"Hope Ya Know, We Had a Hard Time"

Mar 28, 2021

Aaron, 2011 (I've always loved those dreamboat brown eyes)

Things started to go downhill almost immediately after I hit "publish" on last week's update. In fact, I kind of wondered if I had jinxed ourselves by sharing how good the week had been--Murphy's Law, and all that.

I had mentioned that Aaron's gums had begun to bleed last Sunday afternoon. We tried for several hours to get them to stop, but we were unsuccessful. Mike took him to the hospital in the late evening, and they got home just before midnight. 

In spite of the late night, I was feeling hopeful. This is great, I thought. Now he won't have to go into the crowded clinic tomorrow for his appointment, and we'll just be able to stay home for a few days.

I was so wrong.

Later the next morning, Aaron just couldn't seem to get going. He was curled up in a blanket on the couch, and it seemed like more than just teenage laziness. I took his temperature; he had a fever; back to the hospital he went. He came home for less than 24 hours on Thursday, but other than that, he has been at the hospital all of this week (including right now).

Among other things, this is what Aaron has been dealing with this week:

  • Intermittent fevers that come and go without warning
  • Another episode of blacking out in the bathroom (followed by two more instances the same day)
  • Plummeting blood pressure every time he stands up (hence, the fainting spells)
  • Elevated heart rate
  • Low hemoglobin, even after blood transfusions (this happened for three days in a row where he got blood and the next day, he was right back down in the 6's)
  • CT scan, chest x-ray, and EKG to try to determine a cause for the fevers and low blood pressure (they all came back normal)
  • A battery of labs to search for any antibodies, viruses, bacteria, or fungus that could be causing all of these problems (everything has come back negative so far)
  • A violent reaction to a blood transfusion (fever, chills, uncontrollable shaking, etc.)
These things have all been really frightening for us. It is hard to always feel like you're teetering right on the brink and one small push could tip you over into the abyss. 

As the week progressed and everything piled up, Mike and I began to feel desperate. Sometimes I feel like our doctors don't understand the gravity of the situation. I know this isn't true since they continue to hospitalize him and run every test they can think of. But the difference is they are dealing with a whole array of sick kids every day. To them, Aaron is just one more sick kid. They analyze his numbers and look at his test results and determine the next step. But to me, he's my son--the very essence of my being. 

They say, "It's okay. This is not a malignant disease. We have time." And I say, "This isn't malignant, but it is life threatening. Every day that passes means he could get an infection or start to bleed internally, both of which could be fatal." 

It might sound like I'm being melodramatic, but I think our doctors would agree with me that these are real possibilities. 

Which means that this week I became absolutely frantic to get this transplant started. It feels like the only way out at this point. Aaron doesn't have platelets so he's going to continue to bleed. He doesn't have red blood cells so he's going to continue to get lightheaded and dizzy. He doesn't have white blood cells so he's going to continue to have fevers. The only long-lasting way to fix these problems is through a transplant. 

And yet, we continue to hold off the transplant because of one (one!) genetic test. They want to make sure Maxwell does not have a genetic condition known as dyskeratosis congenita (which is basically inherited bone marrow failure). When Aaron was originally diagnosed with aplastic anemia, they ran all of the genetic tests on him, including for dyskeratosis congenita, but they never did them on Max. Since Max and Aaron were perfect matches, as well as siblings, it was highly unlikely that Max would have a genetic condition that Aaron did not. But because the first transplant failed, they had to consider this as a possibility for Max and rule it out before proceeding with him as a donor again. 

We have been waiting for this test result for weeks. At first, we were fine waiting because Aaron was fairly stable. But now things feel so volatile that we asked the doctors, "Can we just move forward with the transplant, even without knowing the results?" To which they responded, "Are you crazy? If Max has this genetic condition, we need to know about it!" To which I responded (in my head), "If I have two children who are genetically similar enough that they are perfect matches, and one of them has idiopathic bone marrow failure and the other has hereditary bone marrow failure, then I will probably have a mental breakdown." The chances seem unlikely, and yet, we've beaten the odds before, so I think they're right to wait. 

