A Little of This and That in October

Nov 21, 2021

I have felt the rapidity of time quite acutely lately, which is ironic since I'm beginning to feel very uncomfortable pregnancy-wise, and it still feels like I have a looooong way to go. And yet, the weeks still seem to fly by. Hence, it has taken me most of this month to write up some of our activities from October. Some months are like that. Here's a snapshot of the month, with such things as . . .   

Leaving . . . my comfort zone. I was in charge of planning dates for Mike and me in October. The mountains were bursting with fall colors, and I thought it might be fun to do something we've never done before and ride the ski lift to get a bird's eye view of them. I had to hype myself up a little in order to do this because I have a fairly significant fear of heights. I get lightheaded and a little woozy if I feel like I don't have some sort of protection. Also, in spite of living all of my life in either Colorado or Utah, I had never been on a ski lift before (ski lift-esque rides, yes; actual ski lift, no; and there's a definite difference). I did a little research before we went to make sure there was at least a bar that would go down over our laps, but when we actually got there, I discovered that it was basically the most primitive bar ever (not up to amusement park safety standards in the slightest). Some of the chairs didn't even have bars. And whether there was a bar or not, I could quickly see that most people riding chose not to put the bar down. Still, we had our tickets, so I was determined to ride. We waited until a chair came with a bar, we conspicuously put the bar down, and we were off. And despite feeling like I was completely out of my element, I thoroughly enjoyed the experience. The air was crisp and fragrant, and it was so peaceful. As expected, the colors were spectacular. (The one thing that put a damper on the experience was that a family was riding at the same time as us. They had four kids, the youngest being around 2 years old. If there's one thing that makes heights even worse for me, it's seeing little kids at those same heights.) When we got to the top, we went on a short hike to Solitude Lake. Then we got back on the lift and headed back down. We ate ice cream and pizza (in that order) at the resort before going home. Even though it's always a little nerve wracking for me to try something new, I'm almost always glad I did. In this particular case, it was an absolutely lovely fall date with Mike, and I highly recommend it (just don't bring a two-year-old . . . ). 

Saying . . . goodbye to Patience. Maxwell cared for his little praying mantis for a good three months. Every night, he would go out into the front yard to find a moth or fly or box elder bug for her to eat. It was a little ritual for him. She grew and molted and grew and molted, and he truly loved everything about her. But with the onset of fall, we knew her days were probably numbered. Rather than waiting for her to die in her cage, Max decided to let her go. He waited for some nice weather and then released her in the garden. It was bittersweet for him, and for the next few days, he didn't even want anyone to mention her name because he was so sad to have her gone. 

Taking . . . his last dose of tacro! Woo-hoo! Aaron was so glad to reach this milestone again in the transplant process and to get to it three months faster than last time. We realized when he took his last pill that if his doctors had followed the same timeline as last time, he wouldn't have even started the taper yet, but instead, he was completely done.

Visiting . . . our favorite pumpkin patch. We grew pumpkins in our garden this year, but only ended up with a couple (affectionately named Big Bill and Giant Jim), so we were definitely in need of some more.  There were a couple of people in our family who would have preferred a quick trip to the grocery store to grab a few pumpkins, but most of us love the experience that comes with picking a pumpkin directly from the field where it was grown. So we headed to our very favorite family-owned pumpkin patch. We've tried out other places over the years, but this is the one we always return to. No fuss. No frills. Just lots and lots of pumpkins in a giant field. We went on a perfect fall evening--warm enough that we didn't need jackets and early enough that there weren't any crowds. We ended the evening by picking up pizza from The Pie. It was pretty perfect.

Painting . . . and carving and doing all of the usual things you do to pumpkins. I hardly took any photos of these happenings though--not typical of me.

Performing . . . in the first band concert of the school year. Both Aaron and Max played . . . Max on saxophone in the foundations group and Aaron on trombone in the jazz band. (Aaron is also in concert band, but he didn't go back to school full time until after the concert, so at the time, he was only attending jazz band.) It was so fun to hear both of them play. I am continually impressed by the quality of the music at their junior high. I know that I'm biased because my kids are playing, but I would actually pay money to hear the jazz band; they're that good. Aaron, as I'm sure you can guess, was pretty pumped the whole evening. 

