Tomorrow, the Nichols family will leave their home in Minnesota and drive to Colorado Springs, where they’ll check into the Marriott Residence Inn and attend Angel Service Dogs Academy, an intensive scent-detection-dog-handling workshop. Over the weekend, they’ll meet Tracy, the service dog I raised from a puppy, and over the next two weeks will learn how to use her to protect 13-year-old Benjamin, who’s been coping with a life-threatening allergy to peanuts and tree nuts since infancy. Recently, I interviewed the Nicholses via Skype, and talked with Benjamin, his mother, Jennifer (a preschool teacher), and his father, Joel (a professor of law at the University of St. Thomas School of Law) about Benjamin’s allergy, their decision to acquire Tracy, the fundraising they’ve done to pay for her, and their hopes for their new $20,000 dog.
So Benjamin, how will having a service dog change things for you?
The constant question [from my classmates] is: ‘Is she gonna come to school? Is she gonna come to school?’ I say, ‘Yeah, she’s gonna come to school, but she is not a pet.’
How will Tracy help you at school?
Kids eat all the time at my school, I don’t know why it’s allowed but it is. And they’re constantly eating so she’ll help. I don’t know what they ate, and they’re really not thinking about what they eat, most of them just don’t care, really.
Even when you tell them you have this allergy?
Not usually. So I really have to be careful about residue at school because I could have a reaction.
Have you ever had a reaction at school?
In second grade. I was constantly having reactions.
What would happen?
I would have to go the nurse’s office almost every day. Because I was having reactions at school. And then I went anaphylactic.
What’s that like? How do you explain it to kids who don’t understand what a big deal this is for you?
When I tell them that it could kill me, their mouths hang open, like ‘Whoa. Seriously, it can kill you?’ Usually, they don’t understand that part, so now I describe the most recent time I went into anaphylaxis when I went to Italy in 2010.
Someone had prepared pasta, thinking that would be okay for you.
My mom had prepared pasta. The label was in Italian, there was a word in Italian for ‘cashew’ that we didn’t know. It was buried in the middle of the label. There were no allergy statements or anything. We thought it was fine but one bite sent me into anaphylactic shock.
What does it feel like when that happens to you?
It’s been different every time. In second grade, my throat started to close and they gave me an EpiPen. And in Italy, first my throat started to close, and I said, ‘Dad, my mouth!’ But we didn’t think it was major, we thought it was some sort of residue reaction, so I just took Benadryl and Zyrtec. Then my stomach started to hurt but it didn’t feel like I was going to throw up, it felt like I had really, really bad gas pains and I wanted to hunch over in a ball. Then I threw up and that’s when they knew I was going into anaphylactic shock.
So your parents called a cab and you went right to the hospital …
We thought it would be easier than trying to tell an ambulance driver who we were and why we needed to get to the hospital.
What’s the Italian word for ‘EpiPen’?
I’m not really sure. We traveled with about eight of them.
Did you take an epinephrine injection before you got in the cab?
Is that scary when it happens to you?
Kind of, yeah. And it really hurts. What scares me most is if I had to give it to myself. Because I can’t walk on [that leg after I’ve had an injection]. If I had to give it to myself, somebody would literally have to carry me [to get help]. And if I’m with a friend my age, that could be difficult.
Because you can’t walk.
I guess I could drag myself if I was alone. It would be really hard.
That’s happened a couple of times to you now. The thinking with Tracy is that she’ll be able to let you know something’s been contaminated so these sorts of things won’t happen.
We haven’t had many ingestion reactions. We work really hard to never have an ingestion reaction.
It’s usually residue for you, something’s on the surface, you touch it and it gets on your hand and then into your mouth or eyes.
Do you want to know anything about Tracy? I raised Tracy from a puppy when she was six weeks old, and had here for more than six months.
Thanks for the pictures; she’s awfully cute.
