Round 8; post consolidation round 3 March 30
In support of
#miraclesforAvryJo
View Support Registry
#miraclesforAvryJo
Round 8;
post consolidation round 3
Monday, March 30
Andrew and Miss Sofia came over shortly after 6 AM and brought donuts and coffee before we head into the hospital. So fun having Andrew around this weekend! Jake commented several times how much it meant that they popped in this morning.
We were headed to the clinic before 7 AM. Avry was in good spirits after a melt down and ‘ I’m so sick and tired of going to the hospital and I think it’s dumb.’ I explained to her that we only have a few more times of going to the hospital and her first question was and then I get to ring the bell?? Followed by WHEN will I get to ring the bell? And WHEN will I have long hair again?
We met with Dr. Wells and Dr. Caitlin. Dr. Wells told us that June 2027 he is retiring; that this would be the last holiday weekend he has to work. I was so grateful all over again that we’re privileged to have him as our primary. And then I remembered that today is honor a doctor day- so I quickly put in an order to Tiffs Treats for our Drs! They absolutely love getting fun reminders like this and there’s nothing more than I love doing for them. It was a fairly quick process at the clinic and very soon we were walking over to the hospital. We had just gotten onto three E. And Avry asked if we think Brooke is here? Before I even saw the nurses station Avry hollered out ‘hi Brooke!’ 😍 sometimes I feel like the nurses have every reason to hide underneath the countertop when we come walking down the hallway but they greeted us with so much love and support and I know I’ve said it 1000 times and I’ll say it again- we are so grateful for these miracle working oncology, nurses who dare to care and show up every day with Smiles and support!
If anyone had a reason to grow grumpy or sink into depression, you’d think it would be them—because let’s be honest, the pediatric oncology floor is not an easy place to live, to work, or to breathe in day after day.
And yet… they still choose gentleness.
They still show up with patience.
They still speak softly, care deeply, and love these kids like their own. It doesn’t go unnoticed.
We are back in room 386! This is our original room and we have not been back in it since transplant days because it has become the transplant room. There have been three transplants since Avry and it’s been full up until now. I do love the view out of this room the best but also there are some really heavy dark memories in this room too. But today’s a new day and the sun is shining and is so vibrant green on the outside and there are new memories to
Be made. Avry wanted to begin crafting immediately. I’m so grateful for some new activity books. Tiff sent so many new markers that Avry is super excited about! It didn’t take long until reality hit and Avry was so sad all over again that she is stuck back in the hospital! The days get so long because we cannot leave the room over the 12+ hour infusion.
Jake headed home to go do a job this afternoon and then was taking Trace to baseball practice tonight. Meg is coming tomorrow and we are so overjoyed to have her back!! There’s no explaining or no having to give a list of the instructions because she was just here for six months! She will so smoothly slip right back into the routine. Avry has been counting down the days till she comes. Avry is also counting on her coming in here every single day.😅 so between today and tomorrow, there’s a bit of juggling to get Trace to all the right places for Jake in between the hospital and work.
The clock is an hour behind in this hospital room and what a welcome realization!!
Dr Badding from palliative care came in today. He is so awesome! He came in and sat down and we talked for an hour. I wish all the doctors were as chill and attentive as he is. He took me very seriously - the med challenges that we’ve been having with pain management. And yet it still took time for Avry’s questions in between all of the crafting! Between him and Dr. Cohn, they are putting their heads together to come up with a better pain management plan. I have no doubt in my mind that they’re gonna figure out something really good. And to also get her to sleep. These infusions wire her and she usually only sleeps 3 to 5 hours max and that’s not even a straight through stretch.
Around5-7pm the pain started kicking in and she cried for almost an hour. The nurse practitioner kept coming in and adjusting her fentanyl drip, but it just wasn’t enough. Of course
We are talking micro adjustments. Ice packs on her legs are always her go to. She refuses to lay down and is persistent about continuing to color or craft. Until the pain gets so bad she just curls up in a ball and cries like a baby. It’s the most hurtful, painful cry. 💔
Avry was sleeping by 8:30 which was so unusual!! She has never fallen asleep this early in the hospital.
Dr Mitchel came in tonight because the NP called in sick. He didn’t come and do rounds but by 9:30, he came into our room. The monitors were going crazy and I kept watching her blood pressure go lower and lower. The nurse had come in and repositioned her and we disconnected all the wires and reconnected them and put on the blood pressure and pulse ox again to make sure that we were getting correct readings.
I had briefly dozed off and woke up to the alarm going crazy and my intuition told me that that blood pressure was way too low, but the nurse hadn’t come in yet and I was wrestling with it in my brain -and that’s when Dr. Mitchell walked in. He barely looked at me but acknowledged me and right away took the blankets off of Avry. He took her pulse and I knew he would check to see if she was profusing well. The only question he asked me was has her blood pressure ever been this low? By this time, the nurse and the charge nurse were in our room. Normally, we have high blood pressure and high heart rate. So I explained my logic was the new med because historically this med has lowered her blood pressure when it was dangerously high during transplant. He repositioned her again and we again reconnected all of what she was hooked up to(which is a lot!) he stepped over to the edge of the curtain and was talking in a very hushed tones to both of the other nurses, but I could not make out at all what he was saying.
He went out of the room and the nurses were working on the machines.
He came back a few minutes later and brought his computer and set up on the counter countertop. Now I’ve been here for over a year and I know what it means when the doctor himself comes in parks himself in your room. This is a serious, no messing around situation.
Dr Mitchell informed me that Avrys blood pressure and respirations are dangerously low.
And we’re going to try to do everything we can to keep her upstairs, but if we cannot get it within range- we’re looking at going down to the ICU because they are much better capable. He was in communication with the ICU Dr and they were ready if we needed to go out any minute.
The first thing we did was stopped the infusion and gave her a double dose of Narcan reverse all of the med effects. We waited half an hour, and her stats did not change. The next thing we did was took off the PCA. (The fentanyl) in 30 minutes there was still no change. So even though she was below range, she was stable. Dr Mitchell continued to make sure that her body was warm- and in the meantime, I held her close in hopes my body’s heat would help keep her warm. Dr. Mitchell also asked me to try to wake her up; but she would not wake up. (not even when I did all of the things to make her annoyed! Including moving her feeding tube in her nose slightly- she didn’t even wince)
The last effort was to give her steroids to get her heart beating faster, which would then bring her blood pressure up as well. Her body was starting to get cold. Dr. Mitchell is a man of very few words. Every time he came over to the edge of the bed, in between messaging the other doctors and figuring out med dosages and talking to the nurse- he only ever said a few words. I held her so close. And put so many blankets on us trying to keep her so warm. Dr. Mitchell looked dead into my eyes and said ‘ she is so lucky to have you.’ I didn’t sleep. I didn’t blink. I held her close.
Jake had his phone off and I’m glad that he did. Because he needed to be home with Trace anyways. I wouldn’t have wanted Jake to rush into the hospital leave Trace. But I was texting our inner support circle and they stayed on the phone; praying, waiting for updates; offering presence and support.
We gave her a second dose of steroids and it was close to
3 AM. The monitors were still going crazy. I wondered if they were even accurate because she looked not alive; I kept making sure she was still breathing. Her body was getting cold. Dr Mitchell asked me
If we’ve ever had to stretch out the infusion longer than the 10 hours? We finally saw Avrys number start to climb over the next hour. They were on the bottom end of the safe range but they held steady for over an hour!!
