A Tribute to Good Nurses Everywhere

Dec 23, 2019

The other day, Aaron said, "Remember when I was in the hospital?" He said it almost like it was a distant memory. It's amazing how quickly such a big experience can fade away into the normalcy of daily life.

The truth is, I actually think about our time in the hospital almost every day--or rather, I think about the people in the hospital. If it's Tuesday, I know Kathy is probably there. If it's Friday night, then Mariah. If it's Sunday, Dave.

We're still at the hospital a lot--at least twice a week on Tuesdays and Fridays, but most of our favorite nurses work in the inpatient unit, and we no longer have an easy pass to those hallways. I often wish that I'll bump into one of them on the stairs or in the lobby, just so I can say hello and ask them how they're doing.

To them, I realize that Aaron was just another patient (and, from what I could gather, a pretty easy one at that). Their days (or nights) followed a very typical routine. The patients in the rooms changed, but the tasks stayed the same.

But to us, these nurses meant everything. They were in and out of Aaron's room all day--switching out medications, checking vitals, drawing labs. We learned about their families and interests. They told us funny stories. They helped break up the monotony of those long days.

We would anticipate the changing of the guard every morning and night, wondering if we would get a favorite nurse or if we would be meeting someone new. During the four weeks we were there, I can honestly say we didn't dislike any of our nurses. Each one was capable and professional. Aside from a couple of very rare exceptions, it always felt like Aaron was in good hands.

But we definitely had a few that we liked best, and those are the ones I think about frequently. They were the ones I felt like we could have been friends with in real life, even without an IV pole to help break the ice. But when we left the hospital, our goodbyes carried a note of finality. We knew the only way to see them again would be to be admitted, and we certainly didn't want that.

So even though they'll never see this post, a round of thank yous is still in order:

To Ashlyn, who, on our first day at the hospital, noticed my silent tears and asked if we wanted her to pull the curtain for some privacy. I said no, it was fine, I just couldn't seem to quell my emotions, and she looked right at me with a look of sincere compassion and said, "It's okay. It's hard." She has remained our favorite nurse in the clinic, and she is one of the only ones on this list that we still get to see on a regular basis. (She also taught me how to pop a heparin flush--a little trick that cannot be overemphasized.)

To Chelsea, who took Aaron to get a chest x-ray but got more than she bargained for when his knees suddenly buckled and he fainted onto the floor. She was Aaron's tech several times over the course of his hospital stay, and she was always so cheerful and friendly. But the best thing was when she walked into his room, saw the photos of him and his brothers on the wall, and said, "Oh, my heart."

To Tracie, Aaron's nurse on the first day of his long, extended stay. I asked her a question when she came in for the first time, and she made sure to explain every single thing after that. She brought ice for Aaron with his first dose of chemo. She flew into quick action when he had a bad reaction to the ATG. And she said that adolescent boys were usually her least favorite patients, but she'd never had one like Aaron. She couldn't believe he was for real. (I'll love her forever for that.) (And because we had her right at the beginning, I wasn't in my picture-taking rhythm yet, so I don't have one with her.)

To Mariah, who helped with an elaborate setup to accommodate a huge board game. This involved removing the foot board from the bed and bringing in another table. She persevered with a solution even after Mike gave up. She was a stealthy night nurse, entering the room on tiptoe and showing the utmost consideration for Aaron's sleep. She told me she liked working nights because she had "lots of time to do research." She also called and yelled at the pharmacy when they were late with Aaron's tacro.

To Callie, the only child life specialist Aaron liked--a true BYU fan through and through. She helped us decorate his room, asked him silly questions, had him out of bed playing basketball, and threw an awesome going-away party. It was unusual for Aaron to express any sort of fondness for anyone, but he was quick to tell people about Callie and how she was the best child life specialist ever. He always lit up when she came into his room.

To Rai, Aaron's nurse on transplant day. The day before, she sat down beside me and went over every single medication on Aaron's long list, explaining why it was being given, what it was for, and how often he was getting it. She also ate a piece of pie with the rest of our family to celebrate Aaron's transplant while Aaron snoozed away, oblivious to the world.

