Endure it Well

For the last four weeks, my heart has given a little pang each time I set the table and only needed five plates instead of seven. I have felt those two missing plates very acutely. The table has felt empty and dinner has felt more like a chore than a ritual. 

But on Friday night, I counted out seven plates and placed them around the the table, all in their correct places, the gaping holes filled up once more. That's because Aaron came home! 

At the beginning of the week, his doctors said, "Our goal is to have you out of here by Friday." But when his ANC dropped back down to 200 on Tuesday after a small increase on Monday, I didn't want to get my hopes up.

However, it regained its upward trend on Wednesday with 400, and then finally hit the magic number of 500 on Thursday (Day +20).    

Knowing that home was on the horizon made all of us happy . . . until the endocrinologist came in. She said that Aaron's antibody tests had come back, and two of them were positive for Type 1 diabetes. The news wasn't exactly a surprise since we were already aware that something was off with his blood sugar, but as she started piling on the information ("we need to start carb counting today," "come back in two weeks for a diabetes class," "track his numbers on this sheet and email them to us," "give insulin according to this chart"), I felt like I was in a daze. Even though we had already been doing multiple glucose checks every day and giving Aaron insulin shots, it had always been with the understanding that this was probably medication-induced and therefore temporary. But I've always heard that there is no cure for Type 1 diabetes, so when she said those words, it felt like there was no way to retract or undo them.

I didn't have a good enough grip on what she was saying to actually ask any intelligent questions, but there were enough "ifs" and "we'll sees" thrown around that I said something like, "So is there a chance that he doesn't actually have Type 1 diabetes?" And she responded, "With those antibody markers, it's pretty certain, but I'd hate to tell you he has it and then have to change that." I reassured her that this would be good news, not bad.

The two teams (endocrinology and bone marrow transplant) have different views about this diagnosis. From an endocrinology standpoint, Aaron has Type 1 diabetes. They are treating him as if he has it. But from a BMT perspective, they are more open to other possibilities. They have not seen anything quite like this before, and consequently, they don't have answers. But one thing they do know is that things can be quite unpredictable after a bone marrow transplant and even though this is not one of the "normal" things they frequently see, it is almost certainly related to everything that has been going on over the last two years. Their approach for right now is, "Wait and see." 

So that is what we're doing. We did all of the diabetes training before we left the hospital. We watched videos and took quizzes and consulted with doctors and nurses and practiced doing glucose checks and gave insulin and read labels and added carbs and learned what to do in case of an emergency. Immediately after the endocrinologist left, Aaron and I both started to cry independent of each other. It felt like this latest thing might just be the thing that broke us.

But then we started doing all of the things I just mentioned, and there is something about action that just feels so good. Instead of letting the waves drown us, we started swimming, and we discovered that with each stroke, we felt just a little bit better. In fact, by the time the dietician came in on Friday, I was saying things like, "It feels time consuming and overwhelming right now, but I know that after a few weeks, it will have become second nature, just like everything else." These were things I never could have imagined myself saying with such confidence 24 hours earlier. 

Before Aaron was admitted to the hospital for his transplant, I asked my sister-in-law, Kirsten, if she would put some words on a poster for us. They came from a verse in Doctrine and Covenants 121: "And then, if thou endure it well, God shall exalt thee on high; thou shalt triumph over all they foes." I loved the phrase, endure it well. Kirsten put those words above an abstract rendition of our beloved Mt. Olympus. 

Maybe you've noticed this poster in some of the photos I've shared over the last four weeks. It was a constant but subtle reminder of how we wanted to act. To endure something well was so much more than just enduring (although sometimes simply enduring had to be good enough). I never overtly reminded Aaron of our goal, preferring to let the poster speak for itself, which it did. But I saw evidence over and over again that he was choosing to "endure it well" instead of just "endure." 

Perhaps this was no more obvious than when he faced this diabetes maybe-diagnosis head on. After his initial tears, he rose to the challenge. Without any prompting from me, he asked to check his own glucose--poking himself with a lancet, squeezing out a drop of blood and nudging it onto the testing strip. He took the insulin needle and plunged it into his stomach. He paid attention to what he was eating, often figuring out how many carbs before I had a chance to. He absorbed and understood an impressive amount of knowledge in a very short time. Watching him consciously choose to "endure it well" has been an inspiration to me and helped me continue forward as well.