Dr Mitchell came to say we’re not going to the ICU. He’s not excited about the number but she’s stabilizing. And we would start the infusion within the next hour and see how she tolerates it.
Blanca was the charge nurse. She was one of the BMT nurses and we had her a lot during transplant. She’s gentle and steady and so kind! She was in and out all night. I asked the nurses if I could sleep- since they were going to be in the rest of the night- to wake me up if anything changed. She assured me she would!
Dr Mitchel came in a few more times to check on Avry. Her body was warmer.
I slept.
At 5:30, Avry woke up and was hungry! I gave her a snack and she hunkered back down to
Sleep. Just as I turned off the light, Dr Mitchell came in again. He breathed a sigh of relief to hear she wanted to sit up and was hungry. We concluded it was the combo of going up multiple times on the fentanyl and the new med to help with the nerve pain and sleep that made her crash like that.
I messaged our support group ‘that was not coincidence. That was divine provision!’ Dr Mitchell ‘happens’ to fill in for someone else on the nights we have had some of the scariest moments! That morning before we left for the hospital, I prayed and asked God to put a hedge of protection around us—
to surround us with angels, seen and unseen.
I prayed that her life would be spared today…
that the medicine wouldn’t be too strong for her little body,
that it would do exactly what it’s meant to do—nothing more, nothing less.
That every cell would respond the way it’s supposed to.
That her body would be strengthened, not overwhelmed.
I asked for peace to fill the room…
for fear to be quieted,
for courage to rise up where weakness tries to settle in.
(The words were barely out of my mouth and I wondered why? I was puzzled but couldn’t shake it. What made me Pray that specifically? Kind of weird. I wasn’t even thinking about her life needing spared from
Too strong of medicine and yet now that I prayed that…It lingered in the back of my mind till We go to to Avrys room. I didnt obsess or fret, in fact I forgot about it until the next day when the verse came to mind -‘ In the same way, the Spirit helps us in our weakness. We do not know what we ought to pray for, but the Spirit himself intercedes for us through wordless groans.’
Tuesday, March 31
Avry slept in. She was tired and didn’t have much energy. But she smiled thro her sleepiness. She asked for tortilla chips. She loves the homemade ones with extra sea salt. She got out of bed and walked to the nurses station! I couldn’t believe it! We’ve changed the fentanyl drip
to run nonstop instead of just during the infusions so we can run at a lower dose and manage the pain before and after the infusions better. But that means she needs to be hooked up to the heart monitor, blood pressure, and pulse ox. That means more equipment to lug when we leave the room. (We’re not able to leave the room during infusion) I put Avry in a wheelchair and we went down to the entrance for her order. She was so tired and ready to go back to her room. She’s still wearing her beloved bunny ears from Brooke! 😍
Jake came in this morning and brought Avry a basket of fun things! Yesterday we did most what I brought and I asked Jake to go to Hobby Lobby and see what he can find. He did such a great job and finding things we’ve never done! Then we went to the healing gardens . I can’t believe how green everything is compared to just a month ago. Avry fed the fish and we walked around the walkway once but she was too tired and wanted to go back to her room.
Jake left and Apples the Clown came! Janessa made sure Apples came to see Avry. The clown has been using the same 6 tricks over the past year and still Avry giggles like it’s the first time she’s seen it! Such a day brightener!!
Meg is landing tonight and Trace has a baseball game. Avry was so heartbroken they didn’t all
Come in to see her tonight. I told her tomorrow!
Wednesday, April 1
It was a much better night! Dr Cohn is inpatient this week and I’m so happy we get to have her!
Jake came in this morning and exchanged places with me. I’m going home to sleep!! Avry is looking forward to a daddy day.
I slept all day! I am not one of those people who can just lay down and decide to sleep during the day. My body has to be dog tired or I have to be sick to sleep
during the day. I don’t even realize how much I live on high alert all the time and the other night, I didn’t even feel like my nervous system was revved. And yet I think it just is all the time that my body has adjusted to it. But the tired meter is just all the way on hot smokin red these days!! So grateful I CAN sleep!
I was planning to go back in after I got Trace from school but Jake told me to just take the rest of the day and even the night. Meg and Trace and I went in for an hour tonight to see Avry because I had promised her that Meg and Trace would come in… they colored and played the entire time!
So many of the OG nurses are working tonight and came by to say hi! They just make this a really wonderful place.
It was delicious to go home and sleep in my own bed!
Thursday, April 2
It is pouring rain this morning!!!
Thank you Jesus!!! We are so
Dry. Last week there was a wild fire in the state park. The combination of wind and being so dry…
I went to the chiropractor before heading to the hospital. Jake’s job canceled this morning because of the rain so I’m in no rush. I took Jake breakfast and we caught up for a bit. Dr Cohn and NP Kristina are the team today. They make the best team!!
We love chatting with them. Dr Cohn always comes and sits down on the recliner and makes herself comfy! Avry is puffy from
Fluid retention and she’s not very energetic. This is definitely the best pain control we’ve had to date but she’s not without pain. You can see the pain in her eyes.
She is so brave, so strong and so sweet even when she is in pain.
Nikki is our nurse for the next few days and I’m so so grateful!! Just love having some of the original nurses again! Avry loves Nikki and Nikki does so good at interacting with her. Today avry asked her when she is coming to our house?! I’m also very grateful for the mail! Yesterday we got a few packages in the mail so I was able to bring in something new and fun for Avry to do which included gem art, button art and sponge art! This kept her busy for a while. She is doing so good at cutting and pasting. She did the whole workbook in three sittings! I think it’s time we start preschool. Because why not? I can’t believe how much she has advanced in one year! They warned us a year ago most kids regress. Not In this area she hasn’t !! She buzzed thro her Holy Week workbook so fast. I expected that to take longer too…
Trace has off school tomorrow so tonight Jake and Trace are leaving overnight on a job and will be back tomorrow night so it’s just Avry and I are here tonight. The clock is ticking awfully slow…
Friday, April 3
Avry woke up and the first thing she said is ‘this is the morning so that means it’s Friday! That means we can go home today!’ She slept in past 9 and was starting to get just a tiny bit worried. Her heart rate was too high. (A sign of pain) The nurse had given her a Pantamadine infusion first thing 🙌 that’s a long infusion she gets monthly and we got it inpatient so we don’t have to get it in clinic next week. It’s used to protect kids with weakened immune systems from a specific type of pneumonia.
As soon as she woke up, she wanted to get into her purple sparkly dress! I put her in the stroller and we went for coffee and to pick up her prescriptions at the outpatient pharmacy.
With these 10+ hour infusions, we only get a few hours once she’s awake to actually be out out of the room. And it’s really important—for both of us—to go. To breathe. To feel something outside of hospital walls. We love going down to the healing gardens. Feeding the fish.
Sometimes we DoorDash breakfast and go pick it up at the entrance.
But getting there isn’t simple🫣
Right now she has eight pumps on her pole.
It’s one of those heavy-duty ones—top heavy, awkward, unforgiving. Over the past year, I’ve gotten really good at maneuvering Avry in the stroller while pulling that pole behind us… all while making sure the lines connected to her body don’t pull. Because yes—it really is that serious.