To Megan, a night nurse we only had one time, but it happened to be on Aaron's hardest night in the hospital. I wasn't there, but Mike said she was so kind to him, even as he was wailing inconsolably. She came back several nights later, even though she wasn't assigned to Aaron, to cheer him on when he shaved his head.

To Kathy, who charmed me from the beginning with her Boston accent (I may have covertly recorded her talking, just so I could listen to it again). She had worked at Primary's for over 25 years and was there for the inception of the bone marrow transplant program. She was a wealth of knowledge, and I consulted her about things even on days when she wasn't our nurse. She was always very interested in whatever Aaron was doing, cheered him on when he was playing hospital trivia or bingo, and congratulated him on every calorie he ate. She also told the best stories. Oh, and did I mention that she played roller derby, traveled all over the world, and was also a knitter???

To Dave, who had the heart of a teacher. He explained every cell count and metabolic number--printing out labs, pointing out trends, and circling important numbers. He used data to relieve my fear and anxiety. He taught me how to do a dressing and clave change. He also didn't get offended when my kids were puzzled (but mesmerized) by a "boy nurse."

To Emily, Mike's favorite night nurse: practical, efficient, and nice. She provided the clippers (and moral support) when Aaron's hair was falling out and it was time to shave it off. And she found the perfect BYU hat on the tree stand and brought it to Aaron.

To Amanda, our very favorite tech, who was just weeks away from graduating from nursing school and being hired as a nurse at Primary's. When I told Mike that she was almost a nurse, he was not one bit surprised. She handled all of her tasks with so much confidence and skill but never seemed like she was above the most menial tasks. She is going to be the best nurse.

To Allison, our nurse on our last two days at the hospital. I still remember the text Mike sent me on the morning she was assigned to us: "You are going to like our nurse today." And I did. She was very thorough in all of the discharge instructions, coached me through another dressing and clave change,  and made sure we were well-prepared to go home. I think we had pretty similar personalities and actually could have been friends in real life.

To Brooke, who has come to our home nearly every week in the last two-and-a-half months. Because, in spite of all the training I had from Dave and Allison on caring for Aaron's central line, I  still feel more at ease when a nurse does it. It's pretty amazing that a nurse will just come to your home. Before this happened, I never knew that such services existed. (It's really too bad that they won't let the home health nurses draw labs too--Brooke told me today that they can for every other patient except for bone marrow transplant kids.)

Although I have mentioned specific people in this post (and felt a little emotional seeing all of these pictures in one place), it is really meant to be a tribute to good nurses (and other medical professionals) everywhere. My gratitude knows no bounds.

On the Horizon

Dec 15, 2019

In the world of bone marrow transplants, Day +100 is a big deal.

A couple of months ago, we said, "I wonder what the date is for Aaron's 100 days? It must be right around Christmas." We consulted a calendar and were delighted to discover that Day +100 landed exactly on December 25th.

For leukemia patients, I believe Day +100 is when they start being weaned off of the anti-rejection drug. They need their immune systems back up and running to be able to fight the cancer.

But Aaron doesn't have any cancer to fight, so he will continue to stay on tacro (the anti-rejection drug) for an additional three months before beginning the three-month weaning period. With aplastic anemia, it takes longer to fully restore and replenish the bone marrow, and so the extra months with tacro help give the body time to do that.

But even though Aaron won't enjoy any change in that drug, Day +100 is still an important milestone for a number of reasons:

1. The risk of GVHD (graft-versus-host-disease) drops significantly after the first 100 days. Up to this point, Aaron has not shown a single sign of it. (The risk will increase again when he comes off of tacro in the spring).

2. Aaron has stayed almost completely healthy during these 100 days. This has allowed his body to focus on blood cell production instead of fighting infections.

3. This past week, the BMT team took him off of two medications: fluconazole (given to prevent fungal and yeast infections) and ursodiol (used to protect the liver). I'm not sure how they decide it's the right time to discontinue these medications; his blood counts have changed very little in the last few weeks, so it must have more to do with the passing of time than cell production.

4. This coming week, we are going to try to transition Aaron from IV magnesium to oral magnesium. This is in preparation for . . .

5. . . . the removal of Aaron's central line! We don't have an exact date yet, but if everything continues to go well, his line will be removed sometime in the next two weeks. We are all excited for this one.

