Aaron's Vice

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!

A Brief (But Happy) Update

Things began to improve almost immediately after I wrote last week.

Aaron was down for two days, but by Sunday, he felt much better and ended up making a full recovery. Even though it was nerve wracking to have him sick, I took it as a very positive sign that his body fought the illness on its own. He took his new bone marrow for a test drive, and it passed with flying colors. 

I took Aaron to his appointment on Tuesday, and his blood counts reflected the stress over the weekend. His neutrophil count had taken a hit and had dropped quite a bit. But surprisingly, his platelets, usually so melodramatic, had gone up since Friday. As expected, his red blood count had continued its downward trend and was sitting at 7.4, so a transfusion was in order. 

This made for a long day: they had to take a type and screen first, which analyzed Aaron's current blood type so they could get a compatible match (lately, he's been getting O+ blood). It took a couple of hours for those results to come back. Then Aaron had to be premedicated (just with Tylenol and Benadryl) because he has had a slight reaction to transfusions in the past. Finally, they began the transfusion which ran over two hours, followed by another half hour of observation. Then he could finally go home. 

Here's a little interesting fact we've learned about blood transfusions: When the number of red blood cells in the body is low, a person's heart rate goes up. Because red blood cells carry oxygen, the heart has to work harder to maintain the same oxygen level throughout the body regardless of how many red blood cells are present. So when Aaron gets a transfusion, his heart rate is monitored, and as the blood goes into him, his heart rate gradually goes back down to balance out the increase in oxygen-rich cells.

I asked the doctor if I should be concerned that, at Day +69, Aaron is still getting blood transfusions, and he said no. Right now, Aaron's body has been focusing on platelet and white blood cell production. When those are both solid and stable, it will put more energy into making red blood cells. 

When Mike took Aaron to his appointment a few days later on Friday, his white blood count had recovered a lot from Tuesday. This was more good news: Not only was Aaron able to recover from the illness, but his bone marrow rebounded after being depleted. 

Elder Neal A. Maxwell said that we can know that God is aware of us by "honestly counting the blessings and bestowals of His grace in our lives." Aaron's regenerating cells are one of those blessings--made possible through a miraculous body, knowledgeable doctors, and countless prayers. 

One Step Back

Sometimes progress takes the "two steps forward, one step back" approach, and that's what it has felt like this week.

Following the bounteous platelet count reported last week, Aaron's platelets dropped to 231 and then at the next appointment dropped even further to 160. The doctor assured me that a) this is normal for platelets to bounce around (apparently they are very responsive to any kind of stress occurring in the body), and b) a platelet count between 150 and 200 is actually favorable to one above 250 (though their reasoning for this was unclear).

I should find this encouraging, but I have become rather suspicious of optimistic comments from doctors. So often, it seems like the BMT team acts positive and cheerful about one thing, but then the next week, after things have slightly shifted and changed, they admit that the earlier numbers concerned them a little bit, but now everything is looking just great. They adjust their expectations to agree with the data. 

Aaron's hemoglobin has also been steadily falling (again). Unless he somehow manages to pull up and save it, it's looking like another transfusion next week. 

We also got the results back from Aaron's latest chimerism test (which looks at the ratio of Aaron's cells to Maxwell's cells). Last time, all blood cells were 100% Maxwell's, except for the T-cells, which were only 47%. This time, the T-cells were split right down the middle--50% Aaron's and 50% Maxwell's. Although the doctors aren't going to do anything about it at this point, it is not the ratio they would like to see. And, judging from something Dr. Boyer said last week, I think he was expecting Maxwell's percentage to go up quite a bit more than 3%.

My emotions have followed a similar trend this week, gradually dropping into the frustrated, discouraged, and helpless range. They took an especially big nose dive on Wednesday afternoon when Ian let out a gigantic sneeze, and it was obvious that somehow, just like that, he had a full blown cold.

