One Step Back

Nov 16, 2019


Sometimes progress takes the "two steps forward, one step back" approach, and that's what it has felt like this week.

Following the bounteous platelet count reported last week, Aaron's platelets dropped to 231 and then at the next appointment dropped even further to 160. The doctor assured me that a) this is normal for platelets to bounce around (apparently they are very responsive to any kind of stress occurring in the body), and b) a platelet count between 150 and 200 is actually favorable to one above 250 (though their reasoning for this was unclear).

I should find this encouraging, but I have become rather suspicious of optimistic comments from doctors. So often, it seems like the BMT team acts positive and cheerful about one thing, but then the next week, after things have slightly shifted and changed, they admit that the earlier numbers concerned them a little bit, but now everything is looking just great. They adjust their expectations to agree with the data. 

Aaron's hemoglobin has also been steadily falling (again). Unless he somehow manages to pull up and save it, it's looking like another transfusion next week. 

We also got the results back from Aaron's latest chimerism test (which looks at the ratio of Aaron's cells to Maxwell's cells). Last time, all blood cells were 100% Maxwell's, except for the T-cells, which were only 47%. This time, the T-cells were split right down the middle--50% Aaron's and 50% Maxwell's. Although the doctors aren't going to do anything about it at this point, it is not the ratio they would like to see. And, judging from something Dr. Boyer said last week, I think he was expecting Maxwell's percentage to go up quite a bit more than 3%.

My emotions have followed a similar trend this week, gradually dropping into the frustrated, discouraged, and helpless range. They took an especially big nose dive on Wednesday afternoon when Ian let out a gigantic sneeze, and it was obvious that somehow, just like that, he had a full blown cold.

We immediately quarantined Aaron to the basement, but it was too late. Within two days, he had all of the same symptoms as Ian and was miserably blowing his nose in bed.

We had one job (keep Aaron healthy), and we failed. That's what it feels like to me.

For the past month, we have said no to many activities; been the obnoxious kind of friend who checks (and then double checks) to make sure there are no runny noses before agreeing to a play date; kept the two-year-old out of nursery; obsessively cleaned the house; burned our way through an impressive number of Clorox wipes; changed clothes anytime we've been somewhere other than home; quarantined sick children; and washed/sanitized so often that our hands are chapped and bleeding.

These things were not an inconvenience because it was for Aaron's good. But those sneaky germs infiltrated anyway, and it makes me wonder if any of it was even worth it.

There are basically two reasons why they don't want Aaron to get sick: His body's immune system is currently being suppressed, so he doesn't have the ability to fight off an infection like a normal person. And also, his bone marrow is still so new that an infection could possibly wipe it out.

So we are watching him very closely. As long as he doesn't get a fever or have any respiratory problems, he can stay at home. He is on prophylactic medications to guard against big infections, so hopefully this little one will merely offer a trial run to his brand new white blood cells. Fingers crossed that even in their sleepy state they can defend against the siege.

Meanwhile, yesterday his platelet count was back up to 217 and his hair is beginning to grow back in, so I'll take both as good omens that we're on the upswing.


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?

Bump in the Road

Oct 28, 2019


Yes, that is a hospital gown Aaron is wearing. Yes, he is sitting in a pre-op room in surgery. Yes, that photo is from today.

A little over a week ago, Mike and Aaron were at the clinic for an appointment. One of the nurses was flushing his central line. She took a look at his insertion site and said, "Hmmmm. Is that just a scab? Or is that actually the cuff?"

She had a nurse practitioner come look at it, who said, "I think it's just a scab, but I can see what you mean. Let's watch it for a bit."

And so for the next week, we continued to keep a close eye on it. When we were at the clinic on Tuesday and Wednesday, we pestered the nurses to look at it again. Even though they were the ones who had originally brought it up, the worry and concern had transferred over to us, and we found ourselves pushing them to follow up with it.

The problem was, there was still a scab over it--the same scab that had been there since the line was originally placed six weeks ago. We couldn't really assess anything until his next dressing change.

The home health nurse came to our house on Thursday, following a call to the clinic to see if we should hold off changing his dressing until the next day when Aaron would be back at the hospital for an appointment. Then it could just be changed there and the BMT team could examine it themselves. But no one returned the call.

