Exciting Update 🔔May - at home 

May 2

Avry is so excited to be home from the hospital because she’s feeling so well! 

We came home once again with an intense med schedule. Around-the-clock meds every four hours, with what feels like half a dozen different medications all with different dosages and timing.

A few months ago  at clinic, Jake and I were both there while the doctor and I were reviewing all of Avry’s meds. I just sat there rattling them all off from memory (anywhere from 11 to 15 Meds) — names, dosages, timing, adjustments, everything. Jake just stared at me.  As we were walking out of clinic he looked at me and said, “Are you sure you don’t want to go back to school to become an oncologist? Because the way you just rattled all of that off plus figured out how to tweak Meds… I feel like you’re wasting some talent.”

I laughed and told him, “I don’t know if it’s talent or just psychopath-level memory at this point because I somehow remember every detail without writing it down.” 🤪

Then I told him, “Also… why do you think I’m so tired and no fun any more?! My mental capacity is stretched so thin and I’m absolutely exhausted.”

Honestly though, it made us laugh so hard. Somewhere along the way, you realize cancer parents become part nurse, part pharmacist, part scheduler, part advocate, part doctor, and part sleep-deprived zombie running purely on adrenaline and love. 😂

But I can’t believe that Avry is doing so well. I say  this carefully not to make fun of a very serious situation, but we call Avry our crack baby. This poor girl is on so many narcotics she can’t help herself. Her eyes get big and she talks really fast. She can hardly get the words out. And she’s so funny that Trace just can’t help but roll on the floor  laughing! When I was telling the palliative care team - I feel like she’s almost on too much narcotics  but also I don’t want to  go back to her screaming in pain for hours on end because she doesn’t have enough pain medicine. So I will take this over that but also I just want to make sure she’s safe. We’ve never been able to come home from the hospital and her be running around and Busy right off the bat. Usually it takes a week or two till she’s recovered.  Jake reminded me though once she’s off of the narcotics, she will sleep again  because there’s always a crash when you wean off of so many medicines.  

This week has mostly been half days and fun activities at school for Trace since it’s the final week. Somewhere in the middle of all of that, grief hit me again out of nowhere. I’ve been processing the mom guilt I’ve carried over the past year — the ache of feeling so absent from Trace’s life while trying to keep Avry alive.

I know in my heart I did the very best I could. But I have never wanted so badly to be in two places at once. This boy has been forced to grow up in ways that were never fair. He’s had to be mature and responsible far beyond his years, and somehow he has handled it with so much grace. (He’s told me many times that people feel so sorry for him for being so strong /And his reply is always ‘ well what choice do I have?’- if that isn’t a chip off the old block 😉)

I’m so proud of him. I just hate that this was ever asked of him.

This week his class planned a trip to a little local zoo, and the second I heard about it I jumped at the opportunity to join them. I knew it would be a stretch for both Avry and me with her medication timing and energy levels, but I thought worst case scenario, we would just leave early. And honestly? It ended up being such a special day.

Trace was so surprised at how well Avry did. I’ve said it before and I’ll say it again — it’s called pain management, and it is AMAZING.  She was definitely weak and wobbly, but she insisted on getting out of the stroller and walking with Trace helping her along. Watching the two of them together… I could have stood there forever just staring at them. Another miracle.

By the time we made it through the zoo she was exhausted and very ready to head home, but we did it. We actually did it.

I had told Miss Sofia I would take care of lunch, but I knew we couldn’t stay for the park afterward, so they grabbed lunch on the way while we headed home to rest.

But oh… what a special day it was. 🤍

This week I’ve been thrown smack back into mothering (a little more normal mothering and less medical mothering) but the beautiful part is that I get to mother both of my children, and oh my goodness, I am thrilled to the gills about it. 🤍 Normally after we come home from the hospital, I have people helping with all the running around while I stay home with Avry. And while I’m incredibly grateful for the help, it can also feel so isolating to always just stay at home. But this week? She’s feeling so well that I’m jumping at every opportunity to do all the normal little things.

Tuesday morning we went to the zoo, then came home for naps, and by the time Trace got home from school we were already running out the door again for piano lessons followed by baseball. And I just keep carrying around this permanent smile because… I get to do this!!!