The thing I love most about Tracy are those amber eyes, her beautiful amber eyes. She looks right into your eyes and it’s almost like she understands what’s going on in your head. … When I had her, her favorite game was playing Frisbee whenever she wasn’t working. She’s a very athletic dog. If you throw it, she will leap five feet in the air and catch it.
That’s good because we have some Frisbees that our dog Annie absolutely won’t chase.
So you have a dog at home? What kind?
She’s a golden retriever, she’s six years old.
Out of all the Angel Service Dogs we’ve raised—we’re on our fourth one right now—Tracy was my absolute favorite. She’s a remarkable dog. And I’m sure you can’t wait to meet her, right?
Right. I had a really weird dream about her last night.
What was your dream?
I dreamed that I was in Colorado, and I needed one penny to and I couldn’t find anyone to give me a penny.
What did you need the penny for?
Oh, to pay for Tracy. So you had raised $19,999.99 and all you needed was one more penny. How much have you fundraised?
Fifteen or sixteen thousand dollars.
Wow. How did you raise all that money?
I’m doing a bike ride on Sunday.
You’re going to ride 30 miles in the Minnesota Ironman, and you got people to sponsor you for Tracy.
We expect to get more because I was in the newspaper today.
What else did you do to raise money?
I had a garage sale. I did some gardening, some babysitting.
A cousin of yours did some dog sitting and sent you all the money he made.
That was nice of him. I actually had no idea. He decided he was going to walk dogs, and he said, ‘I’m going to give all the money I make to my big cousin Benjamin.’
How old is your cousin?
He’s nine. His family came over and on the last night he was here, he brought out this bag of money …
How much was in it?
That’s a lot of money. What did you say to him?
I didn’t really know what to say at first. I said, ‘Thank you so much. That was really, really nice of you.’
So how do you explain to people how much getting this dog means to you?
Most people ask why I’m getting it—some don’t know about my allergy—usually I just say it’s because of my allergy and the dog can sniff out peanuts.
Most people don’t understand what an Allergy Alert dog is. Often when I’m out with one of my dogs, and the dog has a vest on, people think I’m blind and try to help me across the street! That’s the thing about your allergy isn’t it? People need to get used to the fact that a disability isn’t always something that they can see, like a blind person with a cane, or a paraplegic person in a wheelchair.
My dad has a law student who uses a scooter and he has a service dog to help him get around. I got to actually meet him, and we talked about how service dogs do different things than people think.
One thing you’ll find is that an Allergy Alert dog gets people’s attention, and you do a lot of explaining about what peanut allergy is, and how the dog works. But you probably do a lot of that already don’t you?
Yeah, I wear an EpiPen around my waist.
In a fanny pack. Do you have it on right now? Wow, you even wear it around at home!
Our home is nut-free, but I always wear it to make sure it’s with me when I leave home. When they see my EpiPen, kids are always asking me, ‘Do you have diabetes?’ And I say, ‘No, I have a life-threatening peanut allergy.’
Well, it’s getting close to your bed time so I should let you go. How much are you looking forward to meeting Tracy in Colorado?
I’m really excited!
So, Jennifer, when did you become aware of Benjamin’s allergy?
He was a year old, and was trying one new food each day. So I gave him some peanut butter and his face was pale but then he seemed fine. Next day, [I gave him more] and he had a full-blown anaphylactic reaction, I called the pediatrician and she said, ‘Come to my office, but if he stops breathing, go to the ER.’ This is a medical condition that has unfolded in the last 12 years. There were lots of things I did not understand about food allergies then that I do understand now. I gave him a huge dose of Benadryl watched him carefully in the car. His pediatrician gave him steroids in her office and began educating me about food allergies. … I even had a child in my class who had a peanut allergy. I teach preschool right now, but I was teaching elementary school at the time. I was not taught to use the EpiPen. The protocols are changing. I think that doctors and the allergy community are doing a much better job now of explaining how to avoid allergens, how to recognize anaphylaxis, and how to manage a food allergy day -to-day. For example, Benjamin now has a step-by-step anaphylaxis plan. It tells us clearly how to react to different symptoms. We didn’t have a plan like this before we went to Italy. Early on, there were no food labeling laws. Allergens could potentially be listed under Latin names, scientific names, or by the phrase ‘natural flavor.’ Early on, our pediatric allergists didn’t fully communicate the danger that residue posed, and I’m not sure the medical community understood as well as they do now. This is something that we have learned how to navigate and now I am beginning to see training videos address the dangers of residue. As hard as it is now to manage a food allergy, it was even harder when he was first diagnosed. The prevalence of allergies over the last 13 years has changed protocols.
