^{Support Registry Update}

Sunday, July 20 Round 5, Day 13

In support of
#miraclesforAvryJo

Just 3 more days till her ANC (white blood cells that help fight infection) should be recovered. 🙌 Historically, it’s been Day 16 of the chemo cycle that she is no longer considered neutropenic. (A chemo cycle is 21 days.)

A week ago was when we were home less than 24 hours and she spiked that fever, bringing us back in till blood counts recover. This round has had delayed chemo side effects. For a moment, I thought we were going to skip the side effects!!! They’ve been mid to severe. We’ve had worse. One new side effect is splotchy skin. It looks like she got a spray tan and it’s coming off! Her skin was so bronzed and matched Trace’s healthy tan—but she hasn’t even been in the sun! That’s chemo. Her skin has been peeling, much to her dismay.

Last evening she was fussing so much. She was standing in her bed, and I gave her a hug—and she cried her little eyes out into my shoulder,

“Mom! I just want to live at home.”

I know, baby. Me too.

We got this two-week taste of home and it’s made us both a little discontented with cold concrete floors and hourly nurse checks and the sterile smells of medicine and cleaners. I’ve wondered, round after round, if I would ever feel “nauseated” by the hospital atmosphere—with the mix of memories, emotions, and the continual uphill climb. How could we just keep going and going??

I am so grateful this has not been the case.

This is the abundantly more grace that He continues to give us.

Today Avry is remembering again. For a while, it seemed like she’d forgotten so much of before cancer… but today, she is remembering so many details of her little life and trying hard to piece it together in her mind. She doesn’t understand all the changes or how this came to be.

“Please, please take me back to my white house!” she sobbed.

This week there was a lot of transplant talk. So much preparation is going into this. So much behind the scenes. One of the coordinators came in on Thursday for a 2.5-hour meeting to discuss protocols. In hindsight, I should have just asked for the paperwork and then followed up with questions. 🙈🙈🙈 I don’t know that there is enough oxygen in this hospital room for the amount of deep breaths needed to wade through the protocols and paperwork.

One thing’s for sure—Jake and I have become masters at simplifying a lot of their overcomplications. Being the first transplant patient here at Dells has its benefits, and equally, its drawbacks. We reached out to several in our neuroblastoma support group who have just finished their transplants for perspective and experiences. I’m so grateful I will have Jake here those first few intense weeks.

On Friday, we needed JOY—after the week of post-chemo side effects and heavy transplant discussions!

Avry Jo will turn 4 during the transplant stay. She will not be well enough to celebrate. And I’m not sure we’ll be home before then, so we brought the party to the hospital!

There are 2 playrooms on this floor, and they’ve turned one into a space just for transplant patients—so it’s Avry’s! We set up in there. Amy came to the rescue and helped me overnight one night while Avry was sleeping. I wanted to create just enough magic to see her beam.

At noon on Friday, we took her into the playroom, and she was speechless. She stood at the table by her cake and just smiled and looked all around.

“Can we stay in here all day?”

The nurses and doctors from our floor trickled in for cake and ice cream. Some from clinic came by too. We’d set up a photo booth with props and a Polaroid. The staff had fun taking each other’s pictures for Avry’s scrapbook. We stayed in the playroom a good bit of the day. Nurse Haleigh made a beautiful card, and the floor staff signed it for Avry. Jake and Trace came in early evening, and we hung out in the playroom for a good while. We went on walks and had such a sweet family evening.

It felt overwhelming to try to plan something like this. I had Gena help me think it through when she was here and help me gather supplies. I thought several times of just giving it up altogether—but Friday night, I was so grateful I pushed through and just did it!

I needed this day.

I needed the smiles.

I needed to feel gratitude and JOY—

without loss and grief and pain and fear, for just a day.

And that’s exactly what today was.

I’m going to be looking at the pictures and videos of these smiles over and over and over again. When I asked Avry what her favorite part of the day was- she said “ all the friends that came (hospital staff) mom, I’m just so lucky.”

“How lucky we are” to have so many kind, amazing staff that we get to love and share our little girl with!

At least three times, Avry sighed,

“Mama, this is the best day ever.”

When Trace came in, he surprised Avry and shaved his head for her birthday celebration! She was so pleased! I cannot believe how much they look alike.

Friday night we had another family night in the hospital. It was exactly what we all needed. What a luxury to wake up under the same roof. In Avry’s words:

“I just love being a family.”

I’ve mentioned this before—about my Proverbs study group this month. It’s just been so good for me. Because when you lead out in a study group, you don’t get to slink back in the corner and read and contribute as you feel like. You got to show up!

Proverbs 19:21 says,

“A person may have many ideas concerning God’s plan for his life, but only the designs of God’s purpose will succeed in the end.”

