Monday, March 2

 

We headed to the clinic early for our 8:15 appointment. Carol, Jake's step mom is here and got Trace to school.  

 

We were headed over to the hospital by 11 to be admitted and get immunotherapy started.  Jake left for work once we were settled. Dan was our nurse. We'd never had him before and he told me he 'jumped at the opportunity because the nurses all fight over who gets Avry and usually he doesn't  the chance.'  He was so so good to us! I judge that also by how Avry responds and she was very comfortable with him- which is a big deal since he's a guy!  He took time to observe and took time to go the extra mile to make her comfortable. He brought us a play mat and helped us get her over to the couch. Janessa brought her a floor puzzle she really wanted to do. It didn't take but an hour into the infusion and Avry was getting stiff and sore and getting down on the floor was difficult. She's hooked up '6 ways to Sunday' and it's very impractical to get out of bed where there are so many monitors and she's hooked up  from both sides. But bless his heart- when she asked, he jumped at the opportunity to

Help. He's one of the unsung heroes!  The puzzle was not an easy one with a similar pattern and colors all through but she was determined! About 20 minutes in, I noticed her face. She was in pain.  I asked her if she was and she said she was stiff but 'no mom! Don't tell anyone!'  

She will bite through the pain until the pain controls her and she is powerless. She does not  want the doctor to know that she's in pain because in her little mind that means they have to do an exam and it will mean even more pain.  About 5 minutes later, she was in so much pain she couldn't move. She took the last puzzle piece and cheered and then fell apart and cried like a baby.  I tried to pick her up but it hurt her even more. About then, Dan walked in and he helped with all the wires and tubes and we got her back into bed. She nestled down and cried in the most hurtful cry. They bolussed her a physicians bolus  to try to get ahead of the pain.  She loves ice packs on her legs and to be  wrapped up 'like a burrito.'  Wow what a rough start to immunotherapy!    

 

She wanted to craft so badly so I put on her earphones

And she listened to something it distracts her from the pain and she sat up and crafted. More like I crafted and she helped by times. The nerve pain kept her hands from doing what she wanted to do. She would try so so

hard! We did 15 crafts on Monday! In between, she would lay down and rest and then determined to keep going- sit up and whimper through cutting and pasting not succumbing to the pain.  She is the most determined little soul!  

 

She was pretty puffy and swollen. Which is to expected with immunotherapy. So miserable!  

 

They changed the rate on the fentanyl drip several times as well as the basal rate. This girl eats pain meds like candy. Her tolerance is so high and she can mask it well until she can't. Her blood pressure and heart rate are tell tales and very high.  It took her awhile to fall asleep. Last month they did the infusion during the night because that's usually when they do it since they are confined to bed and the nurse is in the room most of the 10 hours. We requested that they change it to daytime because she would stay awake for 10 to 12 hours straight at night. But even with a sleep Aid, she was wired. The antibody (immunotherapy drug) wires her.  

Avry finally fell Asleep around 4:30 after a very long night of trying to get on top of the pain.  

 

A few weeks ago I explained immunotherapy but for those who need a refresher:

 

Dinutuximab immunotherapy is a treatment used mainly for high-risk neuroblastoma in children.

In simple terms:

• Dinutuximab is an antibody medicine that helps the immune system find and attack cancer cells.

• Neuroblastoma cells have a marker on their surface called GD2.

• Dinutuximab locks onto the GD2 marker.

• Once attached, it signals the immune system to destroy those cancer cells.

 

Why it's used:

After chemo, surgery, and transplant, tiny cancer cells can still remain. Dinutuximab helps the immune system hunt down and kill those leftover cells to reduce the risk of relapse.

Why it's so intense:

GD2 is also found on nerve fibers, which is why this treatment can cause:

• severe pain

• fevers and rigors

• low blood pressure

• swelling or fluid shifts

That's why children often receive:

• strong pain medicine via (like morphine or fentanyl)  

• medications like Meperidine for rigors

• close monitoring in the hospital.

