The Truth About Aaron's Numbers

Feb 22, 2020



If I talk to you in person and you ask how Aaron is doing, chances are I will say something like, "He's doing really well. His counts are looking good."

This is true.

His platelets have been in the normal range for months now. He hasn't needed a blood transfusion in twelve weeks. He has neutrophils.

But what I might not tell you is that there are some things we are "just going to keep watching," as the doctors say.

One of those things is Aaron's chimerism. (P.S., I am going to do my best to give an accurate explanation of medical terminology and data, but please be patient with my limited vocabulary and expertise.)

A chimerism, you might remember, is when a person has two sets of DNA in their body. Ever since his bone marrow transplant, Aaron has had both his own DNA and Maxwell's. About once a month, he gets a blood draw to check the ratio of Maxwell's DNA to his own.

The cells that his doctors are most interested in are the T-cells (one of the types of white blood cells). It was Aaron's T-cells that attacked his bone marrow and caused the problem in the first place, and we really don't want them to do that again.

Right now, Aaron has a mixture of his and Maxwell's T-cells in his blood. For the past several months, we've been tracking those T-cells with increasing interest. When they were first measured in October, the T-cells were 47% Maxwell's and 53% Aaron's. When they were measured in December, we were all happy to find out that Maxwell's cells had increased to 75%. But the next month, they unfortunately dropped back down to 66%.

Before I could panic too much, Aaron's doctor assured me of a few things:

  1. One lower value does not actually reveal anything. In fact, if the numbers were plotted on a graph, they would still indicate an upward trend. Without more data, it is best not to draw any premature conclusions. (And incidentally, when Aaron's chimerism was checked this month, Maxwell's T-cells were at 69%, so even though it wasn't a significant gain, at least it didn't drop again.)
  2. The T-cells are just one small component of bone marrow. And at this point, all of the other blood cells are 100% Maxwell's. To put that into perspective, even though the T-cells are only 69% Max's, when all of the other cells are accounted for, Aaron's bone marrow is now something like 95% Maxwell's, which is pretty darn close to 100%. (It's just that the T-cells are the most critical to Aaron's full recovery so that is why they get more than their fair share of attention.)
  3. The anti-rejection drug that Aaron is still on suppresses the T-cells. It's critical to suppress those cells so that Aaron's bone marrow has a chance to heal without his own cells attacking Maxwell's or vice versa. So we really can't get a clear interpretation of what's happening until he comes off of that medication and his immune system fully wakes back up. (They will begin the weaning process next month.)
  4. It is common for the T-cells in bone marrow transplant patients to never reach 100% donor. As long as the two different DNA's play nicely together, it really doesn't matter if there are still a few of Aaron's cells in the mix. In fact, our doctor said that having both DNA's can actually help protect against GVHD (Graft Versus Host Disease) in the future. 
So that is why we have to just watch and wait right now: we can't do anything until we know more, and we can't know more until more time has passed.

The other thing we're watching is Aaron's cellular activity. When he was originally diagnosed, his cellular activity was less than 5%. Although it is normal for cellular activity to decrease with age, our doctor said that typical cellularity for an 11-year-old is about 80%. 

I was excited to find out what Aaron's cell activity is like now since it is obvious he is maintaining pretty consistent numbers (even if some of them are not in the normal range yet). When he got his central line removed last month, his doctor did a bone marrow biopsy to determine this.

The results were . . . disappointing. His cell activity came back at 20%, which seemed low to me. Dr. Boyer said at 100 days post transplant, they see that percentage anywhere from 10 to 50. So Aaron's results are not abnormal, but Dr. Boyer did admit that he's "on the low end." Knowing only a few other individuals with aplastic anemia, I have very little to compare to, but the ones I know all had a higher cellularity at this point, which makes it feel like Aaron is behind even if he is not. 

So that is why, even though Aaron's counts are looking good (they really are!), I feel like I have to keep the worst case scenario somewhere at the back of my mind. (I admit, this might not be the best idea for my mental health, but I can't seem to help myself.)

And what is the "worst case scenario," you ask? Well, that's the good news. 

If this bone marrow transplant doesn't end up working, then Aaron will have to do it again.

How could that possibly be good news? Because he gets a second chance (or even a third or fourth chance if necessary). This isn't cancer. A failed attempt does not mean some foreign cells are slowly taking over his body. Rather, his bone marrow just didn't figure things out on the first try and needs another pass at it. 

Of course, it would mean starting the process completely over, and that would really stink. Like, really truly. But we have a donor (although I shudder to think what said donor would do if we told him we needed his bone marrow once again), and we could do it.

But really, I'm getting ahead of myself. Even with the less-than-perfect numbers, all indicators still point to a full and complete recovery. 

And in the words of Dr. Boyer, "I can promise you we'll get this right. There's a slight chance we might have to do again, but in the end, we will get it. No question about it."

I'm banking on that and looking to the future with an eye of faith and hope. We have seen many miracles so far and trust that Aaron's healing will continue to go smoothly. Please continue to keep him in your prayers. 



A Little of This and That in January

Feb 9, 2020


We made it through January! This felt like a real accomplishment, especially because I didn't have a warm-weather trip to break it up this year. We managed to stay busy with . . .

Trying . . . to defy the school district. Following Christmas break, school resumed on Thursday, January 2nd. I felt like this was totally unreasonable for a number of reasons, so I told my kids that if they didn't want to go back to school until Monday, then they had my full permission to do so. Sadly, I guess I've instilled a love of rules into them because both Maxwell and Bradley did not want to miss a day. So they went back to school. Then I realized that the end of term was literally the end of the next week, and the Martin Luther King holiday was the week after that. I don't know who is signing off on these school calendars, but it doesn't seem like it could be that hard to rearrange the dates a little so that the breaks line up in a more convenient way. The other school districts somehow seem to be able to manage it.