The discussion question was:

Have you ever had a season where God’s plan interrupted your own? How did you respond—and what did you learn through it all?

(Not at all applicable to our season 🥹😉)

It was such a good exercise—to actually bring to the center stage of my thoughts -the purpose of all of this. I feel like it’s something that five months ago, Jake and I discussed on a daily basis. Something that easily gets hazy in the shuffle and noise of survival.

We make the plans, but God directs our steps.

Our lives are on His timetable.

We are here only for a time—to do God’s will, to point others to Christ, and ultimately bring glory to Him.

That is the only way I can make any sense out of this life—especially when we are “interrupted.”

It’s so easy to think it’s our life—we make the plans, we run the schedule, we budget, we dream, we go-go-go. But it’s not really up to us.

I’m convinced that how we respond to the interruptions has everything to do with what God wants to do through them. He can and will bring good out of every situation when we choose to respond in faith and surrender. We may not see the full picture on this side of eternity, but I believe He allows certain things into our lives to grow us, to shift our hearts, and to draw others closer to Him.

Honestly, our short marriage of 13 years has been a series of “interruptions.” And when things go against my will or wants, I’ve learned to pause and ask—

What is God trying to show me? How can I grow here? What are we being invited to learn in this season?

Because sure—we can kick and scream and resist it all (and sometimes we do this so well!)—but from my experience, the lessons keep coming. Just in different forms.

I also believe God sees our potential. He knows what we’re capable of. He created us individually with a purpose to fulfill. So when we ask Him for strength, patience, or the grace to break generational cycles—He doesn’t serve those things up on a silver platter. He gives us opportunities to develop them.

And that’s what changes us.

That’s where His purpose is unfolding.

Even when it looks nothing like what we had planned.

I’ve come to a place where I actually feel a sense of comfort when things don’t go as planned.

Hear me out—

It’s like a steady hand on my shoulder from my Heavenly Father saying:

“Hey. I’m still here. I’m still in control. I noticed you got a little caught up with life. But that’s okay. I’m here, and I’m going to get you through this too. Do you trust me?”

It’s a confirmation. That even though we may fall short time and time again—He hasn’t given up on me.

When life interruptions come—(house fire, hospitalizations, relationship strains- whatever it is)—it’s an invitation to rise higher.

It’s not rejection.

It’s redirection.

It’s perspective.

That’s my point of view. 🌸

It might be 100% delulu—and I’m okay with that.

It’s what keeps us taking the next steps, holding onto our mustard seed faith. (And one day Avry is going to read this journal years down the road and I want her to know- this is how we kept going)

This week, Trace got to spend it with Jake. On Wednesday, they finished their job early in the day, so they met up with some friends at the coast and went fishing.

We’ve always said, since Trace was little—if you want to catch a lot of fish, take him with you. He’ll be your good luck charm! When no one else is even getting bites, he’ll be reeling them in one after the next!

I remember particularly when we took him deep-sea fishing when he was five. No one was getting bites, so we told him to come and hold our line for a few minutes—and sure enough, we’d get a bite!! 😂

Trace hasn’t had much luck locally—he entered a tournament two weeks ago and didn’t get a single bite—and he had almost given up on his fishing dreams.

Jake said this week rekindled his love for it. It was exactly what they both needed!

This weekend, I couldn’t believe the difference in our boy. Last weekend I was distraught about our situation- it felt like everything was out of control and I couldn’t be to him who he needs-, and Jake told me,

“Just be patient. He hasn’t spent any time with me in weeks—let me have some time with him.” Well, He was right.

He just needed some “groundwork” and some “collecting.”

And I know your prayers had a part to play.

Thank you to everyone who has reached out with bold prayers for Trace specifically.

I know it’s a continuing process.

I’m feeling relieved knowing we have a plan in place for next month. We’ve tried our best to give Trace stability by having him at home in his own bed. But then there was always the question—what to do to fill his days? And he’s nine, so a “babysitter” is the unspeakable… but he’s also nine, which means-idleness never ends well.

We’ve asked a local family if Trace can live with them during transplant. It’s a big ask, I know. But I really believe it’s the best way to keep his mind busy while we’re apart, and a family’s schedule before school starts seems like a good thing to implement.

When I stop and think about the degree to which his life has also been turned upside down, I’m amazed at how well he’s holding together. It doesn’t make it hurt less—but we are forever grateful for those who have stepped up for him too.

Then, at the end of August, Meg reached out to us and offered her live-in services through the new year! We met her last month when she came to visit for a few days, and we’re happy to welcome her into our lives. This will help eliminate the need for someone different to come into our home every week to meet Trace’s needs during the school months.

I couldn’t think of a better fit for during the school year for our family at this time.

She is our answered prayer. 💛

Tonight I told Jake, after arriving back at the hospital:

“I’m just not ready for the week…”

I don’t know what the big deal is—this is our third week. We’ve done 25 days in the hospital at once! I just need to pull it together and stop shrinking from the task at hand.