I am always on the lookout for tender mercies because they let me know that God is not abandoning us or expecting us to face this challenge alone. One of these tender mercies came in the form of our nurse on Thursday. We actually had two nurses that day: Joanna and Amy, who was transferring to the cancer/transplant unit from the medical unit. Normally when a new nurse is being trained, they are noticeably less confident as they try to learn the new ropes. 

But in this particular case, Amy had the exact skills that we needed--and they were skills that didn't seem like they would necessarily be required on the cancer/transplant unit. Because Amy had been on the medical unit, she had worked with many patients facing a Type 1 diabetes diagnosis. She knew exactly how to teach us. She was able to answer all of my questions. She made the scary seem totally manageable. Joanna, who was supposed to be the trainer, deferred to Amy on more than one occasion: "This is Amy's field of expertise. I'll let her take over." 

I am getting emotional just typing these words. What a gift this was to feel so secure and supported on a day where we could have felt very frightened and overwhelmed. No one knew that we were going to get a Type 1 diagnosis on that day, and yet we got the one nurse who was prepared with the information and skills that would ease our anxious hearts. Isn't God so good?

And then, as it turned out, just when I was feeling ready to tackle this whole "dosing for carbs" thing, we took his blood sugar before lunch on Thursday, and it was only 94. The endocrinologist told us to hold off on the insulin. That was the lowest number we had seen in over two weeks. They told us we should practice counting carbs, but at the moment, they didn't want us to give him insulin for them.

Ever since then, his glucose has been pretty stable. He is getting long-acting insulin every night before bed, but that seems to be all he needs to keep his numbers in a safe range. We're not quite sure what to make of it. The endocrinologists seem to think it might be the "honeymoon period" they often see in newly-diagnosed diabetics. The transplant doctors think things might be settling down and resuming their normal function. Again, we will wait and see.

And now, back to Friday. Aaron's ANC was still 500, and so the team said they would discharge him. A bunch of things needed to happen before then: blood and platelet transfusions, pentamidine infusion, medications to sort out, and more diabetes training.

Aaron was like a caged lion. Everything was taking too long. He knows too well how discharges often go. There always seems to be one more person who needs to sign off on something or needs to talk to us. In this case, we encountered a couple of hurdles with medications. One of them was for mycophenolate, an anti-rejection drug that, due to insurance issues, had to come from a pharmacy in Indiana. The other was for neupogen, which Aaron is still getting until his ANC reaches 2000. This was supposed to come in the form of daily shots that we could give to Aaron at home, but we couldn't get them in time because of snags with the insurance. They said Aaron would have to come in for shots on Saturday and Sunday, and we agreed without question. Anything, if only he could come home.

Aaron made it very clear that he was leaving when the pentamidine was done--with or without us. We did our very best to get everything done while the infusions were running, but we didn't quite make it in time. Mike was still trucking things out to the car via a wheelchair (or "transport device," as the nurses referred to it). And then he got held up at the pharmacy as he sorted out sixteen prescriptions, some of them duplicates and not actually needed. Luckily, by that time Aaron was assured that the discharge was actually happening, so he cut us some slack and waited patiently.

But finally, the room was empty and we had the discharge papers in hand. Before exiting the unit, we took around a basket of chocolates to all of the nurses and staff. It gave us an opportunity to say goodbye and thank you. Really, those nurses have our whole hearts.

Aaron had a noticeable bounce in his step as pushed his way through the doors. We walked out into the sunshine. The air was hot and dry. Contrary to what the calendar said, the seasons had changed from spring to summer during our time in the hospital. 

As we came around the bend in the road and saw our house, there were welcome home banners on the front windows, church friends across the street, and brothers jumping energetically in the front yard. I honked the horn in celebration, and the boys mauled Aaron as he exited the car. They couldn't get enough of him. It was the sweetest reunion. 

We still have a long way to go, but we are happily entering a new phase in this journey. Aaron's relapse and all of the hospital stays that came with it made up phase one; the conditioning, bone marrow transplant, and engraftment encompassed phase two; and now we're in phase three, which will consist of isolating as much as possible, keeping a close eye on counts and any signs of GVHD, and hopefully moving closer to full recovery.

Even though we're not done yet, we are still breathing a big sigh of relief. We feel like we can do anything, now that we're together again.