We immediately quarantined Aaron to the basement, but it was too late. Within two days, he had all of the same symptoms as Ian and was miserably blowing his nose in bed.

We had one job (keep Aaron healthy), and we failed. That's what it feels like to me.

For the past month, we have said no to many activities; been the obnoxious kind of friend who checks (and then double checks) to make sure there are no runny noses before agreeing to a play date; kept the two-year-old out of nursery; obsessively cleaned the house; burned our way through an impressive number of Clorox wipes; changed clothes anytime we've been somewhere other than home; quarantined sick children; and washed/sanitized so often that our hands are chapped and bleeding.

These things were not an inconvenience because it was for Aaron's good. But those sneaky germs infiltrated anyway, and it makes me wonder if any of it was even worth it.

There are basically two reasons why they don't want Aaron to get sick: His body's immune system is currently being suppressed, so he doesn't have the ability to fight off an infection like a normal person. And also, his bone marrow is still so new that an infection could possibly wipe it out.

So we are watching him very closely. As long as he doesn't get a fever or have any respiratory problems, he can stay at home. He is on prophylactic medications to guard against big infections, so hopefully this little one will merely offer a trial run to his brand new white blood cells. Fingers crossed that even in their sleepy state they can defend against the siege.

Meanwhile, yesterday his platelet count was back up to 217 and his hair is beginning to grow back in, so I'll take both as good omens that we're on the upswing.

A Story About Platelets

Aaron's platelet count broke 300 this week.

For reference, normal platelet count can span anywhere from 150 to 400. So he's well within the normal range, and at this point, it's quite possible he has more platelets than I do!

Before this summer, platelets were one of those things I never devoted a single thought to. If one of my kids got a cut or scraped his knee, a kiss and a bandaid was all he needed. His body took care of the rest.

But after Aaron's diagnosis, it seemed like platelets were the only thing I could think about. Instead of being in the hundreds, Aaron's were in the single digits. That's the point where doctors start to worry about spontaneously bleeding.

So of course Aaron started getting regular platelet transfusions. That would usually bump his count up to the 50's or 60's. The goal was for the transfusion to last a week, and the clinic always optimistically scheduled him for seven days out.

However, even when he got an especially rich bag of platelets, that didn't change their life span, which is only about six days. Consequently, every Sunday all of the tell tale signs of low platelets emerged: bruises, petechiae, and bleeding gums. It couldn't have been any clearer if he had been wearing a platelet meter, and it was unnerving to watch it happen week after week.

There is one weekend that stands out in my memory more than any of the others. We were at a family reunion in Hobble Creek Canyon with all of Mike's siblings and his parents. We stayed in a sprawling cabin where the 30+ grandchildren ran around to their heart's content.

At that point, we knew that Maxwell was a bone marrow match for Aaron and his transplant day was scheduled. This reunion felt like a last hurrah for him. He seemed to sense it because I watched him play with more exuberance and enthusiasm than I'd seen from him in weeks. I kept thinking he would crash, but he was blessed to draw from some untapped pool of energy I didn't know he still had. He was so happy. I felt a little apprehensive, but I just couldn't bring myself to reign in any of the fun.

On the final night, Aaron was playing murder in the dark with cousins. He took an unfortunate bump in the mouth, and his gums started bleeding immediately. In normal circumstances, a person's platelets rush to the scene and clot the blood. But Aaron didn't have enough platelets to rush anywhere or do anything. Mike and I both knew his gums probably weren't going to stop bleeding until he got more platelets.

We pulled him from the game and watched him over the next hour. As suspected, his gums continued to slowly leak. There was nothing alarming about the flow--just that we knew it wasn't going to stop.
We figured the best thing he could do was go to bed and we would take him to the hospital in the morning.

(I should probably insert here that we had no cell phone reception, and the landline at the cabin only worked for Utah County. We considered driving down the canyon so we could call the hospital, but we already knew from past experience what they would say: "Is his nose bleeding? Did he get a head injury? Then you're fine to wait.")

