Day 0

Sep 16, 2019

At about 4:45 this afternoon, Maxwell's stem cells traveled down the IV line and entered Aaron's body.

It was a bit anti-climatic because when it happened, Aaron was fast asleep and Maxwell was throwing up in the OR. 

It wasn't what we planned.

But as I was telling a disappointed Aaron tonight, the important things got done: the doctors harvested Maxwell's bone marrow, and it was rich in stem cells. Aaron received those cells this afternoon. 

Those are the important things.

The other things, even though we were looking forward to them and they were going to make the day feel special, are just trivial in comparison. 

Maybe sometime I'll give the play by play of the whole day. But maybe I won't. I haven't decided yet. 

I might just leave it at this: we had a goal today, and we accomplished that goal. 

Now grow, baby cells, grow!   


Cheerfully Do All Things

Sep 12, 2019

We are closing out Day -4.

A brief recap so far:

On Tuesday (Day -6), Aaron got his central line placed. He has an external line (a Broviac), which means the tubing hangs outside of his body. His surgery was scheduled for 2:00 in the afternoon, but they were running about two hours behind, so it was a long day of waiting (and hunger) for him.

On Wednesday (Day -5), Aaron had his first dose of chemo (cyclophosphamide, or cytoxan). It was undramatic. He built a Lego set and sucked on ice and when the infusion was nearly finished, he asked if it had started yet.

Today (Day -4), he got his second dose of chemo and his first dose of anti-thymocyte globulin (ATG--an immunosuppresant drug). The ATG infusion is very long (8 hours). We had one little bump about two hours into it when Aaron suddenly started shaking uncontrollably. Luckily, the nurse acted on it quickly, and it had fully subsided within an hour. He had a little bit of nausea this evening as well, but that's been about the extent of the bad stuff.

In addition to the cytoxan and ATG, Aaron is also on three anti-nausea meds and several other preventative medications. He is literally being pumped full of things. (Last night, Maxwell said, "I can just imagine the look on Aaron's face when he gets to come home from the hospital, and he is loosed from all his safety restraints." It was such a Max way of putting it, but I agree that I think Aaron will be overjoyed when he is no longer tethered to an IV pole all day.)

I am convinced that Aaron's good response to all the drugs so far is a direct result of the hundreds of prayers being sent heavenward on his behalf. Sometimes people, almost apologetically, tell me, "I know it isn't much, but I'm praying for Aaron." To which I always respond, "Those prayers are the very things buoying us up and getting us through." We are being blessed day and night because of those prayers.

A couple of months ago, I came across a scripture that has since become one of my very favorites:
"Let us cheerfully do all things that lie in our power; and then may we stand still, with the utmost assurance, to see the salvation of God, and for his arm to be revealed."
--Doctrine and Covenants 123:17 
After Aaron was diagnosed, I showed it to him and we decided to adopt it as our mantra during this health challenge. We love it because it places a certain amount of responsibility on us ("cheerfully do all things that lie in our power"), but after we've done our part, we get to stand still and see God do His mighty work.

With that in mind, we decided that we would try our best to follow all instructions from the doctors and nurses with exactness.

I can tell you that even just three days into the treatment, this isn't easy.

It means that if the nurse says to do oral care four times a day, Aaron has to do it, even if he doesn't like it (spoiler: he doesn't).

It means that if Grandpa brings a big box of beautiful pastries, but the nurse says they don't comply with Aaron's low microbial diet, he can't eat them.

These things are hard. And unfortunately, most of the effort is required by Aaron, not me. I wish I could do it for him, but I am merely the cheerleader on the side, reminding and encouraging and supporting, but ultimately he has to choose for himself.

This morning his nurse said to me, "I cannot believe this kid. My hardest patients (by far) are always the 10-18 year-old boys, but not him. We need to have him give a workshop to the other kids on how to be a good patient. If you ever decide to give him up for adoption, I'll fill out the paperwork for myself immediately."

This is not to imply that he has been unfailingly optimistic. He has not. His mood is volatile. Little things trigger a downward turn. Those are the times that make me hurt for him. I won't go into specifics because these are not my experiences to share, but all of the good moments we've had this week have been balanced out with ones that are decidedly more bitter.