These tiny little snapshots of ordinary life  stop my heart in the best way because there were moments this past year where I truly wondered if we would ever get to do this again.

Miss Darlene, our piano teacher, is just wonderful with Trace. He’s only been playing for a couple of months, but he’s such a natural and picks it up so quickly. Today while Avry and I sat on the couch listening to him practice, she leaned over and whispered, “Mom… please teach me how to play piano.” 

Trace is learning whole notes right now, but he struggles switching from shaped notes (which is what he  learned at school) over to traditional notes. So I’ve started racing him with flashcards. He earns a peanut M&M for every row he gets right. 😂 I’ll be honest — I am incredibly rusty with music. But I will absolutely race him at piano practice for that little peanut M&M motivation. Not because I’m obsessed with peanut M&Ms… but because a little healthy pressure and encouragement is honestly so good for him. And watching him grow in skill has been one of my favorite things. 🤍 Avry did so well at baseball and was proud of herself that she was able to stay the whole game. It’s so much fun to hear her little voice cheering from the sidelines for her brother! Miracles upon miracles!!

May 6

Wednesday was Clinic day  and the last full day of school for Trace! We are doing a very slow wean of meds  and this morning was the first of a different dosage. I had everything ready to go out the door for the Clinic and Trace was helping me get everything done in the morning because we needed to head out the door before he had to leave for school. Bless Charity she offered to pack his lunch for the last week of school and take care of most of his rides (although I jumped on the opportunity as much as we were home because I didn’t want to miss this last week of taking him to school and picking him up)  What a huge lift! Just before Avry and I were ready to head out the door, she projectile vomited🙈 (mind you I do not have the energy I normally have. I have been dragging myself around. It’s taking my body longer time to get back to what it was then I would like) poor girlie! She did so well at holding her tube in so that didn’t come out along with the vomit but it was all the feedings from during the night, and all the medicine I had just given her this morning 🙈and I can’t remed for at least 30 minutes.  So I knew she would be in pain And we had to get left for the  Clinic clinic to make our appointment on time. I quickly cleaned her up and left the big pile of stinky mess on the kitchen floor and told Trace to not worry about it-that I’ll clean it up when we come home! 

We rushed out the door and we’re 20 minutes down the road when I realized I hadn’t changed🙈 well here we go stinky mother alert walking through the clinic smelling like vomit! 🤮 At this point, I really just wanted to go curl up in bed and say forget it!!  To boot, we  sat in traffic for over two hours when it normally only takes us 50 minutes!  Thank God, Avry fell asleep! I knew she just was not feeling well at all.  I called ahead and let them know. We are going to be very late because we were sitting in traffic but also we were halfway there— but halfway doesn’t mean much if you’re only going 5 mph!  I really did not want to try to turn around and come in tomorrow because  we were halfway there 🥹Bless them! They made room in the schedule for us to come a bit later so we continued on our way and eventually got there!  Avry has not vomited in quite a while and it took me right back to vomiting up to

20 times a day… oh dear God, how did we do that??? 🥲

We finally arrived at the clinic, and Avry was hypertensive and very tachycardic. So we ended up staying at the clinic for a good part of the day. She needed fluids, monitoring, and just a little more tweaking to her wean.

Yesterday I had groceries scheduled to be delivered early that afternoon thinking we’d already be home , but we weren’t going to make it home in time, so once again—bless Charity—she ran over and took care of all the groceries and stocked the fridge for me. I had so much laundry to do because we’ve been running nonstop this week and still trying to catch up from last week at the hospital. She saw my mountain of laundry sitting there, bless her heart, and she put a load through and folded some too!!!

By the time we finally got home from clinic, I felt so overwhelmed, tired, and exhausted. I remember thinking, Who in the world do I think I am trying to do all of this on my own? 😰I just wanted to collapse in bed and cry myself to sleep. But there was still vomit on the floor to clean up, groceries to put away, dishes in the sink, and mounds of laundry waiting for me. Oh, I just want to feel

myself again!! I still feel so weak - Seeing what Charity had done gave me courage… but honestly, not enough courage to do much besides crawl into bed. So Avry and I went and took naps together. (of course after I change my stinky vomit clothes.😣)  My hormones are still so confused right now. For the past two weeks I haven’t been able to sleep much at all, but this week I feel like I could sleep and sleep and sleep. Any chance I get to rest, I’m taking it. And honestly… it feels so good. And from the bottom of my heart -I am so so incredibly grateful for the mess because it means that we’re living at home and mess means life!! (there were many days that I popped home from the hospital and the house was in perfect order because no one was living there and I remember how sad the stale and quietness made me feel, so I will happily deal with a massive mess any day/even though in the moment, it can be overwhelming when you don’t have energy or feel well!) 