But I just needed to know when that test was going to get here. I didn't know how we could wait another few weeks. We asked our doctors if they could call the genetics lab and ask them to bump Max's test up the line (they were rather non-committal about this). Finally on Friday, Mike decided to call the lab himself. He found out what I'd suspected all along--that the actual processing of the blood was done by a machine and there was no way to speed it up. They told him that once it was being processed, it would take 10 to 21 days. We knew from tracking Max's labs that they had started processing it on March 19th. So we figured that the soonest it would be done was sometime next week. 

But then right after Mike got done talking to the lab, he looked up the timeline again and saw that Max's test had been moved from "lab processing" to "analysis and interpretation," and then yesterday, it moved one step further to "clinician review," which is the final step before "report available." So I am extremely hopeful that we will get the results very soon, maybe even tomorrow.

And if we do get the results and they're good results (please let them be good!!), then it's going to be full steam ahead. 

But in the meantime, things are looking up for Aaron. He is still in the hospital, but they gave him a dose of immunoglobulin yesterday, and today his hemoglobin is at 9, his heart rate and blood pressure are normal, and he hasn't had any fevers. He has felt good today--probably the best he's felt all week. He celebrated by putting together a LEGO replica of the White House.

I'm missing that boy though. Mike and I decided not to do any trading back and forth at the hospital this time because Clark's cold from last week spread to all of the other boys (a huge disappointment since I worked so hard to quarantine everyone and make them wear masks), and we didn't want to risk transmitting anything to the hospital. 

One of my friends reminded me of a talk that Elder Quentin L. Cook gave more than twelve years ago. He began the talk by recounting an experience he'd had when he got caught in a spring blizzard with two of his young children. After a night of being stranded, they eventually got towed to a gas station where Elder Cook was able to call his wife and let her know they were okay. He passed the phone to his little three-year-old, who said, "Hope ya know, we had a hard time."

I think if anyone were to ask me about this week, I'd respond with those same words: "Hope ya know, we had a hard time." We just feel beaten down. Even though I don't anticipate this challenge lasting forever, and I still have hope of a full and complete recovery for Aaron, we are in the trenches right now, and I honestly can't see the light (yet). 

It is more than just a physical exhaustion, at least for me. I am spiritually wiped out. Every day, practically every moment, has required me to exert more faith than I have. I am trying to replenish it as quickly as I am using it, but I am running on empty right now. There have been periods of violent weeping where I've lifted my voice to the heavens and yelled, "Hope ya know, I'm having a hard time!" 

Sometimes it feels like my faith literally cannot bear the weight of this trial. I am worried it will crumble and disintegrate with all of my questions that continually pummel it. 

But every time I think about going through this hard thing without my faith, it feels even more unbearable. So each day, I wake up, and I intentionally think the words, Today, I choose to have faith. It is a conscious decision. I choose to see anything good as evidence of the hand of God. I choose to believe that I am receiving heavenly help. I choose to look at this situation through an eternal lens. 

This is not some pleasant, childish game I'm playing where I'm looking at the world through rose-colored glasses. This is real work. It hurts. It leaves me feeling battered and drained. But every time I choose to arm myself with faith once again, I somehow rise triumphant. I wish it would last, but in the words of one of my friends, "The wrestle for my faith starts anew every morning." 

At this very moment, I'm feeling good. Mike just called and said, "I've never seen Aaron this perky in the hospital! He literally just asked me if I wanted to go for a walk around the pod! That's never happened!" That did my heart good. 

So we'll keep at it. And I hope next week I have some good news and some real plans to share with you.

Aaron (and Mike), 2009


Mar 21, 2021

Picture and sign by Clark

This week was blessedly normal, or at least it felt that way after several weeks of unplanned hospital stays and after-hour phone calls (one of our nurse practitioners said we'd earned our "frequent caller" card). I'm not going to question this reprieve; I'm just going to call it what it is: a miracle. 

The week began with Aaron getting his central line. They gave him platelets right before the surgery, but one bag only brought him up to 38 (he needed to be at 50 or more before they'd do it). So they gave him another bag, which only bumped him up to 52. I have seen one bag get him up to the 80's or 90's, so to only get up to 52 after two bags was disappointing.