So the nurse and I made an executive decision that the dressing was due to be changed, so she would come and do it, and then if it was a big deal to the team, they could change it again the next day.

As soon as the nurse removed the dressing, that old scab finally came off, revealing what it had been hiding: "Oh yeah, that's definitely the cuff," the nurse confirmed.

Warning: graphic medical photo below. 



Even though I feel like I'm always coming at medical information from a place of ignorance and having to bring myself up to speed, I instantly knew this was not a good development. If there's one thing I've learned, it's that the line is the gateway to all types of infections, which is why there are so many precautions taken to keep it clean and in good working order. You definitely don't want it to be tugged out of place.

I took Aaron to his appointment on Friday, and each person who looked at his insertion echoed the words of the home health nurse: "Oh yeah, that's definitely the cuff."

They sent Aaron downstairs for an x-ray, which provided evidence that the line had indeed moved. Even though it was still flushing, drawing blood, and giving medications without problems, it was just too risky to keep using it. When Dr. Harris came in, he finally verbalized what I had been fearing all along: "The line will have to be replaced."

Before we left for the day, I hesitantly asked the nurse practitioner if there was a possibility that Aaron could just have the line removed instead of replaced. After all, his line was contaminated a month ago, and so he has been getting peripheral blood draws ever since; the team has been talking about switching his IV magnesium to oral; and hopefully the blood transfusion last week was his final one. From what I could see, the line wasn't being used for much except to provide Mike and me with the daily entertainment of flushing it.

But Brenda looked at me in shock and said, "Oh no, he is much too early in the transplant process to get rid of his line! The risk of graft-versus-host-disease is still quite high." I snapped my mouth shut and blamed it, once again, on my lack of medical training.

So imagine my surprise when we met with the surgeon this morning, and as he talked about what he planned to do, he said something about needing the line for chemotherapy. "Oh no," I interjected. "Aaron isn't getting any more chemotherapy."

The surgeon gave me a sharp look and said, "If he's not getting more chemotherapy, why on earth am I putting in another line?!" I had to admit that I had asked the very same question a few days before. He strode out of the pre-op room, muttering that he had to call the BMT team and that he'd be right back.

When he opened the door again, he said, "Dr. H. is going to come down and talk to you about your options. I have to go do another operation." "Wait, what do you mean, options?" I asked. "I'm sorry, Dr. H. will have to talk to you about it. I'll be back."

I should insert that at this point, Aaron was actually on track to get back into surgery ahead of schedule. I might have known it was too good to be true.

The next person to open the door was Dr. H., who looked slightly uncomfortable. I'll spare all the details of the whole conversation, but the general idea was this: While there was no question that Aaron still needed some type of line that could be utilized quickly in an emergency, it didn't have to be a broviac. A picc line would probably do just as well, and placing it would not require Aaron to go under general anesthesia. The only downside was that picc lines tended to clot more easily. Oh, and they couldn't do a picc line today because it was a different procedure, so Aaron would have to be put back on the schedule for a different day.

I'm going to admit that at this point, I felt disgruntled, maybe even irritated. I'm not sure if it showed in my face or not, but inside I was thinking, We are having this conversation now? After Aaron has been fasting for fourteen hours and is dressed in a hospital gown? Now you're telling me we have options? Where was this conversation on Friday?

And then Dr. H. had the audacity to finish his explanations and ask, "So what would you like to do?"

My irritation flared to anger (but again, I like to think it wasn't obvious to anyone in the room). I appreciate it when doctors respect my opinion, answer my questions, and include me in the final decision. But to completely open up another option as my child is sitting there ready for Option 1 (which only a few days before had been presented to me as the only option) is unfair and unprofessional.

As I asked more questions, Dr. H. kept saying things like, "The surgeon is just trying to be certain we need this line. He is right to question us. He is just taking precautions. Anesthesia is serious. It's not something we treat lightly." And I agreed with him on all points. But then as I was asking him about the actual line placement and where it would be, he said, "I'm not the surgeon. I would have to defer to him. I don't know much about placing central lines." And the thought crossed my mind, This is not your field of expertise. But at least you're a doctor! I'm nothing, and yet you want me to make somehow make this decision with five minutes' worth of information!