Even though the side effects can be intense, dinutuximab is used because it significantly improves survival in high-risk neuroblastoma by helping the immune system clean up microscopic cancer cells left after chemo and transplant.

 

Fentanyl is a very potent opioid pain medication—roughly 50–100 times stronger than morphine by weight. Because of that strength, it's usually reserved for situations where pain is extremely intense or not well controlled with the  standard medications.

 

In most children receiving Dinutuximab, hospitals typically start with continuous morphine (fentanyl in

Our case) infusions for nerve pain caused by the drug attaching to GD2 on nerve fibers.

 

However, some children like Avry experience much more severe neuropathic pain, and morphine does not control it well enough. In those cases, hospice comes in to help  switch to fentanyl because:

• It is much stronger and faster acting

• It can be tightly controlled through IV infusion

• It sometimes causes less histamine release, which can help with blood pressure or side-effect issues

 

So when a child requires fentanyl during dinutuximab therapy, it usually means their pain response to the immunotherapy is unusually intense, and the team is using a medication powerful enough to keep them comfortable.

 

Avry needing fentanyl simply shows how aggressively her body reacts to the treatment. 💔 It's the oncology team matching the level of pain control to what her body needs.  

 

—————————————————

Some days I'm just sad.

I don't mean dramatic.

I don't mean hopeless.

Just… sad.

Being a mom used to be my favorite title. It used to be the thing that made everything else worth it. It was playgrounds and sticky fingers and messy kitchens and bedtime stories.  

Now motherhood feels like vigilance.

I'm always on call. There is no shift change. No clocking out. Not even at night. Not even in my dreams. The moment my eyes open, my feet hit the floor and my brain is already scanning — breathing, fever, meds, schedule, labs. My body moves all day long and at night I don't fall asleep, I collapse. And even then, I'm still listening.

It's cruel.

Not because I don't love her.

But because love shouldn't have to look like this.

Some days I'm sad that we can't just go to the park without packing a medical bag. Sad that she needs a sun hat to shield her bald head so she doesn't burn up instead of gorgeously tanning like before. Sad that every morning there's more hair on her pillow. I try not to stare at it. I try not to make it sacred. But it feels sacred. Like evidence of a war she didn't ask to fight.

I'm sad her days aren't tea parties and daisy chains and picnics. Sad that her first question in the morning isn't “Can we play?” but “Do I have to go to the doctor today?”

And the one that guts me —

After the shots.

After the dressing changes.

After I've held her down so medicine can go in.

She looks at me with tear-streaked cheeks and asks,

“Do you not love me anymore?”

And something inside me shatters every single time.💔💔

Because love is the reason we are doing this.

But to her little body, love and pain are arriving together in the same package. And she's too small to separate them.

People say I'm strong.

You don't get stronger in this. You just don't get a choice. You keep doing the unimaginable because if you stopped — if you laid down, if you refused, if you broke — it would mean she stops breathing. So you don't stop.

You stay awake.

You advocate.  

You memorize numbers.

You smile when she needs courage.

You cry in the shower so she doesn't see.

It isn't strength. It's love with no exit.

And some days that love is heavy.

Some days I miss the version of motherhood that was simple. I miss being able to tuck her in without giving her a a dozen meds and hooking her up to feeds. I miss not knowing what lab values mean. I miss not carrying the weight of life and death in my hands. Every. Single. Day.

Some days I'm just sad that cancer took something so beautiful and made it brutal.

But even in the sadness, I am still her mom.

And even when she asks if I love her, even when she can't understand the why behind the pain, even when my body is bone tired and my spirit feels wrung out —

I love her.

Fiercely.

Exhaustedly.

Endlessly.

And tomorrow morning, when my feet hit the floor again before the sun comes up or all night long-, I will keep loving her.

Even when it hurts. 🤍

 

 

March 3, Tuesday

There's nothing like finally falling asleep after being up all night.. only to be jolted awake by housekeeping slam-banging the trash can lid loud enough to wake the dead.