Watching . . . the new Little Women. Oh, my heart. I loved this movie so much. I started to cry when the sisters chose to give up their Christmas breakfast for the Hummel family, and then my tears pretty much didn't stop for the rest of the movie. They streamed down my cheeks, and by the time it was done, the scarf around my neck was wet. I loved where they chose to start (and end) the story, the casting, and the intersection between Jo's past and present. It was told so beautifully and perfectly. Seeing this new adaptation fired up all of my love for Little Women, which inspired . . .

Starting . . . a marathon of Little Women adaptations. My sister and I discussed the new Little Women at length (we didn't see it together), reliving all of our favorite scenes and admitting a few of the minor flaws. We decided we needed to watch as many of the past adaptations as we could find in an ongoing movie marathon. We were going to start with the 1933 version with Katharine Hepburn, but after watching the trailer, we decided that even our great love for old movies couldn't stomach that much melodrama. So we watched the 2017 Masterpiece miniseries first instead. And then, the next weekend we watched the 1994 version, and my mom came, too. Next up will be the 1949 adaptation.

Celebrating . . . my 35th birthday. My mom took me out for lunch and a pedicure. Mike got me big, soft cookies in place of a cake (a good decision!). And I got a serger, which I've been wanting for awhile even though I have no room for it. I've already used it to make the comfiest sweatshirt I've ever owned. It was a good day.


Finishing . . . Harry Potter and the Order of the Phoenix. We started our annual Harry Potter reading in August. Mike read Harry Potter and the Chamber of Secrets with Bradley and Clark, and I read the fifth book with Maxwell and Aaron. Clocking in at 870 pages, it felt like a true marathon. We didn’t read much during the month Aaron was in the hospital, and we took a little break in December so that we could do one Christmassy readaloud, but we finally finished this month. We enjoyed it very much, but man, it was a tough one to read. That Dolores Umbridge has to be one of the worst characters in all of literature. I felt an actual hatred towards her.

Saying . . . goodbye to his central line. I already wrote about this, but Aaron's central line was removed on January 10th, and we haven't missed it once (well, maybe Aaron has just a little on the days when he has to have a blood draw).


Playing . . . Pictionary. January was full of a lot of quiet evenings at home where we said, “Well, what should we do tonight?” On one of those nights, Mike said, “How about a game of Pictionary?” We divided up into two teams of three each with Ian acting as the time keeper, and we had the best time. I don’t usually like Pictionary because I don’t have any artistic skills and consequently feel quite self-conscious, but I didn’t mind one bit if my kids made fun of my bad drawings. They all liked it so much that we had to play a couple more matches during the rest of the month. We mixed up the teams each time, and I managed to go undefeated.

Wondering . . . if Ian has a personal mission against his parents’ eyesight. In the past few months he has: broken a pair of Mike’s glasses, washed my contacts down the sink, put soap into Mike’s contact case (and Mike then put those contacts into his eyes . . . ouch), lost multiple contact cases, and (most recently) lost my glasses, which we didn’t find for two days. For all of his sweetness, he is a mischievous one.


Beginning . . . family history classes. Before the end of the year, a friend of mine (Jill) asked if there was something she could teach Aaron. I was so grateful that she reached out about it. Even though homeschooling has been going great with him, the days get a little long. I thought it would do him good to have some interaction with another adult and learn something in the process. After tossing around several ideas, we settled on family history because it is something Jill has a particular passion for, and it is not something Aaron was already getting. It turns out family history is a rich, multi-layered subject with all sorts of different avenues to explore (religious, cultural, geographical, historical, etc.) So far, they have been looking at Mike's family line, tracing it back to the first ancestors who joined the Church and learning about where they came from and who they were. It's fascinating, and I have to admit it, has sparked my interest as well. Mostly though, I'm just grateful that Jill offered a skill she had and gave some of her time to us. It really touched my heart.

Receiving . . . the Aaronic Priesthood. With his twelfth birthday coming up later this year, Aaron was old enough to receive the Aaronic Priesthood and be ordained to the office of deacon. He hadn’t been to church since early September (but had participated with his class via FaceTime), but on the Sunday he was ordained, he donned a mask and came back to church for the first time. So it was a big day all around. We were grateful to have grandparents there to support him, and we are proud of Aaron for accepting greater responsibility and moving forward with faith.


Gallivanting . . . with friends. Clark is by far the most social of any of my kids (at least right now--don't want to prematurely label anyone!), and luckily he has a whole posse of neighborhood friends to keep him entertained. Every day when he gets home from school, he doesn't even pause long enough to take his backpack inside before he is knocking on doors and rounding up anyone who wants to play. I usually don't see him until dinnertime. And on Saturdays, he often spends the whole afternoon running back and forth between yards in an elaborate game of dinosaur hunt or icicle peddlers.

Agonizing . . . over whether my mom and I should visit my grandma in Nebraska. Early in the month, we decided to go, and we purchased plane tickets for the end of the month. But then Lincoln was hit was some pretty serious winter weather, and my grandma was convinced that the weather pattern would continue, so she asked us to cancel our trip. That was easier said than done since we couldn't get a refund on our tickets. So we just watched the weather for the week leading up to it and then finally decided the day before that it was good enough to go. In the end, our trip went so smoothly (I'll share more about it in my February update), but it caused a lot of anxiety and indecisiveness as we tried to figure out what to do.


Switching . . . choir practice to Thursday evenings. I've been accompanying my ward choir for the past five years, and during that time, we've almost always rehearsed either before or after church on Sundays. But this year, we decided to try Thursday evenings instead, and I'm so glad we did because it means that Mike can come and sing now, too. (However, after completely spacing it one Thursday, I realized it hasn't become a routine part of my schedule yet.)

Sledding . . . down Neff's Canyon. Mike and I got adventurous for our weekly date and went sledding . . . alone . . . in the dark . . . in the canyon. It was wild and crazy and fun, and we felt like we were college students again. (And yes, I was a little worried a cougar was going to eat us.)