May 7

Today was Trace’s official last day of school!

I got this crazy brain wave to make it extra special for the kids, so Avry and I ran to grab balloons and string. We blew up a whole bunch of balloons and tied them onto long strands of string to decorate our vehicles.

Us school moms met up a little early just down the road to tie our balloons to the vehicles and as soon as we figured the kids were probably out on the porch waiting for pickup, we drove into the school parking lot together with our lights flashing, horns blowing, balloons bouncing everywhere, and all of us waving wildly like maniacs in a parade. We made a big circle around the parking lot while the kids watched and laughed.

Honestly, it was such a simple thing… but it felt like the perfect last hurrah to celebrate the end of the school year. The kids absolutely loved it, and for a few minutes it just felt light and joyful and normal in the very best way.

I could have cried buckets of tears today just over the fact that I got to be part of this… his last day of school. Avry and I got to do it together.

When Trace ended third grade and started fourth grade, we were in the hospital. Life felt so uncertain then. Everything revolved around survival and treatment and trying to hold our family together through the unthinkable. There were so many moments I wondered  if life would ever feel normal again. Miracles upon miracles! 

Tonight was the school program and we went as a family!!! (last year Avry had ended up in the ER because Avry has spiked a fever so neither Jake or I were there💔 and Trace was so brave and stood up there and sang anyways!)  all this week I just been praying that we could all get here together… I wasn’t sure how Avry would do because  she still high as a kite most of the time from all of the painkillers, she is still on. I took lots of activities for her to do so she kept busy with coloring and some of you have sent the sweetest Bible story sticker books-and she loves them so I took one of those along too. Loud noises really bother her and that’s just from the sensitivity of being on narcotics (I know it doesn’t make sense because she’s lost so much of hearing but it’s the vibrations and the sensation)  so I took the new headphones along that Jake had bought that really help block out the noise. She did so incredibly well and lasted all evening!!  The program was so beautiful. The songs were so carefully chosen, and it felt as though the theme was our personal theme over the past year. 😭💝 The skit was absolutely adorable 🤣 Miss Sofia has been such a godsend through all of this and holds a pretty big place in each of our hearts for her kindness and patience and forbearance over the past chaotic year!  

May 8 

(I can’t type May 8 without honoring my grandma because today would’ve been her birthday 

And she was my first best friend as  a little girl and I wish everyone had the privilege of having a grandma like her) 

Tonight was Trace’s very first piano recital! The room was packed with probably 25–30 people, and he did so well. It inspired him to keep playing seeing the other boys that are much older than him playing  piano. He’s not jumping up and down Every day to go practice but he’s a natural and it gives him such a good foundation for Music- but he still begs to switch to another instrument. But we’ve adopted the rule Jake’s family had growing up: you have to stick with the same sport and the same instrument for at least three years before moving on to something else.

Honestly, I love that rule because it teaches so much more than just the skill itself. It builds discipline, perseverance, confidence, and the ability to stay with something long enough to become good at it instead of quitting the moment it feels hard or inconvenient. Dr. Paul is an incredible piano player, and he’ll often sit down and play in hotel lobbies and other random places. People constantly come up to him saying things like, “I wish I could play like that.” And he always tells us the same thing — it was his mom. He didn’t necessarily enjoy practicing piano as a young boy, but now as an adult, he thanks her all the time for pushing him to stick with it because it became a skill he treasures and uses regularly. There’s something so powerful about giving children roots of discipline before they fully understand the gift they’re receiving. — just another miracle tonight of our family all going together to watch Trace perform!! 