So that's what we did. But as I said good night to Aaron, he confessed that he was worried he was going to start bleeding more in the middle of the night. It was the first time I'd heard him admit to being worried about anything, and that kind of freaked me out. Mike and I decided we would set alarms to check on him at midnight, 2:00, and 4:00 just to make sure it wasn't getting any worse.

When I got up at 4:00, I used my flashlight to look at Aaron. He was sleeping quite peacefully, but his lips were encrusted in blood, and there were splotches of it all over his pillow and sheets. I woke up Mike, and we decided he should take Aaron to the hospital.

But an hour later, they were back. Once Mike was out of the canyon, he had called the hospital to ask if he could bring in Aaron. They said that even though he had been steadily bleeding for seven hours, as long as it wasn't a nosebleed, he should wait to come until later in the day.

So Aaron got to finish out the reunion, but all of his earlier energy had been snuffed out. He provided entertainment for his little cousins who were both scared and fascinated by his bloody mouth, but that was about it. We packed up and left as quickly as possible. On the drive home, he felt sick to his stomach from swallowing so much blood. He threw up, and it looked like he was holding a bag of blood.

Although this is the most extreme example (and sorry to those of you who are now feeling nauseous yourself!), this was Aaron's reality. His body didn't make platelets. He was alive because of transfusions.

I've thought about those scary weeks many times over the past few weeks as we've watched the steady climb of Aaron's platelets. It has been thrilling. When they crossed over 300 this week, it felt like we could resume our earlier habit of never giving them a passing thought.

Except, maybe not.

With platelets flowing in his blood again, Aaron has picked back up many of his favorite activities, including riding around on his ripstick. Earlier this week, one of the wheels hit a crack in the driveway, and Aaron flew off, skidding up his arm.

With wonder, we watched it form a scab. A big old beautiful scab. Even the younger boys commented on it.

We might not ever be able to stop marveling at a healthy, working body.

A Little of This and That in September and October

Although I wrote many times about many things that happened in September and October, they were almost all medically related. And guess what? We actually did some other things too, including . . .

Taking . . . baptism photos of Bradley. It's funny what kinds of things feel non-negotiable in the moment. Three days before Aaron was admitted to the hospital, it seemed of supreme importance to me to get some photos of Bradley for his upcoming baptism. I felt like if we didn't take them on that very day that it would never happen, and I couldn't bear the thought of not having some of him. So early on Saturday morning, the two of us drove down to Temple Square. The weather could not have been nicer, and we strolled around the grounds snapping photos. Bradley was so cooperative and cheerful, and I loved spending the time with him. So it turned out that even though the pictures weren't actually essential, I kind of think I was right: there might not have been another day to take them, and I am so glad to have them!

Winning . . . Blockwalk. Every year our elementary school hosts blockwalk to raise funds for the PTA. Family, friends, and neighbors pledge money per lap walked by the student. I have to admit that I'm the only one who ever pledges money for my kids becof the other activitiesause I don't like asking other people for money. But the boys all love to walk laps. They even forego all  going on just so they can walk more laps. This year, Bradley and Clark both happened to walk the most laps in each of their grades (21 and 9, respectively), so they each received a cool new art set as a prize.

Writing . . . a poem. Maxwell and Bradley both submitted an entry for Reflections at their elementary school. Bradley drew a picture, and Max wrote a poem. The theme was "Look Within." Max wrote several poems about friendship but then decided to put a little more of himself into it by sharing the experience he had with being Aaron's donor. This was the result:

Blood Brothers

My brother,

Who looked fine,

Turned out to be sick.

When only I could donate,

I had to dig deep to find the courage

To push through

And save his life.

The day soon arrived.

The tenseness I was feeling

Seemed to carry onto mom.

I fell asleep, and woke back up,

My hip all I could think of.

The nausea soon hit.

I couldn’t stand.

I started to feel woozy.

My stomach contracted

Because of the dizziness.