Avry and I both sat up in bed, she started crying as she was startled and I hopped out of bed so fast and ran to the door-  

The housekeeper cheerfully chirped ' good morning !' I was stunned just glared at her and tried to collect my thoughts and calm my racing heart at the realization it was just the housekeeper…  

Nothing more I wanted to do then pop that trashcan on her head and send her sledding down the hallway for an equally smooth wake up.

Buenos Dias to you too chika (and no, a sign on the door won't mean anything because they can't read in English)

I certainly hope our itty bitty little trash made your day a smashing success!! What a wake up!🙈 Wow I was so unhinged on the inside. Hello maybe read the room? The curtains are drawn. The lights are off. The nurse is not in the room yet.  Ma'am… maybe you've been up for four hours.

Maybe you've had your coffee.

And gone for a little sunrise jog, lifted weights, stretched, journaled, and eaten your avocado toast in peace, Maria—  

But honey…

we just closed our eyes what feels like 17 minutes ago after my child was rything in pain for hours.  

This is not a wellness retreat.

This is survival mode with IV poles.

Read the room.🥹

Good morning to you too, Queen of the Trash Can Olympics. 🙄🤭  

All before 8 AM…

We have been ao

Jolted awake at this point there's no point in trying to go back to sleep.  

 

Avry and I had so much fun making the nurses little  1 year- gratitude gifts. We used little mesh pink bags and stuffed them with a photo of our family and a thank you note on the back. An eye or lip mask, a pen with a sticker on that said love, Avry Jo on  it. One of her bracelets, a $5 coffee card, sticky notes, and her favorite- Swedish fish.    

 

 

Avry loves giving back to her nurses and could hardly wait to hand these out. Every time someone walked in the room she made sure they got one—because, as she proudly says, “I lived at the hospital for a whole year!”

I can't imagine what it must feel like for a child to say they've lived in a hospital for a year. Of course we would much rather be at home… but the nurses truly have the power to make a place like this feel awful or okay.

And somehow, through their kindness, patience, and compassion, they've made this the most “okayest” hospital year we could have ever imagined. We are endlessly grateful for each one of them who have gone the extra mile to show compassion and kindness! They truly feel like friends we've known forever, and I honestly can't imagine our lives without them now. They have been here through every single horrific day. These are the people who have seen the very worst of this journey and still chose to stand right beside us. When you walk through something like this, the people who witness the hardest moments with you become more than nurses and by standers—they become part of your story, part of your family. And we will carry them with us long after this season ends. 💛

 

Yesterday when we went to the clinic, Avry saw the bell  for the first time and had so

Many questions! She badly wanted to ring it. (good thing it wasn't on her level most likely she would have).  I've noticed that the last two months she's been asking a lot of questions and I can't force them off with simplicity anymore. She needs the whole truth and nothing but the truth.  This is different than the past year.  A few months ago, I finally sat down and explained cancer to her when she wondered why we have to keep going to the hospital and if this is how it is for every little kid?  She has never seen herself as sick, and we have never called her sick. (we have intentionally always spoken words of life over her). Our family doesn't refer to it as cancer because  I don't want them traumatized every time they hear the word cancer. But it's gotten to a point where her questions demand fuller answers.  So I explained cancer to her.  Earlier on after diagnosis, Janessa had given me a book that helps explain it to the children so I dug that out and read it to Avry. It really did answer all her questions!  I explained to her when cancer is all done and we're done coming to the hospital every month, she gets to ring that bell! Her first question was can we have confetti to??  😅  I told her we can have whatever she wants! Bubbles, confetti, her favorite song- she said

'confetti and a bubble parade!' She's not extra at all 😅.  So now she's dreaming about ringing that bell!  