6. Most bone marrow transplant patients we know had almost all of their food restrictions lifted at Day +100. The doctors have not talked about this with Aaron yet, so we're trying not to get our hopes up (but I still might have googled "restaurants open on Christmas Day in Salt Lake City" just in case that information proves useful).

7. In the next couple of weeks, Aaron will get to redo a lot of the tests he did before his transplant (pulmonary, EKG, auditory, etc.) to see if he sustained any damage from the chemotherapy.

8. Aaron's frequent clinic appointments will drop from twice a week to once a week.

9. We might be able to relax our rules about isolation. Aaron certainly hopes so because there are a couple of family Christmas parties he desperately would like to go to. However, I'm hesitant to even wish for this or make any sorts of promises since he is unfortunately reaching Day +100 just as cold and flu season is getting into full swing.

No matter what though, 100 days post-transplant is a huge achievement, and I know that Aaron will look at any gain, even very small ones, as the best Christmas present ever.

A Little of This and That in November

Dec 8, 2019

I noticed a distinct decrease in the number of photos I took this month. This always happens to me when the light starts to fade with the season. I find that the only really good time to take photos is between the hours of 11:00 and 2:00, and I almost always miss that window. Even so, I still managed to snap a few to go along with all of the things we had going on in November, including . . .

Preferring . . . Mike. Ian is a daddy's boy through and through, and it's been that way for at least the last nine months. He tags along with Mike everywhere--to the store, to do yard work, to make dinner, to take a nap. If Mike is around, Ian basically never chooses me for anything. He wants Mike, and only Mike, to get him dressed, read him a story, change his diaper, get him lunch, or put him down for a nap. Sometimes it drives me crazy because it would be much more convenient for me to get him, say, a drink of water, but even the suggestion causes him to scream for Mike. It's only when Mike goes to work that he finally acknowledges me. It's good I'm at least number two.

Making . . . a Christmas list. Clark has been getting big ideas for what he wants for Christmas. So far his list includes a grappling hook, jet pack, and vending machine. My other kids have always struggled with thinking of things they want. (Bradley almost always asks for something he already has.) But Clark doesn't have any problems coming up with ideas. However, he might be severely disappointed come Christmas morning.

Wishing . . . for a bike path. It's one thing that Salt Lake really needs. I've been wanting to ride my bike more, but sharing the road with cars makes me nervous. We have one path that was put in a few years ago, so Mike and I finally tried it out earlier in the month. But I was disappointed that it hugged the freeway the entire time, and it wasn't very long.

Going . . . to a high school play. My nephew was in the orchestra (on the piano) for his high school's production of Joseph and the Amazing Technicolor Dream Coat. I took Bradley and Maxwell to see it, and we loved it. In fact, on our way home, we turned on the soundtrack of the Broadway production of it, and we all agreed that we liked the voices of the high school kids better than the professionals. Steven came over and talked to us during intermission, and I can't tell you how grateful I am that my kids have this amazing cousin to look up to.

Exercising . . . consistently. At the beginning of the month, Mike and I decided it was time to begin a consistent exercise routine. We completely let it slip during the last several months, and we were starting to really feel it. We also decided to cut way down on sugar and treats. Since running outside isn't much of an option for me (I hate running in the cold and dark), I've been looking for some workout videos, ideally that can be done in twenty minutes or less. (One of the big deterrents for me with exercise is that it takes up time that I would rather be spending on something else. I want to get my heart rate up, sweat a little, and be done with it.) While doing a search on Amazon, I found a series of videos from Maggie Binkley, and I love them. They are pretty much exactly what I want: short and intense, and I love that she looks like a normal human and isn't trying to show off her body.

Judging . . . Reflections. I was asked to be a judge for the music entries in Reflections (a national school-wide competition celebrating the arts). My kids, who have participated in Reflections for years, were very impressed: "Wait, you're judging Reflections?!" I think it maybe dampened their confidence in the competition if someone as ordinary as their mom could be a judge.

Choosing . . . to be baptized. Due to Aaron being in the hospital, we had to postpone Bradley's baptism by several weeks, but it finally happened. We got permission for Aaron to attend, and he was even able to be one of the witnesses. We had some of our extended family there as well, although many chose to stay home because of colds and other illnesses, which we appreciated. My brother, Gordy, and our nephew, Steven, both gave talks; Mike baptized and confirmed Bradley. It was simple and quiet, and Bradley was radiantly happy.

