A Summer Vacation to Lake Tahoe

The fact that I'm finally journaling a little bit about our family vacation that happened three months ago is evidence that things have slowed down here. This vacation took place the week before Aaron was diagnosed. At the time, we didn't have even the slightest suspicion that anything was wrong. He hiked and kayaked and buried himself in sand just like the other kids. Just a few days later, as we sat in the hospital, I thought back longingly to our time at Tahoe; it seemed like it came straight out of another life.

But as time has passed, the memories from this time together as a family have become more and more dear--both as a reminder of the way things were and as a promise of good things to come.

Two summers ago, we went on a fantastic family vacation to the redwoods. On our first day of driving, we made it to Lake Tahoe and stayed there for the night. We took advantage of the few short hours we were there to go to the lake. As we sat on the sand and looked at the crystal clear water hemmed in by striking mountains, we looked at each other and asked, "Why are we going somewhere else? Why don't we just stay here instead?"

Of course, we're glad we decided to continue on because we loved the redwoods, but we made a promise to ourselves that we would come back to Lake Tahoe and make it the destination rather than the pit stop.

And this summer, we did just that.

We rented a cabin and explored Lake Tahoe for four glorious days. That first glimpse two years ago told us we would love it, and we were not disappointed.

My brother, Gordy, and his family came with us in 2017, and they were also convinced they needed to give Tahoe its proper due, so they came with us again this time. And as you know, it is never a bad idea to bring along cousins.

Ready for a few highlights?

Baldwin Beach, Take 1
On our first full day, we went to Baldwin Beach. We got there before 10:00 in the morning, which meant that the beach was still mostly empty and we could snag a picnic table. We set up lots of shade, and the kids wasted no time getting into the water. (I, on the other hand, had to wait for the sun to arch up several hours before I was ready to immerse myself because that water was cold!) We brought a kayak, and so did Gordy, and it was heavenly to paddle around the lake, especially before the big boats stirred up the water. Mike decided to rent a paddle board for fun because none of us had been on one before. We all took turns with it, but some were more naturally talented than others (I was among the wobbly). The sand on Lake Tahoe is very coarse, which makes it really easy to brush off. My kids loved to bury themselves deep inside it (and after I got wet, I could understand why this was so appealing). We also had several snorkeling sets, and it was actually the absence of things that made looking underwater so cool. It was almost like looking through a glass of drinking water--it was that clear.

Early Morning Run
I really wanted to go running in the mornings while we were at Tahoe--not because I am in any way dedicated to an exercise routine (I'm not), but I feel like running (or walking or biking) gives a more intimate view of a place, and I like that. I only made it happen one morning, and it ended up being fairly short because I am not a hill runner (and that's pretty much unavoidable at Tahoe), but I loved being out in the cool morning before anyone else was awake. Mike and I went to the High Meadows Trail, which wound through the tall pine trees and gave us glimpses of the lake.

Emerald Bay
We tried to visit Emerald Bay on our first morning. We thought we would be fine if we got there before 10:00, but all available parking was completely gone (unless we wanted to hike in, which we did not). So the next day we got an early start and were there just after 8:00. We didn't have any trouble getting a parking spot, but I was shocked that in the fifteen minutes it took us to put on sunscreen (and calm down a tantruming Ian), the parking lot filled right back up. It was easy to see why this is such a popular spot on Lake Tahoe. From above, you can see the green-hued bay with an island cocooned in the middle and the lake stretching out behind it. We hiked down to the water's edge (a lovely hike--almost completely shaded). The kids were eager to get in the water, but it felt super cold (maybe because it was still early in the day). By the time we were ready to hike back to the top, the sun was high in the sky, which made it not as much fun as the way down. Still though, we couldn't get enough of those views.

Eagle Falls
When we were at Emerald Bay, we saw a sign pointing to Eagle Falls. We hadn't heard anything about it, but we decided to check it out anyway. I'm so glad we did. It wasn't a hard climb, and the waterfall ended up being quite a bit bigger and more impressive than we were expecting. It was a  little detour that was totally worth it.

