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

Oct 13, 2019

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

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

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

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

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

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

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

I remembered the day after Aaron was diagnosed. We were in the Cancer, Blood, and Transplant clinic. Aaron was getting a unit of platelets before going downstairs for a bone marrow biopsy. As we passed through the clinic's waiting room, I happened to glance at a young woman, and my brain instantly had a moment of recognition. She didn't just remind me of someone; I somehow knew her.
Down the elevator, through the hall, I kept thinking of her face, trying to figure out who she was. Then suddenly, I had it. She was my sister's first mission companion back in March. I had only seen her in photos, but still, I knew it was her. 

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

It was aplastic anemia. 

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

Stand Still: Engraftment!

Oct 9, 2019

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

"As soon as possible," we laughed.

"Well, how about today?"

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

It feels amazing.

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

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

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

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

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

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

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

It was time to stand still.

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

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


His WBC was 0.6. His ANC was 200.

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

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

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

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

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

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

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

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

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

So we took the invitation and ran.

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

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

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

A free man.

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

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

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

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

But this chapter is done.

And that feels like a major accomplishment.

Slow and Steady

Oct 6, 2019

Engraftment is on the horizon. We’re not there yet, but Aaron inches a little bit closer to it every day.

Aaron gets a complete blood count (CBC) drawn every morning at 4:00am. The nurse brings in the report around 7:00am and writes Aaron’s numbers up on the board. 

For the past several weeks, the most interesting numbers have been his platelet count and his hemoglobin because that’s where we were seeing the most activity (unfortunately, always in the downward direction). When those numbers dropped too low, he had to get a transfusion. 

His white blood count and absolute neutrophil count (ANC) have been steadily sitting around 0.1 and 0, respectively. The neutrophils are one of the types of white blood cells. And when it comes to engraftment, they are the star players.

Engraftment occurs when the ANC rises above 500 for two days in a row. And this week, right on schedule, we finally began to see some action on the neutrophil front. 

As follows:

Monday, September 30th (Day +14): WBC went up to 0.2; ANC remained at 0. We were thrilled with this number because the day before, our nurse, Dave, had told us that when the WBC goes up to 0.2, good things are coming.

Tuesday, October 1st, (Day +15): WBC stayed at 0.2; ANC remained at 0. Because the WBC held at 0.2, the doctors said it could be trusted as a true gain.

Wednesday, October 2nd (Day +16): WBC stayed at 0.2; ANC remained at 0. The nurses all assured me this was totally and completely normal.

Thursday, October 3rd (Day +17): WBC bumped up to 0.3; and the ANC finally made an appearance at 100. It was a day of rejoicing.

Friday, October 4th (Day +18): WBC went up to 0.4; ANC held steady at 100.

Saturday, October 5th (Day +19): WBC went up another notch to 0.5; ANC doubled to 200.

Today, October 6th (Day +20): WBC made a “jump” to 0.7; ANC stayed comfortable at 200.

If a graph is more your thing, don’t worry, I found this handy dandy visual on the board this morning.

While this is all very good, and progress is progress, it’s not the dramatic skyrocketing of cells I was expecting. We’ve had the good fortune to get to know three other aplastic anemia families, and all of them engrafted at a much more rapid rate than Aaron. It’s difficult not to compare, especially when those are our only real life experiences to relate to.

But the doctors and nurses have seen dozens of bone marrow transplants, and none of them act at all concerned. In the words of Dr. Boyer: “He is building a strong graft.” I like the sound of that.

And, contrary to our limited sample size, Dr. Harris told us that aplastic anemia kids usually engraft slower than leukemia kids because their bone marrow was so damaged before the transplant, so it takes some time to set down a new foundation.

I think one of the misleading things has been that, prior to the transplant, we were told that engraftment typically happens between Day +14 and Day +21. No one told us that engrafting after that is also totally normal and fine and that we shouldn’t become alarmed if it didn’t happen by Day +21 (which, at this point, it’s looking like it won’t).

But then today I had a couple of really good conversations with our nurse (Dave, again), which helped relieve all of my anxiety and reassured me that everything is going exactly as it should.

When I got to the hospital this morning, he said, “Wow, Aaron is just doing awesome!”

And I replied, “Yes, but do you think his counts should be going up a little faster?”

Dave said, “Not at all! Don’t you remember I told you last week that with the allogenic kids [meaning they received their new stem cells from a donor, and not themselves], I like to see engraftment happen between Days +21 and +25?”