But we are trying. We have our scripture on the wall (my dear friend, Sarah, turned it into an awesome poster for us); we keep a daily list of blessings; we take frequent breaks from screens (Legos have been the activity of choice for sure); we get to know the nurses and staff; we laugh and joke; we look for the good.

In short, we are trying to cheerfully do all things that lie in our power. (But with only three days checked off, we still have a long way to go.)

And every day, we have the opportunity to stand still and see what more God can do. And so far, He has done a lot.

A Few Random (But Perhaps Interesting) Facts

Sep 9, 2019

As one of the doctors was leaving Aaron's room a few weeks ago, he turned back, gave a wry smile, and said, "Enjoy your time at Primary Children's Hotel and Spa."

We thought it was funny at the time. But now Aaron has his own room reserved; he has activities booked; and tomorrow will be the first day of his extended stay at this magical place where miracles happen. 

Today Mike asked Aaron what he wanted for his "last meal." That sounded a little dismal to me, but that's kind of been the lens through which we've been looking at everything lately. There have been a lot of lasts (for now). Last day of school. Last day at church. Last walk around the block. Last trip to Menchie's. Last turn cleaning up the kitchen. Last time practicing the piano. Last sandwich from Jimmy John's (his favorite). Last family party. Last night in his own bed.

Over the weekend, we had several big rainstorms. The temperature dropped by about twenty degrees, and suddenly it felt like fall. Yesterday we sat on the porch, and I told Aaron to breathe it in--that hint in the air that can't be mistaken for anything except the change in the seasons. It's strange to think that the next time he's outside, he might need a jacket, or even a coat.

But even though that might all sound a little melancholy, I would say that the general feeling over here tonight is of excitement and anticipation. Up to this point, it's all been prep work. 

But tomorrow? It's go time.

In honor of the day, here are a few facts we've learned along the way that you might find interesting:

1. Maxwell was the only match for Aaron, but the other three boys all matched each other. So we're safe if this ever happens to us again (which is where my brain immediately went, obviously). 

2. Aaron and Maxwell have different blood types (A+ and B+, respectively). You might wonder, as I did, how they can have different blood types but still be a perfect match for each other. It's because the actual matching happens with the ten major human leukocyte antigens (HLA).  HLAs are proteins on the surface of all the cells in your body. They are what give the signal to your immune system not to attack. So when Maxwell's stem cells enter Aaron's body, they will match the HLAs found on Aaron's other cells and feel right at home. 

3. After the transplant, Maxwell's cells will gradually take over Aaron's marrow until Aaron's blood will eventually be 100% Maxwell's blood. So Aaron's blood type will permanently change to B+. If Aaron ever needs to have a DNA test in the future, he will have to do a cheek swab instead of a blood sample because his blood will identify him as Maxwell, not Aaron. (This also means that if Aaron ever robs a bank and leaves blood all over the scene, Maxwell could get framed for the crime.)

4. Related to Number #3, if Maxwell was a girl, then a DNA sample of Aaron's new blood would identify him as female.

5. Red blood cells have a life span of about 120 days. Platelets have a life span of about 6 days. Consequently, Aaron has only had two blood transfusions but eight platelet transfusions. (Nothing is more discouraging than seeing his platelets spike to 82 only to plummet back down to 5 in less than a week.)

6. Chemotherapy will completely wipe out Aaron's immune system, including all of his immunizations, which means he will have to get all of them over again. And he won't be able to get the live virus vaccines (varicella and MMR) until two years post-transplant.

7. Maxwell's marrow will be harvested from his hip bone with a long needle. But it will be put into  Aaron through his veins. Somehow those little baby cells know where to go. 

8. Aaron will be on a restricted diet for a few months following the transplant wherein he will be allowed to eat twinkies but not blueberries. This strikes me as both funny and wrong. He also won't be able to have soft-serve ice cream or fountain drinks because the sanitation of such dispensers can't be trusted.

9. Out of all the tests Aaron had to do in preparation for the transplant, the neuropsyche evaluation was actually the most fun. Even though it was three hours long, the psychologist was so nice, and he basically signed off Aaron on his sixth grade year, which relieved the pressure on both of us.

10. While it is true that Aaron won't be able to be around large groups of people during his months of isolation, he will be allowed to interact with healthy visitors. So we look forward to seeing many of you (hint, hint)!