May 9

Today was the school picnic, and Avry has been looking forward to this for weeks already. Finally the day arrived where she got to wear her yellow dress and matching hat. I had told her she was definitely going to need her hat because chemo makes her burn so easily, and we have to keep her out of the direct sun. She also doesn’t tolerate heat very well right now because of all the medications she’s on — it just makes her feel so rotten. But Jake already had a solution ready. He loaded up our canopy tent and a huge fan so we could still sit outside comfortably and watch softball.

Avry sat under the tent and colored for hours. I started buying printable coloring pages off Etsy for super cheap and printing them at home because this child probably goes through close to 60 pages a week 😂 But honestly, it’s perfect because now I can find the exact designs she loves most. (you guessed it-watermelon, flamingos, and rainbows!!) 

I didn’t need to bring anything for lunch, which was so thoughtful of them not to put me on the list. So instead, I brought Popsicles and stirred up iced coffee to serve everyone in the afternoon.

Trace played his heart out until evening. Some of the ladies came and sat with Avry for awhile, and she chitchatted a mile a minute while coloring beside them.

Such a good day. Truly, this entire week has felt like such a gift.

May 10 

Mother’s Day 

I never imagined motherhood would be this hard.

I never knew love could make you hurt this much.

Being able to share blood with other humans I know has always been a dream of mine. And up until a year and a half ago, being a mother was my favorite thing in the world. It was the thing that completed me. The thing that made the rest of life come full circle.

But in the past 14 months, motherhood has been the hardest thing I’ve ever encountered.

I never imagined being a mom would mean having to choose between baseball games or blood transfusions… school drop-offs or chemo… tucking Trace into bed or holding Avry through sedations and procedures.

Over this past year, I’ve never wished so deeply to be in two places at the same time.

This Mother’s Day, I feel more broken and cracked open than I ever have in my entire life.

And in the very same breath, I cannot stop looking at our two beautiful children without allowing their presence to take my breath away.

Somehow motherhood has become both the deepest ache and the greatest gift I have ever known.

Today my heart grieves for the mothers who have lost their children to cancer…

for the mothers who had to learn how to keep breathing after burying pieces of their own heart.💔

And for the mothers who never got to kiss their babies earthside.

The ones who carried dreams, names, hopes, and love for little lives they never got enough time with.

Motherhood carries so much beauty, but it also carries grief so deep there are no words strong enough to hold it.

Today I’m holding space for the women whose arms ache, whose hearts remember, and whose love still exists even when their babies are no longer here to hold.

A mother’s love does not end with loss. But continues on—in memory, in longing, in tenderness, and in the sacred ache of remembering.  

May 11-16 

It’s the first official week of summer vacation, and I just cannot help but feel so much excitement for this summer knowing that, Lord willing, we should be home far more than we are in the hospital.

We get to have somewhat of a schedule again. At first, we will definitely be putting in some serious hours on the mattresses 😂 My children are not children who naturally sleep in. Two summers ago — the last summer we were actually home — they still got up at 6:30 every morning, and I remember wishing they’d sleep just a little later. But this summer they’re older now, and honestly my goal is simply for all of us to be up and going by 9:30.

I have never been someone who could sleep past 7 o’clock in the morning… but that is rapidly changing. Our bodies are longing for rest, and that is exactly what we are going to give them. For the past year and a half, all we’ve done is wake up throughout the night over and over again. Our sleep schedules have been chaotic. We’ve been running on fumes for so long.

I have so many ideas for what I want to do with the children this summer and ways I want to slowly implement routines again — something we really haven’t had much of for a very long time. I know these things will take time, but I still can’t help feeling excited.

This week we still have baseball to finish up. Jake is gone for four days this week, so it’ll just be the children and me at home. I’m honestly really excited to help get Trace back on track too. It’s hard to expect consistency out of a child when life itself has had very little consistency. Two years ago he was doing so well with baking, and this summer I really want to pour back into some of his cooking skills. Of course he has plans of riding along on the truck with Jake as much as possible, but I also know his little sister is going to want him home sometimes too. We won’t be doing formal piano lessons through the summer, but I still want him practicing weekly.