As soon as he said that, I remembered that he had indeed said that, but last week I had been too focused on early engraftment to pay any attention.

The reason why he likes to see that slower increase in cells is because it gives the body time to adjust and accept the new activity and lowers the chances of rejection.

And then, a little bit later, Dave came into our room, took the paper with Aaron’s most recent lab results, and said, “And let me show you something else.” He pointed to the neutrophil number on the sheet. “We tend to focus all of our attention on the neutrophils, but I like to look at the monocytes, too. They are the other disease-fighting white blood cell, and they are usually a precursor to engraftment.”

He took a pen and underlined the monocyte numbers. Sure enough, they were steadily rising: 34, 42, 38, 48. I could have hugged him! It was one more proof that Aaron is headed in the right direction, and he will get there in his own time.

There have been other clues that indicate that Those Who Know anticipate a discharge in the near future. For example, they dropped off a booklet (two, actually) about how to get ready to go home after a bone marrow transplant. Yesterday, they switched Aaron's anti-rejection drug from IV to oral, and he is taking almost all of his other meds by mouth also. (And speaking of his meds, they finished weaning him off of his last anti-nausea medication this weekend, so he is currently not taking anything for nausea, and he is feeling great.) And today, I practiced doing a dressing and clave change on Chester the mannequin, so hopefully I'll be ready to take care of Aaron's central line when we go home.

So that's the update. The news isn't dramatic, but it is there, and it is enough.

I'll leave you with one more happy development. On Thursday, I was scrolling back through some photos of the last month. I was amazed to see the physical transformation that has taken place in Aaron since he first arrived at the hospital. When he was admitted on September 10th, his gums were swollen and inflamed. His eyes looked droopy and tired. He was smiling, but he looked sick.

Today, his hair is gone, but there are other changes as well. His gums have receded to their normal size and color. His eyes are bright and happy. He is energetic and, by all appearances, quite healthy.

If these are the results we're getting, I'm willing to wait as long as needed for those counts to roll on in. 

A Day in the Life

Oct 2, 2019

Our days have fallen into a type of regular rhythm. There are certain things that are very predictable, and that is somehow rather comforting. I have a feeling that when this is all behind us, I will want to remember what our days were like.

This is my best attempt to capture a typical day:

4:00 am: The nurse comes in to draw Aaron's blood for his daily counts. Aaron doesn't move a muscle (the nurses have been known to reassure each other that he isn't dead). If Mike is lucky, he sleeps through it too.

(Related side note: In general, Mike is on hospital duty at night while I am there during the day. We've found that this works best so that I can get the kids ready in the morning, and Mike can work from the hospital. On the weekends, we sometimes switch.)

8:00 am: Aaron is likely still asleep. The tech comes in to get Aaron's vitals and weight--usually quietly and gently, occasionally loudly and rudely.

8:30 am: Aaron wakes up. He orders breakfast and plays a game on the iPad while he waits for his food to arrive. Sometimes he can't wait and eats a bowl of cereal instead. He also does his first mouth care of the day.

(Related side note: Aaron has to swish a Biotene rinse and then suck on a Troge lozenge four times every day. It's like the laundry: as soon as he finishes one, there's another one to do. He doesn't like the taste of it, and it also takes forever to do because the Troge has to slowly dissolve and then he's not allowed to eat or drink anything for thirty minutes. To keep track of all of his responsibilities, we draw a pyramid of check boxes every day: 1 shower, 2x brushing teeth, 3x out of bed, and 4x doing mouth care. The next morning, we erase them all and start over.)

9:00 am: The BMT team comes in with the daily report. They usually say something like, "Well, things are pretty boring. But we like boring." If it's Dr. Harris, he'll make some crack at BYU. If it's Dr. Boyer, he'll want to play with Aaron's Legos. Sometimes, Aaron's blood counts have dropped enough to require a blood or platelet transfusion. They often talk to us about adjusting doses of various things (lately it's been all about his tacrolimus level, which is the immunosuppressive drug he's taking to avoid rejection). We had some good news on Monday when Aaron's white blood count bumped up from 0.1 to 0.2. They said that's usually the first indication that engraftment is getting close.

9:15 am: The nurse starts the tacro through Aaron's line. It takes two hours to complete.

9:30 am: I arrive at the hospital after dropping off the other boys at school. Mike and I exchange pleasantries and bring each other up to speed for the day. If the BMT team has already left, I get the report from Mike. I meet our nurse for the day (if we're lucky, we get Kathy--our favorite). At this point, I know most of the nurses--if not by name, at least by face.

