A Story About Platelets

Nov 9, 2019

Aaron's platelet count broke 300 this week.

For reference, normal platelet count can span anywhere from 150 to 400. So he's well within the normal range, and at this point, it's quite possible he has more platelets than I do!

Before this summer, platelets were one of those things I never devoted a single thought to. If one of my kids got a cut or scraped his knee, a kiss and a bandaid was all he needed. His body took care of the rest.

But after Aaron's diagnosis, it seemed like platelets were the only thing I could think about. Instead of being in the hundreds, Aaron's were in the single digits. That's the point where doctors start to worry about spontaneously bleeding.

So of course Aaron started getting regular platelet transfusions. That would usually bump his count up to the 50's or 60's. The goal was for the transfusion to last a week, and the clinic always optimistically scheduled him for seven days out.

However, even when he got an especially rich bag of platelets, that didn't change their life span, which is only about six days. Consequently, every Sunday all of the tell tale signs of low platelets emerged: bruises, petechiae, and bleeding gums. It couldn't have been any clearer if he had been wearing a platelet meter, and it was unnerving to watch it happen week after week.

There is one weekend that stands out in my memory more than any of the others. We were at a family reunion in Hobble Creek Canyon with all of Mike's siblings and his parents. We stayed in a sprawling cabin where the 30+ grandchildren ran around to their heart's content.

At that point, we knew that Maxwell was a bone marrow match for Aaron and his transplant day was scheduled. This reunion felt like a last hurrah for him. He seemed to sense it because I watched him play with more exuberance and enthusiasm than I'd seen from him in weeks. I kept thinking he would crash, but he was blessed to draw from some untapped pool of energy I didn't know he still had. He was so happy. I felt a little apprehensive, but I just couldn't bring myself to reign in any of the fun.

On the final night, Aaron was playing murder in the dark with cousins. He took an unfortunate bump in the mouth, and his gums started bleeding immediately. In normal circumstances, a person's platelets rush to the scene and clot the blood. But Aaron didn't have enough platelets to rush anywhere or do anything. Mike and I both knew his gums probably weren't going to stop bleeding until he got more platelets.

We pulled him from the game and watched him over the next hour. As suspected, his gums continued to slowly leak. There was nothing alarming about the flow--just that we knew it wasn't going to stop.
We figured the best thing he could do was go to bed and we would take him to the hospital in the morning.

(I should probably insert here that we had no cell phone reception, and the landline at the cabin only worked for Utah County. We considered driving down the canyon so we could call the hospital, but we already knew from past experience what they would say: "Is his nose bleeding? Did he get a head injury? Then you're fine to wait.")

So that's what we did. But as I said good night to Aaron, he confessed that he was worried he was going to start bleeding more in the middle of the night. It was the first time I'd heard him admit to being worried about anything, and that kind of freaked me out. Mike and I decided we would set alarms to check on him at midnight, 2:00, and 4:00 just to make sure it wasn't getting any worse.

When I got up at 4:00, I used my flashlight to look at Aaron. He was sleeping quite peacefully, but his lips were encrusted in blood, and there were splotches of it all over his pillow and sheets. I woke up Mike, and we decided he should take Aaron to the hospital.

But an hour later, they were back. Once Mike was out of the canyon, he had called the hospital to ask if he could bring in Aaron. They said that even though he had been steadily bleeding for seven hours, as long as it wasn't a nosebleed, he should wait to come until later in the day.

So Aaron got to finish out the reunion, but all of his earlier energy had been snuffed out. He provided entertainment for his little cousins who were both scared and fascinated by his bloody mouth, but that was about it. We packed up and left as quickly as possible. On the drive home, he felt sick to his stomach from swallowing so much blood. He threw up, and it looked like he was holding a bag of blood.

Although this is the most extreme example (and sorry to those of you who are now feeling nauseous yourself!), this was Aaron's reality. His body didn't make platelets. He was alive because of transfusions.

I've thought about those scary weeks many times over the past few weeks as we've watched the steady climb of Aaron's platelets. It has been thrilling. When they crossed over 300 this week, it felt like we could resume our earlier habit of never giving them a passing thought.

Except, maybe not.

With platelets flowing in his blood again, Aaron has picked back up many of his favorite activities, including riding around on his ripstick. Earlier this week, one of the wheels hit a crack in the driveway, and Aaron flew off, skidding up his arm.

With wonder, we watched it form a scab. A big old beautiful scab. Even the younger boys commented on it.

We might not ever be able to stop marveling at a healthy, working body.

A Little of This and That in September and October

Nov 3, 2019

Although I wrote many times about many things that happened in September and October, they were almost all medically related. And guess what? We actually did some other things too, including . . .

