m also passing the torch to Jaxon. I will no longer be there on a daily basis to advocate for him. Have I taught him enough? Can I trust him to care for himself as I have cared for him? Will he get caught up in the young adult carelessness that accompanies some kids to college? How will he handle living outside of my protective bubble? And after all these years, we still just want him to come home.