10:00 am: I give Aaron the 5-minute warning for the iPad or Nintendo and maybe force him to do his mouth care if he hasn't already.  If it is Wednesday, he plays hospital bingo.

10:05 am: We work on Language Arts. We're using the Good and the Beautiful curriculum, and so far, I really like it. It usually takes him about 30-40 minutes to finish. If Mike happens to be with him, then they work on math instead.

10:45 am: If I'm not fast enough, Aaron is back on the iPad. Managing screen time is a beast. I always knew there was a reason why we don't have a video game system and why we also have very strict rules about the amount of screen time per week. But it's one of those things we just have to let slide for right now. It's an escape for Aaron, and frankly, I'm glad he has one.

11:30 am: The physical therapist arrives for a half hour of exercises. When we first arrived at the hospital, Aaron hated physical therapy. His easy going nature turned sullen, and he dramatically did the exercises with a scowl on his face before flopping onto the bed and telling me how much he hated PT. But after a few chats (and, I'm not ashamed to admit, a bribe), he changed his attitude around, and now he cheerfully participates. If it's a day when the physical therapist doesn't come, then he does his own exercises (usually pedaling on a little pedaler) while watching a show.

12:00 pm: I ask Aaron if he's ready for lunch. He says he's not hungry. Sometimes he eats a package of candy to appease me (we're all about the calories these days in any form). The nurse brings in his anti-nausea medication (he used to be on three different anti-nausea meds, given two hours apart; now he only takes Zofran every six hours). He does his mouth care again.

12:30 pm: Aaron gets a dose of cefepime (a prophylactic anti-bacterial medication) through his IV. Once that one is done, and if he promises to drink plenty of fluids, the nurse usually unhooks him from the IV pole for the rest of the afternoon.

1:00 pm: Aaron reads for twenty minutes (usually under protest). Or he starts a Lego project (his preferred activity). We have a lot of Lego creations decorating the room now.

2:00 pm: Sometimes art therapy or music therapy or the child life specialist stops by. Although this is a highlight for many kids at Primary's, it isn't for Aaron. He usually would prefer not to do anything with them, but when he does, he likes it.

2:30 pm: He finally eats lunch (sometimes just in the form of more unhealthy snacks).

3:00 pm: More screens; I knit. If the nurse comes in, I chat with her (or him). I haven't disliked any of the nurses, and I've loved almost all of them. To date, one of my favorite stories was about when one of the nurses had her car stolen, and when it was found a few days later, the only thing that had been stolen out of it was a bag that contained several boxes of peppermint Joe Joe's from Trader Joe's. She was furious.

3:30 pm: If it's Tuesday, Aaron plays hospital trivia. It's a favorite of his, and he has yet to lose to the contestant.

4:00 pm: If we're lucky, we get a visitor (or two). We've had friends from school, people from our neighborhood, cousins, aunts and uncles, and grandparents, This is the best way to pass the time. Aaron is always up for a game or two.

6:00 pm: Aaron is back on screens. I'm knitting again. He does his mouth care again. Are you catching the pattern here?

7:00 pm: The nurses change shifts. Mike and I change shifts too. Sometimes Aaron gets another visitor.

8:00 pm: Aaron eats dinner; he takes a shower; he does his mouth care one last time. The sheets on his bed get changed. He climbs into his nice, clean bed all nice and clean himself. He watches a few episodes of Studio C (one of the few things he actually likes to watch in the hospital).

9:00 pm: The nurse starts his second dose of tacrolimus. He usually falls asleep before it is through running.

12:00 am: The tech comes in to get his last set of vitals.

And then we start it all over again.

Patiently Waiting

Sep 29, 2019

Tonight, just out of the blue, Bradley said, "You know what would be fun? If Aaron didn't have aplastic anemia and no one else did either."

We are approaching three weeks in the hospital, and I think we're all feeling it, but Aaron most of all. While Mike and I have the liberty to come and go, or at the very least, walk down the hall to stretch our legs, Aaron has literally not stepped even a foot outside his room since it shut behind him twenty days ago.

The walls are closing in, possibly because we keep adding things to them in an attempt to liven up the space.

Last week, one of Aaron's cousins visited him. After he was there for about fifteen minutes, he looked around and observed, "This room feels smaller than I was expecting."

Then, a few minutes later, "How much longer do you have to be here, Aaron?"