It took me hours to recover.

I now feel

I did the right thing.

I love my brother

And am happy about

The hope I brought

For a better life.

Celebrating . . . Bradley's eighth birthday. Bradley kept giving us subtle hints about the imminence of his big day. I think he was worried we might forget about it in our distraction over Aaron. But we didn't (although we did have to scramble a bit at the last minute). We couldn't really decide what to get for him. Mike was convinced that a metal detector was an ideal present for an 8-year-old. I wasn't so sure, but luckily, one of Mike's friends was getting rid of his metal detector, which made it a pretty easy decision. And Bradley loved it. He thought it was the coolest birthday gift ever (but then I haven't seen him use it much beyond his actual birthday, so maybe I was right, too). He wanted a banana cake in the shape of a banana. Mike obliged, but the end result was not up to his usual standards, and he forbade me posting any photos of it (but I didn't listen).

Reading . . . not a whole lot, if I'm being honest. While Aaron was in the hospital, he didn't want to read at all, and I worried that maybe the experience had killed his love of reading forever. But maybe it was me who I actually should have been worried about. As soon as we were home, Aaron started burning through books again, but I, on the other hand, have still not been able to focus for long enough to actually finish anything (except Bad Blood, which was the craziest story ever).  

Driving . . . through Immigration Canyon. One evening when Aaron was still in the hospital, Mike loaded up the other kids and we all went for a drive through Immigration Canyon. Sometimes the red leaves are a bit hit or miss in Utah (it probably has something to do with temperature or precipitation or both), but this year, the reds hit it out of the park. The canyon was on fire. We drove through the twists and turns listening to our fall playlist and letting our eyes feast on the colors. We stopped for just a couple of minutes to breathe in the mountain air and crunch through the leaves. We couldn't be gone for too long. Mike had to get back to Aaron; I had to take everyone else home for bed. But that short drive did wonders for my soul.

Saving . . . myself from boredom with knitting. I always knew this hobby would come in handy, and it totally did with all of the endless hours at the hospital. As with reading though, I found that I couldn't knit on anything that required too much concentration, so I actually tried to choose projects that were so simple I could just put my hands on autopilot and still focus on what was going on around me. We had one nurse who was also a knitter, and at the end of our stay, I gifted her a hat because I knew she was one of the few who would truly appreciate it.

Discovering . . . that trail mix goes a long way in keeping Ian occupied and quiet. Because we're trying to minimize exposure to germs for Aaron's sake, we have not been letting Ian go to nursery at church. ("I can't go to nursery because there are too many germs," he likes to tell people.) So now he's coming to class with Mike and me, which, you can probably imagine, is not the most enjoyable. But recently, we found out that if we give him a package of trail mix and only open up the top corner, it will occupy him for a good thirty minutes as he sticks in one finger and fishes around for the M&Ms (and he even eats some nuts and raisins along the way!).

Giving . . . blood. One of my friends organized a blood drive in honor of Aaron. The bloodmobile parked itself at the end of our street, and it was so amazing to see family and friends (some from many years ago!) come show their support of Aaron. All told, I think we had fifty-four people come to donate, although not all of them passed the screening test. Mike and I both gave blood, and it was actually my first time ever (I figured there wouldn't ever be anything else that would help me overcome my fear as much as this, so I had to do it). I didn't faint, and a week later, I got a call that they had given my blood to a patient! 

Having . . . a Star Wars marathon. Since we couldn't really go anywhere for fall break, Mike thought it was the perfect excuse for a Star Wars marathon. I don't like Star Wars, so I did not participate, but the rest of them all loved it. Even Mike, who has seen the fourth one probably a hundred times, said, "It's just so good."

Visiting . . . the pumpkin patch. We didn't plant any of our own pumpkins this year, so we decided to go pick some out at one of our favorite family-owned farms. Aaron couldn't come with us because of the crowds and dirt, and when I looked back at the photos of the other boys, it looked like there was a huge gaping hole without him. But the air was cool and crisp, the boys had fun swinging and going down the slides, and we came away with a wheelbarrow's worth of pumpkins, so mission accomplished.