Learning . . . about the new children and youth program in my church. For the past year, we have known that the Church was planning to discontinue their participation in the scouting program and replace it with a new endeavor for 8-18 year olds. We finally learned more about it this month, and it is fantastic. It's basically exactly the kind of program I would have designed myself. It is goal oriented, dividing up personal development into four categories: spiritual, intellectual, social, and physical. It is the type of program that can be universally applied no matter where you live in the world, what your economic status is, or what your home environment is like. It can be very individualized based on each person's own needs, talents, and desires. I love it. And I'm so looking forward to helping my boys with it and doing it myself. (That said, my heart tugged just a little when we had our final pack meeting this month. I know many boys and men who have been richly blessed by the scouting program . . . including my own sons, dad, and brothers.)

Selling . . . his truck. After five years of loving his perfect old truck, Mike decided to sell it. It was having some problems that he didn't feel were worth fixing, and he was kind of tired of driving a gas-guzzling, difficult-to-park truck to work every day. Instead, he bought an equally old Toyota Avalon from his little sister. Although the truck went to a good home (a cowboy boots clad teenager with a brand new license who loves to work on cars), Mike instantly regretted his decision. He has loved having a truck for hauling stuff around, and he's already missing it. I'd be surprised if he doesn't break down and buy another truck in a few months.

Waiting . . . for the leaves to drop. Every year it's the same thing. Our giant maple tree in the backyard just hangs onto its leaves while the weather is nice and then finally drops them all when it's December and no one wants to think about raking leaves anymore.

Playing . . . in the first snow of the season. We got our first real snow (meaning that it stuck to the ground and had to be shoveled) the week of Thanksgiving. It came down in big, fluffy flakes, and Aaron stood at the front window and said, "This is filling me with joy!"

Saying . . . no. If there's one thing that has changed in the last few months, it is that we have become very good at saying no. No to play dates, family parties, activities, favors, and requests. There have been a few things that have sneaked in with a yes, and those have been very intentional. This is just the phase we're in right now. We still appreciate being asked, but chances are, we'll have to say no.

Cooking . . . a Thanksgiving feast all on our own. For the first time ever, we didn't go anywhere for Thanksgiving, and we didn't invite anyone over either. It was just Mike and me and our boys. We decided it was just too stressful (for us and anyone else involved) to go somewhere. I thought it would feel a little lonely or too quiet or overwhelming to be solely responsible for all of the food. But it was heavenly. As we were planning the menu, we asked everyone for their favorite dishes. Then we divided it up, and each one made something (and okay, Mike filled in all of the gaps). Aaron made key lime pie, Maxwell made mashed potatoes, Bradley made a cheese ball, and Clark arranged the relish tray. :-) As we all sat down around the table, Clark asked if we could hold hands for the prayer. We did, and it was such a tender moment for me. We were unified in our desire to support and love Aaron, and we felt joy in sacrificing our regular traditions. I squeezed the hands of Clark and Ian and looked at the faces of everyone else and felt so grateful that they are mine. My one regret of the day was that we didn't have any sweet potatoes because I am the only one who likes them, and I didn't think I could eat an entire dish on my own. But the holiday didn't quite feel complete without them.

Having . . . dinner at Mike's parents' house. This has felt like such a treat for us, especially Aaron. We feel like it's a safe place to take Aaron since it's just Mike's mom and dad, and we know they'll tell us if they're sick. Plus, they live fairly close to us, so it's easy to go and be back home in a couple of hours. It's been so nice to have a change of pace, especially on Sundays, which can feel a little stifling.

Watching . . . the new movie about Mister Rogers. I loved it. If anyone ever finds out something bad about him, please don't tell me about it, okay? I like thinking that there was someone so genuinely good in the world.

Creating . . . a new game. Mike and the boys have been hard at work developing a new game that uses a combination of dice and a board. They tell me it's a little bit like Stratego. Chances are if we know you in real life, you have been roped into playing it as they try out new rules and tweak the game play. Don't worry, Maxwell already has big plans to manufacture and market it.