And it really is that hard. I
still don’t like narrow doorways.
Or sidewalk cracks.
I’ve had that pole almost topple before. This morning, we made our way down to the coffee shop. I struggled through the doorway—one hand pushing the stroller, the other pulling the pole—mentally tracking every tube, every line, every movement. We got in line.
I ordered my coffee and a breakfast taco. I was just about to pay…
when a man behind me stepped in front of me and tapped his card.
I froze.
I turned and mouthed, thank you—because I knew if I used my voice, it would crack.
He looked at me and said,
“Coffee is the least I can do for you. It’s something you should never have to worry about.”
I stepped aside to wait for my drink…
and I couldn’t hold it together anymore.
The tears just came.
We stood off to the side, and another hospital mama walked in. She saw Avry in her sparkly purple dress and bunny ears.
She looked right at me and said,
“You have the bravest little bunny I’ve ever seen. And no matter what—she has the most beautiful eyes.”
They called my name.
I went to grab my coffee, and the man who paid for it ran ahead to open the door for us.
“Have a good day,” he said.
We walked to the elevators…
and I just needed a minute to breathe. To regulate. To take it all in.
God… I don’t understand.
I don’t understand why perfect strangers can see us—
when sometimes those closest to us cannot. Why strangers can show up with emotion, compassion, kindness
so freely. God, what are You trying to teach me?
I was reminded how over the past year
We met God
through the people
who dared to be human.
—The ones who dared to cry.
Who let their hearts stay soft
instead of shutting down.
We met Him in strangers—
—the ones who had no reason to care,
but did anyway.
The clown at the park
who made her laugh
And prayed a blessing over our family. (She wasn’t afraid of him
Bc he was so kind and gentle)
The man in line
who paid for my coffee
and reminded me
that kindness still exists.
The “Facebook grandma”
who shows up
again and again,
never missing a moment,
never forgetting us.
We met God
in the ones who didn’t have answers
but showed up anyway.
Who felt it.
Who entered in.
Who didn’t look away.
And I realized…
Sometimes the clearest picture of God
is found in the people
who are willing to stay human
in the middle of someone else’s pain.
Forever grateful for the people who notice-
who look at Avry and see her strength and resilience,
who take a moment to truly see us,
to validate this journey,
and to feel it with us instead of looking away. 🫶
We got back to the room and Avry was pretty content entertaining herself while I packed up the room. Meg was on her way to get us. The nurse had to give Avry her Neupogen shot. Oh I was kicking myself for not rejecting it and doing it at home! I knew she already had it from the pharmacy and wasn’t sure if Jake would actually be home on time tonight to give the shot. That went terribly. 🙈 we always use ‘buzzy the bee’ (it’s just a buzzing little bee that vibrates and we put it right on her skin and it really helps with the sensation of the shot being just a tiny bit less painful). I don’t usually give too much preparation for the shot because that just makes anxiety build. Well- child life was coming from a different floor who did not know Avry. And she walked into the room, openly sporting buzzy 🙄 10 minutes before Adriana was even ready to give the shot. Oh, for goodnesss sake did I ever wanna give that child life person a piece of my mind. -you’ve been a child life specialist- you really are full of tact 🙈 as soon as Avry saw it, which was immediately because she doesn’t miss a beat, she started screaming. And there’s NO reasoning whatsoever. Because she knows what’s coming. So this child life woman tried to sit down beside Avry and talk her through her anxiety. Oh lady you really are as clueless as that little buzzing bee that you’re holding in your hand. 🙈 you just done opened a can that you cannot put a lid back on until the shot is over. And even so you will never be able to put the lid back on. There’s nothing you can do or say to make this less difficult at this point. Adriana cued in fast and ran for the shot. We got it done and I held Avry in her bed for the next 30 Minutes till Dr Cohn came by with
Avry’s ‘golden ticket’ to go
Home! Those shots are so
Painful and the more you give them- the more they hurt. They’re sore but not only that. It’s the growth factor that tells the bone marrow to produce more white blood cells FAST that makes for a lot of ‘bone pain’ and that’s totally outside of the pain from the immunotherapy that she’s receiving. This baby girl 💔 sometimes I just feel like I can hardly breathe and my
airway tightens and my lungs get chokey when I think about how much her body has endured and how she is so trusting of her parents and loves so big and bounces back to her joyful self so fast and stays sweet no matter what. 😭 (adults can learn a lot from her)
Avry had asked her nurses if she could please have a bubble parade when she left the hospital? I honestly was so shocked that she asked because she hates attention. They happily obliged! When it was finally time to leave the room- I picked her up and went running down the hall, dancing through the bubbles- laughing all the way! Then we headed out to her beloved fish to feed them and say goodbye.
She fell asleep, almost as soon as we got into the vehicle. We weren’t home very long and she started screaming. She was in so much pain. I gave her all the pain meds I could, but I knew it would be at least 30 minutes till they kicked in. She begged me to call the doctor and I did. The NP so kindly sat down with me with Dr. Wells oversight and made out a whole new med schedule for the next 12 hours! I’m absolutely appalled! It’s intense. It is a LOT of medicine! And it looks like there will be little sleep tonight. It’s every other half hour!
Jake’s getting home around midnight. Avrys a little stir crazy and wants to do things but lacks the energy. This eve I wanted to watch the Good Friday service but Avry wanted to craft. I distracted her by convincing her to go outside. It had rained on and off today and the flowers were so pretty! I listened to the service while we sat and colored a good bit of the driveway with chalk. I was surprised she had the stamina to sit out there that long.
We came in and I did her evening meds, and it was time to go to bed. And then she started screaming again. And screamed for over an hour. I tried everything. Different position, holding her, ice, heat, and gave her all the medicine I could possibly give her. It’s the most saddest heartrending cry. - like a helpless baby who is in so much pain. And there’s nothing I can do. 💔 ‘ mama please pray’ because she knows how many times I have prayed out loud and the pain does go away. It didn’t go away. So I called the doctor again. This time she stayed on the phone with me for a long time. She recalculated her meds and we went up On them again! Avry finally cried herself asleep while I was on the phone with the doctor. 💔 She was soaked thro with sweat from her intense pain. We agreed that if the pain doesn’t let up and if this happens again, I would go straight to emergency. I really really wanted to try to manage the pain from home, but also I’m not managing it well and i’m ready to go if they tell me too because this poor child💔 Avry slept! She was more comfortable and was able to rest. I on the other hand was up all night giving her meds.
I just keep thinking over and over Jesus prayer in the garden where he plead with his father ‘to let this cup pass from him- not my will but thine be done.’ I can’t tell you how hard it is to say your will be done when your child is screaming in pain. That really doesn’t make much sense. And while I could never grasp the anguish of Jesus’ mother as He hung there… dying on the cross—
this past year, I’ve found myself thinking about her more than any other person in Scripture.
Because there is something about watching your child suffer…
that reshapes you.
It’s a kind of pain that doesn’t stay on the surface.
It settles deep.
It lives in your chest.
It tries to choke you and hold you captive.
It follows you into every moment—every breath, every thought, every prayer.