Tahoe Trout Farm
This was the activity that took the number one vote from my kids. They loved it so much, and the next day they begged and begged to go back, but we had already caught all of the fish we could handle. We loved everything about this fish farm. It was beautiful and had a quiet rural feel about it. The owner could not have been more of a fisherman if he had tried. He was friendly and chatty and so patient with the kids. We took a couple of fishing poles, a bucket, and a net, and headed out to the pond. We could see the trout swimming around, but it took awhile before we got a bite. But Aaron finally caught one, followed by Maxwell, Bradley, and Clark (in age order, just like that). Maxwell has wanted to catch a fish for years, and even though Mike has taken him fishing many times, he had never caught one himself until this moment. Some might say it's cheating to catch a fish at a fish farm, but we all loved it. It was nice to feel so successful instead of going home disappointed. We ended up with four big fish. They gutted them for us there at the farm (Aaron and Max helped), and then we took them back to our cabin and froze them. When we got home from Lake Tahoe, Mike cooked them up, and we sat around the table and told big fish stories and reminisced about our trip. It was awesome.

Date Night
Because we were with my brother and his family, we were able to work out a little babysitting trade and each enjoy a night out sans children. When it was Mike's and my turn, we went out to eat, and then we explored a couple of trails that we'd heard about: Cave Rock and Chimney Beach. We had been thinking about taking the whole family to Chimney Beach the next day, but after doing it with just the two of us, we realized that there would probably be a lot of complaining with nine children. But Mike and I were so glad we had the chance. The lake was stunning. With every few feet on the trail, it looked just a little bit different, which made me exclaim again and again. The ambiance was heightened by the sun going down, casting a fiery reflection across the water. For some reason, we were the only ones on the trail, which kind of baffled us (and made us slightly wary) because we couldn't figure out why people would want to miss out on this kind of beauty.

Baldwin Beach, Take 2
On our last day at Tahoe, we decided to go back to Baldwin Beach. I was hesitant because I didn't want just a repeat of when we were there before. But it ended up being completely different and even more fun than the first time. This was because we chose to set up camp on a little strip of land that ran between the lake and an inlet of water. This was like a private little pond for us. It was shallow and since it was disconnected from the actual lake, the little kids got a chance to paddle in the kayaks by themselves. If you paddled down the channel of water, it started to twist and turn among the reeds and lily pads. I half expected to see an alligator's nostrils poking out of the water. The kids also found a crawdad, which kept them entertained for hours. It was the perfect way to spend our last day.

Family Time
We loved being at Tahoe with my brother Gordy, his wife Brooke, and their four kids (Charlie, Rose, Lyda, and Wally). We stayed at a spacious cabin and had plenty of room for all thirteen of us. The cabin had a hot tub, and our kids loved nothing more than getting back from the lake and climbing straight in to warm up. (We thought we were for sure going to be charged a cleaning fee for all of the sand they undoubtedly left behind, but we weren't.) Gordy brought their nintendo switch, and, if I'm being honest, that was another highlight for our poor video game deprived children. Our kids all played really well together. Clark, Rosie, Lyda, and Ian seemed to have some kind of imaginary game going on the entire time. Mike and I loved having other adults to talk to, and Gordy can make me laugh like no one else. Gordy also always makes a music video of their trips, and so we love when they come somewhere with us because then we get to be in the video too and it's such a fun keepsake to have at the end. Basically, we would always say yes to a vacation with them.

Even though there are many more places we want to visit as a family, I'd be surprised if we didn't end up back at Tahoe at some point. It is only a day's drive away, there is so much to do, and its natural beauty can't be beat.

More Boring, Please

Today marks one month since Aaron's bone marrow transplant. A lot has changed since then. Instead of being zonked on drugs in the hospital, he spent the afternoon in the golden sunshine breaking open geodes with his brothers.