Learning . . . how to do a back handspring. Bradley is still in gymnastics, and this month they began working on back handsprings. Bradley figured out the rhythm of it really quickly and was doing them on the floor without a spotter by the second class. I think watching him do it for the first time and seeing him look up at me in the bleachers with the proudest grin on his face will probably be one of those memories that will always be a favorite. Unfortunately, the back handspring led to . . .

Injuring . . . his neck. The day after Bradley learned how to do a back handspring, he was doing them at home (I mean, how could he let a skill like that grow cold?!). He didn't have a solid landing, and his neck took the brunt of the mishap. He had a very stiff neck for over a week and even a little trip to the emergency room just to make sure it wasn't anything more serious (it wasn't). We learned that it's probably best to really solidify skills before trying them at home.


Going . . . to weekly storytime at the library. When my big kids were little, it was rare for us to miss storytime, but in a case of true youngest child neglect, Ian has probably only been a couple of times during his entire life. So when one of my friends asked if we'd like to join them each week, I readily agreed. And it's been so great. Ian is past the age of wanting to run away from me (which was one of the things keeping me away) and just contentedly sits on my lap for the entire thirty minutes. (He's actually been a bit shy and hasn't even wanted to do any of the actions to the songs or finger stories yet, but he has still enjoyed it a lot.)


Getting . . . the sweetest note from Clark. One day, Clark and Ian were driving me crazy. They were mercilessly teasing and bothering each other, and after hearing one scream too many, I finally lost it. A little while later, Clark brought me a note, and my bad mood immediately vanished. Clark is so sensitive and loving, and the note was one of the most heartfelt things I've ever received.


Competing . . . in a chess tournament. One of Max's friends invited him to go to a chess tournament. Even though Max loves chess, we've always avoided tournaments in the past because they are all-day affairs, and it's hard to give up an entire Saturday for chess. But since his friend offered to take him, we let him go. He loved it so much that we might not be able to avoid it anymore in the future.


Celebrating . . . my Grandma Lois' birthday. She has been gone for almost twenty years, but she would have been 114, so we decided to honor her at a family party. My mom made one of my great-grandma's signature dishes. She also displayed some old photographs and knickknacks. She even filled up the cream colored candy dish with spice drops, just like Grandma Lois always did. I just thought it was so fun to share memories of her life and spend some time thinking about her.

I think that's a wrap on January! Tell me about something you did to chase away the winter blues.


Lovely War by Julie Berry

Feb 3, 2020


The last book review I wrote was at the end of July, over six months ago.

I can't believe it has been so long since I have graced this blog with my deep thoughts after finishing a book.

But this is a book worth breaking my silence for. It is difficult to write a review of a book I hated (or had mixed feelings about). But it is exhilarating to talk about a book where I loved every single page. And that's what I get to do this time.
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The basic premise of the book might sound a little strange at first, but stay with me. I promise it works beautifully.

The story begins in 1942 in a hotel room in New York City. Aphrodite (the Greek goddess of love) has just been caught by her husband, Hephaestus, having an affair with his brother, Ares (the Greek god of war).

Ensnared in an incriminating golden net, Aphrodite pleads guilty but begs for a chance to explain. She says, "Do you want to see what real love looks like? Do you want to hear about my favorites? Some of my finest work?"

When Hephaestus relents, Aphrodite begins, "I'll tell you the story of an ordinary girl and an ordinary boy--a true story. No, I'll do one better; I'll tell you two."

And with that, she takes her audience back in time to London in 1917 where Hazel Windercott meets James Aldridge at a parish dance, and it is as close to love at first sight as one can get. Their romance is adorably sweet and innocent but lasts only a few days before James reports for duty in the Great War.

The second love story involves Colette Fournier (a Belgian who lost her entire family when her village was massacred) and Aubrey Edwards (an African-American pianist/soldier).

There are so many things I could tell you about this book and why I loved it so much, but I’ll just share three.

First, it was eye opening to learn more about the Great War, especially how black American soldiers were treated by their fellow countrymen. This paragraph, told in Apollo’s voice, sums up the tragedy of it:
"Another week, and tensions will overflow. The army, hoping to prevent a race riot, will decide there's no good place in the states to put them [black American soldiers], and no English-speaking outfit anywhere along the Western front that will serve beside them. So they'll hand them off to the French army like a goodwill offering. No, toss them like a hot potato. No, lob them . . . like a hand grenade."
I often feel proud of the sacrifice made by my country to bring about the end of both world wars, but learning more about the prejudices and violence within the American army because white soldiers weren’t willing to fight with black soldiers was so disheartening, it made me feel sick. It’s so easy to focus on the unity that is felt when a country comes together in the same cause, but this is one time where differences were not overlooked, and the army suffered greatly because of it.

Second, I loved both romances so much, and, if pressed, I don’t think I could choose a favorite between the two couples. The writing was gorgeous and never seemed trite or cheesy (which was such a relief since I had tried another World War I book a few weeks before but gave up on it because the writing seemed so mediocre). Also, this is a book I would feel comfortable recommending to anyone—the romances were so sweet and innocent.

Third, I loved seeing this story through the perspective of the gods. Some friends I talked to said they didn’t really feel like the gods added much to the story, but I felt like they helped me see love and war and talent and beauty and heartache and death in a completely different light.

Here’s one favorite example of this (but be warned that it contains spoilers).

Spoilers ahead . . .

Aphrodite calls Hades as one of her witnesses, and hegives his own accounts of a few of the characters. I always tensed up a little when it was his turn, knowing that someone was probably going to die.

During one scene, Hazel and Collette were on a train together traveling to meet James when it is hit by an explosion. Hazel is killed when she throws herself over Collette to save her friend’s life. When this happened, I actually had to turn off the book (P.S., I listened to this, and the audio is excellent). I was in shock, and I said to myself, “No. No, no, no, no. That did not just happen.” When I finally drummed up the courage to turn it back on, Hazel was having a conversation with Hades (not a good sign). She asked to go back, and, surprisingly, Hades agreed to let her.