Taking . . . baptism photos of Bradley. It's funny what kinds of things feel non-negotiable in the moment. Three days before Aaron was admitted to the hospital, it seemed of supreme importance to me to get some photos of Bradley for his upcoming baptism. I felt like if we didn't take them on that very day that it would never happen, and I couldn't bear the thought of not having some of him. So early on Saturday morning, the two of us drove down to Temple Square. The weather could not have been nicer, and we strolled around the grounds snapping photos. Bradley was so cooperative and cheerful, and I loved spending the time with him. So it turned out that even though the pictures weren't actually essential, I kind of think I was right: there might not have been another day to take them, and I am so glad to have them!

Winning . . . Blockwalk. Every year our elementary school hosts blockwalk to raise funds for the PTA. Family, friends, and neighbors pledge money per lap walked by the student. I have to admit that I'm the only one who ever pledges money for my kids becof the other activitiesause I don't like asking other people for money. But the boys all love to walk laps. They even forego all  going on just so they can walk more laps. This year, Bradley and Clark both happened to walk the most laps in each of their grades (21 and 9, respectively), so they each received a cool new art set as a prize.

Writing . . . a poem. Maxwell and Bradley both submitted an entry for Reflections at their elementary school. Bradley drew a picture, and Max wrote a poem. The theme was "Look Within." Max wrote several poems about friendship but then decided to put a little more of himself into it by sharing the experience he had with being Aaron's donor. This was the result:

Blood Brothers

My brother,
Who looked fine,
Turned out to be sick.
When only I could donate,
I had to dig deep to find the courage
To push through
And save his life.

The day soon arrived.
The tenseness I was feeling
Seemed to carry onto mom.
I fell asleep, and woke back up,
My hip all I could think of.

The nausea soon hit.
I couldn’t stand.
I started to feel woozy.
My stomach contracted
Because of the dizziness.
It took me hours to recover.

I now feel
I did the right thing.
I love my brother
And am happy about
The hope I brought
For a better life.

Celebrating . . . Bradley's eighth birthday. Bradley kept giving us subtle hints about the imminence of his big day. I think he was worried we might forget about it in our distraction over Aaron. But we didn't (although we did have to scramble a bit at the last minute). We couldn't really decide what to get for him. Mike was convinced that a metal detector was an ideal present for an 8-year-old. I wasn't so sure, but luckily, one of Mike's friends was getting rid of his metal detector, which made it a pretty easy decision. And Bradley loved it. He thought it was the coolest birthday gift ever (but then I haven't seen him use it much beyond his actual birthday, so maybe I was right, too). He wanted a banana cake in the shape of a banana. Mike obliged, but the end result was not up to his usual standards, and he forbade me posting any photos of it (but I didn't listen).

Reading . . . not a whole lot, if I'm being honest. While Aaron was in the hospital, he didn't want to read at all, and I worried that maybe the experience had killed his love of reading forever. But maybe it was me who I actually should have been worried about. As soon as we were home, Aaron started burning through books again, but I, on the other hand, have still not been able to focus for long enough to actually finish anything (except Bad Blood, which was the craziest story ever).  

Driving . . . through Immigration Canyon. One evening when Aaron was still in the hospital, Mike loaded up the other kids and we all went for a drive through Immigration Canyon. Sometimes the red leaves are a bit hit or miss in Utah (it probably has something to do with temperature or precipitation or both), but this year, the reds hit it out of the park. The canyon was on fire. We drove through the twists and turns listening to our fall playlist and letting our eyes feast on the colors. We stopped for just a couple of minutes to breathe in the mountain air and crunch through the leaves. We couldn't be gone for too long. Mike had to get back to Aaron; I had to take everyone else home for bed. But that short drive did wonders for my soul.

Saving . . . myself from boredom with knitting. I always knew this hobby would come in handy, and it totally did with all of the endless hours at the hospital. As with reading though, I found that I couldn't knit on anything that required too much concentration, so I actually tried to choose projects that were so simple I could just put my hands on autopilot and still focus on what was going on around me. We had one nurse who was also a knitter, and at the end of our stay, I gifted her a hat because I knew she was one of the few who would truly appreciate it.

Discovering . . . that trail mix goes a long way in keeping Ian occupied and quiet. Because we're trying to minimize exposure to germs for Aaron's sake, we have not been letting Ian go to nursery at church. ("I can't go to nursery because there are too many germs," he likes to tell people.) So now he's coming to class with Mike and me, which, you can probably imagine, is not the most enjoyable. But recently, we found out that if we give him a package of trail mix and only open up the top corner, it will occupy him for a good thirty minutes as he sticks in one finger and fishes around for the M&Ms (and he even eats some nuts and raisins along the way!).