And finally, a few minutes after that, with a note of desperation now in his words, "I've only been here an hour, and I'm ready to get out of here!"

Contrary to feeling offended, Aaron thought it was hilarious . . . probably because it summed up his reality so well.

This past week, I looked at the calendar and started to do some mental calculations. The doctors had told us engraftment usually happens somewhere between Day +14 and Day +21. Following engraftment, they said patients typically have to stay at the hospital 3 to 7 more days.

Aaron has been doing so well that I thought, What if he engrafts on Day +14 (tomorrow) and then only has to stay three more days (Day +17). That means he could be home as early as Thursday!!

If you've talked to me in the last few days, I might have said something like, "Aaron might be home by next weekend!"

But today during their morning rounds, the BMT team inserted a little dose of reality into my optimism. In my mind, early engraftment meant better: Maxwell gave him a lot of cells that got the ball rolling sooner, right?

Well, maybe not so much. Today they told us that if Aaron engrafts too quickly, it could actually be a red flag that something is wrong. For example, it might mean that Aaron's own cells started to produce, and then he would be at risk for Graft-versus-Host disease (where the donor's cells start attacking the recipient's cells).

Our doctor then put in his own guess for engraftment right on Day +21 and then said he would expect Aaron to stay in the hospital another week beyond that, meaning we would still have another two full weeks in the hospital.

Maybe he could just sense that we were getting our hopes up, and he didn't want us to be disappointed at the end of the week. Or maybe that's how he really thinks things will go for Aaron. I don't know. But I guess I feel like I need to retract some of my optimism from the last few days.

This is reminding me of what it felt like to be approaching my due date when I was pregnant. Anytime anyone saw me, they asked how I was feeling and if I was having any contractions and whether I thought I was going to have the baby soon. I dreaded having to make a phone call knowing that the person on the other end would probably answer by saying something like, "Are you on your way to the hospital?"

Just like that was completely beyond my control, so is this. So we're pushing our expectations back down into the normal range. I'm going to stop day dreaming about an early homecoming and just give Aaron the time and space to let his body do what it's already been doing so well. It's not like I have any say in the matter anyway, and it could really put a damper on hospital morale if we start thinking about home too soon.

If it ends up happening this week, it will be a happy surprise, and if not, we'll just keep plugging along as usual. No harm done.

At least Aaron is keeping his sense of humor. This afternoon, I was asking him questions from a little question-and-answer game. One of them was, "If you could skip a day of school, what would you do?"

He got a little smirk on his face and said, "I'd go to the hospital."

The Way Things Are

Sep 25, 2019

Ian no longer wails at the door when I leave. The van practically drives itself to the hospital in the mornings. Aaron can sleep through blood draws, transfusions, and weight checks.

This is the way things are. Is it weird that this feels normal now?

Taking a long view, everything is going really well. Aaron has minimal nausea (meaning, he feels slightly sick most of the time but only throws up about every other day). He has no mouth sores. He is eating and drinking a fairly typical amount. His energy level is good.

His blood counts remain about the same, which is what the doctors expect at this point. He is still needing platelet transfusions about every six days. The main thing they are watching right now is his liver function, which is elevated due to the methotrexate he has been getting post-transplant. They are adjusting the doses as needed to hopefully keep his liver numbers in a safe range.

He hasn't had any infections or complications in the days since the transplant. A few days ago, his doctor told me that Aaron is doing the best out of all his patients on the floor right now. The nurses continue to be amazed with how well he is feeling in spite of everything that is (or is not) in his body. It's not unusual to hear one of them say some variation of, "He's Day +9, and he looks like that?!"

Overall, we are feeling so grateful. And we're also eagerly anticipating next week when we'll hopefully start to see some action.

A couple of nights ago, I got this text from Mike: "Aaron just noticed that as he ran his fingers through his hair, a bunch started falling out."

And I must admit that even though we knew this was coming (and that it would probably be sometime this week), my heart kind of pinched up when I read those words.

I watched his progress the next day. It wasn't extreme--just a hair here and there. But by the end of the day, it was all over his sheets and pillows and landing on his cheeks. His hair is very thick, so it wasn't at all noticeable in his appearance, but he was adamant that he did not want to sport the patchy look for even a day.

So last night, we decided to take it all off.