However, even though those platelets were few in number, I guess they were mighty and strong because they have lasted all week. When Aaron had his appointment on Thursday, they were down to 22, but they decided not to transfuse him since he wasn't in the single digits and/or bleeding (the two things that necessitate a transfusion). I was pretty sure we'd be back in the next day, but those platelets lasted all weekend. (As I'm writing this, his gums juuuuuust started bleeding, so it looks like he might not make it all the way to Monday, but still, six days on the same platelets is better than we've seen in weeks.)

Anyway, back to the central line. The surgery went well, but man, it left him in a grumpy, unpleasant mood. I'm sure it was a combination of the anesthesia wearing off, the reality of having a line again, and the discomfort and pain from the procedure. They kept him at the hospital until Tuesday morning (he received two units of blood on Monday night) and then sent him home.

From my perspective, having a central line has been very nice. It is quick to draw labs, easy to get transfusions, and the multitude of bruises on his arms and hands are slowly disappearing. I thought I was going to have some PTSD when I had to flush his line again, but honestly, it came right back, just like riding a bike, and it was almost like I never stopped.

The slight wrench in this week came on Thursday morning, and it actually didn't involve Aaron. Clark woke up with a sore throat and a cough. No, I thought, no, no, no, no! We didn't want to deal with Covid on top of everything else. A Covid diagnosis would complicate appointments and treatments and probably delay transplant, not to mention the possible health risks if Aaron got sick. Mike took Clark to get tested, and we all breathed a sigh of relief when it came back negative.

However, Covid or not, we still don't want Aaron (or the rest of us) to get sick. So Clark has been quarantined in his bedroom for the weekend, and the rest of us have been wearing masks around the house. Hopefully that will be enough, but we'll see.

Clark has done remarkably well with the isolation. If you know him in real life, you know that he is a very social person and really needs physical and social interaction with people. He is not the type of person who likes alone time but wants to be with people all day, all of the time. But somehow, he has settled into this quiet space and found things to do (thank goodness for a grandma who brought over a 3-in-1 Lego set and for brothers who let him take apart and rebuild old Lego sets). 

Mike and I were marveling at this newfound ability to be alone. We were seeing a different side of Clark than we'd ever seen before. On Friday night, I said to him, "Clark, I'm sorry you've been so lonely." He replied, "Mom, you're never really alone." "Why's that?" I asked. "Because Jesus is always with you," he said.

I thought it was a cute thing to say at the time, but the more I've thought about it, the more real it has become. Of course Jesus is the reason why Clark has been able to do something that is far beyond his natural ability! I felt the importance of this knowledge, and I went back to him the next day, and I said, "You were right, Clark. Jesus has been with you while you've been in your room. You are never alone because of Jesus." 

Even with Clark's illness, this weekend has still felt like a gift. I will never take normal days for granted. 

Always Good

Mar 14, 2021

Last week, it was low platelets that kept landing Aaron in the hospital.

This week, it was fevers.

When you have low platelets, they give you a transfusion and send you on your way; when it's a fever, they run a bunch of cultures, load you up with antibiotics, and won't let you go home.

Which means we've spent a lot of time in the hospital this week. 

Here's a brief recap:

Sunday night: Aaron complained of being freezing, even though he was already under his covers in bed. Mike took his temperature. It was 100.8. They said we could wait an hour and then take it again. It was still 100.8, so they admitted him.

Monday: He got platelets. His fever seemed to be gone. All of his tests came back negative.

Tuesday afternoon: They discharged him, and he came back home.

Wednesday late afternoon: His gums started bleeding. Mike ran him over to the hospital before the clinic closed so he could get platelets. The team was able to see him, which cancelled our need for a Thursday appointment.

Thursday: He was home all day and all night!

Friday: He woke up with a headache. I took his temperature before giving him Tylenol. It was 100.9. I didn't give him Tylenol, waited an hour, took it again, it was under 100. By this time, his headache was gone too. Several hours later, he wasn't feeling well again, so Mike took his temperature, and it was 101.6. The doctors don't mess around with anything above 101, so he was admitted again. It was back down in the afternoon, but spiked to 103.6 in the late evening.