Do you have any peanut-allergic kids in your preschool now?
We have one severe, five that have been diagnosed.
What do you think is going on with all these severe food allergy diagnoses?
I think something has changed in our environment, in our food supply. Something has changed and it is affecting the normal development of our children’s immune systems. This is my best guess. Benjamin seems to be on the first big wave of allergies. When he was in preschool, we were one of the very first parents who had a child with a food allergy. His kindergarten preschool flat refused to make their school or his classroom peanut-free. In fact, the director told me she would never do that. Between Benjamin and Natalie, they had so many students with food allergies that the preschool was forced to go to a peanut-free policy … so something is going on. I should also add that even though the school initially wasn’t peanut-free, they did take care of Benjamin. The biggest challenge for us at the school was that we were not able to participate in several all-school events where there were a lot of peanut butter and nut desserts. His teachers took enormous care of him in the classroom or I wouldn’t have stayed there.
As a parent, you’re always trying to keep your kids safe. What’s it like for a parent who takes a kid to the allergist and that diagnosis falls in your lap?
It’s so overwhelming. I was telling a reporter who was just here, ‘You know as a parent that there are things you need to do to keep your children safe. For example, you keep them away from fire, and make sure they know that that’s not safe. When you walk into a doctor’s office and you find out your child has a food allergy, and they say you can never ever go to an ice cream parlor because it is too risky, you are forced to discern a whole new set of risky situations that should never be a life-threatening risk to your child You have to worry about the cereal aisle now.’
So the cereal aisle is off-limits to Benjamin.
He can walk through it, but can he pick something off the shelf and eat it? No way. Absolutely not. And I had to learn how to read that label very carefully. At the time he was diagnosed, we didn’t even have food allergy guidelines put into language that an eight-year-old could read. My shopping time went from a regular run to the store to two hours because I had to read the label on every single thing and I had to make sure they weren’t listing peanut under something else, another uncommon name. I found out I had to call companies and find out if the food was cross-contaminated. I had to learn what cross-contamination was! It was very stressful, scary, overwhelming.
So they told you Benjamin couldn’t go to the ice cream parlor. Where else?
They told me we should never go to bakeries. Candy is unsafe. Never go to ethnic restaurants, particularly Chinese and Thai, those are always off-limits, they fall under the category of ‘terribly unsafe.’ I found out chili often has nuts in it. I found out that Italian restaurants might thicken their tomato sauce with peanut butter and Mexican restaurants might thicken refried beans with peanut butter. I found out I had to worry about jelly at other people’s homes if they made peanut butter and jelly sandwiches and used the same utensil. I found out you also should worry about the butter in the refrigerator for the same reason. So the risky situation moved from the ice cream parlor, to common restaurants, to your mother’s house, and possibly to your own refrigerator! And then they give you a list of words to look for to find hidden peanuts in other sorts of foods.
You go from just shopping for groceries to reading everything.
Everything. Even Gummi Bears have peanut in them. I had no idea Gummi Bears had peanut in them. So I had this experience with a doctor and a nutritionist, and then I had to try to communicate that to somebody else. People I love would look at me like I had fallen off the loony cart, [and think] ‘This is a real nutcase here. She just needs a lot of attention.’ And how do you communicate to them, ‘Okay, I know a Gummi Bear doesn’t seem like it would have nuts in it, but you don’t understand the way it was produced.’ And you get the eye roll. And that’s hard.
