Aaron's Vice

Nov 30, 2019

Many of you have asked how Aaron is coping with being home all day every day.

I'm not saying he doesn't get bored or lonely. He does. But the truth is, he is a homebody at heart. He always has been. Getting out to go to the hospital twice a week and an occasional visit to his grandparents' house is enough to keep him from going stir crazy.

No, the issue for Aaron is not lack of company.

It's food.

Ever since Aaron's transplant, he has been on a low-microbial diet. Simply put, this means that he has to avoid foods that have a higher chance of or are more prone to containing bacteria.

Things like certain fresh fruits and vegetables with lots of surfaces or crevices, making them difficult to wash (think broccoli, grapes, raspberries, pineapple, or lettuce). Also any foods that have been cooked and then later reheated. Or foods that never reached 160 degrees F in the first place.

He has his own individual servings of butter, cream cheese, ketchup, barbecue sauce, milk, peanut butter, salt, and anything else that would normally come from a communal jar or jug accessed by lots of people over the course of several days or weeks.

And finally, and this is the big one for him, he has to avoid all food from restaurants, bakeries, ice cream shops, or fast food joints. It is impossible to know for certain how this food was prepared, how long it has been sitting out, who has accidentally sneezed on it, etc. So it is just easiest to skip it all.

Although there is some debate about whether this type of diet is necessary or successful (and even the nutritionist had a hard time giving a clear, definitive list of do's and don'ts), it makes sense that a person with a compromised immune system like Aaron's would do well to take precautions to avoid bacteria.

I knew this was going to be a sore point for Aaron from almost the very first day.

He had been in the hospital less than 24 hours when his Grandpa Paul swung open the door to his room with a smile on his face and a pink box in his hands. The box was from Mrs. Backer's Bakery, and it was filled to the brim with all sorts of delectable pastries.

It is a well-known fact that if you're in the hospital, you can count on Grandpa Paul to provide the baked goods.

Aaron hadn't been excited about one single thing on the hospital menu, but when those pastries were plunked down on the table next to him, he said, "Those smell so good." I tensed. It was my first time having to deny him food, and I didn't want to do it. I stalled for time: "Well, Aaron, I think we better check with the nurse . . . "

Tracie broke the bad news in one swift blow, "No, I'm sorry, you won't be able to eat those."

Grandpa Paul tried to reason with her, "The pastries were in a glass case! I watched them take each one out! They were wearing gloves!"

But it was no use. Tracie wouldn't give her permission, and I knew I couldn't be the one to condone breaking the rules. The pink box was tucked away out of sight, but Aaron's face had gone impassive. He pulled the blanket up to his chin and turned his back on us, but not before I glimpsed his eyes, blurry with tears.

That night, I took the pink box home. The other boys crowded around me, curious about why they were getting a treat. When I explained, Max said, "I wish you hadn't told us. I don't feel like eating any of them now."

Ever since that day, food has continued to be the one thing that can trigger Aaron's emotions faster than anything else.

In the hospital, it was a frequent source of contention between the two of us. I coaxed him to order something from the menu; he countered that he wasn't hungry; I ordered something anyway; he refused to eat it because he "didn't want it in the first place."

We tried to keep him well-stocked with a variety of foods besides the ones that were on the limited hospital menu--cereal, cookies, candy, crackers--anything that would boost his calorie count each day. I think the hospital is probably the only place where you can eat a king-size package of Sour Patch Kids and have three different people compliment you on your amazing appetite.

One of the things Aaron craved in the hospital was a big, soft pretzel. He had had one when he was in the hospital the first time following his diagnosis, but it was one of the foods that had been removed from his menu once he'd had his transplant. We were allowed to make food at home and bring it to him, so I spent one afternoon carefully whipping up a batch of soft pretzels.

It was probably the most stressful thing I've ever baked. I banished all of the kids from the kitchen and sanitized every surface and probably washed my hands a dozen times before I was finished. After all of that, I was sure I'd get to the hospital and he would say he no longer felt like soft pretzels or he would take one bite and tell me they didn't taste right.

But he didn't. Instead, I watched him gobble down two big pretzels, one after the other, and then lean back in his bed with a satisfied smile. I decided it was worth the stress after all (not to mention that they were worth 300 calories).

Since we've been home, it's been much easier to avoid food angst. But it flares up every time someone brings by caramel apples or homemade cookies or fast food, and he watches other people enjoy something he can't have.

This week we celebrated what is arguably the biggest food holiday in America. We decided early on that we would spend it at home, rather than risk the germs and bacteria prevalent with a larger group. Doing it at home meant that we didn't have to deny Aaron anything. He ate the turkey, rolls, and mashed potatoes with gusto and finished it all off with a piece of key lime pie that he had made himself.

We know we should feel lucky that this is just a temporary situation and not a life-long food allergy. But still, that doesn't make Aaron any less excited to know that probably soon, maybe even in just a few weeks, some of his beloved foods will be restored: a Jimmy John's sandwich, soft-serve ice cream, a handful of raspberries.

Or maybe even a pastry from Mrs. Backer's.

Oh wait, I need to tell you the rest of the story.

A week later, Grandpa Paul swung open the door to Aaron's hospital room again. Once more, he was smiling, and this time his arms were weighed down with, not one, but two pink boxes from Mrs. Backer's.

My mouth dropped open. Had it somehow not been clear that Aaron couldn't have freshly made baked goods from a bakery? This was too cruel, and I said (through gritted teeth): "Aaron can't have those. Remember????"

Grandpa Paul had a twinkle in his eye. "Oh these are going to be good, Aaron. I think you'll be able to have them. Open the box."

Aaron opened both boxes and found them crammed full of Twinkies, Little Debbies, Hostess cupcakes, and Oreos. We all burst out laughing.

"What do you think, Aaron? Will those work?" Grandpa Paul asked.

My irritation turned to gratitude. It was such a small gesture, but with food being one of the things that brought Aaron joy, it meant a whole lot.

I just hoped Grandpa Paul hadn't told Mrs. Backer's what he was planning to put into those boxes!


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