Resurrecting . . . my fiddle leaf plant. You probably don't remember my sad fiddle leaf tale back in March. Basically, my fiddle leaf plant was slowly dying, and it was very depressing. I moved it to a different location in the house that received more natural light and started giving it a little boost of plant food every 4-8 weeks, and it is now a thriving monstrosity. Not only is it taller than all of us, it sent off another chute that is also doing really well. At this point, my worry has switched from "How do I keep this thing alive?" to "What do I do when it starts taking over the living room?" I'm interested to see if it continues to thrive during the winter months or if it experiences another setback like it did last year. 

Returning . . . to school. I already wrote about this, but Aaron went back to school at the end of the month after a long hiatus. A happy day for all of us!.

Attending . . . the temple for the first time. What with two bone marrow transplants and a pandemic, it has been nearly two years since Aaron was old enough to go to the temple without being able to actually go. But finally, finally, everything worked out in his favor. Several months ago, my sister-in-law snagged a time slot at the Ogden temple (appointments have been a little hard to come by, especially for baptisms). They were allowed to have up to sixteen people in her group, so she asked if we wanted to come too. It ended up being Sonja and her husband and three of their kids, Mike, Aaron, and me, and Mike's mom. It was a small, intimate group, and it could not have been a more ideal first-experience for Aaron. 

Sharing . . . clothes (accidentally). One morning, I went to grab my jacket before walking to the bus stop with Bradley and Clark. I couldn't find mine, but I found Maxwell's (both are dark gray). I realized that he must have accidentally worn mine to school instead of his own. For some reason, this cracked me up. Not only did mine have a rose gold zipper, but it was also a maternity jacket with gathers at the sides to accommodate a belly. When he got home, he said he realized pretty quickly that he'd taken the wrong jacket, but luckily, it was a warm day and he didn't need it after the walk to school. 

Getting . . . our first snow, which amounted to just enough to scrape together a little snowball on the walk to school. Mostly, we just got a lot of rain in October, which I loved.

Visiting . . . Hill Air Force Base. On a quick weekend trip to Logan, we made a stop at Hill Air Force Base to look at all of the airplanes. We had been to the museum once before, but Clark and Ian were too young at the time to remember it. We could have spent hours there (maybe even days) if we'd taken the time to read all of the info. But going with a four-year-old meant that we did the fast tour and walked past all of the planes in about an hour. As we were leaving, one of the guides said, "Are you already leaving? Did you go all the way to the back? Did you see everything?" I don't think he was impressed by our efficiency. 

Spending . . . time at the cabin. We went to the cabin for a couple of days during fall break. Mike's sister and her family were there too, which meant my kids were in heaven because there was a constant stream of games. The fall colors were beautiful, but there were many fallen branches and trees (the snow storm that brought so little snow to Salt Lake dumped many inches in Logan Canyon). We always enjoy the reprieve that comes from spending time in the mountains.

Finishing . . . a cardigan. I finally finished one of my big knitting projects that I started at the end of summer. Cardigans are definitely one of my favorite things to wear because they're so easy to layer with other things. (And right now, I've been getting all sorts of hot flashes so it's nice to have something that's easy to take off at a moment's notice.) I have a few light-colored cardigans, so I wanted a dark one I could wear with anything. I love the color, the style, the fit, and that cozy shawl collar (which alone took an entire week to knit). I've been wearing it a lot this fall.

