May 30, Saturday 

Tonight I came home to get Trace and spend some time with him and sleep in our own bed and do a little laundry. I noticed the sky was pink and the moon was so big and beautiful, and I took photos and sent them to Jake to show them to Avry because I knew she would love them so much. She always exclaims about the beautiful sunset and always looks for the moon.  It was a reminder to me that the last few days I haven’t taken the time to look at the green grass or look at the sky or smell the air outside of the hospital. This was life for the first six months of treatment- I so well remember coming home from the hospital once in a while and realizing everybody else else’s life goes on while yours is hyper alert, bedside, holding your breath and time really stands still in the hospital while it flies by. It 

 reminded me of how good we’ve had it for the last few months. A reminder to me to not take one single breath for granted, not one single pink sky, or big moon, or Avrys belly laugh and the opportunity for Trace and I to FaceTime Jake and Avry in the hospital from home. It’s a privilege.  That we get to! 

And that we’re all living on borrowed time. 

Tonight Avry’s blood pressure is really high and we’re not exactly sure why because there could be multiple culprits. I always reminded why I don’t come home- and why it’s just easier to stay in the hospital because when you know she’s not stable and you’re so far away-it’s so much easier to just be there than to be at home in the big quiet, empty house alone with your thoughts during the long dark night. 

I’m not sure if I’m just sleep deprived or this has thrown me that far- but I can’t say I’ve ever had fear in the drivers seat like it is this time around and it needs to go! I don’t even trust my intuition right now or the knots in my stomach and that’s very unusual. Is it simply from the two extremes we experienced in the same day?  How can someone’s brain possibly recover??  

We’re still waiting to hear back on the echocardiogram as well as the specific name for this bacteria. It’s such a rare bacteria that the lab had to send it to a bigger lab to be tested and evaluated. 

Not having answers does not feel good.  I look at her and I just wonder sometimes if I look back on these photos and look back to these moments and savor them long.  You don’t go there in your mind, but you go there in your mind just enough to make you savor the now  with 100% of your being. 

There are still so many messages to read through and I can’t tell you how comforting they are. Thank you! 🙏 

Trace is so happy! And that gives us a sense of peace and rest, knowing that he is so well taken care of. He’s himself and obviously feels loved and cared for.  I asked him if his supper was good. And he just threw his head back and rolled his eyes. ‘Mommm it was soo Good!’ (Dawn had biscuits and gravy at their table tonight and it just makes me smile so big to see him this happy!)  He finds so much security in  family life and continuity. (will we ever be able to offer our children this again??😰)

Sunday May 31 

Trace and I headed to the hospital mid morning. We weren’t there long until Jake pulled me aside and got very pale as he shared with me the death of Tick’s Shanon. 💔  She was hit on her bike last night. Jake lived with Tick’s family before we were married and we’ve kept up ever since. It feels like yesterday Shanon’s sister Jacinda was on hospice (cancer) when we went down to FL for a week to help care for her.  Shanon’s mother Sherry is now having to bury her second daughter! How can it be?! Life… what is our life? It is even a vapor. A breath. A mist. Here for a little while, and then gone. After everything we’ve walked through this year, those words feel less like a verse and more like reality. When you’ve sat beside hospital beds, watched your child suffer, prayed through the darkest nights, and realized how quickly everything can change, you become deeply aware of just how fragile life really is. But somehow that fragility is what makes it so precious. The more I experience, the less interested I am in things that don’t matter and the more grateful I become for the simple gifts we so often overlook—a child’s laugh, a hand to hold, a quiet morning, one more day together. Life is a vapor, not because it is meaningless, but because it is sacred and fleeting. And if our days truly are that brief, then I want to spend mine loving deeply, forgiving quickly, showing up for people, and thanking God for every moment I get with the ones I love. Because in the end, it isn’t the length of our lives that matters most, but how we loved while we were here. 💛

Today Avry had some really good moments! She’s so up and down. 

The diarrhea has gotten a bit better. They ruled out C. Diff- that bacteria is not the cause. The test did not come back negative or positive.  But we’re going off of symptoms and what has been helping would not have eased it if it was a bacteria.  It seems like the cause is switching from the fentanyl to OXY post chemo and immunotherapy as well as the 3 high dose antibiotics she’s on currently.  

Infectious Disease has good news!! Her culture post broviac removal is negative!!!  Read that again!  Yes we took a moment to cry too 🙌   I asked the Dr if we can breathe now? She said ‘cautiously.’  We need at least three days of negative cultures.  So the countdown is on!! 