I imagine her standing there…
helpless, heart breaking, every nail pound -ringing in her ears with the remembrance of the sound of his baby bare feet running towards her💔
And I think…
this is a suffering few can understand unless they’ve lived it. Jesus wasn’t a baby, but he was innocent. Avry is innocent. She has done no wrong. The suffering of your child…
There are no words
To Describe it. 💔
it’s sacred.
It’s unbearable.
But there is a hope that keeps us going. A quiet, steady anchor that reminds us this pain is not wasted.
That even when we cannot understand it…
God is still working.
I don’t know that anything has ever come closer to pulling us into anger or bitterness
than watching your innocent baby fight just to live.
It brushed up against that edge—even if only for a moment.
Because it doesn’t make sense.
It isn’t fair.
And it hurts in a way words can’t hold.
But even there… we come back.
Back to the truth that we may never know why on this side of heaven— but we do know Who.
And He is sovereign.
He is steady.
He is not absent in this.
So even in the deepest, most unimaginable pain of our lives…we hold onto this:
Sunday is coming!
He is still working.
Still weaving.
Still redeeming.
And somehow—
in a way only He can—
He is making something beautiful out of what tried to break us.
Saturday, April 4
What a night! The longest stretch of sleep was this morning for about 3 hours. The med schedule is never ending. This morning she seems tired (she slept through the night) but that pain wears her out! Jake was here so he got the kids breakfast and left me sleep a bit. But I knew I needed to do her other normal morning meds so I didn’t sleep in long.
I’d promised Avry a feast tomorrow (even tho I knew she wouldn’t eat much if anything) it was the idea of a ‘normal Easter dinner’ from the photos she looked at from years gone by. I love cooking up a storm after we’re home from the hospital anyway- it clears out the stale smells! But usually Avry is attached at the hip when she comes home but Jake’s here so I tacked my long food list. It was simple but did take time! It’s been years since I made my mom’s crescent rolls but thought it a good idea because it’s something Avry will eat! Avry begged to
Make green jello in the mold and helped to mix that. She loved punching down the dough and rolling up the ‘pizza slices’ to make crescent rolls. She dumped the ingredients and spread the icing on the carrot cake! I couldn’t believe how well she was doing.
Stacy, the charge nurse called to see how Avrys doing. She’s still screaming every 4 hours for an hour till the pain meds kick in. Then once they kick in- she’s good to go again! Stacy assured me we can fix that. It’s amazing WHO you talk to and what they’ll do to make it better for you! The NP called me back and we adjusted again! Kelsey was with us during transplant and knows Avry well! She knows how this child eats right this pain meds as if she was a red head. (Yeah it’s a thing!) We upped her pain meds for 3rd time. She’s on 3 times the dose when they sent us home! This should be the magic number.
Hopefully in a few days I can start weaning her but right now there’s no reason the pain meds should run out like that and she has to be in so much pain 💔
Jake’s driver (he’d hired Aaron late summer to drive one of his rigs while we were in transplant and not working) and his friend stopped by. It’s not uncommon for Aaron to come by on Saturdays when they’re doing maintenance on the rigs. He came just as things were coming out of the oven (as it often goes when he pops in). Nothing I love more than the people that gather for coffee and comfort under our roof in the middle of a rainy Saturday!
Sunday, April 5
What a beautiful beautiful day! A simple, at home day- of faith and family. Sundays can get long being home all day. Usually by evening I’m feeling very hemmed in and ready to bust out of the house. But today was different. This morning started out with mom’s warm blueberry cream muffins slathered in rich yellow butter and we watched church online. Pastor Nate preached about ‘doubting Thomas ‘ and how really that is all of us. That Jesus does for all of us even on our days when we’re stuck in ‘our Saturday’ and we feel like hope is dwindling and we wonder what the plan is and question if there is one. That because Jesus rose from the dead- anything is possible and God specializes in resurrection. It was so meaningful, so touching! As if he had read our hearts.
Then the children opened the resurrection eggs one at a time as we read through the Holy Week story from Palm Sunday- Thro Resurrection Sunday.
This morning Avry announced as soon as she realized it was Sunday/ ‘Jesus died for us!’ And then I realized we need to
Put a whole lot more emphasis on the resurrection but that was for today. She’s got the never ending questions of a 4 year old right now and it’s putting me to the test. It doesn’t have to be a perfect answer- it just needs to connect the dots in her mind!
I had printed some Easter coloring pages and the children worked at that while we got lunch on.
Avry asked me a few weeks ago when we will make carrot cake? I pulled out the photos of our 1- Time a year carrot cake. (Jake’s favorite) I promised her we’d make one at Easter. She didn’t forget! So all day Saturday she wanted to Make sure we didn’t make the frosting without her or frost the cake without her! So today she could not wait for after lunch when she could finally eat the carrot cake that she helped to frost.
She asked if we can have a ‘feast’ and I knew it wouldn’t be possible without Meg’s help. So feast it was! I hardly ever do ‘Dutch cooking’ but on holidays I love the classic dishes.
On Saturday, Esther called and I told her Im so happy to
Be ironing my linen napkins for my dinner table and she just rolled her eyes out loud. 🙄 she said hey- you know what makes me happy? Paper plates! 😂 We are not the same 😜
We all went for naps in this gloomy rainy day. It feels so cozy inside! The grass is so vibrant green and the dry earth is just soaking it up!
Avry is feeling so
Much better day with the increase of pain meds. I can’t believe what a different child she is when her pain is managed. Today the new needles arrived for her shots. (The company hasn’t been sending the proper equipment so Jake finally just ordered what we need to mix the medicine properly and administer with smaller needles. This caused Avry much anxiety. She didn’t understand the needle is part of the shot! She thought we were doing to stick needles into her (which is what a shot is but not what she understood) oh the dear honey.
Trace has taken up whittling and is loving it!! He sat and whittled for quite a while. He completed his race boat.
Tonight we had a camp fire. It stopped raining and is really damp but the perfect night for a fire. The children roasted marshmallows.
I don’t really know how to put my thoughts into words because the gratitude runs so deep. A year ago we were a month into diagnosis with 4 days at home between cycles. We were stuck in Avrys room most of Sunday because she was getting a blood transfusion and wasn’t well. We’d tried hard to make it a day of remembering Jesus but it was so different than any other Resurrection Sunday previously.
Today we’re home. Today Avry’s healing. Today we get to help her learn more of the most wonderful story of all time! Today we’re a family of 4 on this side of heaven.
Today heaven feels closer than ever before. Today the story hit differently this year. Today our hearts are so full of gratitude that we don’t have to stay stuck in our ‘Saturday’- that Sunday is here and we get to live with hope and be fully alive because He is not dead! I never want us to forget or become
Calloused to ease or non life threatening circumstances- because the sweetness of how we’ve gotten to experience heaven and Jesus thro cancer is unmatched.
Today we celebrate life! And the chance to be fully alive because He lives!
Easter reminds us that even after the darkest night, light returns. Love heals. Hope rises. And renewal is always possible! Death didn’t win, sin didn’t win, sadness didn’t win. Jesus did! Jesus walked out of that tomb so we can walk in freedom. Loved. Forgiven. And forever held!
Thank you for the mail we continue to receive! Avry is still loving the pictures your littles color and send. Thank you for the crafts that you have sent too! And all of the things that remind us of your care and support! We love you and thank God for your kindness.