Some might say that this was too happy (and unrealistic) to have happened, but for me, it made the gods not only an entertaining part of the story but an essential one. It made sense that one of them would work out a deal with Hades, and I loved that that person was Hazel.

End of spoilers.

One of the big themes in the book is that everyone is broken by war, and because of that, everyone has some grief that they are carrying. At one point, Aubrey and Collette are talking, and Aubrey is apologizing because he is so torn up and devastated by the death of one of his friends (and feels quite a bit of survivor’s guilt because of it), but he knows Collette has suffered so much more loss than he has. Collette quiets him and says, “Grief is not a contest,” and I thought about how easy it is for us to compare our grief when really, grief is grief; a loss is a loss; heartache is heartache. It is all real and painful, and it’s okay to feel it.

I'm trying to remember when the last time was that I read a book where I got so much pleasure from the actual reading and also felt so incredibly satisfied when it was over. It’s been a long time, and I’m glad I can now add this book to that small and very exclusive list.

2020: Plow in Hope

Jan 25, 2020


A few weeks before the end of the year, I was sitting in church one Sunday, and the speaker was talking about hope. She quoted several scriptures in quick succession, including, "Paul says we should 'plow in hope,' and I admit that's sometimes what it feels like to me."

My mind latched onto that phrase--plow in hope--and I couldn't let it go. I was intrigued, fascinated by it. What exactly does it mean to "plow in hope"?

Turning to the scriptures, I found the verse and was rather disappointed to discover that Paul was, in fact, literally just talking about plowing a field: "He that ploweth should plow in hope" (1 Corinthians 9:10).

I might have just let it go, recognizing my life is pretty far removed from a farm and crops, but I continued to ponder on this idea of plowing in hope. And as so often happens with holy writ, once my mind was engaged, the insights and applications rolled in. I decided this charge to "plow in hope" would be my theme for 2020.

Hope is both a thing and an action. I kind of love that about it. It is something I want and also something I do. It is both the expectation of good things on the horizon and exercising a certain kind of mindset.

These things are all true, but when I attach the word "plow" to "hope," it adds another dimension to the concept.

First of all, when Paul said, "He that ploweth should plow in hope," what he was really saying was, "Whatever you do, do it in hope." If I'm taking care of kids, I should do it in hope. If I'm helping a friend, do it in hope. If I'm cleaning my house, do it in hope. Hope is actually a way of life and should color everything I say or do. (And what, you might ask, should I be hoping for in all of these instances? How about an eternal perspective, my best effort, or a good outcome?)

Second, when I look at the word "plow," I think of hard, physical labor. It isn't easy to plow. It takes effort to turn over the heavy soil and make it ready for planting. Likewise, hope requires energy. I sometimes think of hope as being this very weak  attribute; it feels like you're not doing much if you're just sitting around hoping that things will eventually be better. But if you're plowing in hope, then you're actually up and doing: you're not waiting for your life to be better, you're making it better.

And finally, a farmer plows his field to prepare it for sowing. It is the very first step in reaping a harvest. He can't plant a seed if he doesn't plow first. Similarly, hope is my first step in making my life ready for new growth. It primes my mind and heart so I can learn from the past and prepare for the future.

As I planned my goals for 2020, two things guided me. The first, obviously, was this phrase for which I've just written a whole discourse. The second was the new Children and Youth Program for my church.

This new program encourages boys and girls to set goals in four categories: spiritual, physical, intellectual, and social. I love this framework because it helps give more of a purpose and direction to those things we have a desire to do. I helped Aaron, Maxwell, and Bradley set goals for themselves in each of these four categories, and I decided to use it in organizing my own goals as well.

With 2020 well underway, I am already deep in the trenches with some of these goals, and I am loving them so far.

Spiritual


Physical
  • Make a meal plan every week
  • Try out grocery pickup
  • Learn how to parallel park
  • Learn how to fold a fitted sheet
  • Go on four new hikes
  • Continue habit of exercising four times each week

Intellectual
  • Write one poem every week
  • Write one book review each month
  • Read a book about writing and/or participate in some kind of writing challenge (still researching this one . . .)
  • Knit something out of linen
  • Sew something with serger
  • Spend more time in books and less time on phone

Social
  • Edit family videos (do this with Aaron)
  • Teach someone to knit and/or start a knitting group
  • Weekly communication with siblings
  • Give hugs to Mike and boys every day
  • Take Aaron on a trip to celebrate 12th birthday
  • Find a way to store journals safely

Without proper explanations, I realize that many of these goals might seem a little vague, or it might not make sense why I put them into the categories that I did. I thought about giving a little background on each one but decided I liked seeing all of my goals in a compact list. More details will come later, so feel free to ask questions if you have any.

Also not explained is how these goals will help me develop greater hope. It might not be completely obvious on the surface, but almost all of them were prompted by hope in some way, and I have confidence that as I complete them, this attribute will become a more prominent part of my life.

When I was a freshman in college, I was in one of BYU's unauditioned choirs. We sang a song that was based on a poem by Emily Dickinson. In recent weeks, as I've been thinking about the nature of hope, those words have come back to me: "Hope is the thing with feathers / That perches in the soul / And sings the tunes without the words / And never stops at all."

I am looking forward to a year of putting in my plow and allowing hope to let me fly.


A Little of This and That in December

Jan 18, 2020


We enjoyed December very much. Because we were somewhat limited with what we could do and had to say no to some of the things we would normally say yes to, it lost some of the frantic, fast-paced energy of other years. I think I need more Decembers like this one. We filled our time with . . .

Spending . . . seven hours making an igloo. At the beginning of the month, we were buried in snow. It was amazing packing snow, and Aaron spent three days constructing an igloo. I was glad he felt like being out in the cold and sunshine for so long. Also, he was perhaps the only sixth grader playing in the snow on a Monday morning. We have to take advantage of these perks while we can.