Taking the children back to baseball this week for practices and games has been so much fun. And … Avry’s bravery completely wowed me all over again.We got to the ball field, and it was hot — upper 80s, humid, sticky heat — and I immediately thought, there is absolutely no way she’s going to tolerate sitting out here. So we went to stand in line at the shaved ice truck thinking I would just get her some ice to suck on to hopefully cool her off. I had forgotten her sun hat and the sun was beating down hard, so I told her to go stand under a tree probably 50 feet away from me while I got her snow cone.

She did it.

I stood there and watched her walk all the way over to the tree by herself. Then she turned around and waved at me while she waited and kept her eyes on me until I finished.

And when I tell you this precious little girl has been attached to my hip, I truly mean it. This is a child who went from living a perfectly normal little girl life to suddenly living in the hospital for over a year — terrified all the time because she never knew what the next person walking into the room meant. Did it mean a needle? A painful exam? Another sedation where she had to be separated from me? Another scary procedure?

I have been her safe place through all of it.

And now… she’s slowly beginning to trust the world again.

Later we got our lawn chairs set up, and I brought along all her coloring things. The snow cone still wasn’t enough to cool her down, and she had worked herself into such a sweat that I honestly got scared she might pass out because these strong medicines just do so much to her  little body. I had brought a battery fan, but I left it in the vehicle. The vehicle wasn’t super close either.

And she let me go get it.

She sat there in her chair while I walked away. She didn’t scream. She didn’t cry. She wasn’t afraid I wasn’t coming back. She trusted me. As I walked away she hollered after me, “Mama, be careful!” 😂 When I got back, she was happily coloring away like it was no big deal.

I know moments like this probably sound so tiny to most people, but I’m telling you… they are everything. They are little glimpses. Little reminders. Sneak peeks that maybe — just maybe — we really are going to be okay one day.  (Jake recently reminded me that we need to be so careful as to not betray this trust that we are building.)  One of my favorite moments of the night was hearing her cheering her brother on from the sidelines while he was batting. He was so focused he wasn’t paying attention to her, so one of the coaches’ wives yelled at him, “Trace! Look at your sister!” 😂 Trace literally called timeout on the ballfield, ran over to the backstop, and waved and talked to her for a second before running back out to finish the game. Avry was proud as punch after that.

Then after the game, she insisted on helping him pull his baseball gear back to the vehicle. My heart absolutely swelled watching her. Because this is what she used to do two years ago before cancer stole so much from her little world.

Miracles on miracles.

She really is coming back to us. 😭💝 There’s nothing that melts me into a big puddle more than seeing them do life together the way healthy kids get to! Watching these two grow up together has been the most joy I’ve ever had. So for the past year, watching them have to be separated by life saving interventions  has torn my heart in ways I’m still grappling with.  I don’t know what the future holds but one thing I know is every single moment that I get to watch them fight and love and cheer each other on  and make a giant mess- beats  any day in the hospital holding my breath for them to just be able to be kids together again! 

May 13 Wednesday 

I took both the children to the clinic with me today. Avry just did so well with her brother along- there was no hysteria or any crying at all!! we are going so much slower on this narcotic wean but it seems like she is still in withdrawal..…ugh. 

There was something so sacred about this full-circle moment. Right before we went into the hospital, our sweet friend Cari sent us a “raise and release” butterfly garden kit. We watched the tiny caterpillars slowly form their chrysalis, wondering if by the time we came home from the hospital they would have transformed into butterflies yet. And when we walked through our front door… they had. They had just hatched.

Every day since, Avry has faithfully checked on them, feeding them sugar water and marveling that these tiny caterpillars became beautiful monarch butterflies. It felt especially meaningful because after transplant, Avry had become so self-conscious of her skin. The high-dose chemo left her skin bronzed, speckled, and mottled across her body. Her fingers, toes, joints, neck, and face all looked different, and she worried she would never feel beautiful again. I’ll never forget when Dr. Cohn gently reassured her that one day she would “metamorphize into a beautiful butterfly again.”

At the same time, Avry became fascinated with the process of caterpillars turning into chrysalis and then butterflies. One day she proudly explained the entire transformation process to me, and I started searching for caterpillars. Then Cari messaged and said she was sending some in the mail. Avry had been begging to release the butterflies, but I had a special idea: what if we released them in the healing gardens at the hospital? So this week at clinic, we carefully brought the butterflies with us and released them into the gardens. Watching those monarchs spread their wings and fly free in the very place where so much pain, healing, fear, hope, and fighting happened for our family… there are honestly no words for it.