-Our story for Gods glory
For more photos of the week, go to
https://avrystory.my.canva.site/
post consolidation round 3
Monday, March 30
Andrew and Miss Sofia came over shortly after 6 AM and brought donuts and coffee before we head into the hospital. So fun having Andrew around this weekend! Jake commented several times how much it meant that they popped in this morning.
We were headed to the clinic before 7 AM. Avry was in good spirits after a melt down and ‘ I’m so sick and tired of going to the hospital and I think it’s dumb.’ I explained to her that we only have a few more times of going to the hospital and her first question was and then I get to ring the bell?? Followed by WHEN will I get to ring the bell? And WHEN will I have long hair again?
We met with Dr. Wells and Dr. Caitlin. Dr. Wells told us that June 2027 he is retiring; that this would be the last holiday weekend he has to work. I was so grateful all over again that we’re privileged to have him as our primary. And then I remembered that today is honor a doctor day- so I quickly put in an order to Tiffs Treats for our Drs! They absolutely love getting fun reminders like this and there’s nothing more than I love doing for them. It was a fairly quick process at the clinic and very soon we were walking over to the hospital. We had just gotten onto three E. And Avry asked if we think Brooke is here? Before I even saw the nurses station Avry hollered out ‘hi Brooke!’ 😍 sometimes I feel like the nurses have every reason to hide underneath the countertop when we come walking down the hallway but they greeted us with so much love and support and I know I’ve said it 1000 times and I’ll say it again- we are so grateful for these miracle working oncology, nurses who dare to care and show up every day with Smiles and support!
If anyone had a reason to grow grumpy or sink into depression, you’d think it would be them—because let’s be honest, the pediatric oncology floor is not an easy place to live, to work, or to breathe in day after day.
And yet… they still choose gentleness.
They still show up with patience.
They still speak softly, care deeply, and love these kids like their own. It doesn’t go unnoticed.
We are back in room 386! This is our original room and we have not been back in it since transplant days because it has become the transplant room. There have been three transplants since Avry and it’s been full up until now. I do love the view out of this room the best but also there are some really heavy dark memories in this room too. But today’s a new day and the sun is shining and is so vibrant green on the outside and there are new memories to
Be made. Avry wanted to begin crafting immediately. I’m so grateful for some new activity books. Tiff sent so many new markers that Avry is super excited about! It didn’t take long until reality hit and Avry was so sad all over again that she is stuck back in the hospital! The days get so long because we cannot leave the room over the 12+ hour infusion.
Jake headed home to go do a job this afternoon and then was taking Trace to baseball practice tonight. Meg is coming tomorrow and we are so overjoyed to have her back!! There’s no explaining or no having to give a list of the instructions because she was just here for six months! She will so smoothly slip right back into the routine. Avry has been counting down the days till she comes. Avry is also counting on her coming in here every single day.😅 so between today and tomorrow, there’s a bit of juggling to get Trace to all the right places for Jake in between the hospital and work.
The clock is an hour behind in this hospital room and what a welcome realization!!
Dr Badding from palliative care came in today. He is so awesome! He came in and sat down and we talked for an hour. I wish all the doctors were as chill and attentive as he is. He took me very seriously - the med challenges that we’ve been having with pain management. And yet it still took time for Avry’s questions in between all of the crafting! Between him and Dr. Cohn, they are putting their heads together to come up with a better pain management plan. I have no doubt in my mind that they’re gonna figure out something really good. And to also get her to sleep. These infusions wire her and she usually only sleeps 3 to 5 hours max and that’s not even a straight through stretch.
Around5-7pm the pain started kicking in and she cried for almost an hour. The nurse practitioner kept coming in and adjusting her fentanyl drip, but it just wasn’t enough. Of course
We are talking micro adjustments. Ice packs on her legs are always her go to. She refuses to lay down and is persistent about continuing to color or craft. Until the pain gets so bad she just curls up in a ball and cries like a baby. It’s the most hurtful, painful cry. 💔
Avry was sleeping by 8:30 which was so unusual!! She has never fallen asleep this early in the hospital.
Dr Mitchel came in tonight because the NP called in sick. He didn’t come and do rounds but by 9:30, he came into our room. The monitors were going crazy and I kept watching her blood pressure go lower and lower. The nurse had come in and repositioned her and we disconnected all the wires and reconnected them and put on the blood pressure and pulse ox again to make sure that we were getting correct readings.
I had briefly dozed off and woke up to the alarm going crazy and my intuition told me that that blood pressure was way too low, but the nurse hadn’t come in yet and I was wrestling with it in my brain -and that’s when Dr. Mitchell walked in. He barely looked at me but acknowledged me and right away took the blankets off of Avry. He took her pulse and I knew he would check to see if she was profusing well. The only question he asked me was has her blood pressure ever been this low? By this time, the nurse and the charge nurse were in our room. Normally, we have high blood pressure and high heart rate. So I explained my logic was the new med because historically this med has lowered her blood pressure when it was dangerously high during transplant. He repositioned her again and we again reconnected all of what she was hooked up to(which is a lot!) he stepped over to the edge of the curtain and was talking in a very hushed tones to both of the other nurses, but I could not make out at all what he was saying.
He went out of the room and the nurses were working on the machines.
He came back a few minutes later and brought his computer and set up on the counter countertop. Now I’ve been here for over a year and I know what it means when the doctor himself comes in parks himself in your room. This is a serious, no messing around situation.
Dr Mitchell informed me that Avrys blood pressure and respirations are dangerously low.
And we’re going to try to do everything we can to keep her upstairs, but if we cannot get it within range- we’re looking at going down to the ICU because they are much better capable. He was in communication with the ICU Dr and they were ready if we needed to go out any minute.
The first thing we did was stopped the infusion and gave her a double dose of Narcan reverse all of the med effects. We waited half an hour, and her stats did not change. The next thing we did was took off the PCA. (The fentanyl) in 30 minutes there was still no change. So even though she was below range, she was stable. Dr Mitchell continued to make sure that her body was warm- and in the meantime, I held her close in hopes my body’s heat would help keep her warm. Dr. Mitchell also asked me to try to wake her up; but she would not wake up. (not even when I did all of the things to make her annoyed! Including moving her feeding tube in her nose slightly- she didn’t even wince)
The last effort was to give her steroids to get her heart beating faster, which would then bring her blood pressure up as well. Her body was starting to get cold. Dr. Mitchell is a man of very few words. Every time he came over to the edge of the bed, in between messaging the other doctors and figuring out med dosages and talking to the nurse- he only ever said a few words. I held her so close. And put so many blankets on us trying to keep her so warm. Dr. Mitchell looked dead into my eyes and said ‘ she is so lucky to have you.’ I didn’t sleep. I didn’t blink. I held her close.
Jake had his phone off and I’m glad that he did. Because he needed to be home with Trace anyways. I wouldn’t have wanted Jake to rush into the hospital leave Trace. But I was texting our inner support circle and they stayed on the phone; praying, waiting for updates; offering presence and support.
We gave her a second dose of steroids and it was close to
3 AM. The monitors were still going crazy. I wondered if they were even accurate because she looked not alive; I kept making sure she was still breathing. Her body was getting cold. Dr Mitchell asked me
If we’ve ever had to stretch out the infusion longer than the 10 hours? We finally saw Avrys number start to climb over the next hour. They were on the bottom end of the safe range but they held steady for over an hour!!