Procrastinating . . . STEM projects. Both Clark and Maxwell did STEM projects this year (it was optional for Bradley's class, so he opted out). When Mike was asking Clark if he had any science questions that they could answer through a project, Clark said, "How did Jesus make the earth?" That was a little too big for a weekend project, so he went with  a bubbles experiment instead, and Maxwell did something with electricity. You can probably tell that I was not the one to help them with these projects. My job was nagging them to get started with their research, which they finally did . . . the weekend before they were due.

Getting . . . a surprise Christmas present. One day my mom came up to our house to babysit the boys while I was with Aaron at an appointment. When we got home, Ian and Clark were very excited about a present under the tree. It turned out, the present was actually for me. My mom knows about my love for nativities and had decided to get me an adorable nesting doll nativity . . . just because. She brought it early in the month so we could enjoy it for all of December. It was the most delightful, unexpected surprise, and I actually had the perfect shelf for it, so I guess it was meant to be.


Crafting . . . Christmas ornaments. For years now, ever since Aaron was little, we spend some time each December making new ornaments for our tree. This year, I turned to a beloved old-school craft from my childhood: plastic canvas. I used to make all kinds of things with this stuff--Barbie furniture, a tissue box cover to match my room, wall hangings, etc. I cut out Christmas shapes for the boys, and then they stitched their designs onto them. Aaron designed his own BYU ornament, Max created a Santa, Bradley stitched a gingerbread man, and Clark made a bell. Then they made ornaments for their teachers as well. Bradley is my crafty kid, so he especially loved it, and I think they turned out great.


Speaking . . . at Incanta's Christmas concert. Last year, I participated in a brand new women's choir. It was fun but also extremely stressful. So I let it go this year. However, in November my friend, Brooke (who founded the choir), asked me if I would be willing to be one of the speakers at the Christmas concert. She wondered if I would share the story about Maxwell being a bone marrow match for Aaron. I agreed and turned this blog post into something a bit more Christmasy. It was a privilege to be able to share a part of Aaron's story against the backdrop of breathtakingly gorgeous music, especially because it was followed by three of the sweetest lullabies, and these added tender poignancy to my words.


Finishing . . . two big knitting projects. Because knitting is such a slow craft, there are some months where I knit a lot but don't actually complete anything. But then there are other months (like this one) where I finally get to see the fruits of my labor. It felt so good to bind off on a couple of really big projects: a cabled red sweater (that I had been working on since August) and a lace cowl (that I had been working on since March). Of course, I wasn't knitting exclusively on either of these things (in fact, I took a big break from the lace cowl in the fall because I didn't have the concentration capacity to handle it). Both projects turned out just exactly as I imagined them, and I have been wearing them a ton ever since. (Now I need to choose another big project (or two) to have on my needles. It always feels good to have an ongoing big project.)



Enjoying . . . a low-key holiday season. Because we had to say no to a lot of things, we had one of the most relaxed, stress-free Decembers on record. I kind of loved it. And we still managed to do a few of our favorite traditions: the Christkindlmarkt (just Mike and me), our favorite live Nativity (Aaron stayed home), the Johnson family party (Aaron wore a mask), and Frozen 2 at the movie theater (we wiped down all of our seats and had Aaron sit in the back corner with a mask--we didn't look like paranoid parents at all).




Getting . . . my dream calling. For the last year, I've been helping in the young women organization in my church. It was a challenging calling for many reasons, but after going to camp over the summer, I finally felt like I had found my place. I enjoyed spending time with the girls and love each one of them. I anticipated that I would probably be with them for at least another year, possibly more. But then, completely out of the blue, the bishop called me one day and asked if I would serve as the primary pianist. This has been a job that I have always wanted but have never had. So even though it was disappointing to leave the young women after such a short time, I couldn't possibly say no to the thing I've always wanted to do. I'm still not sure how or why it happened, but I'm so grateful to get to be in primary with my kids and help with the music. It's going to be fun.

Exclaiming . . . over favorite presents. We couldn't have asked for a nicer Christmas Day. We spent the day at home--unwrapping gifts, trying out new games, and enjoying the new snow (Salt Lake delivered a last-minute white Christmas again!). Among the many delights, there were a few standouts: a can of Easy Cheese for Clark (turns out it was something he had always wanted, and to have his own can with no restrictions for its use was basically a dream come true for him); a little stuffed dragon for Clark (this was a whim purchase on Christmas Eve, and it ended up being his very favorite gift that he has played with every day since); a big dot-to-dot book for Bradley (he spent most of the late afternoon on Christmas working on one); a cookbook for Max (as well as his own mixing spoon); a Playmobil garbage truck for Ian (the thrill of dumping trash into the back of the truck did not get old for a very long time); a Hygge survival kit for me from my sister, Anna (she wrapped up a giant stack of presents, and it was so fun opening each one and seeing how it fit into the Hygge theme--she knows me well); and finally, a hover board for Aaron (it was the only thing he asked for (besides socks), and it did not disappoint--nothing quite compares to getting exactly what you've been dreaming of for over a month). After all was said and done, Mike and I only forgot to buy one gift (a whittling book for Max to go along with his pocket knife--we searched for it frantically on Christmas Eve but to no avail), and we only had one accidental purchase (a Playmobil school bus that somehow showed up on our porch--we'll save it for Ian's birthday).





Sledding . . . on Christmas Day. We didn't get a ton of snow on Christmas, but the mountains did, so Mike took the boys into the canyon to go sledding. I stayed home with Ian (who was taking a nap) and sat by the front window, knitting my Christmas ornament (see below) and watching a Christmas movie. The afternoon left everyone feeling happy and satisfied.


