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!

Proudly designed by Mlekoshi playground