Saturday: Hospital all day but no fevers or bleeding.

Today: Still in the hospital, but no fevers so far, and all tests came back negative.

Tomorrow: Going into surgery to have his central line placed.

It is really common for kids with low or no neutrophils to get what are called "neutropenic fevers." These are simply a result of a lack of neutrophils with no other underlying causes. However, kids with low neutrophils are also at a much higher risk for infections, which is why the doctors take fevers so seriously and rule out everything else before discharging the patient. 

Aaron has had an ANC (neutrophil count) of zero for the past several weeks. On Tuesday, they gave him a dose of neupogen, which is a drug that helps stimulate white blood cells. Unfortunately, it didn't do anything for Aaron, which was another confirmation of his complete bone marrow failure.  

Although we don't have a scheduled date for the transplant yet, they are going to place his central line tomorrow. He has been getting blood and platelets and antibiotics so frequently that his arms and hands are covered with IV holes. The last couple of IVs have taken the IV team a long time of searching with their little light to even find a semi-acceptable spot for a new one. He is simply out of places.

Despite it being obvious that he needs a central line, it is still kind of a mental blow. There is something about getting that central line placed that makes this feel even more real than the blood counts and transfusions. This feels irreversible, like we are setting things in motion and heading down a one-way track, increasing speed until . . . transplant. 

I kind of feel silly even admitting this since everything we've already been doing has been with the end result of transplant in mind. Maybe you have to be me to see where I'm coming from. This is just a big step, and while I know it will be so nice to have right now and will be absolutely essential in a couple of weeks, I am still feeling it hard. (Remember this post when his central line was removed? I really thought that was a final goodbye.)

Today is March 14th, Pi(e) Day. This is one of those random holidays that Mike has always gone all out on--probably because it combines his love of math and food. Several years ago, we started a tradition of inviting the entire neighborhood over to our house for pie. Mike would take a couple of days off of work and churn out dozens of pies to be heartily consumed in the spring sunshine. 

In spite of a pandemic and a serious illness cancelling our festivities for two years in a row, Mike still showed up at the hospital at 8:30 this morning with cherry pie and ice cream (because what's better than pie? Pie for breakfast, of course). When I got home after we traded places at the hospital, I found a chicken pot pie in the fridge waiting to be baked for dinner, and a chocolate mousse pie ready for dessert. We are managing to hold onto our traditions even when life is not exactly feeling normal. This might seem like a good year to let them go, but I think they're helping our kids feel grounded (and baking has always been a kind of therapy for Mike, so it's a win-win). 

This morning as I was driving home from the hospital, I passed the student health center on the corner of Foothill and Mario Cappecchi. When I was pregnant with Aaron, I was a receptionist there for a short time. Although I have passed that building literally hundreds of times in the last year and a half, for some reason today I had a vivid flashback to little 23-year-old me. I saw her pulling charts, answering phones, scheduling appointments--all with a tiny wriggling Aaron inside of her. I remembered her unbridled excitement over this long-awaited pregnancy. 

And now, thirteen years later, here I am driving the same road, but instead of turning in at the health center, I am continuing farther north to Primary Children's. Aaron is no longer a helpless baby but a full-fledged adolescent who it taller than me. 

As I sat at the stoplight, it was as if the past and present converged. 23-year-old me at the receptionist's desk looked across the road at 36-year-old me in a minivan, and somehow, it was all okay. I can't explain it. I didn't feel regret, or even longing, for my unabashed naïveté. We're going to be okay. We are okay. 

I love Christmas songs, and I have long wished that Easter had the same kind of music tradition as Christmas. Wouldn't it be great if we could tune the radio to Easter classics during the month leading up to the actual day? Last year, I decided I would take matters into my own hands and create my own Easter playlist filled with songs of devotion about the Savior and His glorious sacrifice and resurrection. I did the same thing this year, so now I have two really great collections to rotate through. In a few years, maybe I will have as many beloved Easter songs as Christmas. Maybe.