Continuing . . . with my personal tradition of knitting an ornament on Christmas Day. Mike laughs that I'm calling this a "tradition," since technically, this is only the second year I've done it (although I did knit an ornament in 2017 as well, just not on Christmas Day). But I think I'm safe calling it a tradition because I anticipate it continuing for many years to come. An ornament is a perfect little project to complete in one day, and it feels so festive to work on something that will be hung on the tree when it's done. Plus, each one later reminds me of that specific Christmas, which I love. This year, I made a cute little gnome. It had been a long time since I had made anything with double pointed needles and little parts, and I loved the process.


Baking . . . up a storm. Max has fallen in love with cooking (and baking, specifically). It's an interest that has steadily been growing for the past year. I decided to get Max a cookbook for Christmas, and he has already used it so much. Over the break, he made snickerdoodles, zebra cake, banana bread, and monkey bread. Mike or I were available for questions, but he pretty much made everything by himself. (Now if only I could get him to clean up the aftermath so independently . . . ) I told Mike, "If Maxwell asks to bake something, say yes. It always puts him in such a good mood." And it's true. I can often hear him humming and singing in the kitchen as he mixes up batter or rolls out dough. And then he practically bursts with pride (while feigning total nonchalance) as we all try his creation. It has given him a kind of confidence I haven't seen before.


Reaching . . . Day +100. Aaron did it! He made it to Day +100. The BMT team gave him the all clear to eat all of his favorite foods again, and that very day, we got take out from Jimmy Johns for lunch and pizza from The Pie for dinner. It's like Christmas every day for him as he gets to eat formerly banned foods. I thought he was going to die of happiness recently when he got to put lettuce on his chicken sandwich.


Taking . . . Bradley to Hale Center Theater's production of A Christmas Carol. We have a tradition to take each of our boys to see this play the year that they turn eight. This year, it was Bradley's turn. We went on the 26th, and it was so nice to have something fun to look forward to after Christmas. We had front row seats this time, which meant we could see the actual tears in Marley's eyes but also made the costume makeup look more garish than usual. I loved watching Bradley at the end of the play. He was practically bursting with excitement as Ebeneezer Scrooge began to right all of his wrongs. He loved some of the lines so much that he repeated them to himself, and I had to remind him not to be too loud. This has been such a fun tradition with our kids. It's weird for me to think that the next time we go, it will be with Clark, and that means he'll be eight.


Ringing . . . in 2020! We spent part of New Year's Eve at my parents' house and then came home for the remainder of the night so that Ian could go to bed.


That pretty much sums up our month all the way up to 11:59 pm on New Year's Eve, so there isn't anything left to tell. I hope all of you had a wonderful holiday season as well. 

Now You See It . . . Now You Don't!

Jan 11, 2020


Mornings are often very reflective for me, and as I'm writing this on an early Saturday morning, I can't help but think on the many blessings and miracles we've seen over the last five and half months since Aaron's diagnosis. 

For the first few months, it was all about adding things: transfusions, central lines, medications, food restrictions, appointments, chemotherapy, hand sanitizer, hospital stays, and stem cells. But now we've reached a point in treatment where we are gradually taking things away.

Yesterday we got rid of a big one: Aaron's broviac line was removed!


Even though it was literally a five-minute procedure, he still had to be put under general anesthesia to do it, which meant he had to be fasting. This would have been fine except that they had to add an emergency laparoscopy ahead of him, which set everything back by three hours. Aaron was a good sport about it until the iPad ran out of battery, and then all he could think about was his complaining stomach.

Everyone was so nice and apologetic about the delay, but I didn't feel even a little bit resentful about it. It felt like a privilege to be there for something so celebratory when another family was desperately trying to find answers for what was wrong with their baby. 

I was worried they might bump Aaron off the schedule completely. This would have been a bummer, but merely that--a bummer. Nothing tragic. But luckily, they eventually took him back, and everything went smoothly (including a bone marrow aspiration and biopsy, which we'll have the results from next week). 

Aaron came right out of the anesthesia, but he was the grumpiest he's ever been. He kept telling the nurse, "I want to go home." And if she asked him if he wanted anything, he would either close his eyes and rapidly shake his head or huff, "Okay." The ride home was worse as his displeasure turned into uncharacteristic wailing, but as soon as we convinced him to eat something, he calmed down, and his easy going mood was restored.


And now, the line is gone, leaving just a little scar behind as a souvenir. Actually, Aaron has two scars, one on each side, because, you might remember, his line had to be replaced awhile back after it inexplicably started to come out. 

Here are a few other facts about his line:

--It was removed four months to the day of when it was placed (the first one, that is).

--When Aaron was in the hospital, his line somehow got contaminated, and so it could no longer be used for blood draws (if they needed a tacro level). One benefit of having the line replaced was that it was once again clean and fully functioning. 

--Mike or I flushed and heparin locked his line every morning and evening. When they first showed me how to do it when Aaron was still in the hospital, I was scared and nervous. But by the end, I could pretty much do it in my sleep with Ian and Clark clustered around and Aaron trying to build Legos at the same time.


--We were also trained on how to change the claves and dressing (which had to be done every week), but I was never brave enough to try it at home. This was partly because we had such an excellent home health nurse who came to our house every Monday to do it, so I didn't feel any sort of motivation to do it myself.

--Aaron's line always flushed really smoothly. When we told Brooke (our home health nurse) that Aaron's line was coming out this week, she said, "It kind of pains me to get rid of a line that is working so well." 

--When Aaron was discharged from the hospital, he was taking all of his medication orally except for magnesium. So once a week, the pharmacy dropped off the next seven days of magnesium (little spheres the size of a tennis ball), which we hooked up to his line every night. Three weeks ago, we finally switched him to an oral magnesium, and he has done just fine with that.


--I've had an alarm set on my phone for 9:00 am and 9:00 pm so I could always remember to give Aaron his tacro and other medications and flush his line. It has become such a part of our routine that whenever it goes off, Ian says, "Oh, it's time for Aaron's medicine!" or "It's time to do Aaron's line!" 