Dr Mitchell came to say we’re not going to the ICU. He’s not excited about the number but she’s stabilizing. And we would start the infusion within the next hour and see how she tolerates it.
Blanca was the charge nurse. She was one of the BMT nurses and we had her a lot during transplant. She’s gentle and steady and so kind! She was in and out all night. I asked the nurses if I could sleep- since they were going to be in the rest of the night- to wake me up if anything changed. She assured me she would!
Dr Mitchel came in a few more times to check on Avry. Her body was warmer.
I slept.
At 5:30, Avry woke up and was hungry! I gave her a snack and she hunkered back down to
Sleep. Just as I turned off the light, Dr Mitchell came in again. He breathed a sigh of relief to hear she wanted to sit up and was hungry. We concluded it was the combo of going up multiple times on the fentanyl and the new med to help with the nerve pain and sleep that made her crash like that.
I messaged our support group ‘that was not coincidence. That was divine provision!’ Dr Mitchell ‘happens’ to fill in for someone else on the nights we have had some of the scariest moments! That morning before we left for the hospital, I prayed and asked God to put a hedge of protection around us—
to surround us with angels, seen and unseen.
I prayed that her life would be spared today…
that the medicine wouldn’t be too strong for her little body,
that it would do exactly what it’s meant to do—nothing more, nothing less.
That every cell would respond the way it’s supposed to.
That her body would be strengthened, not overwhelmed.
I asked for peace to fill the room…
for fear to be quieted,
for courage to rise up where weakness tries to settle in.
(The words were barely out of my mouth and I wondered why? I was puzzled but couldn’t shake it. What made me Pray that specifically? Kind of weird. I wasn’t even thinking about her life needing spared from
Too strong of medicine and yet now that I prayed that…It lingered in the back of my mind till We go to to Avrys room. I didnt obsess or fret, in fact I forgot about it until the next day when the verse came to mind -‘ In the same way, the Spirit helps us in our weakness. We do not know what we ought to pray for, but the Spirit himself intercedes for us through wordless groans.’
Tuesday, March 31
Avry slept in. She was tired and didn’t have much energy. But she smiled thro her sleepiness. She asked for tortilla chips. She loves the homemade ones with extra sea salt. She got out of bed and walked to the nurses station! I couldn’t believe it! We’ve changed the fentanyl drip
to run nonstop instead of just during the infusions so we can run at a lower dose and manage the pain before and after the infusions better. But that means she needs to be hooked up to the heart monitor, blood pressure, and pulse ox. That means more equipment to lug when we leave the room. (We’re not able to leave the room during infusion) I put Avry in a wheelchair and we went down to the entrance for her order. She was so tired and ready to go back to her room. She’s still wearing her beloved bunny ears from Brooke! 😍
Jake came in this morning and brought Avry a basket of fun things! Yesterday we did most what I brought and I asked Jake to go to Hobby Lobby and see what he can find. He did such a great job and finding things we’ve never done! Then we went to the healing gardens . I can’t believe how green everything is compared to just a month ago. Avry fed the fish and we walked around the walkway once but she was too tired and wanted to go back to her room.
Jake left and Apples the Clown came! Janessa made sure Apples came to see Avry. The clown has been using the same 6 tricks over the past year and still Avry giggles like it’s the first time she’s seen it! Such a day brightener!!
Meg is landing tonight and Trace has a baseball game. Avry was so heartbroken they didn’t all
Come in to see her tonight. I told her tomorrow!
Wednesday, April 1
It was a much better night! Dr Cohn is inpatient this week and I’m so happy we get to have her!
Jake came in this morning and exchanged places with me. I’m going home to sleep!! Avry is looking forward to a daddy day.
I slept all day! I am not one of those people who can just lay down and decide to sleep during the day. My body has to be dog tired or I have to be sick to sleep
during the day. I don’t even realize how much I live on high alert all the time and the other night, I didn’t even feel like my nervous system was revved. And yet I think it just is all the time that my body has adjusted to it. But the tired meter is just all the way on hot smokin red these days!! So grateful I CAN sleep!
I was planning to go back in after I got Trace from school but Jake told me to just take the rest of the day and even the night. Meg and Trace and I went in for an hour tonight to see Avry because I had promised her that Meg and Trace would come in… they colored and played the entire time!
So many of the OG nurses are working tonight and came by to say hi! They just make this a really wonderful place.
It was delicious to go home and sleep in my own bed!
Thursday, April 2
It is pouring rain this morning!!!
Thank you Jesus!!! We are so
Dry. Last week there was a wild fire in the state park. The combination of wind and being so dry…
I went to the chiropractor before heading to the hospital. Jake’s job canceled this morning because of the rain so I’m in no rush. I took Jake breakfast and we caught up for a bit. Dr Cohn and NP Kristina are the team today. They make the best team!!
We love chatting with them. Dr Cohn always comes and sits down on the recliner and makes herself comfy! Avry is puffy from
Fluid retention and she’s not very energetic. This is definitely the best pain control we’ve had to date but she’s not without pain. You can see the pain in her eyes.
She is so brave, so strong and so sweet even when she is in pain.
Nikki is our nurse for the next few days and I’m so so grateful!! Just love having some of the original nurses again! Avry loves Nikki and Nikki does so good at interacting with her. Today avry asked her when she is coming to our house?! I’m also very grateful for the mail! Yesterday we got a few packages in the mail so I was able to bring in something new and fun for Avry to do which included gem art, button art and sponge art! This kept her busy for a while. She is doing so good at cutting and pasting. She did the whole workbook in three sittings! I think it’s time we start preschool. Because why not? I can’t believe how much she has advanced in one year! They warned us a year ago most kids regress. Not In this area she hasn’t !! She buzzed thro her Holy Week workbook so fast. I expected that to take longer too…
Trace has off school tomorrow so tonight Jake and Trace are leaving overnight on a job and will be back tomorrow night so it’s just Avry and I are here tonight. The clock is ticking awfully slow…
Friday, April 3
Avry woke up and the first thing she said is ‘this is the morning so that means it’s Friday! That means we can go home today!’ She slept in past 9 and was starting to get just a tiny bit worried. Her heart rate was too high. (A sign of pain) The nurse had given her a Pantamadine infusion first thing 🙌 that’s a long infusion she gets monthly and we got it inpatient so we don’t have to get it in clinic next week. It’s used to protect kids with weakened immune systems from a specific type of pneumonia.
As soon as she woke up, she wanted to get into her purple sparkly dress! I put her in the stroller and we went for coffee and to pick up her prescriptions at the outpatient pharmacy.
With these 10+ hour infusions, we only get a few hours once she’s awake to actually be out out of the room. And it’s really important—for both of us—to go. To breathe. To feel something outside of hospital walls. We love going down to the healing gardens. Feeding the fish.
Sometimes we DoorDash breakfast and go pick it up at the entrance.
But getting there isn’t simple🫣
Right now she has eight pumps on her pole.
It’s one of those heavy-duty ones—top heavy, awkward, unforgiving. Over the past year, I’ve gotten really good at maneuvering Avry in the stroller while pulling that pole behind us… all while making sure the lines connected to her body don’t pull. Because yes—it really is that serious.