Ironically, it was Clark that had the hardest time with it. He was at the hospital, getting a little one on one time with Aaron, and when we suggested it, he freaked out. I don't know if he thought it was going to hurt Aaron or what, but he started screaming and crying and begging us not to do it. The nurse and I laughed and agreed that, to a casual observer, it sounded more like Clark was the patient and not Aaron.

But Aaron was all psyched up and ready for it, so we couldn't delay it. We simply stuck Clark in a corner with the iPad and went ahead.

It ended up being quite entertaining. Mike shaved it off in stages, and Aaron got to try out a lot of hairdos he might never get the chance to again.

When there was only a tuft of hair left, Mike combed it down, and Aaron laughed harder than I've heard him in days. He thought it was so funny. (And in spite of his protests, I guess we must have sounded like we were having a pretty good time because Clark couldn't resist taking a few peeks.)

After it was all off, Aaron headed for the shower, and then Mike said, "Should I shave off my hair, too?" It's actually been a look he's been wanting to try for a couple of years, and this seemed like the golden opportunity. The nurses were all for it, and before I could really decide if I was okay with it or not, Mike was past the point of no return.

He sat on the couch looking satisfied (and bald) as Aaron came out of the bathroom. And Aaron just gave a faint smile, shook his head, and sighed, "Oh, Dad."

But I think they look pretty good together, don't you?

What a Hero Looks Like

Sep 21, 2019

When we told Maxwell that he was Aaron’s bone marrow match, I wanted him to be overjoyed at the prospect of saving his brother’s life. I hoped he would recognize it as an honor and privilege. 

Instead, he was severely disappointed. He wanted the match to be one of his other brothers, not him. He gave Aaron a hug that night but only because we told him to.

When we took him to the hospital the next day, he was snarky and rude. He made it quite clear that this was not his choice.

His most common response to, “Max! That’s so great that you’re a match for Aaron” was an unenthusiastic, “Meh.” 

It probably shouldn’t have been so surprising to me. He is only nine, after all. He couldn’t possibly grasp the full scope of it all or have the maturity of seeing beyond his own fear to the hope of a bright future. In retrospect, I probably should have granted him a little more sympathy.

But as the days passed, he began to rise to the challenge of his own volition. He started to own it.

One afternoon, he came home from school with an invitation to a birthday party. He handed it to me and said, “Don’t worry, Mom. Before I took it, I made sure it wasn’t on Monday. I told him I was going to be busy then.”

On Saturday, two days before the scheduled transplant, Maxwell woke up with a runny nose. I panicked. I knew they wouldn’t be able to go forward with the transplant if it turned into a full blown cold. And when I asked the nurse about it, she confirmed my worst fears: if they had to hold off the transplant, Aaron would have to go through the whole chemo/immunotherapy regimen again.

We did everything we could think of: We loaded Max up with Vitamin C. Our pediatrician recommended taking him off dairy and gluten (and I cut out sugar as well). Max felt like this was a huge sacrifice (even as I reminded him that Aaron was being denied many foods for months, not just two days). We bought him some soy milk to tide him over, and as he poured himself a big glass of it, he said, “Silk is a lifesaver. Like, I literally would not be here without it.”

We turned to our faith as well. Mike and my brother gave Max a blessing, we fasted, and our hearts were drawn out in prayer almost constantly.

When Maxwell woke up on Monday morning, all traces of the cold were miraculously gone. Max had gone to bed in high spirits, and those continued on our drive to the hospital and as we got checked in to same-day surgery (at 5:45 am).

Once we got into the pre-op room, they asked Max to wipe down each body part so that he would be squeaky clean before going back into surgery. Aaron had had to do the same thing the week before when he got his central line placed, but it was far more entertaining with Max. He stuck out his arms and legs with pizzazz and had both Mike and me laughing with his funny commentary. 

Because he was one of the first surgeries of the day, they hadn’t had time to get behind schedule. The anesthesiologist wheeled Maxwell down the hall while having us sign consent forms at the same time. We gave him a hug, and he was smiling as he rode through the double doors.

In my head, I pictured him recovering for a few hours in post-op and then coming up to Aaron’s room around noon. I thought they’d eat lunch together and play some video games. We would read a couple of chapters from Harry Potter (we’re on the fifth book this fall) before the BMT team came in at 4:00 to do the transplant. Max and Aaron would sit side by side on the bed together, sharing the tender moment together.

But as I already wrote, that is not how it all went down.

Maxwell came out of the anesthesia just fine. He was mellow and sweet. His vitals all looked great, and the nurse wheeled him into the recovery room.