Ruefully, I thought of Mike who was sitting at work at that very moment instead of beside me because we thought this was just going to be a basic procedure, identical to the one Aaron had already had.

But in the end, I gleaned the important information: the broviac would be reliable but would require general anesthesia; the picc line wouldn't have a double lumen and would have a higher risk of clotting, but it would be an easier procedure. It seemed to really boil down to: did I want Aaron to have to go under general anesthesia again?

Well of course I didn't want it. But I also knew that Aaron hadn't had any problems or complications with it in the past, and so he probably wouldn't this time either.

It seemed to make the most sense to just go forward with the original plan. Aaron concurred: that was what he wanted too.

The surgeon came back in, said, "It sounds like we have a plan," and two hours later, it was all done. The broviac was moved to Aaron's right side, he came out of the anesthesia without fanfare, and we were back home by mid-afternoon. Tonight Mike gave Aaron his magnesium and flushed both lumens, and everything worked beautifully, just exactly like it should.


I'm not trying to downplay the gravity of going under general anesthesia and having a central line replaced. It's a big deal. But it's also a technicality. It's merely part of the supporting cast in this epic adventure. Aaron's blood counts, as the real stars of the show, are what we're actually concerned with, and those are still looking great.   

And hey, now his line is no longer contaminated!

P.S. I just have to assure you that even though it may not sound like it in this post, I really do love our team of doctors and nurses. Just the fact that they were willing to put the brakes on the surgery this morning shows that they have Aaron's best interest in mind and are doing their best to care for him. They're doctors, but they're also human, and I can forgive them for that.


Our Home Away From Home

Oct 23, 2019




 Aaron may not be living at the hospital anymore, but he is still spending a lot of time there.

Yesterday he was at the clinic for five hours, today he was there for another three, and he'll be back again on Friday.

It's not very exciting; we spend most of our time sitting in a room waiting--for blood draws and lab reports and doctors and for someone to tell us we're finally allowed to leave.

Yesterday we had a little change to the routine. Aaron is at Day +37, so they started him on a prophylactic anti-pneumonia medication. (I think his white blood count had to reach a certain number before he could get it, which is why it wasn't started when he was discharged.)

The pentamidine was supposed to take about two hours to run, but when he was forty-five minutes into it, he started to get really nauseous. So they immediately turned it off, gave him zofran and benadryl and then waited a bit before starting it again (at half the speed).

In the middle of all of this, Dr. Harris came in. He said if Aaron couldn't handle the pentamidine, then they would try a different medication--a thick yellow liquid that would have to be taken daily (whereas this one dose of pentamidine would last 3-4 weeks). When he said that, I watched a look of mild panic followed by firm resolve come over Aaron's face. He does not have a good track record with yellow liquid medications.

Luckily, the rest of the medication went in without drama, and we were able to go home.



He was back at the clinic today for a blood transfusion. I know. A transfusion. It's kind of disappointing. We were hoping we'd seen the last of those a few weeks ago. But his hemoglobin has been slowly but steadily dropping, and it finally went below the transfusion threshold yesterday. (They offered to let him stay and get the transfusion when he was getting the pentamidine, but he'd had it and wasn't interested in staying even a minute longer than necessary.)

It was just on Monday that Aaron came up the stairs huffing and puffing and said, "I am so tired. I think my hemoglobin must be getting low." I brushed him off and thought he was just seeking attention. So he looked a little justified when they said he would need a transfusion, and when Dr. Harris heard that I hadn't been sympathetic about his lack of energy, he said, "Aaron doesn't really strike me as an overly dramatic kid. If he said he's tired, I'd be inclined to believe him." Point well taken.

So today he was back for two units of blood, and he really did seem much perkier after he got home. Although the goal is, of course, no transfusions, no one is acting concerned or surprised about Aaron's need for blood. It is common to continue to get transfusions for awhile after a bone marrow transplant as the body begins to make cells on its own.

Aaron's platelets, however, are another story. It seems he has decided to invest all of his energy into platelet production and leave the red blood cells languishing behind.