At his appointment yesterday, Dr. Harris asked, "Any fevers?" No. "Rashes?" No. "Constipation or diarrhea?" No. "Eating and drinking?" Yes. "Staying active?" Yes. "Well, okay then, you're boring. And we love boring."

We do, too. People keep asking us what our plans are for fall break, and our contented answer is, "Not a thing." We can't travel anywhere, obviously, and any other adventures are also out of the question (at least if Aaron is involved). Mike maybe hinted at a Star Wars marathon, which might be just the thing if the rainy weather forecast pans out. We're happy to hunker down for the rest of the week.

Aaron's blood counts are looking good. When he went to his appointment on Friday, his neutrophils had dropped to 600. Dr. Boyer had guessed they would be somewhere between 500 and 800, so the drop wasn't surprising but still kind of disappointing. Aaron got another shot of neupogen, and then yesterday, his neutrophils were at 1000. This probably means they had been higher over the weekend and were falling back down, but hopefully we will be able to see some stabilization this Friday.

So yes, if you couldn't already tell, we are back at the hospital twice a week on Tuesdays and Fridays. The reason for these frequent appointments is two-fold: check Aaron's blood counts and monitor his Tacrolimus level.

Tacrolimus is the anti-rejection/immunosuppressive drug Aaron is taking. It is a bit temperamental, so it has to be evaluated frequently and his dosage adjusted accordingly. Aaron has to take it at the same time every morning and night, and then we always have an early appointment, so they can check the level when it is at its lowest point.

The doctors and nurses take this drug very seriously. The first night Aaron took it, the pharmacy was slow getting it up to Aaron's room, and it is pretty much the only time we saw any of our nurses ever get angry.

While Aaron was in the hospital, he had signs posted all over his room, reminding the nurses to administer tacro "in the purple lumen only." That's because they can't draw the level from the same lumen they put the drug into or else it will automatically show an elevated number (apparently, it is a very sticky drug). Unfortunately, in spite of very competent nurses and careful diligence on Mike's and my part with double checking that the tacro was going into the correct lumen every morning and night, Aaron's line somehow got contaminated. It's not a huge deal; it just means that he has to get a peripheral draw from his arm when they take his tacro level instead of just accessing his central line.

And it was tacro and that contaminated line that got Dr. Boyer all riled up one day, too. The day before, when they suspected contamination, the BMT team ordered a peripheral draw to see how it compared to the one taken from his central line. In the meantime, while we were waiting for phlebotomy to come up, the nurse decided to get Aaron's tacro running (like I said, he's supposed to get it at the same time every day). As it was going, the phlebotomist came in, drew Aaron's blood, and left. And it was then that Mike and I realized that doing the blood draw at the same time as the drug was probably a bad idea. I immediately mentioned it to the nurse, but she didn't seem concerned in the least. However, it was a different story the next morning when we told the same thing to Dr. Boyer. He was extremely annoyed and when he left Aaron's room, Mike and I both worried for the nurse who was sure to be reprimanded.

This is probably more than anyone wanted or needed to know about tacro, but now if I write about this drug in the future, you'll understand a little bit more about it. Before Aaron was discharged from the hospital, they switched him over to an oral version of it. So now we get the stress of it, and Mike and I both have alarms set so that we don't accidentally forget about it.

Back to Aaron's blood counts: even though Aaron's neutrophils are a bit unpredictable at the moment, his platelets are continuing to climb. One week ago, they were 55. On Friday, they were 71. And yesterday, they were 109! The doctors told us that platelets are usually the last type of cell to engraft, so Aaron is doing it a little bit backwards. It was Aaron's lack of platelets that caused us the most fear and anxiety after he was diagnosed, so we are all so thrilled that he is making them again on his own. Plus, I find it very comforting that even though his neutrophils are taking their sweet time, there is still a lot of very obvious cell activity.

The other thing they did on Tuesday was take blood for a chimerism test. This analyzes what percentage of Aaron's bone marrow is Maxwell's. We'll probably have those results on Friday.