My music search landed me a gem that I have become obsessed with. It is called "Always Good" by Andrew Peterson. I've been listening to it over and over, and each time I do, I think, Yes, this is what I believe. This is what I feel. This has been my experience with this hard thing. 

My three favorite lines are not close to each other in the song, but they fit together remarkably well:

"Somehow this sorrow is shaping my heart like it should.

This heartache is moving me closer than joy ever could.

Will You help us to trust Your intentions for us are still good?"

I don't know why heartache is sometimes more reliable than joy at bringing me closer to Jesus, and I really wish that wasn't the case because I don't like hurting. But here's the truth: There are distinct blessings that come from hard things. Others can't see those blessings as readily from their vantage point on the outside; they can only see the tragedy. But the blessings are there just the same. In spite of this hard thing, I really do believe that Jesus is always good and that every good thing comes from Him. 

But please, can we have a break from the hospital this week?

A Little of This and That in February

Mar 10, 2021

I was reading back through one of these monthly update posts from two years ago, and I have to admit, I was kind of longing to go back in time. We just seemed so carefree. 

But time marches on, and these are the activities that occupy our current reality:

Juicing . . . all the things. I impulsively bought a juicer the day after the doctors confirmed Aaron's relapse of aplastic anemia. I felt so helpless and like there wasn't anything I could do to change the situation. I guess one of the ways I coped with those feelings was by purchasing a juicer. I've read about the health benefits of juicing for several years, and I thought it definitely couldn't hurt to give it a try, and it might even help. I was really intimidated when it first arrived and thought I'd made a huge mistake, but I put a few stalks of celery through it, and then I was hooked. It was like magic--it somehow got juice out of something that looked like it shouldn't have any juice in it at all. Not only that, but it churned out the most beautiful, rich, jewel-toned colors I've ever seen. I honestly can't believe it's natural. I had read that red and purple fruits and vegetables were supposed to be especially beneficial to the health of the blood, so I've been doing a lot of beets, black grapes, purple cabbage, apples, and pomegranates. Aaron has been so nice to appease me and dutifully chugs down his glass every day.

Learning . . . to read. Ian was showing all of the signs of being ready to learn how to read, so I pulled out my trusty How to Teach Your Child to Read in 100 Easy Lessons (which is quite battered by this point) and began. So far, he has taken to it quickly. I know from past experience that we'll slow down considerably when we get about halfway through, and that's totally fine. We're just taking it one day at a time and enjoying each step. Watching the process unfold amazes me every time, and it feels like an absolute privilege.

Getting . . . the royal treatment at a BYU basketball game. I already wrote all of the details of our fun evening here, but it's worth a second mention because the memory of it is still giving us life. 

Wishing . . . stake conference would always be virtual. We had stake conference at the beginning of the month, and of course it was virtual due to the pandemic. But as we sat in our family room doing puzzles and Legos while listening to the talks, I thought, Why can't they do it virtually every time? It was so much more pleasant, and I felt like we got a lot more out of it than we usually do. It's one of the things I hope doesn't go away when Covid ends.

Participating . . . in a cool visual activity. Our stake had each teenager write one truth on a sign. Then they stuck those signs on the church lawn. It was really inspiring to walk past it and see all of those truths in one big group. Aaron and Mike did it (Mike is one of the youth leaders in our ward). The signs were due at the church when Aaron was still at the hospital. So I took them over myself. It was the afternoon when I found out his transplant had failed, and I was crying while trying to push the signs down into the frozen ground. Even though that isn't the most pleasant memory, the end result made me happy.

Switching . . . bedrooms. When we moved into this house, Maxwell and Clark shared a room, and Bradley and Ian shared another room. But Bradley was getting a little tired of his roommate who made messes every day, broke his creations, and wouldn't go to sleep at night. So we did a little room switcheroo, and it has turned out to be the best thing ever. Now Bradley and Maxwell are together, and Clark and Ian share the other room. It has been a much better fit. Bradley and Max like to listen to the same thing at night, as do Clark and Ian. And Clark doesn't really pay any attention to Ian's messes (which means their room is pretty much always a mess, even when it was cleaned up just thirty minutes before). Before the room switch, there was a weird rivalry going on between Bradley and Clark over who was Ian's favorite, but now that has pretty much disappeared. All in all, it was a good change.