In attempting to explain some of the more technical things in this post, I realized that even though I feel like I've been taking an immersive class in medical terminology, my understanding of it is still woefully lacking. It is at times like these that I like to remind myself of Mary Poppins' sage advice: "We're on the brink of an adventure, children! Don't spoil it with too many questions!" 

Here's to the adventure!

A Little of This and That in August

Sep 8, 2019

Even though our life seems like it has been overtaken by all things medical, we still managed to do some regular things in August, and these things must be documented. We spent the month . . .

Reading . . . in the mornings. Maxwell's summer ritual consisted of waking up around 7:00am but then staying in bed for up to two hours, just reading. It was a pretty sweet setup for him, and he burned his way through dozens of books (most of them in the Warriors series). It was a hard habit to give up when school started.

Packing . . . in the fun. After Aaron came home from the hospital, we tried to pack in as much fun as possible. Since he was on strict activity restrictions, we were somewhat limited in what we could do, but we still managed to find plenty. We tried out an escape room (Mike and I had done one before, but the boys never had). We managed to escape but only after a lot of hints from the facilitator. We counted this for our second summer goals prize. Then, as a belated birthday activity, Mike took Aaron and Max and a bunch of cousins to the Christa McAuliffe Space Center to go on a group mission on the USS Odyssey. They had so much fun, and Mike said he was really impressed with the facility. They're already making plans to go again. Add in a movie and dinner with my parents, ice cream with Mike's mom, and two more reunions (see below), and it was a pretty fun month.

Taking . . . Maxwell, Bradley, Clark, and Ian to the hospital for blood tests to see if any of them were a bone marrow match for Aaron. And then, a couple of weeks later, we got the results back!

Getting . . . family pictures taken. Soon after Aaron's diagnosis, we asked Mike's sister, Kari, to take our family photos. Not knowing what the coming weeks and months would bring, we wanted to have some nice photos of our family right now. I also wanted Aaron to be able to have a picture with each of his siblings. Our photo session was cut short by a rainstorm, but we still got some great ones that I'll treasure.

Discovering . . . a love of cucumbers. We've had a great cucumber crop from our one little cucumber plant in our garden, and Ian has been gobbling them up as fast as we cut them up for him. He loves them. He will even eat a whole cucumber for breakfast in the morning, which doesn't sound very appetizing to me, but I guess it hits the spot for him.

Spending . . . four days at the Nielsen family reunion--that's my side of the family. We rented a big house nearby that fit all twenty-two of us, and we had a great time playing games, having an art lesson, discussing Where the Wind Leads, eating, swimming, talking, going to the temple, hiking, and relaxing. Aside from an unexpected trip to the hospital, it all went very well.

Being . . . the recipients of lots of generosity. From a surprise neighborhood heart attack to a generous gift of an iPad to random gifts left on our doorstep to countless messages/emails/texts/calls to food drops to hugs to a million prayers, we have felt so loved. Two of Aaron's friends from school even held a bake sale and then used the money to buy Aaron a bunch of games for the hospital. I thought it was the sweetest thing.

Starting . . . school. I wanted summer to stretch on and on forever, but after Aaron's diagnosis, I was ready for school to start--both because I wanted Aaron to be able to get in a few days before his transplant and also because the other kids needed something to do and someplace to be while we were spending so much time at the hospital. All of the boys were excited but probably Clark most of all. The first day of kindergarten is not to be taken lightly.

Missing . . . the first two days of junior high. As it turned out, Aaron missed the first two days of school because of a fever that landed him in the hospital. We were all so devastated until we realized that the only thing he really missed was reading disclosures. Then he felt kind of lucky.

Going . . . to the last day of school. And then, eight days later, Aaron went to his last day of sixth grade. We didn't know it was going to work out that way. Sometimes I wonder if we should have had him even go at all. But he actually loved it (especially band), and I'm glad he'll get to start seventh grade next year without feeling like a total junior high newbie.

Getting . . . some teacher love. Aaron's 5th grade teacher from last year organized a little party for Aaron with all of his teachers from his elementary school years. As we walked into the classroom, and these amazing women enveloped him in hugs, I just felt so overwhelmed by all that they've done for Aaron over the years. Each one knew him at a different age, and it was as if I was watching his life march before my eyes to see him with all of them. They gave him a big Harry Potter Lego set, which he should have saved for the hospital, but it was much too tempting to let it sit in a box for three weeks, and he ended up putting the whole thing together that day! This little party also gave me an opportunity to get a photo I've wanted for years. These women have my whole heart.