But for now, here's hoping that we continue to have a blissfully boring week.

I Will Rejoice in My God: A Collection of Tender Mercies

Yesterday I was able to sneak away for a few hours to go to the temple. I didn't really feel like I had the time for it. In fact, in the days since Aaron returned home, I have felt busier and more overwhelmed than at any other time during this process.

Having him back home has been so sweet and wonderful. Aaron has found joy in the simplest things: doing a puzzle with Clark, listening to Ian's little chatter (he told me, "At first, I had a hard time understanding Ian!"), eating lunch at the kitchen table with his siblings, riding his ripstick around the driveway, reading in his own bed, listening to Harry Potter . . . the list could go on and on. 

But being home has come with its own set of challenges and responsibilities. I will probably go into them more in a future post, but basically, at this point, I feel like all I am doing is following my kids around with a Clorox wipe, going over any surface they touch. And in spite of being diligent, Max, Mike, and Ian somehow managed to get sick this weekend, all with different things.

Yesterday I felt like I was going to break under the stress of it all. It felt like an impossible task, this job of keeping one person healthy in a sea of germs. 

When I feel that kind of pressure, I cry. A lot. 

And so I fled to the temple. It felt like a luxury to be able to run away since the last few weeks have tied Mike and me down to two different places, making it unfeasible for either of us to do anything extra. So I felt grateful that this was an option.

On the drive back home, I turned on the Tabernacle Choir in an attempt to hold onto the peace I'd been feeling. My mind drifted over the last few months. As I sat there in the quietly thrumming car, memories began resurfacing--evidence of God's hand in our lives.

I remembered the day after Aaron was diagnosed. We were in the Cancer, Blood, and Bone Marrow clinic. Aaron was getting a unit of platelets before going downstairs for a bone marrow biopsy. As we passed through the clinic's waiting room, I happened to glance at a young woman, and my brain instantly had a moment of recognition. She didn't just remind me of someone; I somehow knew her.

Down the elevator, through the hall, I kept thinking of her face, trying to figure out who she was. Then suddenly, I had it. She was my sister's first mission companion back in March. I had only seen her in photos, but still, I knew it was her. 

I assumed she had probably had cancer before her mission and was back for a checkup. But after asking my sister about it, I found out that it wasn't cancer. 

It was aplastic anemia. 

In the lonely isolation of a diagnosis we'd never heard of, I somehow saw (and recognized) a person I'd never actually met who had intimate experience with the same disease and had successfully conquered it. 

This is the kind of coincidence you can't make up.

In the weeks that followed, I texted and emailed and talked to both Gwen and her mom. They offered hope, shared insights, gave helpful tips, and basically made us feel like we weren't alone. A few days after Aaron's transplant, they visited him in the hospital, bearing BYU gifts and contagious optimism.

I think we would have made the connection with Gwen whether I had seen her in the waiting room that day or not. But the fact that I did see her, that was the tender mercy. 

Not long after I talked to Gwen, we met another family with aplastic anemia. I can't remember how the original contact was made (I think our social worker maybe gave our name to them because we had said we would love to talk to another family), but one morning Mike was with Aaron at the clinic getting more platelets, and the mom came and talked to them. Her son had just received a bone marrow transplant a few days before. At the time, we didn't even know if Aaron would qualify for a bone marrow transplant, but she was able to offer a unique, and very current, perspective.

When Mike told me he had talked to Amber, I was so disappointed that I hadn't been at the hospital too. At that point, I was craving information, and with a disease so rare, it was hard to come by. 

But somehow in the subsequent weeks, our paths have crossed more times than I can count. We pass each other at the exact moment we're coming and going from the hospital. Or I'm in the bathroom washing my hands, and I look up, and it's Amber who happens to be standing at the other sink. Or I walk into the hallway for all of five seconds, but it ends up being the same five seconds that Amber is there too. It has happened so often that there seems to be no other explanation for it except that it was divinely orchestrated.