‘Another overly protective parent with a too-precious child,’ they think. ‘What makes your child more special than mine?’
It makes eating at a friend’s house hard. It makes potluck dinners impossible. It interferes with family gatherings. It forces families to set aside family heirloom recipes. It makes eating out hard. It requires teachers to change the way they have always taught a lesson. I understand why food allergies are so threatening to people. It is hard and overwhelming to manage and it forces us to change even the most mundane events in our lives. But on the other side of all of these hard situations is the real understanding that a mistake could cost Benjamin his life or force him through a traumatic event like a trip to the hospital. It is a very hard place to be as a parent.
Joel, how do you explain what it’s like to parent a child with a life-threatening peanut allergy?
It depends on the situation. It’s different now with him than it was when he was younger. You asked about the dog. He’s at a point now where he needs a lot more independence, given his age. That’s appropriate, and it’s what we want him to have. And it’s what every 13-year-old wants. He’s really good at taking care of his allergy. He’s not as good as we are, but he’s actually really good. There was the time in Italy when we missed it, stuff we made at our table. There’s this level of independence he’s gaining. There’s one story that Benjamin didn’t tell you that illustrates his level of meta-awareness about his allergy, at least to me.
Tell me about that …
After the Italy experience, when he would have been 11, there was this series of sermons we were listening to and the preacher asked, ‘What would it be like if you only had 30 days to live? How would you live your next 30 days?’ One of the things you do as a parent is that you initiate a conversation with your kid. He had listened to the series, and Jennifer asked Benjamin, ‘What would you do if you only had 30 days [left]? How would you live?’ And we were kind of surprised at his response. He said, ‘Mom, I have a peanut allergy. I never know if I’m going to be alive tomorrow.’ That was the end of the conversation. He didn’t say it to be rude; it was just a statement.
How did that hit you when you heard Benjamin say that?
It hits you in the gut. I’d been living with that for a long time. … When I teach class, I actually tell my students, ‘I apologize but I have my cell phone with me, if it rings I’ll try to ignore it but I may need to get it.’ Nothing’s ever happened, but this semester, for the first time, my phone rang during class and I turned it off because it didn’t say on the caller ID that it was someone I should’ve recognized. And as soon as I turned it off I realized that it had been the prefix from the first three numbers that are associated with the city. I thought, ‘The school just called me!’ And I was supposed to be lecturing and I thought, ‘They’ll call me back, and Jennifer knows how to reach me, so she’ll call me twice to signal me if there’s something big,’ and I realized as I was teaching that after two or three minutes of waiting for this call I wasn’t making any sense in my lecture anymore. This had never happened in nine years of teaching, but finally I had to apologize and say to the students, ‘Guys, I need to go and check this phone message.’ So I took five minutes and it ended up being somebody from the community center, not the school, so it was a false alarm. But it’s really hard. You have to strike a balance. Now he knows what we’ve known for a long time—that he’s always 15 minutes away from dying. All the time.
For a kid his age to be aware of that and carrying it with him everywhere he goes, that’s a big deal. What do you think, Jennifer?
It was such a scary fast reaction in Italy and it was progressing faster than we had ever seen before. He knows now when we say it is a life-threatening allergy, it is the truth.
Even that fifteen-minute window between life and death that you once counted on suddenly collapses and you’re left wondering, ‘How much time do we actually have to get him to the hospital?’
Yes, you absolutely do wonder that! Right after that happened, it scared Benjamin. I think that’s the point that he figured out, ‘This is scary real.’ Anaphylaxis hits you in the middle of a perfectly normal day. It’s not like you get a warning. Somebody at church asked me the other day (there was a food event and I was asking about what I needed to do about making food for Benjamin), ‘Oh, is he having trouble with his allergy?’ And I wanted to sigh and say, ‘No, you don’t understand. Anaphylaxis happens on a day when you would never expect it. You don’t get a warning. It is always right there in front of us. We never get a break from the possibility of anaphylaxis.’ It’s the unknown that has to be expected and prepared for every time. It was really hard on Benjamin after Italy. It was hard on the rest of us, as he worked through his feelings and his fear and we worked through our feelings and our fear. Every anaphylactic episode makes you feel very vulnerable. It is hard to return to the normalcy of just eating at a table. It is even harder to want to travel or eat out.