Researching . . . aplastic anemia. I read several articles in medical journals, talked to three different aplastic anemia families, asked questions, watched videos, and read stories. It's like I've taken a crash course and learned a whole new language.

Bidding . . . our pool a fond farewell for another year. Our swimming definitely waned during the month of August, but we managed to sneak in a couple more times before the season ended.

Checking . . . off the fourth (and final) family reunion of the summer. We spent Labor Day weekend with Mike's whole family at a big cabin in Hobble Creek Canyon. It has been five years since we've been able to have the reunion at this cabin because Mike's parents were in Germany, and it was just as magical as my kids remembered. They spent the entire time running around with cousins, and it was pretty much the best time ever. (It also ended with an unplanned trip to the hospital due to very low platelets, so maybe it's best that all of the family reunions are over.)

Relishing . . . normal days. There were days where I could almost forget there was anything out of the ordinary going on in our lives. Mike went to work, the boys did chores and went to school, Ian ran around making mischief, I kept the laundry moving from the washer to the dryer, and we ended the day reading Harry Potter. Exactly as a day in August should be.

And now that September is here, I'm so glad we had those totally normal days because I have a feeling that this month is going to be anything but!

We Have a Plan!

Sep 3, 2019

Last week, I received a phone call from our medical coordinator. (Side note: before this all happened, I never realized that a big medical diagnosis like this one involves the coordination of so many different doctors, teams, and staff that it literally requires a person whose main job is just to juggle it all and make sure that each cast member shows up at the right place at the right time.)

And she said, "I've emailed you a schedule for the next two weeks. Take a look at it and let me know if you have any questions."

I must confess that with the word "schedule," my little Type A personality started to do a little happy dance. An actual schedule! With dates and times and appointments all mapped out. It was a beautiful thing to me.

We're now well into checking things off the schedule: consultations with nursing, pharmacy, nutrition, physical therapy, and the transplant team; appointments examining pulmonary function, hearing, heart function, and neurological processing to establish a baseline for all of Aaron's organs; exams and labs for Maxwell; and of course always more labs for Aaron.

All of these things are leading up to next Tuesday, September 10th, when Aaron will get a central line placed and be admitted to the hospital. When you have a transplant, the days before it are counted as minus days.  So, for example, Aaron will be admitted to the hospital on Day -6. 

On Days -5 through -2, he will receive two different types of chemotherapy, which will effectively wipe out his immune system and clear out his bone marrow. It's shorter than it would be if he had leukemia because his body has already done a really good job of killing everything on its own.

Day -1 will be a rest day. And then, if everything goes according to plan, Day 0 will be on September 16th. Maxwell will arrive at the hospital early in the morning. He will go to the operating room, and the doctor will extract his marrow from his hip bone using a long needle. The doctor told us they want to take about 600 milliliters (about two soda cans' worth), which is twice the amount that an adult gives when they donate blood. Max will be tired and a little sore afterwards, but he should bounce back very quickly. 

The bone marrow will be processed, and then on that same day in the afternoon, they will give it to Aaron through his central line. It will be a new birthday, so there might even be a party.

After that, we will start measuring time as plus days. Engraftment (when the body begins to make blood cells on its own) typically occurs sometime between Day +14 and Day +21. Aaron will probably be able to go home from the hospital about a week after that.

This morning I was reading an interview about aplastic anemia (because that's what I do these days), and the doctor described the treatment like this: "I view the transplant as four phases. The first phase is making sure you are a candidate for a bone marrow transplant . . . The next phase is what we call the conditioning phase, and that's the immune suppressive chemotherapy . . . to get your body ready to accept the new immune system. The third part is the transplant itself . . . And the last part of the process is what I like to call 'deal with it,' and those are the side effects that go along with everything we just did."

That's a pretty good rundown of everything we've been told so far.

Except . . . 

I think he left out a phase between numbers three and four. This was a phase that I was pretty naive about at first but that slowly unfolded as we gathered more information and met with the BMT team. I would call it the isolation phase, and from all that I've heard, it will be the longest and most boring phase of the entire process.