Making . . . a Christmas playlist. I spent way too much time over the Thanksgiving break gathering up songs for a playlist for this Christmas. But it was worth it because I landed on a great blend of new and old, sacred and fun, and we've been listening to it almost nonstop ever since. 

And I guess that wraps it up for another month!

Aaron's Vice

Nov 30, 2019

Many of you have asked how Aaron is coping with being home all day every day.

I'm not saying he doesn't get bored or lonely. He does. But the truth is, he is a homebody at heart. He always has been. Getting out to go to the hospital twice a week and an occasional visit to his grandparents' house is enough to keep him from going stir crazy.

No, the issue for Aaron is not lack of company.

It's food.

Ever since Aaron's transplant, he has been on a low-microbial diet. Simply put, this means that he has to avoid foods that have a higher chance of or are more prone to containing bacteria.

Things like certain fresh fruits and vegetables with lots of surfaces or crevices, making them difficult to wash (think broccoli, grapes, raspberries, pineapple, or lettuce). Also any foods that have been cooked and then later reheated. Or foods that never reached 160 degrees F in the first place.

He has his own individual servings of butter, cream cheese, ketchup, barbecue sauce, milk, peanut butter, salt, and anything else that would normally come from a communal jar or jug accessed by lots of people over the course of several days or weeks.

And finally, and this is the big one for him, he has to avoid all food from restaurants, bakeries, ice cream shops, or fast food joints. It is impossible to know for certain how this food was prepared, how long it has been sitting out, who has accidentally sneezed on it, etc. So it is just easiest to skip it all.

Although there is some debate about whether this type of diet is necessary or successful (and even the nutritionist had a hard time giving a clear, definitive list of do's and don'ts), it makes sense that a person with a compromised immune system like Aaron's would do well to take precautions to avoid bacteria.

I knew this was going to be a sore point for Aaron from almost the very first day.

He had been in the hospital less than 24 hours when his Grandpa Paul swung open the door to his room with a smile on his face and a pink box in his hands. The box was from Mrs. Backer's Bakery, and it was filled to the brim with all sorts of delectable pastries.

It is a well-known fact that if you're in the hospital, you can count on Grandpa Paul to provide the baked goods.

Aaron hadn't been excited about one single thing on the hospital menu, but when those pastries were plunked down on the table next to him, he said, "Those smell so good." I tensed. It was my first time having to deny him food, and I didn't want to do it. I stalled for time: "Well, Aaron, I think we better check with the nurse . . . "

Tracie broke the bad news in one swift blow, "No, I'm sorry, you won't be able to eat those."

Grandpa Paul tried to reason with her, "The pastries were in a glass case! I watched them take each one out! They were wearing gloves!"

But it was no use. Tracie wouldn't give her permission, and I knew I couldn't be the one to condone breaking the rules. The pink box was tucked away out of sight, but Aaron's face had gone impassive. He pulled the blanket up to his chin and turned his back on us, but not before I glimpsed his eyes, blurry with tears.

That night, I took the pink box home. The other boys crowded around me, curious about why they were getting a treat. When I explained, Max said, "I wish you hadn't told us. I don't feel like eating any of them now."

Ever since that day, food has continued to be the one thing that can trigger Aaron's emotions faster than anything else.

In the hospital, it was a frequent source of contention between the two of us. I coaxed him to order something from the menu; he countered that he wasn't hungry; I ordered something anyway; he refused to eat it because he "didn't want it in the first place."

We tried to keep him well-stocked with a variety of foods besides the ones that were on the limited hospital menu--cereal, cookies, candy, crackers--anything that would boost his calorie count each day. I think the hospital is probably the only place where you can eat a king-size package of Sour Patch Kids and have three different people compliment you on your amazing appetite.

One of the things Aaron craved in the hospital was a big, soft pretzel. He had had one when he was in the hospital the first time following his diagnosis, but it was one of the foods that had been removed from his menu once he'd had his transplant. We were allowed to make food at home and bring it to him, so I spent one afternoon carefully whipping up a batch of soft pretzels.

It was probably the most stressful thing I've ever baked. I banished all of the kids from the kitchen and sanitized every surface and probably washed my hands a dozen times before I was finished. After all of that, I was sure I'd get to the hospital and he would say he no longer felt like soft pretzels or he would take one bite and tell me they didn't taste right.