Signing . . . up for a gymnastics class. Last winter, Bradley did a session of gymnastics at our local rec center. He fell in love with cartwheels, headstands, and back bends but didn't love the class so much as it was made up almost entirely of girls, but the instructors could still never remember his name. So this time I signed him up for the all-boy class at the gymnastics training center instead. He gets to learn skills on all of the equipment (parallel bars, rings, vault, etc.). He has only been twice so far, but I've watched him both times, and he is totally in his element. I don't know if he'll end up doing more than just this session, but right now, it is the perfect form of exercise on these dark autumn nights.

Suffering . . . through growing pains. Bradley has been getting the worst growing pains at night. Sometimes he just moans and cries because his legs hurt so much. One night, he even asked Mike if he could have a cane so he could hobble to bed. I mentioned it to our pediatrician when I took Bradley to his yearly check up, and he recommended giving Bradley a dose of magnesium every night before bed. That seems to be helping somewhat, but last week, just as he was finishing gymnastics, those growing pains revved up something fierce (which makes sense, as they're usually related to muscle fatigue). If anyone has any additional tips, please share!

Going . . . over to the gym at the church to take some photos of our Halloween costumes. I've learned that it is worth it to get dressed up an extra time for the sole purpose of taking photos. Kids just have a difficult time cooperating if you're standing between them and candy. We went on an afternoon when the church was empty so that we didn't have to worry about Aaron coming, too. This year we decided to go as our own basketball team. Ever since Ian was born, people have commented on the fact that we now have enough boys to form our own team. We ordered custom jerseys with our team name, Thundercats (named after our pet cat, Thunder), on the front and our last name on the back. The numbers correlated with birth order. Mike and I rounded out the team as coach and referee, respectively. 

Buying . . . a pair of expensive jeans. (And just to clarify, when I say "expensive," I mean $100, not $500.) Up to this point, I have always been an Old Navy/Target/Costco kind of jeans person. But I recently had two pairs of jeans bite the dust, and when I was at the mall to replace them, I passed the Madewell store, and I said to Mike, "I have heard really good things about Madewell jeans." So we went into the store, and after trying on a big stack of them, I came out with two new pairs. And the verdict is now in: I love them. It sounds really trivial to talk about jeans, but I actually didn't know I could love a pair of jeans so much. They are comfortable and stretchy, but they don't sag throughout the day. I don't think I will ever be able to buy another brand again (unless, of course, they don't hold up and I have to replace them in a couple of months . . . we shall see).

Braving . . . the cold to go trick or treating. It was a pretty chilly evening (although not as bad as two nights before when it was about fifteen degrees colder and snowy and windy), so the boys put turtle necks and pants under their costumes and gloves on their hands. Some of us (Aaron, Ian, and me) peeled off after just a street and a half. But the others kept going for another forty-five minutes. By 7:45, all trick or treaters seemed to be done for the night and we still had a Costco-sized bag of candy unopened.

Wishing . . . I could take two-year-old Ian trick or treating every year. I honestly can't believe I'm saying this since, generally speaking, Ian has not been a very easy two-year-old. But something magical happened on Halloween night. He was the cutest, most pleasant little tagalong ever. It was his first year out of the stroller, and his short little legs ran hard to keep up with the big boys. He excitedly said, "Trick or Treat!" and "Thank you!" at every house and then reviewed what he was going to say as we walked between houses. He didn't have a single meltdown, not even once we got home and he was scarfing down candy and it was his bedtime. Just before we headed for home, he looked up at the sky, which was streaked with vibrant lines of pink and orange, and he exclaimed, "Oh!!! What color is the sky?!?!" He was just the sweetest thing, and I wish I could freeze him just like that.

That wraps up this monthly update. What did you do in September and October?