After Aaron comes home from the hospital, he will basically be confined to the four walls of our home until he can begin to be weaned off of the immunosuppressant drug, which will not be until six months post-transplant. 

Six months. That means no school, no church, no activities, no events. But while we're busy keeping him away from all of these things, we also have to somehow protect him from the invaders that will try to infiltrate our home on the hands and bodies of our other four children. I get overwhelmed when I think about the impossibility of such a task, so for now, we're focusing on the things we can do (i.e., follow the schedule). 

Last week, eight days after he started sixth grade, I finally admitted defeat. I picked Aaron up from school and took a "last day of school" photo under the school sign, which was, ironically, still welcoming students to the new school year. 

It was pretty sad, but you know what? Now that it's done, I feel so good about it. I am actually excited for a year of teaching Aaron at home and getting to spend all of that time with him. Not many moms get to have a year of one-on-one time with their 11-year-old. 

Time to make some more plans . . . 

Blood Brothers

Aug 26, 2019

It was a little over two weeks ago that we paraded all five boys into the outpatient lab at Primary Children's Hospital. Aaron was there for moral support. The other four needed to have a quick blood draw to determine if any of them were a bone marrow match for Aaron.

Maxwell was cool and calm: he had the facts; he knew what he needed to do. Bradley was optimistically confident; he volunteered to go first until the phlebotomist began pulling out needles. Clark was humming with anxiety; he asked the same questions over and over and over again. Ian was blissfully unaware of anything; for him, this was just a jaunty excursion.

A few days before, we showed the boys the classic BYU film about the little girl giving her blood for her brother. Although not exactly the same scenario, it seemed to do the trick in inspiring them all to greatness and brotherhood.

Mike and I actually debated for quite a bit about what to do with Ian. He is extremely contrary right now, even about the things he likes to do. Additionally, his distrust of doctors escalated when he broke his arm this summer. We couldn't decide if it would be better for him to go first before he knew what was happening or second after watching one of his older brothers. We even thought it might be easier to just take him in at a separate time. But in the end, we decided this needed to be a unified effort.

Maxwell paved the way. He sat in the chair, played a game on the iPad, and acted like this was the kind of thing he did every day.

What happened next can only be called a miracle. I have thought about it again and again, and there is absolutely no other explanation for it. Following Max, Ian climbed up into Mike's lap. Mike popped a sucker into his mouth and pulled up a show for him to watch. I realize that sugar and media have a big pull on my kids, but not that big. Especially not for the two-year-old. From that moment on, it was as if the phlebotomist was not in the room.

She took Ian's arm and tied it tightly. Mike and I watched Ian warily. She cleaned Ian's arm. Mike and I held our breath. She went in for the poke. Mike and I tensed. And Ian did not move a muscle. He did not flinch. He did not cry. All I could do was gape. It was so unlike what I was imagining that I was just kind of shocked. And delighted. Very, very delighted.

The other two draws were as undramatic as the first two. The phlebotomist packed up her things and left with the parting comment that that was about as easy as they come.

No one really told us how long to expect the results to take, but a little digging online said one to two weeks.

Those were long days.

But hope is a powerful force. It pulled me along and kept me safely tethered. I dreaded the possibility of having that cord snapped and feeling powerless once more.

At the end of last week, my phone rang, and when I saw the hospital's number, I silenced it. I admit it, I did. And then I kicked myself because I really did want to know, but the threat of bad news loomed over me, dark and foreboding. (The phone call ended up just being a return call, and the only thing the doctor said was that most of Aaron's tests were back and that she would see us on Tuesday to discuss a plan.)

I sometimes struggled to know what to pray for during those days of waiting. My heart yearned to pray for the most obvious thing: a bone marrow match for Aaron. But my practical side argued that the boys' bone marrow already was what it was, and my prayers weren't going to change it.