--I have a feeling that even though the line is gone, I will still be finding blue caps and the tops of syringes under couch cushions or behind chairs for many months to come.

Last night, Mike's dad showed up with a pink box from Mrs. Backer's in celebration of the line removal. That pink box has somehow become a symbol to me of all that we've been through over the last few months, and it felt like a triumph to all gather around and gorge ourselves on yummy pastries, no restrictions attached.


P.S. We have felt so blessed by the thoughts and prayers of so many of you during these hard few months. A couple of nights ago, Mike told me, "When I thank someone for their prayers, I mean it. I really believe it's because of the prayers of others that Aaron has done so well." I agree with him completely.

Although Aaron is still on the road to recovery, it feels like he is on the home stretch. It has been a fairly smooth ride, and our hearts are continually drawn out in gratitude for our many blessings.

This week, I learned about a little girl who received a bone marrow transplant about six weeks ago. Last Friday, she suffered one of the rarest and most serious side effects of a bone marrow transplant when her lungs became inflamed and shut down. My heart is aching for this sweet family as nine different medical teams try to figure out how to help her. Our whole family has been praying for her this week, and I'd like to invite you to do the same. We have seen the power of prayer in Aaron's life and know it is the same for Indy. 

Be Present: A Look Back at My 2019 Goals

Jan 4, 2020



My focus for 2019 was to be present. This was prompted by a desire to truly connect with my kids, husband, friends, neighbors, and the world around me. Little did I know that the year would bring some real challenges where an ability to be present and live in the moment sometimes made all the difference between a good and a bad day.

I spent the first half of the year working diligently on my goals only to abandon almost all of them in August. Interestingly, the ones I held onto were those I had originally put in place in an attempt to keep me anchored and present. The projects were forgotten; the habits were life-saving. 

In November, I began to resurface. The intensity with which we lived August, September, and October had relaxed into something much more manageable and quiet. I revisited my goals and decided to make a real effort to complete them before the end of the year.

Nothing gives me a thrill quite like accomplishing goals, so I ended 2019 on a high note by checking off three of my goals in the final week. It was a mad dash to the finish line, and it felt good. 

Still, even with all of that pulsing ambition, it wasn't enough to pull out a perfect score. I'm okay with that. No, really. I just took a moment to think about it, and I feel content with my efforts. I tried my best, but I didn't turn into a maniac trying to get everything done in a rushed or superficial way (something that has possibly happened in the past). 

Now that the year has ended, a little reflection is in order: some confessions, some excuses, some celebrations. Using the same format as when I first presented them in January, here are the categories, my goals, and my thoughts on each one:

Habits I Wanted to Make
  • Edit photos on a weekly basis--I instituted this habit at the very beginning of the year, and I stuck with it, even during the time that Aaron was in the hospital. Sometimes I was late by a week or two, but for the most part, I stayed on top of the editing (with the exception of the end of August, which I somehow didn't realize I'd never edited until I was looking back through photos this week). It has helped that I almost never use my real camera anymore so all of my editing can be done on my phone while I'm riding in the car or waiting in line or sitting at a soccer game. This is a habit I plan to continue in 2020.
  • Write 2-4 paragraphs for "This and That" posts at the end of each week. I tried to dedicate some time every Sunday to summing up any important happenings or anecdotes. This made it so much easier to compile my "This and That" posts at the end of each month. Both this goal and the one above confirmed something that I already knew about myself: I would rather work on a goal in small, consistent steps than have it consume my entire life for hours (or days, as the case might be). In December I neglected this habit, which I deeply regretted when it came time to write my monthly update. 
  • Write book review within three days of finishing the book--Or how about, stop writing book reviews altogether? This goal was going so well until the summer. I'd like to blame it on all of the medical things that took over my time, but to be honest, I had already begun to slip before then. We'll see what happens in 2020, but overall I'm feeling a less pressing need to record all of my thoughts after finishing a book. 
Places I Wanted to Visit
  • Go on a family vacation in the summer--We went to Lake Tahoe the week before Aaron was diagnosed. I'm sure we would have cancelled it if we'd known what was going on in his body at the time. But we didn't, and it was a blissful five days with my brother's family. Besides that, we also took our kids to Disneyland, went to southern Utah for spring break, and took a couple's trip to New York City. Not too shabby before all of our plans for adventure came to a screeching halt in August.

  • Take my kids to the Joseph Smith exhibit at the Church History Museum in downtown Salt Lake City--I'm not even going to pretend with this one. I didn't do it. The sad thing is, it wouldn't have been at all hard to do (especially pre-August), but I just never prioritized it. But with 2020 being the 200th anniversary of Joseph Smith's First Vision, it's probably better that we waited anyway. At least that's what I'm telling myself.
  • Try new restaurants that are close to home--I failed to keep a list, but these are the places I remember: Caputo's, Meier's, Layla, Iced, Copper Kitchen, Real Taqueria, A Pig and a Jelly Jar, Harbor, Cheddaburger, and Tradition. Out of all of those, my favorite was probably Copper Kitchen, mostly because their beet salad basically blew my mind, and I dream about it more often than I should admit. This was a really fun goal and one that I'm sure we'll continue in 2020 (in fact, we already have plans to go to a new place tonight). 
  • Go to a Utah temple I haven't been to before--I went to the Draper temple with my friend, Sarah, and was planning to just count that for my goal (even though I felt like it was cheating just a little bit since I had been to a sealing there previously). But the temple I had in mind when I made this goal was actually the Provo City Center Temple, and I had a hard time giving that up. So five days before the New Year, I convinced my mom to go with me, and we had a lovely afternoon in the temple. 