Deciding . . . on a Halloween theme. Ever since Aaron was a baby, we have done a family costume. Usually, the boys have decided on a theme months in advance, but this year, nothing was sticking. We talked about it at dinner over and over again, and the best they could come up with was "super mega BYU fans". . . whatever that means. I finally decided we better just go with it, and even though it didn't sound very exciting, it at least seemed like it would be easy. But then, three weeks before Halloween, I was chatting with my friend, and I mentioned something about wishing I could have thought of a movie or book or group that had a good pregnant character (since, even though this is my sixth time being pregnant, it's really the only one where the timing has worked out to look pregnant on Halloween). My friend suddenly said, "I know exactly who you should be!" She reminded me that the mom, Chicha, in The Emperor's New Groove is very pregnant. As soon as she suggested it, I knew it was the perfect idea. I also knew I'd have no trouble convincing my family change ideas: The Emperor's New Groove is a Johnson family classic. My kids can quote almost the entire movie. Once they start with the quotes, they just pour out of them. And sure enough, by that evening, we had settled on all of our characters with very little fuss: Mike--Pacha, me--Chicha, Aaron--Kronk, Maxwell--Kuzco, Bradley--Theme Song Guy, Clark--Kuzco (the llama), and Ian--the little old man who gets thrown off the balcony. Was this more work than the BYU costumes would have been? No question. It was a joint effort between Mike and me with many trips to the fabric store and trading back and forth on the sewing machine. Only one of us (me) had a full-on meltdown one day, but other than that, we methodically checked off all of the pieces of each costume, and by the end, we made a pretty convincing cast (minus Yzma, whose absence was acutely felt). The family costume lived to see another year, and it might have been our favorite one yet. 

Walking . . . the neighborhood on Halloween. Actually, our neighborhood celebrated the day before Halloween (on Saturday). This was so nice. I would love to permanently move Halloween to the last Saturday of October. It's just so great not to have to worry about going to school the next day. We had absolutely perfect weather for it--sunny and warm. First we went to our old neighborhood for their Halloween parade--a tradition I highly recommend. They do it in the late afternoon before it gets dark and cold and all of the neighbors set up trick-or-treating stations on their porches or at the ends of their driveways. It's easy to see everyone and stop for a couple of minutes for a quick chat. People were easily able to recognize our family theme (unlike some of the more obscure years in the past). After we got back, Max went trick-or-treating with his friends, Mike took Bradley and Clark around the neighborhood, and Ian and I stayed home and passed out candy. Aaron also went out with one of his friends, and they got called out for being too old for trick-or-treating, which was probably fair (they are 13, after all), but at the same time, I thought they could cut them some slack since they were both dressed up in legitimate costumes, not grabbing handfuls of candy, and were nice and polite. I, for one, was actually so glad they weren't ready to give up on their childhood quite yet. 

I'm sure there were other things I meant to tell you about, but October was so long ago they've slipped my mind! Until next time . . . 

Rejoicing in Hope

Nov 14, 2021

I somehow got out of the habit of writing every week, and now it's been nearly two months since I shared an official Aaron update.

But I have news. And it's all good.

First up, school. When I last wrote about school, the plan was to have Aaron attend virtually for the first quarter. And this is pretty much what happened. 

Most of his teachers were extremely easy to work with. His French teacher went so far as to just revamp all of his assignments so they were more conducive to a home, rather than school, environment. Maxwell helped out by going around to each of the teachers every Friday and dropping off Aaron's assignments for the week and picking up new ones. (It seems Max continues to step up to the plate whenever we need him.) The teachers all got to know him, and Aaron's math teacher was especially nice, sometimes going out of his way to find Max and drop off a test with him mid-week. Aaron started "attending" jazz band rehearsal at 7:00 every morning via his friend who FaceTimed him from the classroom.

Even though Aaron despised doing all of his assignments virtually, and even though it required a lot of nagging from me to get him to stay on task instead of playing his ukulele all day, it really was the ideal situation considering the circumstances. 

Midway through the quarter, we decided he could attend jazz band in person since it happened before school and didn't involve very many kids. He sat at the back of the room and wore a performance mask that had a flap in it so he could still play his trombone. You might think that waking up at 6:30 just to go to jazz band and then coming back home wouldn't have been worth it to him. But he was not one bit annoyed about losing sleep. He acted like it was the biggest treat to get to run over to the school every morning, and it made the long, boring days somewhat more bearable. 