For a person like me who loves face-to-face interactions a hundred times more than phone conversations, these chance meetings have been such a gift. Amber and Jaxon are just enough ahead of us in the process to be real mentors, and I am so grateful for their experience and wisdom.

Another tender mercy had nothing to do with people but nevertheless made a big impact on our mental health.

The first time Aaron was admitted to the hospital, his room looked out on the helicopter landing pad. There was one exciting moment when a helicopter flew in, but other than that, it was the most boring, most ugly and unchanging view ever. Luckily, we only had to look at it for two days. 

I worried about getting stuck with a view like that for our month-long stay. And so it was one of the first things I noticed when we walked into Room 4408. The view was perfect. We looked out onto the rolling hills (one of them had a big U emblazoned on it, but we managed to look past that) where the leaves gradually changed colors. We could see the entrance to the hospital, and we watched people come and go all day long. We had so many visitors, even nurses, come in and say, "You have such a great view!"

I don't know if they make any kind of effort to put long-term patients in rooms with good views, but it was something I was thankful for every day that we were there.

And speaking of visitors, Aaron had a steady stream of them while he was in the hospital. Before he was admitted, I had told family and friends that he would want visitors to help break up the long days. But beyond that, I didn't try to schedule or arrange anything.

So it was amazing to me that almost every day, Aaron had one or two visitors come. I almost never had to turn someone away because he had too many. Nor did I ever have to try to scrounge up people to come see him. I worried that we might have a barrage of people right at the beginning of his stay, or I thought the weekends might be easier for people and consequently fill up more than the other days.

But from the day he was admitted to the day he was discharged, we had just the right number of daily visitors. I couldn't have planned it better if I had tried.

One of my favorite chapters in The Book of Mormon is Alma 26. Ammon is praising the Lord for the many miracles and blessings he has witnessed. His brothers chastise him just a bit, telling him that he has gone too far in his rejoicing.

But Ammon says, "My joy is carried away, even unto boasting in my God; for he has all power, all wisdom, and all understanding . . . Now if this is boasting, even so will I boast . . . This is my joy, and my great thanksgiving; yea, and I will give thanks unto my God forever."

That is exactly how I feel. We have seen and experienced so many good things throughout this challenge. We have been blessed so abundantly. On the surface, these good things might look like mere coincidences. But underneath, I recognize the familiar mark of God's love. He is the Giver of all good things, and I attribute every good thing to His hand.

Like Ammon, I will rejoice and give thanks unto Him forever.

Stand Still: Engraftment!

If the above photo surprises you, imagine how we felt this morning when the BMT team walked into Aaron's room and asked, "How soon would you like to go home?"

"As soon as possible," we laughed.

"Well, how about today?"

And so here we are tonight, all seven of us, sleeping under the same roof for the first time in a month.

It feels amazing.

When last I wrote, Aaron's ANC had been at 200 for two days.

The next day (Monday, October 7th), we didn't see any change in either his white blood cells or his neutrophils. It being Day +21, the team recommended a dose of neupogen (a hormone that stimulates the bone marrow to make more white blood cells, specifically neutrophils). Dr. Boyer compared it to fertilizer for the grass.

Mike and I were hesitant to agree--not because we had any problem with neupogen itself, but we really wanted to give Aaron a chance to engraft on his own, and it seemed like they were trying to rush him. The team agreed to postpone the neupogen another day but not without giving us many warnings about Aaron's constant risk of infection with his low immune system. Basically every day he didn't have neutrophils was another day to possibly get an infection.

Please don't think I am downplaying the seriousness of an infection at all; we realize we must do everything we can to keep Aaron healthy. However, we did think it was a little bit funny that once Day +21 came, they acted like they had to do something immediately to boost Aaron's counts when the truth is he has had an ANC of 100 or lower ever since he was diagnosed over two months ago. If it was that the chance for engraftment would go down with each passing day, then the urgency made sense. But if it was just the same risk of infection we'd already been dealing with for weeks and weeks, well then, it didn't seem like one day would make any difference.