But he didn't. Instead, I watched him gobble down two big pretzels, one after the other, and then lean back in his bed with a satisfied smile. I decided it was worth the stress after all (not to mention that they were worth 300 calories).

Since we've been home, it's been much easier to avoid food angst. But it flares up every time someone brings by caramel apples or homemade cookies or fast food, and he watches other people enjoy something he can't have.

This week we celebrated what is arguably the biggest food holiday in America. We decided early on that we would spend it at home, rather than risk the germs and bacteria prevalent with a larger group. Doing it at home meant that we didn't have to deny Aaron anything. He ate the turkey, rolls, and mashed potatoes with gusto and finished it all off with a piece of key lime pie that he had made himself.

We know we should feel lucky that this is just a temporary situation and not a life-long food allergy. But still, that doesn't make Aaron any less excited to know that probably soon, maybe even in just a few weeks, some of his beloved foods will be restored: a Jimmy John's sandwich, soft-serve ice cream, a handful of raspberries.

Or maybe even a pastry from Mrs. Backer's.

Oh wait, I need to tell you the rest of the story.

A week later, Grandpa Paul swung open the door to Aaron's hospital room again. Once more, he was smiling, and this time his arms were weighed down with, not one, but two pink boxes from Mrs. Backer's.

My mouth dropped open. Had it somehow not been clear that Aaron couldn't have freshly made baked goods from a bakery? This was too cruel, and I said (through gritted teeth): "Aaron can't have those. Remember????"

Grandpa Paul had a twinkle in his eye. "Oh these are going to be good, Aaron. I think you'll be able to have them. Open the box."

Aaron opened both boxes and found them crammed full of Twinkies, Little Debbies, Hostess cupcakes, and Oreos. We all burst out laughing.

"What do you think, Aaron? Will those work?" Grandpa Paul asked.

My irritation turned to gratitude. It was such a small gesture, but with food being one of the things that brought Aaron joy, it meant a whole lot.

I just hoped Grandpa Paul hadn't told Mrs. Backer's what he was planning to put into those boxes!

A Brief (But Happy) Update

Nov 24, 2019

Things began to improve almost immediately after I wrote last week.

Aaron was down for two days, but by Sunday, he felt much better and ended up making a full recovery. Even though it was nerve wracking to have him sick, I took it as a very positive sign that his body fought the illness on its own. He took his new bone marrow for a test drive, and it passed with flying colors. 

I took Aaron to his appointment on Tuesday, and his blood counts reflected the stress over the weekend. His neutrophil count had taken a hit and had dropped quite a bit. But surprisingly, his platelets, usually so melodramatic, had gone up since Friday. As expected, his red blood count had continued its downward trend and was sitting at 7.4, so a transfusion was in order. 

This made for a long day: they had to take a type and screen first, which analyzed Aaron's current blood type so they could get a compatible match (lately, he's been getting O+ blood). It took a couple of hours for those results to come back. Then Aaron had to be premedicated (just with Tylenol and Benadryl) because he has had a slight reaction to transfusions in the past. Finally, they began the transfusion which ran over two hours, followed by another half hour of observation. Then he could finally go home. 

Here's a little interesting fact we've learned about blood transfusions: When the number of red blood cells in the body is low, a person's heart rate goes up. Because red blood cells carry oxygen, the heart has to work harder to maintain the same oxygen level throughout the body regardless of how many red blood cells are present. So when Aaron gets a transfusion, his heart rate is monitored, and as the blood goes into him, his heart rate gradually goes back down to balance out the increase in oxygen-rich cells.

I asked the doctor if I should be concerned that, at Day +69, Aaron is still getting blood transfusions, and he said no. Right now, Aaron's body has been focusing on platelet and white blood cell production. When those are both solid and stable, it will put more energy into making red blood cells. 

When Mike took Aaron to his appointment a few days later on Friday, his white blood count had recovered a lot from Tuesday. This was more good news: Not only was Aaron able to recover from the illness, but his bone marrow rebounded after being depleted. 

Elder Neal A. Maxwell said that we can know that God is aware of us by "honestly counting the blessings and bestowals of His grace in our lives." Aaron's regenerating cells are one of those blessings--made possible through a miraculous body, knowledgeable doctors, and countless prayers. 

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?
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