Sometime during the first quarter, Aaron and I were at a doctor's appointment, and Dr. R. said, "So Aaron, are you back in school?" I looked at him in disbelief. Was he actually asking if Aaron was in school after he had basically forbidden him from going? I could tell Aaron was thinking the same thing. But I didn't make any indignant exclamations. I simply said that Aaron was doing school from home until he was completely off of the immunosuppressive. Dr. R. said he thought that was an excellent plan, and I felt really good about moving forward with a second quarter start date.

Aaron's health continued to improve during the intervening weeks. On October 7th, he took his final dose of tacro. On October 25th, he got his first dose of the Covid vaccine (we might have been jumping the gun a little on that, but we figured even minimal protection was better than none). And on October 26th, he walked through the junior high doors as a regular student again. 

For all of my wanting him to be back in school, I did get just a little sentimental the week before when he was practicing his ukulele (the only thing he ever really wanted to do), and Ian was stretched out on the couch next to him. I suddenly wondered if I hadn't actually appreciated the unique gifts that came with having a 13-year-old home with me all day. Aaron and Ian loved being together. Ian would often be the one to encourage Aaron to do his school work: "Have you done French yet, Aaron?" (For some reason, he loved watching Aaron work on his French assignments.) Sometimes Aaron would come into the kitchen when Ian and I were baking and sing to whatever music we had playing. And I definitely took advantage of having a live-in babysitter if I needed to run a quick errand in the middle of the day. Isn't that the way it is with so many things in life? You find all of the things you don't like about them until they're almost gone, and then you suddenly realize there were some hidden blessings you hadn't even paid attention to.

Aaron didn't seem at all nervous about going back to school. There were a couple of things I hadn't been able to get any answers on before school started, but he just said, "It's fine. I'll figure it out." And he did.

It honestly has been as seamless of a transition as I could have hoped for. Because Aaron had been working with all of his teachers virtually, they all knew who he was when he showed up in the flesh for second quarter. He was completely caught up with assignments and knew exactly where the class was in each subject. This was exactly why I pushed so hard for an exception to the school's rule back in August. If the administration had forced Aaron to be in the district's online school, rather than his actual junior high, that first week back would have been so much more intimidating and taken much longer to adjust to.

There are two alterations to Aaron's school schedule that make it slightly different from the norm: he comes home for lunch, and he doesn't have a seventh period. Lunch is the only time when Aaron is unable to wear his mask, so to minimize germ exposure, we decided to just have him come home during that time. I am so grateful for our close proximity to the school that makes this possible. And I love seeing him in the middle of the day and getting to have a quick chat with him. I wish Max would come home for lunch, too. As for the seventh period, that didn't have anything to do with needing Aaron to have a shorter school day. It was simply that we couldn't find a class that fit into that period, and I figured it couldn't hurt to have him come home earlier than everyone else. He'll have a full schedule next semester. 

So school is good. The other piece of news has to do with diabetes.

Starting in September, Mike and I noticed something remarkable happening with Aaron's glucose. At that point, he was getting a long-acting dose of insulin every night (usually about 11 units), but he rarely needed fast-acting insulin before a meal. Without insulin during the day, it typically took him about three hours after eating to return to a normal glucose level. This was sometimes just in time for the next meal where he'd start the process over again. Still though, we were so grateful that he was fairly stable and didn't require any carb counting or frequent dosing. 

Because he was wearing a CGM (continuous glucose monitor), we could keep a careful eye on his glucose and react quickly if needed. However, as the weeks went on in September, I noticed that he was returning to a normal level more quickly than he had been.

As Mike prepared to give Aaron his slow-acting insulin one night in late-September, we noticed that his glucose was right around 100. We didn't feel good about giving him insulin when he was already right where he should be. So we did something reckless and skipped his dose. (This actually wasn't as reckless as it might sound--we had talked to his endocrinologist about something similar when Aaron had been sick a few months before and they said it was fine to skip if his levels were good. Plus, we knew we could watch his monitor and correct for a spike if needed. And honestly, a spike is far better than a crash, so it seemed like the safer option of the two.)