So after talking about it and weighing the risks and the benefits, we decided to give Aaron's new bone marrow one more day to impress us. If there wasn't any new action on the neutrophil front by the next day, then we would call in the reinforcements.

I actually thought about our scripture a lot on Monday: "Let us cheerfully do all things that lie in our power." I examined all of our efforts over the last four weeks. From mouth care to physical therapy to fluids to medications, Aaron had followed everything the doctors and nurses had asked him to do.

So I moved onto the promise in the second half of the scripture: "And then may we stand still, with the utmost assurance, to see the salvation of God, and for his arm to be revealed."

It was time to stand still.

Mike gave Aaron a blessing. We prayed. I fasted. We waited to see what Heavenly Father would do.

And the next morning (Tuesday, October 8th) . . .

Nothing.

His WBC was 0.6. His ANC was 200.

For whatever reason, his neutrophils had plateaued and did not want to budge from that comfortable number. (I like the way Laynie, one of the nurse practitioners, put it: "They're just baby cells! They're dumb. They don't know what they're doing yet.")

Because there hadn't been any change in his neutrophils in four days, the decision to go forward with the neupogen was easy to make. ("Give him the maximum possible dose!" Mike joked.)

Aaron was all for it. The day before, he kept telling people very matter-of-factly, "I'm going to get neupogen tomorrow."

There was one good thing about his counts during all of this, and that was that his platelets and hemoglobin actually stabilized somewhat and even rose just a little bit on their own. After seeing those numbers plummet week after week, this was so exciting for us. Apparently, Aaron's bone marrow decided to invest all of its energy into platelet and red blood cell production, and not the cells that actually mattered to get him out of the hospital.

Sometimes "standing still" involves using the resources you have available. In Aaron's case this time, that resource was neupogen.

And it did the trick because this morning, Mike sent a text saying that Aaron's ANC had skyrocketed to 1700.

Even with that high of a number, we didn't expect to go home today because they had told us all along that his ANC had to be above 500 for two days before he could be discharged.

But besides the ANC, Aaron was completely ready to go home and had been ready for several days: he was taking all of his medications orally, eating and drinking on his own, wasn't on any anti-nausea medications, had plenty of energy, and didn't have any infections.

According to Dr. Boyer, "Waiting until tomorrow is not going to change anything, so you might as well go home today."

So we took the invitation and ran.

We had to scramble a little bit. We thought we'd have at least one more day to get the house ready, but several family members jumped into action and scrubbed down walls and vacuumed floors while Mike and I went through discharge information, nursing education, pharmacy instructions, etc. With Aaron's nurse, Allison, overseeing us, we changed Aaron's claves and dressing and then flushed and heparin locked his lines.

Meanwhile, Aaron was working on another Lego set, and. as much as he wanted to leave, he also really wanted to finish his model (it was the Statue of Liberty, which we thought was fitting on the day he was set free). By the time we had packed everything up and received all of our instructions, he was almost done, so Mike and I waited around while he finished it in his empty hospital room.

But finally, there was nothing left to do, and we opened the door to Room 4408, and Aaron stepped across the threshold for the first time in thirty days.

A free man.

The child life specialist had made a banner, and as Aaron walked by the central desk in the unit, he was greeted by a whole group of nurses and techs who were ready to send him off. They sang a song, sprayed him with silly string, and let him ring the bell. Many of those people had become like family to us. We love them so much.

On the drive home, I kept asking Aaron questions, "How does it feel to be out of your room? Is it weird to ride in a car again? Look at how the mountain changed colors! Is it nice to have so many things to look at? Can you believe how cold it is?"

But he was pretty quiet. He seemed content to just let it all wash over him and enjoy it.

His journey is far from over: the home health nurse came over tonight, and he'll be at the hospital on Friday for an appointment.

But this chapter is done.

And that feels like a major accomplishment.