And it really is that hard. I
still don’t like narrow doorways.
Or sidewalk cracks.
I’ve had that pole almost topple before. This morning, we made our way down to the coffee shop. I struggled through the doorway—one hand pushing the stroller, the other pulling the pole—mentally tracking every tube, every line, every movement. We got in line.
I ordered my coffee and a breakfast taco. I was just about to pay…
when a man behind me stepped in front of me and tapped his card.
I froze.
I turned and mouthed, thank you—because I knew if I used my voice, it would crack.
He looked at me and said,
“Coffee is the least I can do for you. It’s something you should never have to worry about.”
I stepped aside to wait for my drink…
and I couldn’t hold it together anymore.
The tears just came.
We stood off to the side, and another hospital mama walked in. She saw Avry in her sparkly purple dress and bunny ears.
She looked right at me and said,
“You have the bravest little bunny I’ve ever seen. And no matter what—she has the most beautiful eyes.”
They called my name.
I went to grab my coffee, and the man who paid for it ran ahead to open the door for us.
“Have a good day,” he said.
We walked to the elevators…
and I just needed a minute to breathe. To regulate. To take it all in.
God… I don’t understand.
I don’t understand why perfect strangers can see us—
when sometimes those closest to us cannot. Why strangers can show up with emotion, compassion, kindness
so freely. God, what are You trying to teach me?
I was reminded how over the past year
We met God
through the people
who dared to be human.
—The ones who dared to cry.
Who let their hearts stay soft
instead of shutting down.
We met Him in strangers—
—the ones who had no reason to care,
but did anyway.
The clown at the park
who made her laugh
And prayed a blessing over our family. (She wasn’t afraid of him
Bc he was so kind and gentle)
The man in line
who paid for my coffee
and reminded me
that kindness still exists.
The “Facebook grandma”
who shows up
again and again,
never missing a moment,
never forgetting us.
We met God
in the ones who didn’t have answers
but showed up anyway.
Who felt it.
Who entered in.
Who didn’t look away.
And I realized…
Sometimes the clearest picture of God
is found in the people
who are willing to stay human
in the middle of someone else’s pain.
Forever grateful for the people who notice-
who look at Avry and see her strength and resilience,
who take a moment to truly see us,
to validate this journey,
and to feel it with us instead of looking away. 🫶
We got back to the room and Avry was pretty content entertaining herself while I packed up the room. Meg was on her way to get us. The nurse had to give Avry her Neupogen shot. Oh I was kicking myself for not rejecting it and doing it at home! I knew she already had it from the pharmacy and wasn’t sure if Jake would actually be home on time tonight to give the shot. That went terribly. 🙈 we always use ‘buzzy the bee’ (it’s just a buzzing little bee that vibrates and we put it right on her skin and it really helps with the sensation of the shot being just a tiny bit less painful). I don’t usually give too much preparation for the shot because that just makes anxiety build. Well- child life was coming from a different floor who did not know Avry. And she walked into the room, openly sporting buzzy 🙄 10 minutes before Adriana was even ready to give the shot. Oh, for goodnesss sake did I ever wanna give that child life person a piece of my mind. -you’ve been a child life specialist- you really are full of tact 🙈 as soon as Avry saw it, which was immediately because she doesn’t miss a beat, she started screaming. And there’s NO reasoning whatsoever. Because she knows what’s coming. So this child life woman tried to sit down beside Avry and talk her through her anxiety. Oh lady you really are as clueless as that little buzzing bee that you’re holding in your hand. 🙈 you just done opened a can that you cannot put a lid back on until the shot is over. And even so you will never be able to put the lid back on. There’s nothing you can do or say to make this less difficult at this point. Adriana cued in fast and ran for the shot. We got it done and I held Avry in her bed for the next 30 Minutes till Dr Cohn came by with
Avry’s ‘golden ticket’ to go
Home! Those shots are so
Painful and the more you give them- the more they hurt. They’re sore but not only that. It’s the growth factor that tells the bone marrow to produce more white blood cells FAST that makes for a lot of ‘bone pain’ and that’s totally outside of the pain from the immunotherapy that she’s receiving. This baby girl 💔 sometimes I just feel like I can hardly breathe and my
airway tightens and my lungs get chokey when I think about how much her body has endured and how she is so trusting of her parents and loves so big and bounces back to her joyful self so fast and stays sweet no matter what. 😭 (adults can learn a lot from her)
Avry had asked her nurses if she could please have a bubble parade when she left the hospital? I honestly was so shocked that she asked because she hates attention. They happily obliged! When it was finally time to leave the room- I picked her up and went running down the hall, dancing through the bubbles- laughing all the way! Then we headed out to her beloved fish to feed them and say goodbye.
She fell asleep, almost as soon as we got into the vehicle. We weren’t home very long and she started screaming. She was in so much pain. I gave her all the pain meds I could, but I knew it would be at least 30 minutes till they kicked in. She begged me to call the doctor and I did. The NP so kindly sat down with me with Dr. Wells oversight and made out a whole new med schedule for the next 12 hours! I’m absolutely appalled! It’s intense. It is a LOT of medicine! And it looks like there will be little sleep tonight. It’s every other half hour!
Jake’s getting home around midnight. Avrys a little stir crazy and wants to do things but lacks the energy. This eve I wanted to watch the Good Friday service but Avry wanted to craft. I distracted her by convincing her to go outside. It had rained on and off today and the flowers were so pretty! I listened to the service while we sat and colored a good bit of the driveway with chalk. I was surprised she had the stamina to sit out there that long.
We came in and I did her evening meds, and it was time to go to bed. And then she started screaming again. And screamed for over an hour. I tried everything. Different position, holding her, ice, heat, and gave her all the medicine I could possibly give her. It’s the most saddest heartrending cry. - like a helpless baby who is in so much pain. And there’s nothing I can do. 💔 ‘ mama please pray’ because she knows how many times I have prayed out loud and the pain does go away. It didn’t go away. So I called the doctor again. This time she stayed on the phone with me for a long time. She recalculated her meds and we went up On them again! Avry finally cried herself asleep while I was on the phone with the doctor. 💔 She was soaked thro with sweat from her intense pain. We agreed that if the pain doesn’t let up and if this happens again, I would go straight to emergency. I really really wanted to try to manage the pain from home, but also I’m not managing it well and i’m ready to go if they tell me too because this poor child💔 Avry slept! She was more comfortable and was able to rest. I on the other hand was up all night giving her meds.
I just keep thinking over and over Jesus prayer in the garden where he plead with his father ‘to let this cup pass from him- not my will but thine be done.’ I can’t tell you how hard it is to say your will be done when your child is screaming in pain. That really doesn’t make much sense. And while I could never grasp the anguish of Jesus’ mother as He hung there… dying on the cross—
this past year, I’ve found myself thinking about her more than any other person in Scripture.
Because there is something about watching your child suffer…
that reshapes you.
It’s a kind of pain that doesn’t stay on the surface.
It settles deep.
It lives in your chest.
It tries to choke you and hold you captive.
It follows you into every moment—every breath, every thought, every prayer.
I imagine her standing there…
helpless, heart breaking, every nail pound -ringing in her ears with the remembrance of the sound of his baby bare feet running towards her💔
And I think…
this is a suffering few can understand unless they’ve lived it. Jesus wasn’t a baby, but he was innocent. Avry is innocent. She has done no wrong. The suffering of your child…
There are no words
To Describe it. 💔
it’s sacred.