Tonight Maxwell asked, "What is Aaron's platelet count?" (He finds this all very fascinating.)

"182!" we exclaimed.

"Wait, 182,000?!" He was floored. "What was it when Aaron was diagnosed?"

"4." A measly, pitiful 4.

"What was the highest it ever was after a transfusion?"

"144."

"Wow, so this is the highest it's ever been?"

"Since becoming interested in Aaron's blood, yes. But Max, this is the best part: We found out yesterday that Aaron's platelets are 100% yours." (This was the result from the chimerism test I mentioned last week.)

A slow, wide smile spread over Maxwell's face: "Looks like I'm taking over your body, Aaron!"

Aaron didn't seem one bit mad.


A Summer Vacation to Lake Tahoe

Oct 20, 2019

The fact that I'm finally journaling a little bit about our family vacation that happened three months ago is evidence that things have slowed down here. This vacation took place the week before Aaron was diagnosed. At the time, we didn't have even the slightest suspicion that anything was wrong. He hiked and kayaked and buried himself in sand just like the other kids. Just a few days later, as we sat in the hospital, I thought back longingly to our time at Tahoe; it seemed like it came straight out of another life.

But as time has passed, the memories from this time together as a family have become more and more dear--both as a reminder of the way things were and as a promise of good things to come.


Two summers ago, we went on a fantastic family vacation to the redwoods. On our first day of driving, we made it to Lake Tahoe and stayed there for the night. We took advantage of the few short hours we were there to go to the lake. As we sat on the sand and looked at the crystal clear water hemmed in by striking mountains, we looked at each other and asked, "Why are we going somewhere else? Why don't we just stay here instead?"

Of course, we're glad we decided to continue on because we loved the redwoods, but we made a promise to ourselves that we would come back to Lake Tahoe and make it the destination rather than the pit stop.

And this summer, we did just that.

We rented a cabin and explored Lake Tahoe for four glorious days. That first glimpse two years ago told us we would love it, and we were not disappointed.


My brother, Gordy, and his family came with us in 2017, and they were also convinced they needed to give Tahoe its proper due, so they came with us again this time. And as you know, it is never a bad idea to bring along cousins.


Ready for a few highlights?

Baldwin Beach, Take 1
On our first full day, we went to Baldwin Beach. We got there before 10:00 in the morning, which meant that the beach was still mostly empty and we could snag a picnic table. We set up lots of shade, and the kids wasted no time getting into the water. (I, on the other hand, had to wait for the sun to arch up several hours before I was ready to immerse myself because that water was cold!) We brought a kayak, and so did Gordy, and it was heavenly to paddle around the lake, especially before the big boats stirred up the water. Mike decided to rent a paddle board for fun because none of us had been on one before. We all took turns with it, but some were more naturally talented than others (I was among the wobbly). The sand on Lake Tahoe is very coarse, which makes it really easy to brush off. My kids loved to bury themselves deep inside it (and after I got wet, I could understand why this was so appealing). We also had several snorkeling sets, and it was actually the absence of things that made looking underwater so cool. It was almost like looking through a glass of drinking water--it was that clear.






Early Morning Run
I really wanted to go running in the mornings while we were at Tahoe--not because I am in any way dedicated to an exercise routine (I'm not), but I feel like running (or walking or biking) gives a more intimate view of a place, and I like that. I only made it happen one morning, and it ended up being fairly short because I am not a hill runner (and that's pretty much unavoidable at Tahoe), but I loved being out in the cool morning before anyone else was awake. Mike and I went to the High Meadows Trail, which wound through the tall pine trees and gave us glimpses of the lake.



Emerald Bay
We tried to visit Emerald Bay on our first morning. We thought we would be fine if we got there before 10:00, but all available parking was completely gone (unless we wanted to hike in, which we did not). So the next day we got an early start and were there just after 8:00. We didn't have any trouble getting a parking spot, but I was shocked that in the fifteen minutes it took us to put on sunscreen (and calm down a tantruming Ian), the parking lot filled right back up. It was easy to see why this is such a popular spot on Lake Tahoe. From above, you can see the green-hued bay with an island cocooned in the middle and the lake stretching out behind it. We hiked down to the water's edge (a lovely hike--almost completely shaded). The kids were eager to get in the water, but it felt super cold (maybe because it was still early in the day). By the time we were ready to hike back to the top, the sun was high in the sky, which made it not as much fun as the way down. Still though, we couldn't get enough of those views.