He agreed- it’s not as easy as it once was. (Maybe the shock is wearing off and reality a little more real as the next phase is weighing heavily on our minds.) But also- That little taste of home made this return feel extra hard. We’re struggling a bit. Not to mention missing each other incredibly much this week.

If we’re discharged Wednesday, there’s not even a point in going home—because we come right back Thursday and Friday as outpatient.

Thursday, they’ll inject the radioactive dye and check to make sure it’s in place. She’ll have a CT scan that day too. And a handful of Labs.

Friday is the big one.

She will undergo general anesthesia for her

MIBG scan,

MRI,

Bone marrow aspiration,

Bone marrow biopsy,

Dental exam and

Audiology test.

Historically, when she’s had these, she’s needed to stay the night to manage the pain afterward.

(Why is she having a dental exam?? Because after transplant, before her counts come back up- we have to mitigate all chances of infection as her body won’t be able to fight it off and put the transplant viability in jeopardy. So please pray she has no cavities!!!)

That means discharge on Saturday, leaving us just one week at home before transplant. And it’ll be a broken-up week—with appointments scattered throughout. It’s something we’ve wrestled with so hard. One week. That’s all we’ll get as a family before separation begins.

Friday is a very big day.

A try not to pace-the-floor kind of day.

A breath-holding, prayer-filled, anxious kind of day.

That’s when we’ll find out her new Curie score.

Remember after Round 3? Her score dropped from 18 to 2!

Now we need it to be zero before transplant—for the best possible outcome. Less risk of relapse.

Did Round 5 do its job, even with halved chemo doses due to the hearing loss?

This is when prayers have no words.

When it feels like an elephant is sitting on your chest.

When fear wants to dominate—

But faith has to take the lead.

So we’re asking—

Please remember us on Friday.

It would mean so much if you joined us again in wearing your “Miracles for Avry.”

Please pray for:

• The surgeon

• The audiologist

• The radiology team reading her results

• Our oncology team

• The anesthesiologist

• The transplant team as they prepare and adjust based on findings

• And of course, for our sweet girl as she endures the surgery and procedures and then recovers from the painful extractions

And please, pray for our whole family—for peace, strength, and comfort, that passes all understanding.

And—before I close this update—I want to say thank you.

To every summer Bible school that has generously sent your offerings our way,

To those of you who have personally chosen to financially support our family,

To every single one of you who has sponsored a fundraiser, bought a t-shirt, or gives monthly—

We see you.

We feel your love.

And we are most humbled to be on the receiving end of such kindness and generosity!

Thank you for still being here—19 weeks later.

Thank you for choosing to care and support, even when you may not understand.

Thank you for choosing to love our little family so well.

You are the hands and feet of Jesus to us.

And we truly, truly could not do this without you.

We ask God to bless and reward your generosity and sacrifice in ways we never could.

We are holding you in our hearts with deep, heartfelt gratitude.

“ Help me to leave tomorrow with you, Jesus- so many things I cannot not understand. And went dark waves of fear should dash about me- help me to leave tomorrow in your hands.”

-Rose for all of us

P.s.

thank you—for carrying her name, her miracle, her fight.

It means the world to us.

Rosanna Schapansky
5 months ago

Browse Current Support Options

View Options

Comments

Chantal.beaton

Ill be praying extra hard this week and then all day on Friday. Stay strong 💪

5 months ago

Diane Histand

So grateful God is a great big, wonderful God. He is able to handle all this for you. Your load is very weight, your scedule daunting, your family so important......how does a family, how do parents how does a young child live this? So many questions, uncertainties, unknowns....God is more than we can understand, yet we can know Him personally! May you sense God's love, power, grace and strength as you walk these difficult steps. He is Able!
Sorry if this sounds cliche, I don't mean to, this comes from my heart. What you walk is real and very complicated and consuming. Praying for all of you.

5 months ago

Jana Wohlgemuth

I do not know you but I’ve been following this site all along! You.are.amazing!!!! You’ve got a faith and trust that’s gona keep you going. Somehow. Don’t EVER let go♥️.

~keep looking up. God is looking down~

5 months ago

Kimdoolittle74

I don't know you but I saw this site on one of my friends statuses. And my heart goes out to you. We have a girl emily that had leukemia when she was 4 and we spent alot of time in denver which is 3 hours from us. It's so hard to be separated from the rest of the children and so hard to be alone and so hard to watch your little girl go thru all this awful stuff. She did not have to have a transplant so some of what you're going thru is not familiar but some things bring back so many memories. She is a healthy 12 year old now. Praise God. I'm praying for you and for a miracle for your sweet little girl. May God hold you all close!

5 months ago

Return to Support Registry