He fell asleep for another hour or so, and when he woke up, he was ready to drink some Gatorade and play on the iPad. He burned through several packs of goldfish and was his usual chatty self. 

The nurse gave him some heavy meds for pain and said he would need to be observed for at least an hour following. I waited most of the hour, but towards the end of it, and anxious to get him up to Aaron, I asked him if he was ready to try getting out of bed (I knew they wouldn’t discharge him until he was up and had used the bathroom).  We moved him to a chair, but he immediately started to feel, in his words, “woozy.” He was extremely hot (even though the temperature in the recovery room  was as cold as the refrigerated section at Costco). I helped him get back into bed and stood there with an ice pack against his back.

Thus began the pattern for the next four hours. He would rest, sometimes even take a nap, before he started to eat and drink and act normal again. Then we would try to get him out of bed only to have the same thing happen all over again.

The BMT team said they would push back the transplant in the hopes that Max would be able to join Aaron. I thought we had a good chance of it when, around 4:00, he was fully sitting up in bed and feeling just fine. But once we moved him to the wheelchair, he got that dizzy feeling again. He felt hot and yelled, “Can’t you turn down the temperature?!” He begged to get back in bed and then complained that the headboard was much too low. He started to feel more and more nauseous until he threw up. I called the nurse, and she said she’d get some Zofran started in his IV. Maxwell held out his arm in a pitiful gesture of surrender.

The team came in to check on him, and it was obvious from his moaning and agitation that he wasn’t going anywhere soon. It didn’t make sense to put off the transplant any longer just for ceremony.

Mike’s dad came down to the OR to be with Maxwell, and I went up to Aaron’s room for the transplant.

It was emotionally hard for me to be celebrating with Aaron and family and the team of doctors and nurses while knowing that the person who had made the celebration possible was two floors below us feeling absolutely miserable.

As the team looked over the paperwork before beginning the transplant, the nurse practitioner said, "Wow, your brother was very generous." They said they hoped to get two million cells per kilogram. Maxwell had given them six million. (Since then, we have all complimented him on his "juicy cells.")

We sang "Happy BMT Birthday" to Aaron; he smiled for a couple of photos; and then he curled up against his pillows and was completely out before the nurse even got things hooked up.

But as I watched those bright red cells make their steady progress down the tube to Aaron's body, it was a beautiful sight to me. I'm so glad I had the presence of mind to really watch it and capture it in my memory because it's something I won't ever forget.

Meanwhile, down in post-op, things had been happening. The nurse practitioner greeted me with Maxwell's discharge papers. They had somehow coaxed Max out of bed again, and he had made it into the bathroom, which meant that every box had been checked off and they were kicking him out.

Usually I'm of the opinion that the hospital is over-protective and errs on the side of keeping their patients too long just to make sure that everything is okay. But this time, I felt the opposite. Even though Max's face was creased in discomfort, even though he had to be strapped into the wheelchair so he wouldn't collapse, even though he was holding a barf bag close to his mouth, they were eager to discharge him.

"Come on, let's go see your brother," they said. They wheeled him into Aaron's room, but it was not a hero's welcome. The party had disbanded, the room was quiet, and the recipient was still fast asleep. All that was left of Maxwell's cells was a bag that had been drained dry.

But Max didn't notice. He fell onto the couch and didn't move until it was time for the equally traumatic drive home.

In the days that have followed, I have thought a lot about Maxwell's sacrifice. While he was down with Max in the OR, my father-in-law asked him, "Max, did you ever think you would save your brother's life?"

To which Max responded, "No. And I definitely never thought it would involve so much throwing up. I thought it would be more of a heroic act, like jumping into a stream."

Like Max, sometimes we have a fixed idea of what a hero looks like:

A daring interception.

A noble act.

A crowning victory.

For their story, I thought it would look like this:

But instead it looked like this:

At first I was so disappointed that this was the only photo I got of Aaron and Maxwell together on this day that was supposed to be so special for both of them.

But now I love it. I think it will forever represent what being a hero looks like for me. Max did what needed to be done. He was scared and nervous, and he did it anyway. He jumped into the proverbial stream with both feet, and that one act set everything into motion. He dealt with the consequences as they came--the nausea and hot flashes and pain--because he had already decided to do it.

That is a hero for me. Someone who makes the decision in the first place.

Oh, and P.S., the next day Max came to the hospital, and we finally got our day of fun and celebration, exactly as we'd planned it.

And I even finally got that photo.

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