Projects I Wanted to Complete
  • Sew a dress for myself--I ended up sewing two dresses for myself. The first one was made out of the wrong fabric and felt like I was wearing a stiff burlap sack (plus, just when I was almost done with it, I noticed a big flaw running through the fabric). So I purchased a nice lightweight linen when we were in New York and remade the exact same dress. The result was much better, and it is going to be the perfect neutral canvas to wear some of my knitted pieces with (see below). Also, it maybe rekindled my love of sewing (if only I didn't have to drag out all of my equipment every time I want to make something!).
Dress #1

 Dress #2
  • Knit a lace cowl--This is my crowning achievement of 2019, or at least it feels that way. I fell in love with the Prism cowl back in 2017. I attempted to make it but ended up ripping it out in total frustration after just seven rows. After a year of other projects (including some lace and chart reading), I decided I was ready to tackle it again. I cast on in March and wove in my final end on December 31st. It represents close to 200 hours of focused work (no mindless knitting here), and I am insanely proud of it. (Plus, it pairs perfectly with my handmade dress!)



  • Landscape the front of our house--I was overthinking it, and then one day in the spring, Mike just decided to buy a bunch of random bushes and plant them in the front and back yards. It isn't perfect, but sometimes done is better than perfect. (I'm excited to see how much they've grown in the spring . . . or how many we've inadvertently killed.)

  • Decorate Ian's bedroom--I love decorated spaces, but I am not a decorator. I just don't seem to have a vision for it. I don't know how to use space very creatively, and I am very distrustful of my own taste and preferences. So in the end, I didn't change as much as I wanted to, but I still: purchased a new chair, swapped out the rug, found a perfect bedside lamp, rearranged the furniture, painted the walls (credit goes to Mike), and hung up pictures. I still would like to find a good way to display/store picture books, hang a mirror on the opposite wall, and possibly do some kind of window treatment (although I don't want it to make the room feel smaller . . .). Also, Ian is going to be moving out of his crib in the next couple of months so that will change things, too. But for now, here is a before and after shot.


  • Read Saints: The Standard of Truth, Volume 1--This was the only goal I made that had anything to do with reading. I listened to this book off and on throughout the year. I found myself needing to take breaks from it because, quite frankly, it was rather faith-shaking and disturbing. I think I grew up with a rather glorified view of the early pioneers and founders of my faith, and although it's true that they made a lot of sacrifices and had strong testimonies, they also made a lot of mistakes and succumbed to many human frailties. I am still wrestling with how to move forward with some of this information. 
Things I Wanted to Do to Be More Present
  • Notice the eye color of the person I'm talking to--If you've noticed me gazing uncomfortably into your eyes over the past year, this is why. Haha, I'm just kidding. I actually dropped this goal after the first month or two, but I think it had the long-term benefit of increasing my attention to others. I maybe didn't always consciously notice the color of their eyes, but I noticed other things about them, and that helped me in my sincere interactions with them. 
  • Observe what the sky looks like every day--This might have been my very favorite goal of 2019. What a gift it was to consciously notice the sky every day. I saw things I never have before and felt sweet gratitude for the world I live in and the beauties all around me. I would encourage everyone to just take a minute to look, really look, at the sky each day and see how it makes you feel.

  • Limit phone use by setting weekly time and usage goals--Oh, this goal. I tried so many different things to break away from the chains of my phone. And many of them worked. But all of them felt really restrictive--not like I was becoming less addicted to my phone, but more like I was forcing myself not to look at it. I do much better at abstaining than moderating. But abstaining doesn't really seem like an option in today's world, at least not completely. Yes, I could delete my accounts on Instagram and Facebook. Yes, I could switch back over to a flip phone so that I wouldn't have access to my email or the internet. But what I really want is to still be able to have my phone for when I really need it but not feel its constant pull to use it and look at it. Here are some of the effective things I did to help me manage my time on my phone: daily blackout times, not looking at my phone after I went to bed, earning social media time by listening to a talk first, setting a time limit on certain apps, deleting apps off of my phone, and staying off Instagram on Sundays. Like I said above, these things have worked, but they haven't changed my actual inclination or desire, and that's what I really want.
  • Write down three things I'm grateful for every night--I was really good with this one for the first month or two of the year, and then I reinstituted it when Aaron was in the hospital. But other than that, I haven't done the best with actually writing down my gratitude (which is kind of funny since I'm already writing in my journal every night so it would be so easy to do). I believe in the power of gratitude though, so I'm trying to figure out a way to make it a tangible part of my 2020.
  • Continue with weekly special time with my kids--I wrote an entire blog post in October 2018 about my love of one-on-one special time with each of my kids. Soon after writing that post however, some of the boys started to resist it (Maxwell had already been complaining about it for quite some time). I think I made that goal in the hopes that I could power through and save it, but instead, I decided to let it go. It was meant to be a time each week that my kids looked forward to, but it seemed to be having the opposite effect. So instead, I decided to not force my kids into my own rigid ideas of quality time but rather listen to them when they asked for something and then do my very best to agree to whatever it was. If one of them wanted to play a game (or jump on the tramp or read or talk or make something), I tried to say yes. It wasn't easy for me; I like things to be on the schedule so I can plan for them; and I don't like taking a break if I'm in the middle of something that feels important. But being spontaneous felt more genuine. Maybe that will change this year. I don't know. But for 2019, that's what felt right. 
I remember at the beginning of 2019 feeling rather silly for choosing "Be Present" as my theme. It seemed a little cliche. But I couldn't deny that I felt drawn, almost compelled, to choose it. 

As I committed to be present every day, a funny thing happened. I delighted in the very simplest of things: clouds cradled between mountain peaks, a brilliant orange sky on Halloween night, a poplar tree that inexplicably wouldn't drop its leaves (even though its two neighbors did), an old house in minty paint that I never noticed before even though I'd driven past it a hundred times, the smell of pine in the air. These things have brought me an inordinate amount of joy.

And the thing is, they have always been there. I used to notice them only when they were highlighted in some way. But this year, I sought them out, and they rushed to show themselves to me. It's been kind of magical actually. 


Now I'm turning my attention to 2020. I have my theme; I've narrowed down most of my goals. I'm ready to commit to something new.
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