 

This morning, first thing we needed to get an x-ray done measuring her bone growth. There's a concern  about the bones post treatment and we need to rule out some complications.  She was absolutely hysterical through the X-Ray and would not cooperate. The 2 guys on the other side of the machine weren't super  humans in any form when it came to handling the situation. Janessa is with child and needed

to step out into the hallway so I was on my own with a traumatized child.  I finally raised my voice above Avry screaming- 'that if they want to get this done today, hurry up and take the picture while I'm holding her down with my hand pressed over hers— take an x-ray of mine beside hers.' It's not rocket science, kids.🙈 Lord have mercy!  Do you just want me to do your job for you? - is what I was thinking… (I'm also sleep deprived)  

 

As soon as they left the room, she calmed and started chitchatting with Janessa about ringing the bell! This is just one example of how you never really get to calm your nervous system or take a breath or come up for air.

More and more, I picture myself in the ocean—when you've drifted just a little too far out into water that's deeper than you expected. The waves start coming faster and higher than you calculated. Your boogie board isn't under you anymore, it's floating beside you. You try to jump over the waves, but they keep crashing in, one after another, and you feel yourself starting to go under.

And then you remember… the only way through it is to stop fighting the waves. To relax. To breathe. To let the waves carry you instead of exhausting yourself trying to beat them. (after this year, I have no desire to ever have a boogie board again.)  

 

This morning we ran out to feed the fish before they begin with premeds around 11. I'm pushing her very heavy pole with my left hand with eight pumps. And the stroller with my right hand. I really don't mind at all until we get outside, I'm pretty used to it- her pole is very heavy and the cracks on the sidewalk- I'm always very grateful to get back inside with a pole that is standing upright and all the lines in place and not pulled out of her body!  She stood up just long enough to feed the fish.  I'm so grateful for the healing gardens and the fish pond! It's so important to me that I get her outside for fresh air every day and the fish Make that a  priority for her too!  

 

Avry is still eating. She asked for salty tortilla chips. They're her favorite so I DoorDash them freshly made and bring extra salt just for her. (The need for extra salt is months of post chemo). I buy her a bag of them and she snacks on them all day! Im just glad she's eating something.  

 

Carol brought Trace in for a bit tonight and it was so good to see him and it broke up our long day! Of course Avry loves having him here and asks for him to come every day. She doesn't feel well enough  most of the time to play with him but his presence is important to her!  

 

Wednesday, March 4

This morning we went out to feed the fish again. She is feeling a little better and stood a little to feed them! We even saw 2 baby turtles. We came in from the fish pond and went to the play room. We haven't been here for a long time! She colored on the screen and then played with race cars till she was tired. Then I convinced her to color a spring sheet with me and she stayed awhile! You could not tell difference between mine and hers - she colors so well! But she's also had a year of practice . Carol came in to do our laundry and get us coffee and  do all the things I can't easily go run to do with Avry.  

 

We went back to the room and Avry did a lot of finger painting. We're running out of craft supplies quickly! Janessa brought her a peppa pig  tea set  to paint but that was painted quickly!  

 

It was another painful day! We kept adjusting the pain meds and chasing pain all day. Dr Cooksey is on this week. I love her! She was the Dr on call shortly after diagnosis. She used to call Avry her bubble baby. But now that Avry hates any and all Drs—-they keep their respectful distance. Avry needs blood so that's partly the  reason she's so pale and has less energy but they're going to push that off till after immunotherapy as to keep it on track time wise.  

 

Avry got a second wind around 11 pm. She was wired! She finally was at a good place pain wise wise and was ready to party! She wondered if fruits and vegetables will make her run fast? But she doesn't like fruits or vegetables-

So does that mean she won't ever run fast again??  She told me everything she's grateful for and that she's dreaming of big pumpkins to make pumpkin pie! With whipped cream - and wondered how soon it will be Thanksgiving ??  I absolutely adore our midnight conversations!  

At 12:30 she sat up and announced she was very hungry and begged for pizza! So I DoorDashed her pizza and Danni, our nurse was happy for the rest of the pizza! Avry ate a whole slice!!  I'd already sent the box out to the nurses station and Avry asked for another! So she called out to the nurses station 'can I please have another slice of pizza?'  The nurses won't forget this right away 😅 she never eats a whole slice- much less 2- obviously the meds!