One day I was listening to a talk by Elder Neal A. Maxwell. (He is a favorite of mine. In fact, that is where my Maxwell's name comes from.) The talk was called "Encircled in the Arms of His Love." As I listened, my anxious heart was soothed. And then, these words suddenly caught my attention and stood out in bright relief against everything else:
Recall the new star that announced the birth at Bethlehem? It was in its precise orbit long before it so shone. We are likewise placed in human orbits to illuminate. Divine correlation functions not only in the cosmos but on this planet, too.
I suddenly had the thought: If God can put a star into orbit long before He needs it, then He can give one of my sons the right type of bone marrow long before Aaron is diagnosed with aplastic anemia. 

I realized that it wasn't so much a matter of changing what was already there as acknowledging that God's knowledge was perfect and that if He wanted Aaron to have a match, then He would have already provided a way. And if His way was not a match, then that meant there would be another way.

So my prayers took on a slightly different tone. I still prayed for a match because that is what I wanted. And from my limited view, that seemed like the best possibility for Aaron. But I guess my perspective opened up just a little bit more. I realized that even though everything was very much present and in-the-moment for me, that didn't mean that all of this was coming as a surprise to Heavenly Father. And that was comforting to me.

(But that didn't mean I didn't sometimes let fear dictate whether or not I was going to answer the phone . . . )

So today, I called the clinic to find out what time Aaron's next appointment was scheduled for. The receptionist told me, "It looks like he's scheduled to meet with the bone marrow transplant team at 12:00, and then he'll see the hematologist at 3:00."

I hung up. But my mind wouldn't let go of "bone marrow transplant team." I thought, He said "bone marrow transplant team." Why would we be meeting with the bone marrow transplant team if we didn't have a bone marrow match?

Could that mean . . . ?

Then a couple of hours later, I missed a phone call (totally by accident this time, I promise), and when I listened to the message, the person on the other end said they wanted to make sure Aaron was on the bone marrow schedule with his brother, Maxwell. My heart did a little leap.

I immediately called Mike, and he called the clinic. As the coordinator was going on about what time to come in and what to expect, Mike stopped her and asked, "Does this mean Maxwell is a match?" And she said, "Oh I'm sorry, I thought you knew. Yes, Maxwell is a perfect match."

A perfect match.

The star of Bethlehem and Maxwell's bone marrow. Not so different as one might think.

Mike and I were giddy, absolutely giddy, for the rest of the day. We thought Max and the other boys should be the first to know, so we didn't tell anyone. But we kept calling each other, making plans for how to tell them, and just generally rejoicing at the news.

Tonight we gave each of the four boys a gift. We wanted to thank them for being willing to be Aaron's donor. Then we gave Aaron a wrapped present. We told him that we had just found out that one of his brothers was a match for him. His gift would match that of his donor's.

The boys sat with bated breath, their eyes riveted on the present. And when he pulled it out, Maxwell recognized it as being a pair to his own, and he unceremoniously said, "Dang it!"

But then he bounced around the house for the rest of the night, as hyper as I've ever seen him. I'm sure it was partly due to nerves and fears, but there seemed to be this undercurrent of excitement and joy.

And Aaron? I wanted him to exclaim or cry or jump up and down. But he didn't. He just gave Maxwell a big hug and then went outside to play.

But tonight I found this photo of the day we brought baby Maxwell home from the hospital and Aaron met him for the first time.

That smile. That crushing squeeze.

And I have to wonder, Did you two have any idea of the unbreakable bond you would one day have?

Plans Were Meant to Be Broken

Aug 18, 2019

"How is Aaron doing?"

That is a question I'm asked frequently these days, so I'll attempt to answer it here, although I'm finding it can change drastically minute to minute. 

Three cases in point:

1. Aaron had a routine blood draw scheduled for this past Tuesday (funny what has become "routine" in just two weeks' time). But on Sunday night, he was exhibiting symptoms that were making me nervous: bruises and petechiae were appearing out of nowhere again, sores were sprouting in his mouth, and his gums were bleeding. I didn't feel like he could wait until Tuesday. So Mike took him in on Monday instead. Sure enough, his platelets had dropped back down into the single digits, requiring another platelet transfusion. Looking back, I'm guessing he could have held out until Tuesday, but I've become a bit jumpy lately.