What happens when Benjamin has a reaction?
One of the really cruel pieces is that what seem like even minor reactions can turn anaphylactic. But not every reaction is anaphylactic. You have to take every reaction seriously and you have to watch every reaction very carefully. Benjamin has been in anaphylaxis a total of five times. Every single time, the onset was different.
So you never know from one time to the next which reaction is going to end in anaphylaxis.
You never know. It’s very stressful. If his throat closes, now I know it’s a no-brainer. If he throws up, it’s a no-brainer. If he has hives up and down his body, it’s a no-brainer. But when it starts on his face, our doctor has always said give Benadryl and observe. You look for that second symptom. One time it started on his lips and then spread to his face, and I started to see the purple around his eyes, and that’s right on the border of, ‘Ooh. What are we doing now?’ So I have sat up late into the night monitoring him, making sure that he was breathing, that there wasn’t anything happening to his body, and wondering if I’ve done the right thing by not giving him an EpiPen.
I think having the Allergy Alert dog at his side will help people understand that you’re not being overprotective, that this peanut allergy stuff is very real. It takes away the invisible, emphasizes that this is a full-blown medical condition.
Right. And we’re getting into the teenage years, and the teenage years are when the most deaths occur.
You go from being the parent who’s managed this and kept your child safe from infancy up until the teenage years, then not only do you have a life-threatening food allergy, but you’ve got all the teenage behavior going on, the risk-taking, the peer pressure, wanting to fit in …
It’s a really good time for a dog! This is a dog that will help him get through high school and into the first year of college, where we’ll have to worry about a whole other set of issues. She will help him have independence and do things like go to the movies, a place where there’s a lot of food residue. … School is stressful for Benjamin. He wants to be there, and the dog I think will make his life less stressful.
Will the dog help temper the stress that you and Joel carry?
It will. And we’ll feel much better knowing Tracy can help him not have residue reactions. I worry about situations where we have to explain and trouble shoot with people who don’t want the dog. But I’m perfectly game to do that.
Fortunately, you have the Americans With Disabilities Act on your side. But you end up having to do a lot of education whenever you bring a dog with a vest with you in public. You become not only a walking peanut allergy information specialist, you’re also a walking service dog information specialist. Tell me what your hopes are for Tracy and Benjamin, and how much she means to your family.
This is huge. This is really huge. My hope is that Benjamin can feel free to be independent. That he can go to Scout camp and not worry about what another kid ate in the tent. Tracy will help him do that. That he can go to the movies, and he can go to the mall, and he doesn’t have to have me sitting somewhere watching. And I hope that Tracy will help him communicate to other people that he’s not making this up and that management [of this allergy] is truly difficult. That doesn’t sound like a $20,000 fix, but when you have somebody say to a child, ‘It’s okay, you can eat this,’ and the child knows that he can’t, that’s really hard. This is going to be very helpful to Benjamin and give him the legitimacy to make his own decisions.
Well good luck. Tracy’s a special dog. Each one of these dogs is its own special gift, they’re such remarkable animals. But Tracy, she’s more than a $20,000 dog; she’s a one-in-a-million dog.
What we’ve always tried to do is live as full a life as possible while being very respectful of the allergy. One of the things I’m hoping is that Tracy will help Benjamin continue living as full a life as is possible on his own, while continuing to manage his allergy. That’s what we want.
She’s a very driven dog. The more you load on her, the happier she is. She has a lot of heart. A very, very big heart, a bottomless well.
That’s awesome. Well, she’s going to a sweet, precious boy.
Tracy’s forever boy.