Enjoying . . . a very lovely Valentine's Day. This year, Valentine's Day coincided with our ward's Fast Sunday (because we had stake conference on the first week of the month). At first I was disappointed because it meant we couldn't do our traditional breakfast. But then we decided to just push it back until lunch when we would be breaking our fast. As so often happens, breaking with tradition somehow made it even more enjoyable. We had sour dough French toast with buttermilk syrup, whipped cream, and berries, as well as sausage, bacon, hash browns, orange juice, and chocolate milk. The boys kept commenting, "This is the best meal I've ever eaten!" As usual, I gave each of the boys a new book, and Mike spoiled us all with filet mignon for dinner.

Sporting . . . some pretty good chipmunk cheeks. Aaron has been on steroids for several weeks. A couple of the side effects are an increased appetite and puffy cheeks. We're seeing both, and even though he is now being weaned off of them, his cheeks are still adorable.

Receiving . . . a good dumping of snow. Along with most of the rest of the country, we had a big snowstorm in the middle of the month that brought with it close to eighteen inches of snow. Up to that point, our winter had been fairly mild with snow coming in brief little bursts that would melt by the afternoon. But finally, we had some snowfall that felt legitimate. The boys pulled out all of their winter gear and suited up for some serious fun. No sledding this year because of Aaron's low platelets, but plenty of snow caves and snow angels. 

Taking . . . lots of unplanned trips to the hospital. That's just our reality right now. As much as we are trying to minimize our time in the hospital, it seems like something is always coming up that warrants some attention. We are so lucky to be so close to the hospital.

Inventing . . . intense face-offs between Battlebots. A few weeks ago, Mike introduced the boys to Battlebots (a competition where teams build their own robots and then have them fight each other). All of them really liked it, but Ian became absolutely obsessed. Every day, he goes into his own world of Battlebots and pits two toys against each other. These battles can last a solid half hour before he grows tired of them. 

Installing . . . a tv in the living room. I can't even believe I'm writing this--I have always been really opposed to having a tv in the main living space because I didn't want it to be a focal point. But when Mike got a pool table for the basement, it made that space less functional for family movie night (but the pool table has been used so often that I think it was probably worth it). So we decided to get a frame tv for upstairs. I like it because it looks like a picture in a frame when it is not being used as a tv, so it serves a dual purpose. At any rate, it has been nice to have it, even if it does go against my principles, haha.

Making . . . a few new items. This month, I sewed a pair of joggers and a blouse. The blouse was quite fun to make as it has a tie in the back, a ruffle across the front, and puffed (!) sleeves. I feel a little bit of Anne Shirley in me when I wear it: "Oh, Marilla! Look at the puffs!" I also knitted a cowl (which I'm a bit disappointed with) and a little dinosaur that Mike gave to one of his coworkers who just had a baby. And I alllllmost finished a sweater. Making continues to be one of the best kinds of therapy for me.

 Researching . . . brick for the fireplace. Our latest home project is the living room. We need to: remove the tile around the fireplace and replace it with brick, build a hearth, take out the spotlights and put in canned lighting, build bookshelves, hang pictures, buy a couple of chairs, and hang curtains. Unfortunately, any sort of construction has been put on hold while Aaron is sick, but that didn't stop Mike and me from going to a store to look at brick samples.

Taking . . . Max out for a little birthday lunch. A couple of days before Maxwell's birthday, Mike and I told him we would take him anywhere for lunch. We knew we could make such an offer because probably the most extravagant place he would want to go would be Chick-fil-a. And sure enough, that's the place he requested, even though we had to eat in the car since they still don't have their dining room open. Max is almost always a joy to be around, but especially when he has you one-on-one (or two-on-one as in this case). He comes up with the most interesting things to talk about, and he relished every bite of chicken sandwich and chicken nuggets (yes, he ordered both because it was for his birthday, and his appetite is hitting adolescence). Afterwards, we went to Handel's for ice cream, and he declared it the best lunch he'd ever had. 

That's a wrap on another month. We're getting the first hints of spring, and I am thrilled to see an end in sight for the cold weather.