It’s unbearable.
But there is a hope that keeps us going. A quiet, steady anchor that reminds us this pain is not wasted.
That even when we cannot understand it…
God is still working.
I don’t know that anything has ever come closer to pulling us into anger or bitterness
than watching your innocent baby fight just to live.
It brushed up against that edge—even if only for a moment.
Because it doesn’t make sense.
It isn’t fair.
And it hurts in a way words can’t hold.
But even there… we come back.
Back to the truth that we may never know why on this side of heaven— but we do know Who.
And He is sovereign.
He is steady.
He is not absent in this.
So even in the deepest, most unimaginable pain of our lives…we hold onto this:
Sunday is coming!
He is still working.
Still weaving.
Still redeeming.
And somehow—
in a way only He can—
He is making something beautiful out of what tried to break us.
Saturday, April 4
What a night! The longest stretch of sleep was this morning for about 3 hours. The med schedule is never ending. This morning she seems tired (she slept through the night) but that pain wears her out! Jake was here so he got the kids breakfast and left me sleep a bit. But I knew I needed to do her other normal morning meds so I didn’t sleep in long.
I’d promised Avry a feast tomorrow (even tho I knew she wouldn’t eat much if anything) it was the idea of a ‘normal Easter dinner’ from the photos she looked at from years gone by. I love cooking up a storm after we’re home from the hospital anyway- it clears out the stale smells! But usually Avry is attached at the hip when she comes home but Jake’s here so I tacked my long food list. It was simple but did take time! It’s been years since I made my mom’s crescent rolls but thought it a good idea because it’s something Avry will eat! Avry begged to
Make green jello in the mold and helped to mix that. She loved punching down the dough and rolling up the ‘pizza slices’ to make crescent rolls. She dumped the ingredients and spread the icing on the carrot cake! I couldn’t believe how well she was doing.
Stacy, the charge nurse called to see how Avrys doing. She’s still screaming every 4 hours for an hour till the pain meds kick in. Then once they kick in- she’s good to go again! Stacy assured me we can fix that. It’s amazing WHO you talk to and what they’ll do to make it better for you! The NP called me back and we adjusted again! Kelsey was with us during transplant and knows Avry well! She knows how this child eats right this pain meds as if she was a red head. (Yeah it’s a thing!) We upped her pain meds for 3rd time. She’s on 3 times the dose when they sent us home! This should be the magic number.
Hopefully in a few days I can start weaning her but right now there’s no reason the pain meds should run out like that and she has to be in so much pain 💔
Jake’s driver (he’d hired Aaron late summer to drive one of his rigs while we were in transplant and not working) and his friend stopped by. It’s not uncommon for Aaron to come by on Saturdays when they’re doing maintenance on the rigs. He came just as things were coming out of the oven (as it often goes when he pops in). Nothing I love more than the people that gather for coffee and comfort under our roof in the middle of a rainy Saturday!
Sunday, April 5
What a beautiful beautiful day! A simple, at home day- of faith and family. Sundays can get long being home all day. Usually by evening I’m feeling very hemmed in and ready to bust out of the house. But today was different. This morning started out with mom’s warm blueberry cream muffins slathered in rich yellow butter and we watched church online. Pastor Nate preached about ‘doubting Thomas ‘ and how really that is all of us. That Jesus does for all of us even on our days when we’re stuck in ‘our Saturday’ and we feel like hope is dwindling and we wonder what the plan is and question if there is one. That because Jesus rose from the dead- anything is possible and God specializes in resurrection. It was so meaningful, so touching! As if he had read our hearts.
Then the children opened the resurrection eggs one at a time as we read through the Holy Week story from Palm Sunday- Thro Resurrection Sunday.
This morning Avry announced as soon as she realized it was Sunday/ ‘Jesus died for us!’ And then I realized we need to
Put a whole lot more emphasis on the resurrection but that was for today. She’s got the never ending questions of a 4 year old right now and it’s putting me to the test. It doesn’t have to be a perfect answer- it just needs to connect the dots in her mind!
I had printed some Easter coloring pages and the children worked at that while we got lunch on.
Avry asked me a few weeks ago when we will make carrot cake? I pulled out the photos of our 1- Time a year carrot cake. (Jake’s favorite) I promised her we’d make one at Easter. She didn’t forget! So all day Saturday she wanted to Make sure we didn’t make the frosting without her or frost the cake without her! So today she could not wait for after lunch when she could finally eat the carrot cake that she helped to frost.
She asked if we can have a ‘feast’ and I knew it wouldn’t be possible without Meg’s help. So feast it was! I hardly ever do ‘Dutch cooking’ but on holidays I love the classic dishes.
On Saturday, Esther called and I told her Im so happy to
Be ironing my linen napkins for my dinner table and she just rolled her eyes out loud. 🙄 she said hey- you know what makes me happy? Paper plates! 😂 We are not the same 😜
We all went for naps in this gloomy rainy day. It feels so cozy inside! The grass is so vibrant green and the dry earth is just soaking it up!
Avry is feeling so
Much better day with the increase of pain meds. I can’t believe what a different child she is when her pain is managed. Today the new needles arrived for her shots. (The company hasn’t been sending the proper equipment so Jake finally just ordered what we need to mix the medicine properly and administer with smaller needles. This caused Avry much anxiety. She didn’t understand the needle is part of the shot! She thought we were doing to stick needles into her (which is what a shot is but not what she understood) oh the dear honey.
Trace has taken up whittling and is loving it!! He sat and whittled for quite a while. He completed his race boat.
Tonight we had a camp fire. It stopped raining and is really damp but the perfect night for a fire. The children roasted marshmallows.
I don’t really know how to put my thoughts into words because the gratitude runs so deep. A year ago we were a month into diagnosis with 4 days at home between cycles. We were stuck in Avrys room most of Sunday because she was getting a blood transfusion and wasn’t well. We’d tried hard to make it a day of remembering Jesus but it was so different than any other Resurrection Sunday previously.
Today we’re home. Today Avry’s healing. Today we get to help her learn more of the most wonderful story of all time! Today we’re a family of 4 on this side of heaven.
Today heaven feels closer than ever before. Today the story hit differently this year. Today our hearts are so full of gratitude that we don’t have to stay stuck in our ‘Saturday’- that Sunday is here and we get to live with hope and be fully alive because He is not dead! I never want us to forget or become
Calloused to ease or non life threatening circumstances- because the sweetness of how we’ve gotten to experience heaven and Jesus thro cancer is unmatched.
Today we celebrate life! And the chance to be fully alive because He lives!
Easter reminds us that even after the darkest night, light returns. Love heals. Hope rises. And renewal is always possible! Death didn’t win, sin didn’t win, sadness didn’t win. Jesus did! Jesus walked out of that tomb so we can walk in freedom. Loved. Forgiven. And forever held!
Thank you for the mail we continue to receive! Avry is still loving the pictures your littles color and send. Thank you for the crafts that you have sent too! And all of the things that remind us of your care and support! We love you and thank God for your kindness.
-Our story for Gods glory
For more photos of the week, go to
https://avrystory.my.canva.site/
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Neena Spina