 

She rested awhile and was ready to go to sleep but just couldn't sleep. She was hot and cold all day and I assumed she was working up a fever. She would get the chills and shiver till she shook. We alternated between hot and cold packs all day. They started blood and it was running for 3 hours. She finally fell asleep around 3:30 AM. She wasn't sleeping long and she kept 'spasming.' I fell

asleep and woke to her really shaking! I called the nurse and Danni quickly called the NP. They called it rigors. We were already trying to manage high blood pressure all day and high heart rate but now it was even higher with all the alarms going off!  

Rigors after immunotherapy are intense shaking chills that happen when the body has a strong immune reaction to the treatment. Rigors are more than just feeling cold. They usually include:

• Uncontrollable shaking or shivering

• Teeth chattering

• Feeling extremely cold

• Goosebumps

• Sometimes a fever spike

• Increased heart rate or blood pressure changes

Kids often say they feel freezing cold even when they are warm. So the rigors are basically the immune system revving up hard. They gave her  

Demerol  which works fast because it calms the nervous system signals that cause the shaking.  

The poor thing looked like a sad little man with Parkinson's. She could absolutely not control it and it was miserable!  

 

Thursday, March 5

Robin is our nurse again. It's been awhile since we've had her. She's so good!! She needed to change all of Avry's lines so she unhooked us! We didn't wake up till 9:30. So we didn't have much time to get out and move! She was not feeling good. But I  jumped at the opportunity of not having to push a pole around, and I put her in her favorite little yellow wheelchair and off we were! We went out to the healing gardens, but she just was not feeling well.  It's slowly starting to spring up out there.  And it takes me back to a year ago and how much time we spent out here.  

 

As I walk these halls- my heart is pretty messy as I think of a year ago…. Wednesday a year ago was our last 'normal day.'  Thursday she had symptoms and Friday I took her to the ER…the first night of many spent in that hospital.  

 

This week it's hit us hard how much loss the past year has carried.

We choose to find the good and celebrate it loudly.

But we also honor the grief that lives alongside it—holding both with grace.  

 

Please pray for us as we reflect on this past year — grieving what's been lost while celebrating the miracles God has carried us through. Holding both at the same time isn't easy, and we didn't anticipate it would be this hard.  We would love to have you join us on Sunday as we meet over Zoom again.  And then on Monday as we wear our Avry Jo shirts and honor the milestone.  

 

Thank you for filling our mailbox with encouragement! Sometimes I think we need it more now than ever.    

 

Today is the last day of immunotherapy. Sam came to see us. Avry has been asking for her all week. She's Janessa's child life partner. She is the one who helped to

Shave Avry's head the first time and is very special to Avry. Her name is Samantha Jo and her birthday is in August too.   She brightened our day!  

 

Till we got back inside from the healing gardens, Avry was feeling  rotten and I cuddled her and she cried herself to sleep. Robin got permission from the Drs to start the  continuous fentanyl drip 30 min early as to get ahead of the pain. It didn't last long and she was soon sitting up crafting. Until she had to lay back down again.  

 

Jake came in tonight. We haven't seen him since Monday and Trace was just in one night this week. It's been a long week and we're so glad to have Jake here!  Avry couldn't  get done hugging and kissing him. Remember how when she was diagnosed- that was her thing? She couldn't not hug and kiss everyone she knew and loved and we had to bring that to a stop.  In the past 2 months, it's come back to her and she cannot give a hug without a kiss.  

 

Avry was up late again but at least there were 2 of us. She finally fell asleep and we all slept!  

 

Friday, March 6  

A year ago….Id be lying if I said we're okay.  There's a lot of emotions.  

 

We're planning to go home today if we can get her blood pressure and heart rate stabilized.

 

I walked down to the ER to pick up the coffees Jake door dashed. In a few hours a year ago I'd be coming thro these doors with my little girl… OH GOD HOLD US!  