2. On Wednesday through Saturday of this past week, we had a reunion with my family. We all stayed in a big house not far from our home (and the hospital, which turned out to be a good thing). Wednesday and Thursday were great. Being around grandparents and aunts and uncles and cousins perked Aaron right up. He was the happiest I had seen him in several days. Then on Friday morning, we went on a short hike. It was not treacherous or strenuous, but Aaron began to fade, and quickly too. He was at the back of the pack, and after less than half a mile, he said to me, "Can we go home soon?" (I thought he was having a bad attitude.) Then he said, "I am so cold." (Note: it was not cold.) And finally, "My head is hurting." We decided to turn around. By the time we got back to the parking lot, he was drooping against my side and breathing heavily (and I was beginning to panic). We rushed him back to the house, took his temperature (it was 101.5) and called the hospital. Within minutes, all of our afternoon plans were cast aside and we were on our way to the clinic. (Thankfully, after a round of fluids and some rest, his fever disappeared, and we were allowed to go back to the reunion.)

3. Last night as Aaron was going to bed, he said, "My throat is hurting." I got a feeling of foreboding in my chest, which was confirmed this morning when he didn't have the energy to get off the couch. His fever was back, which meant another trip to the hospital, and this time he was admitted. It looks like it's something viral, not bacterial. But it doesn't really matter because either way, I'm guessing the first day of school is out for tomorrow. And we were so close to making it!

You would think that I would have already figured out that absolutely nothing is set in stone, and I must stay flexible. But I just can't seem to help but get attached to my plans. It's in my nature. And every time something unexpected happens, it's like I have to recalibrate. This is not an easy process for me. And sometimes, like today, it involves a lot of tears. (I was holding out on the hope that he would be able to start school, and I was so devastated to give up on that.)

You might expect that these unexpected changes would only affect me if they were negative in nature. But I'm finding that it's the change itself that impacts me, regardless of whether it is positive or negative. For example, if I spend a lot of mental energy working through and accepting some bad news and I come up with a plan for how to deal with it, and then I find out it wasn't so difficult after all, well, that's hard for me. Some of you probably think this sounds crazy. Probably because I am crazy. But basically I feel like I can never win because whether I plan for the best or the worst, it's almost always different than what I'm expecting. 

This is all to say that the last couple of weeks have been rough. Not in a brutal, heart wrenching way. But more in an up-and-down, never-know-what-to-expect way. 

But that's maybe more about how I'm dealing with all of this rather than Aaron. Back to him:

For sure, the worst thing he has been dealing with over the last two weeks is an abundance of sores in his mouth. When he was discharged from the hospital, he had one on his tongue. They tested it for the herpes virus, but it came back negative. They decided to treat it anyway. But instead of helping, it seemed to breed more sores, and a new one appeared almost every day. His lower lip is especially plagued by them, and sometimes he is in so much pain, he can't even think. We are treating them with a variety of things (magic mouth wash for pain, biotene for swollen gums, anti-fungal in case that's what's causing it), but so far nothing is helping. The most likely explanation is just that he doesn't have much of an immune system (his ANC (absolute neutrophil count) is currently sitting right around 100 or 0.1, which I've learned is very bad), and so his body just can't fight these invaders the way it normally would. But he sure would be a lot happier if they would just go away.

He is going in for weekly blood draws (in between other unexpected, unplanned visits), and his cell counts continue to interest us. (Mike, being the nerd that he is, has started plotting them on a graph.) His platelet counts have gone something like this: 4, 33, 96, 23, 8, 44. (You can probably guess where the transfusions happened.) His hemoglobin has been less sporadic: 8.7, 7.2, 10.4, 10.4, 8.7. His white blood count has held steady right around 2.5. Those numbers might not mean anything to you, but it's like an unfolding saga for me. I never know what they're going to do next. 

In other news, while some of our more trivial plans continue to fall through (see above), we still are on hold for the really big plans (i.e., treatment). We got the results back for all of the infections they tested for as a possible cause of this disease, and they all came back negative. This probably means that we will never find out a cause (which is the case for 80% of the cases). However, we are still waiting for the genetic test results to come back, as well as the one that has all of us on the edge of our seats: the bone marrow results from our other kids.

So we wait. And we make plans. And those plans fall through. And we make some more plans. And we wait again. This is the cycle we're in right now. It's not exactly fun, but for the most part, it's not too bad. There have been so many sweet moments and tender mercies and little miracles. But I think I'll save those for another post. 

P.S. Thank you all so much for your love and support, encouragement and prayers. They mean the world to us. 
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