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?"


"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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