I wish I had written down the date that we decided to skip that dose. It turned out to be significant because Aaron has not had a drop of insulin since then.

Day after day, we watched in amazement as his numbers got better and better. I would hold my breath as he chugged down a 12 oz. bottle of root beer or ate candy through a movie, gearing up to reach for the insulin pen. But instead, his body responded like it was supposed to: a small spike and then a drop back down to normal. 

There seemed to be a direct correlation between the weekly taper of the immunosuppressive and more normalcy with his glucose. Every week, we'd bump down his dosage, and his glucose would follow suit.

Mike and I both worried about getting our hopes up. We'd have whispered conversations as we both checked in with Aaron's monitor: "Did you see what that cookie did to his glucose? Nothing." At first, we didn't even mention it to anyone else because it seemed too good to be true. But as week after week went by, and Aaron still wasn't getting any insulin, we began to think that maybe, just maybe, we could say goodbye to diabetes.

Aaron finally had an appointment with the endocrinologist at the beginning of this month, and his A1C  confirmed what we were seeing. (The A1C is a blood test that can look at your average glucose level over the last three months.) Aaron's A1C was 5.0%, which placed him squarely in the non-diabetic range. The doctor said he could stop wearing his CGM, and we could just do a fasting glucose and post-meal glucose once a week. They said to call if anything changed.

So what does this all mean? Because remember, Aaron was diagnosed with Type-1 (not Type-2), which is a condition that does not go away with time. Once you have Type-1, you are supposedly stuck with it.

Here's my non-professional take on it:

The reason why Aaron was diagnosed with Type-1 was because when he was in the hospital for his transplant, his blood glucose level went out of control (300+). He was on TPN at the time, and they figured it had messed him up, so they took him off of that. He was still high. Then they started looking at the medications he was on. The big trigger for medication-induced hyperglycemia is steroids, which Aaron was not on at the time. However, he was on two other medications that were known to sometimes cause hyperglycemia: mycophenolate and tacrolimus. 

I read about the side effects of these drugs right after Aaron was diagnosed with Type 1, but none of the doctors (bone marrow or diabetes) seemed interested in them. In fact, a few weeks after Aaron's Type-1 diagnosis, Dr. R. said, "Did you know tacrolimus can cause hyperglycemia?" And we were like, "Um, yeah, didn't you?"

Anyway, the reason why they didn't blame the medication was because they did two blood tests at the same time all of this was going on: the A1C (which came back at 7.6% but couldn't be completely trusted because Aaron was getting frequent blood transfusions at the time) and another one to check for Type-1 antibodies. 

The antibodies test showed that Aaron had two of the four antibodies for Type 1. Because he needed insulin to manage his glucose and he wasn't on steroids and he had the antibodies and he had experienced a major stress that would explain the sudden onset, they diagnosed him with Type 1. 

But with the way things have gone, it seems more likely that it was the tacro causing the diabetes all along. 

Regardless, the fact remains that Aaron has two antibodies for Type-1 diabetes (at least we think so--they actually haven't repeated the test to confirm that they're still there). This puts him at risk of developing Type 1 in the future, but it is not a guarantee. There are many people who have the antibodies but not an active case of diabetes. It's more of the "watch-and-wait" advice we've been getting for so long.

So that's where Aaron is right now. I am of course finding little things to worry about (like the dark circles that seem to always want to hang out below his eyes), but for the most part, things are very stable and, dare I say it, normal. We are starting to look forward to 2022 and hoping there might even be a few vacations to fun places mixed in with the normal, everyday activities. 

If I'm being honest, the hardest thing for me right now is actually that everything does feel so normal. I feel scared to enjoy it too much in case it all gets taken away. Romans 12:12 says that we should "rejoice in hope," and that is what we are trying to do. Being back in school and released from the restrictions of diabetes has given us hope that we are finally on the other side. We are rejoicing in these good things and  exercising hope for more in the future.

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