It felt like a picture of Avry herself.  (every night she make sure that each of us take time to look at her beautiful skin as it is healing nicely 😍) A reminder that healing takes time. That transformation often happens hidden away in the hardest places. And that even after walking through unimaginable things, beauty can still emerge again. 🦋

We are planning to go into the hospital a whole week early this month due to the holiday kind of messes up the schedule a bit and we had the option to go in early and so we jumped on it because why not get it done?!  it is so hard to believe that we are saying this is the last inpatient stay that is scheduled!! This is her last dose of chemo and immunotherapy and we cannot say  that without tears!! I remember so well  15 months ago when they told us it would be next summer when we would complete treatment and how that looked  like, staring down a gunbarrel. We couldn’t look ahead because it was too daunting so we just kept doing the next thing in front of us. And here we are!!! 

I had in my mind that we would have one more dosage of chemo yet after this one, but because her body can no longer handle the really potent chemo they have decided to just not even do that last treatment of the lesser chemo by itself.  So that is why this makes it her last dose of chemotherapy! 

I marked it on the calendar on the fridge in big pink letters like I always do-but this time it’s extra special because I get to write on last hospital admission and every day Avry looks at that. 

The end of May, Avry will complete her final round of chemo and immunotherapy — round 10 overall, and post-consolidation round 5. In June, she will take one final dose of Accutane (the tracer medicine), and then at the end of June/beginning of July, they will repeat scans, bone marrow biopsy, and aspiration.

You guys… go read that again. 😭😭🙌🙌🙌

I truly cannot believe I get to type these words. Miracles on miracles !! Proof that when you just keep doing the next thing in front of you, when you keep showing up, when you stay faithful in the calling even on the days you want to collapse… eventually, morning comes in some form or another. 

The children talk about Avry’s big celebration almost every single day. Last month, Avry was already telling Dr. Mitchell which princess dress she plans to wear when she rings the bell and how excited she is for the bubble parade. 🥹

Our tentative plan is this: the day after Avry rings the bell, we plan  to rent a local facility and open it up as a drop-in celebration to honor Avry and our family coming through this past year. We would be so incredibly honored by your presence. We don’t have exact dates yet, but as soon as we do, we will share them.

I had almost talked myself out of doing a big celebration. But then I remembered how, during some of the darkest months, planning little details with Avry ‘ for when we’re all done coming to the hospital’  was one of the things that carried us through. It gave us something to look toward. Hope in tangible form. And not only that, Im so grateful for the push from close friends and our support group encouragement to push forward with it! 

And honestly… we so quickly rearrange our lives to attend funerals and gather in grief. I kept thinking that if the tables had turned, many of us would be gathering in a very different way. Which feels like even more reason to gather now — to celebrate life, healing, community, and the many miracles we have witnessed along the way.

As soon as we have concrete dates, we will let you know and send out RSVPs.  Again, we would be so honored by your presence- come spend a day with our family and celebrate this milestone  with us! 

Jake told me part of him wants to work nonstop this summer to make up for so much lost time and lost work over the past year. But another part of him just wants to go home, hold our little family close, travel, rest, and give our children beautiful memories together. He’s struggling a bit with the relapse statistics. 

The doctors told us that Avry has a 60–75% chance of survival at diagnosis, and the relapse rate is equally at 60 to 75% chance- which is why maintenance is such a rigorous three-year plan. It is far less intense than this past year, but it is certainly not nothing. 

I honestly just can’t even think about relapse right now. I’m feeling this tiny little bit of room to breathe and that is what I am choosing to give my energy to. 

We are going to first of all celebrate how far we’ve come!

And after the celebrations when we’re starting maintenance-we will again look at the cold hard facts.

I also know this: we cannot live constantly bracing for tomorrow’s fear. We have fought far too hard not to fully live today. So we will continue taking this one day at a time. We will continue to fight hard and love even harder. We will continue choosing joy, making memories, and soaking in every ordinary moment that once felt impossible.

And most of all, we will continue believing for God’s best and thank God for the time that he is  giving us! 🤍

-our story for God’s glory