Eagle Falls
When we were at Emerald Bay, we saw a sign pointing to Eagle Falls. We hadn't heard anything about it, but we decided to check it out anyway. I'm so glad we did. It wasn't a hard climb, and the waterfall ended up being quite a bit bigger and more impressive than we were expecting. It was a  little detour that was totally worth it.




Tahoe Trout Farm
This was the activity that took the number one vote from my kids. They loved it so much, and the next day they begged and begged to go back, but we had already caught all of the fish we could handle. We loved everything about this fish farm. It was beautiful and had a quiet rural feel about it. The owner could not have been more of a fisherman if he had tried. He was friendly and chatty and so patient with the kids. We took a couple of fishing poles, a bucket, and a net, and headed out to the pond. We could see the trout swimming around, but it took awhile before we got a bite. But Aaron finally caught one, followed by Maxwell, Bradley, and Clark (in age order, just like that). Maxwell has wanted to catch a fish for years, and even though Mike has taken him fishing many times, he had never caught one himself until this moment. Some might say it's cheating to catch a fish at a fish farm, but we all loved it. It was nice to feel so successful instead of going home disappointed. We ended up with four big fish. They gutted them for us there at the farm (Aaron and Max helped), and then we took them back to our cabin and froze them. When we got home from Lake Tahoe, Mike cooked them up, and we sat around the table and told big fish stories and reminisced about our trip. It was awesome.







Date Night
Because we were with my brother and his family, we were able to work out a little babysitting trade and each enjoy a night out sans children. When it was Mike's and my turn, we went out to eat, and then we explored a couple of trails that we'd heard about: Cave Rock and Chimney Beach. We had been thinking about taking the whole family to Chimney Beach the next day, but after doing it with just the two of us, we realized that there would probably be a lot of complaining with nine children. But Mike and I were so glad we had the chance. The lake was stunning. With every few feet on the trail, it looked just a little bit different, which made me exclaim again and again. The ambiance was heightened by the sun going down, casting a fiery reflection across the water. For some reason, we were the only ones on the trail, which kind of baffled us (and made us slightly wary) because we couldn't figure out why people would want to miss out on this kind of beauty.









Baldwin Beach, Take 2
On our last day at Tahoe, we decided to go back to Baldwin Beach. I was hesitant because I didn't want just a repeat of when we were there before. But it ended up being completely different and even more fun than the first time. This was because we chose to set up camp on a little strip of land that ran between the lake and an inlet of water. This was like a private little pond for us. It was shallow and since it was disconnected from the actual lake, the little kids got a chance to paddle in the kayaks by themselves. If you paddled down the channel of water, it started to twist and turn among the reeds and lily pads. I half expected to see an alligator's nostrils poking out of the water. The kids also found a crawdad, which kept them entertained for hours. It was the perfect way to spend our last day.








Family Time
We loved being at Tahoe with my brother Gordy, his wife Brooke, and their four kids (Charlie, Rose, Lyda, and Wally). We stayed at a spacious cabin and had plenty of room for all thirteen of us. The cabin had a hot tub, and our kids loved nothing more than getting back from the lake and climbing straight in to warm up. (We thought we were for sure going to be charged a cleaning fee for all of the sand they undoubtedly left behind, but we weren't.) Gordy brought their nintendo switch, and, if I'm being honest, that was another highlight for our poor video game deprived children. Our kids all played really well together. Clark, Rosie, Lyda, and Ian seemed to have some kind of imaginary game going on the entire time. Mike and I loved having other adults to talk to, and Gordy can make me laugh like no one else. Gordy also always makes a music video of their trips, and so we love when they come somewhere with us because then we get to be in the video too and it's such a fun keepsake to have at the end. Basically, we would always say yes to a vacation with them.





Even though there are many more places we want to visit as a family, I'd be surprised if we didn't end up back at Tahoe at some point. It is only a day's drive away, there is so much to do, and its natural beauty can't be beat.

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