Mental Fog

Mar 7, 2021

October 2020

A couple of days ago, a friend from the neighborhood stopped by. Our conversation went something like this:

Friend: How did Aaron's appointment go yesterday?

Me: Yesterday? Oh yes, yesterday was Thursday, right? Aaron did go to an appointment yesterday. Let me try to remember . . . yes, it went well . . . I think.

That pretty much sums up the way my brain is processing things lately--slowly, as if I'm always coming out of a fog. It is unlike me to lose my grasp on time; I am one who religiously tracks the passage of minutes and hours and days. 

But recently, the edges of everything have become a bit blurred. Moments fade into and out of each other. Unplanned trips to the hospital push other activities to the side. We've lost our anchors that help us identify the day.

Even our scheduled appointments have been little help in maintaining consistency this week. We were supposed to go to the hospital on Monday and Thursday, but we ended up going on Monday, Tuesday, Thursday, and Friday. So when my friend asked how Aaron's appointment was "yesterday," I had a moment of confusion because, yes, he had gone to the hospital the day before, but he was also there at that very moment, so what day was it anyway?

We have spent the week putting out fires. We resolve one crisis only to have another pop up. Aaron's loose tooth came out in the middle of the night on Tuesday. He had been wanting to pull it out because it was annoying him and making it hard to eat, but his doctors told him to leave it alone because they didn't want him to bleed. But somehow, even being careful, it still came out. Aaron had just received platelets that day, but he still bled most of the night.

On Thursday night, it was the new back molar that wouldn't stop bleeding. And on Friday, it was a bad headache that didn't go away until after a blood transfusion. 

Yesterday morning, Mike and I left the kids doing Saturday jobs, and we went on a long walk in the glorious spring sunshine. We ran into someone we knew, and when they asked how Aaron was, we said, "At this very moment, he's doing fine. But that could change before we even get home." It's that constant tension of never knowing what's coming next that is leaving us feeling exhausted.

But yesterday actually was a good day. From start to finish, it felt so luxuriously normal. Aaron felt good all day. The pain in his mouth even diminished slightly. Max and Bradley played with friends. Mike and Clark went out for ice cream cones. Aaron watched a basketball game. I cleaned my bedroom and seamed up a sweater I've been working on. Ian took a long nap. It just felt so good to be home. 

I have this heightened sense of gratitude. Even in the midst of all of these hard things, I am acutely aware of our blessings. I feel like I'm not even consciously doing it. The gratitude is just there, filling me up and gently softening the blows. I look around and I feel this lightness and hope that I know are not coming from me.  I believe this is a direct answer to the many prayers that have been offered on our behalf. 

As far as real news, I don't have much to offer. Although we feel this sense of urgency to get going with a transplant because we are in crisis mode so much of the time, we also know that it will be to Aaron's advantage to wait for all of the test results to come back so we can make the best possible decision. 

From an outsider's perspective, it might look like the ball isn't rolling or that our doctor's have let things come to a standstill, but that isn't the case at all. In fact, we have several parallel paths moving forward at this very moment to expedite the process as much as possible. I'm not sharing a lot of details, mostly because we haven't come to a firm decision yet, and it's hard to have people assume we're doing one thing just because it has been mentioned as a possibility. I'm sorry for the vagueness--I will definitely give you the full rundown of the plan when it is locked into place. For now, I can tell you that Maxwell had another blood draw on Friday for more tests (he has a strong aversion to needles, but corralled his fears), and we are still 3-4 weeks out from a transplant date.

This week I came across an old talk from President Hinckley that he gave in 1971. He quoted a mantra that a naval officer carried with him during all of his expeditions:

"I believe I am always divinely guided.

I believe I will always take the right road.

I believe God will always make a way where there is no way."

I have repeated these phrases over and over in my mind this week. They have become a type of meditation for me. I am using them to "fan the flame of my faith," as Elder Holland advised. This hope doesn't feel misplaced or naive. It is vibrant and alive. It pulses in me. I can't shake it; I don't want to shake it. I am going to continue to repeat these words and let them carry me forward through these challenging days. 

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