Giving . . . blood. One of my friends organized a blood drive in honor of Aaron. The bloodmobile parked itself at the end of our street, and it was so amazing to see family and friends (some from many years ago!) come show their support of Aaron. All told, I think we had fifty-four people come to donate, although not all of them passed the screening test. Mike and I both gave blood, and it was actually my first time ever (I figured there wouldn't ever be anything else that would help me overcome my fear as much as this, so I had to do it). I didn't faint, and a week later, I got a call that they had given my blood to a patient! 

Having . . . a Star Wars marathon. Since we couldn't really go anywhere for fall break, Mike thought it was the perfect excuse for a Star Wars marathon. I don't like Star Wars, so I did not participate, but the rest of them all loved it. Even Mike, who has seen the fourth one probably a hundred times, said, "It's just so good."

Visiting . . . the pumpkin patch. We didn't plant any of our own pumpkins this year, so we decided to go pick some out at one of our favorite family-owned farms. Aaron couldn't come with us because of the crowds and dirt, and when I looked back at the photos of the other boys, it looked like there was a huge gaping hole without him. But the air was cool and crisp, the boys had fun swinging and going down the slides, and we came away with a wheelbarrow's worth of pumpkins, so mission accomplished.

Signing . . . up for a gymnastics class. Last winter, Bradley did a session of gymnastics at our local rec center. He fell in love with cartwheels, headstands, and back bends but didn't love the class so much as it was made up almost entirely of girls, but the instructors could still never remember his name. So this time I signed him up for the all-boy class at the gymnastics training center instead. He gets to learn skills on all of the equipment (parallel bars, rings, vault, etc.). He has only been twice so far, but I've watched him both times, and he is totally in his element. I don't know if he'll end up doing more than just this session, but right now, it is the perfect form of exercise on these dark autumn nights.

Suffering . . . through growing pains. Bradley has been getting the worst growing pains at night. Sometimes he just moans and cries because his legs hurt so much. One night, he even asked Mike if he could have a cane so he could hobble to bed. I mentioned it to our pediatrician when I took Bradley to his yearly check up, and he recommended giving Bradley a dose of magnesium every night before bed. That seems to be helping somewhat, but last week, just as he was finishing gymnastics, those growing pains revved up something fierce (which makes sense, as they're usually related to muscle fatigue). If anyone has any additional tips, please share!

Going . . . over to the gym at the church to take some photos of our Halloween costumes. I've learned that it is worth it to get dressed up an extra time for the sole purpose of taking photos. Kids just have a difficult time cooperating if you're standing between them and candy. We went on an afternoon when the church was empty so that we didn't have to worry about Aaron coming, too. This year we decided to go as our own basketball team. Ever since Ian was born, people have commented on the fact that we now have enough boys to form our own team. We ordered custom jerseys with our team name, Thundercats (named after our pet cat, Thunder), on the front and our last name on the back. The numbers correlated with birth order. Mike and I rounded out the team as coach and referee, respectively. 

Buying . . . a pair of expensive jeans. (And just to clarify, when I say "expensive," I mean $100, not $500.) Up to this point, I have always been an Old Navy/Target/Costco kind of jeans person. But I recently had two pairs of jeans bite the dust, and when I was at the mall to replace them, I passed the Madewell store, and I said to Mike, "I have heard really good things about Madewell jeans." So we went into the store, and after trying on a big stack of them, I came out with two new pairs. And the verdict is now in: I love them. It sounds really trivial to talk about jeans, but I actually didn't know I could love a pair of jeans so much. They are comfortable and stretchy, but they don't sag throughout the day. I don't think I will ever be able to buy another brand again (unless, of course, they don't hold up and I have to replace them in a couple of months . . . we shall see).

Braving . . . the cold to go trick or treating. It was a pretty chilly evening (although not as bad as two nights before when it was about fifteen degrees colder and snowy and windy), so the boys put turtle necks and pants under their costumes and gloves on their hands. Some of us (Aaron, Ian, and me) peeled off after just a street and a half. But the others kept going for another forty-five minutes. By 7:45, all trick or treaters seemed to be done for the night and we still had a Costco-sized bag of candy unopened.

Wishing . . . I could take two-year-old Ian trick or treating every year. I honestly can't believe I'm saying this since, generally speaking, Ian has not been a very easy two-year-old. But something magical happened on Halloween night. He was the cutest, most pleasant little tagalong ever. It was his first year out of the stroller, and his short little legs ran hard to keep up with the big boys. He excitedly said, "Trick or Treat!" and "Thank you!" at every house and then reviewed what he was going to say as we walked between houses. He didn't have a single meltdown, not even once we got home and he was scarfing down candy and it was his bedtime. Just before we headed for home, he looked up at the sky, which was streaked with vibrant lines of pink and orange, and he exclaimed, "Oh!!! What color is the sky?!?!" He was just the sweetest thing, and I wish I could freeze him just like that.

That wraps up this monthly update. What did you do in September and October?
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