Today is the first full day off of Tylenol and she has not spiked a fever so that tells us that the antibiotics are doing their job!  Infectious disease team told us that it is still very important we know the name of the bacteria that’s causing the infection. She said at this point  standard  antibiotics for this type of infection  are at least 10-14 days post negative cultures and up to 3 weeks.  That was a bit of a blow. Ugh. We really don’t love the idea of being in the hospital so long and being stuck In her room makes it so much harder.  (and until you’ve done it- don’t knock it 🙉).  Right now we’re  choosing to be relieved that the first culture was clear and rejoice and revel in this rather than dread the next few weeks.  But I’m not gonna lie. Everything inside me is screaming NOOO! We just want to go home and be at home as a family😰!!  ‘God when???’💔😭

(tomorrow we’ll  put on Miss positive pants but for right now I just don’t even want to think about it because it looks so big -Avry and I being stuck here for days on end and Jake and Trace working  5 hours away at the border all week). 

I know I knowww — I get to fight for her! She’s still here and all the things —but this is not easy!! 😓

 Avry is responding well to the antibiotics. Her blood pressure is still high, but we are able to medicate for that. Her Broviac site is clean and clear and should leave little scarring.  Today the PICC team came to draw labs. They use an ultrasound to locate the veins but oh it’s still so so painful 💔  She is getting her antibiotics thro an IV on her arm currently and  they’d warn us that the antibiotics are so hard on her tiny veins that they blow easily and it’s just so painful.  😓 

There are no words of comfort when it physically hurts this much and she knows it’s going to keep happening. And there’s nothing I can do to make it stop. Nothing I can say to make it better. 💔 Most of the time, the only thing I can do is hold her close and love her.

If pediatric cancer has taught me anything, it’s that when pain runs this deep, words often fall short. We want to explain it away, fix it, or find the perfect thing to say—but sometimes the most loving thing we can offer is our presence. To sit in it. To stay. To hold the hand. To wipe the tears. To carry what little we can.

Seeing her hurt is a kind of pain I didn’t know existed. It’s guttural. The kind that reaches down into the deepest parts of a mother’s heart and squeezes.

I would take every needle poke, every surgery, every sleepless night, every ounce of fear and pain if I could. I would carry all of it for her without a second thought.

But I can’t.

So instead, I hold her. I love her. I stay. And I pray that somehow she always knows that she has never faced a single moment of this alone. She is so much braver than she knows. And if she ever forgets, I’ll spend the rest of my life reminding her. 💛 

Tonight Jake and Trace left.  They’re headed to the valley for the week and planning to come home for Eddi’s funeral on Thursday.    (I keep thinking about  2 of Eddi’s favorite songs- ‘I’m tired and so weary but I must go alone’ from There will be peace in the valley and the other one ‘we have this moment to hold in our hands…’) 

Prayer-

Thank You for protecting Avry’s body from this infection. We are so grateful for every answered prayer and every glimpse of Your faithfulness along the way. We praise you for your all-knowing wisdom, Your constant presence, and Your unfailing love. We praise You because nothing catches You by surprise. You see the beginning from the end, and You hold every detail of our lives in Your hands. We praise You for being our Refuge in the storm, our Peace in the uncertainty, our Strength when we are weary, and our Hope when the road feels unbearably  long.

Thank You for Your mercy that meets us every morning and for Your grace that sustains us through every challenge. Thank You for being the God who sees, the God who hears, and the God who walks with us through every valley. We praise You for Your goodness that remains unchanged regardless of our circumstances, for Your sovereignty over every diagnosis, every treatment, every infection, and every decision ahead. Thank You for the countless ways You have carried us this year, for the miracles we have seen, and for the ones You are still working behind the scenes

We ask that You continue to keep this infection contained to the catheter and place a hedge of protection around her entire body. Guard her organs, strengthen her immune system, and bring health, healing, and wellness to every single cell in her fragile little body.

Thank You for doctors who are alert, thorough, and wise. Thank You for medical teams we can trust and lean on when the road feels overwhelming. Thank You for nurses who show kindness, patience, and compassion in the middle of long and difficult days. Thank You for being with us every step of this journey, and especially for carrying us through this scary  week.

Thank You for holding us in the palm of Your hand and for surrounding us with friends who encourage, pray, uplift, and remind us that we are not walking this road alone. Thank You for another day, another sunrise, another opportunity to love deeply, celebrate life, and treasure the precious gifts You have given us.

Lord, strengthen our hearts and minds for the week ahead. Give us endurance where we are weary, peace where we are anxious, and wisdom for every decision that lies before us.  As we face some big decisions about how to proceed, guide our steps clearly. Give us discernment to know the right path, courage to follow it, and confidence that You will direct our steps. Help us to hear Your voice above the noise, fear, and uncertainty. Surround us with wise counsel and unity as we make decisions for Avry’s care.

Place Your protection over Jake and Trace while they are away. Keep them healthy, and safe. Help us all to feel connected even when we are apart.

And Father, grant me patience, grace, and strength as I remain here with Avry Jo. Help me to be the mother she needs today—steady when she is scared, gentle when she is hurting, and full of love in every moment. Remind us that You are here, that You have not left us, and that Your mercies are new every morning.

Thank You for more time. Thank You for Your presence. Thank You for never letting go.🙏