 

We got home by afternoon. She's in a lot of pain and it seems  to be getting worse instead of better.  Dr Cooksey anticipated this.  We have to start shots tonight 🙈  

 

We've been giving her Tylenol and ibuprofen around the clock but it's not cutting it so we're starting Oxy. Poor baby is in so

Much pain and crying.  

 

Oxy helped enough to make her comfy so she could fall

Asleep. Her breathing isn't great and I won't be surprised if we end up in the  ER yet. But let's first try to get some sleep.  

 

Saturday, March 7

I woke up at 3:30 and instantly knew something wasn't right. Her breathing was awful and she was burning up. I changed her and  took her vitals and her heart rate was double what it should be. Her temp was 103. I quickly called the Dr on call and they said to get to the ER. I quickly packed a bag in case we'd be admitted (if we're prepared then we won't have to stay but I take noting- then we'll be admitted! Iykyk!)  

 

Avry didn't even object to going in. She was so miserable. And so sweet.  Oncology called down to the ER and they had an isolation room waiting for us.  

 

We spent half the day there running tests and all the tests  came back clear.  We were there a few hours and she wasn't running a fever and was in much less pain. (That's always how it is- you get to the ER and all the symptoms magically disappear🙈 until you're on the way home)  except her heart rate was still dangerously high.  

 

We concluded that it was post immunotherapy plus mildly neutropenic.  So many unanswered questions. They left it up to us- if we  want to be admitted or to just go home. Decisions, decisions…  

 

I feel like I can care for her almost as good as they can in the hospital with what I have at home

As long as she is stable  so we opted to go home.    

 

On the way home, I felt like we made a bad decision. Her skin was shiny and she was lethargic. I kept making sure she was still breathing.   The shiny skin was a tell tale that she indeed does have leaky vessels and her fluids are not in the right place as getting so many fluids in the hospital. Ugh. Did we come home prematurely??

 

We got home and we all went for 3-4 hour naps. What a week!!

 

Tonight we had a homemade dinner and it was so comforting! It's cold and miserable outside.  

 

Trace had his first baseball game and Jake and I were so sad to miss it!! we have never so badly wanted to be in two places at once as much as we have this past year. God hold him!  Reach him when we cannot. Just hate that he always gets the leftover crumbs from us.  

 

Tonight Avry is running fever…

Pray for us to have wisdom!  

(We go back to the clinic on Monday)  

 

This completes around 7 of immunotherapy/ Round 2 of post consolidation.  

 

 

Miracle Day

March 9, 2026

 

One year ago, Avry Jo was diagnosed with cancer.

 

Instead of letting this anniversary be defined only by the weight of that moment, we are choosing to make it beautiful.

 

We are declaring March 9 as Miracle Day — a day centered on hope, testimony, gratitude, and tangible love.

 

Over the past year we have witnessed countless miracles, both big and small. Moments of grace in the middle of the storm. Strength we didn't know we had. Kindness from people all over the world who chose to stand with us and believe for Avry.

 

We would love for you to join us on Zoom as we gather to celebrate, reflect, pray, and share the miracles we've seen along the way.

 

It will simply be a time to be together — to visit, laugh, remember, and give thanks for how far God has carried us.

 

If you feel comfortable, we would also love to hear from you. You are welcome to share:

• A word of encouragement for our family

• Something you admire about Avry Jo

• How this journey has impacted you

 

Your presence means more to us than we could ever put into words. Thank you for walking this road with us and believing for miracles alongside our family.

 

-our story for Gods Glory

 

P.S. We also released exclusive Miracle Day mugs that hold special meaning to our journey, but are meant to encourage anyone walking through a hard season.

 

You can purchase your T-shirts and the exclusive new mugs here: https://www.bonfire.com/store/miracles-for-avry-jo/

 

Join us on Zoom Sunday at 2:30 PM central https://us06web.zoom.us/j/89754888815

Meeting ID: 897 5488 8815

To receive updated with more photos:
https://avrystory.my.canva.site/