Click the link below to listen to Part 1 of Nina Spina's podcast, featuring Jake and Rose as we share the beginning of the journey navigating Avry's stage 4 diagnosis.

https://podcasts.apple.com/us/podcast/pivot-2-positivity/id1692281091?i=1000753889525

Sunday, March 8
What  a beautiful day. A day that holds painful, traumatic memories has been transformed into something sacred — a day of intentional connection, big love, and counting the miracles. Today we celebrate how far Avry has come.We celebrate the prayers that carried us, the people who held up our arms, and the milestones that once felt impossible. What could have been a day marked only by heartbreak has become a day marked by gratitude, hope, and remembrance. And that… is a miracle in itself. 💛 The morning started off slow. Avry ran fever during the night and the diarrhea came back with a vengeance. Jake and I took turns every hour with her. It was both a long and short night! We tried to sleep in but  that didn't work so well.   She woke up  smiling in spite of not feeling great.   At 2:30, some of our closest friends and  cheerleaders gathered with us on Zoom to pray, count our miracles, speak life over our family, and stand with us in faith.There weren't many on the call—but they were the ones who have consistently been here from the very beginning. The ones who have walked this road with us, prayed with us, cried with us, and believed with us.We ended up talking for well over an hour. It was so healing to remember together—the hardest days that nearly broke us, and the moments that somehow still brought laughter in the middle of it all. What a gift it is to have people who will sit with you in both. So if that was you on Zoom today — please know your presence meant more to us than we could ever fully express.Taking the time to sit with us, pray with us, remember the miracles, and speak life over our family was such a gift.We are deeply grateful for you. Truly. 💛 God reward you for your sacrifice and daring to care and be involved in this way!   Avry only slept for 20 minutes today. But she woke upA different girlie! Her eyes were sparkling and she was ready to play! Another miracle! It was cold  outside but we bundled her up and went out in a family golf cart ride over to the park.  She's stillPretty ouchie and it's very difficult to lift or move her without hurting her 🥲  It was music to hear her giggle at Trace and watch her on the swing!  We didn't stay long at the park because it hurt too much.   We stopped to pick dried dandelions at Avrys request and blew the seeds while  making wishes with them! We went back home and jumped in the van and went for a drive out to Smithville the back way to see if we could find bluebonnets.  (Spring is later this year after all the cold). We came home and put up Avry's new 'we fight together' garden flag in the flowerbed. Jake grilled steaks for supper and Avry and Carol played games.  It was so fun to see Trace and Avry interacting again and loving on each other. When she is feeling so yuck- he keeps his distance.    It's hard to believe we've been fighting cancer for 365 days. We never let ourselves look too far ahead because the future felt too big… too heavy… too unknown. One day at a time was all we could hold. And yet here we are. A full year later. And for the first time it feels exciting to imagine where we might be one year from now. Today reminded us again that God works miracles through His people. We have seen it again and again this past year — through prayers, messages, meals, presence, encouragement, and people simply showing up when it mattered most. So if you feel that little nudge in your heart to bless someone… don't push it away. Don't overthink it. Act on it. Because we can tell you firsthand — those small acts of obedience can carry someone farther than you will ever know. We say this often, but it's because it is the deepest truth in our hearts: Thank you for believing with us.For standing in faith for Avry's future.For speaking life when the road felt impossibly long. It's easy to get swept up in the emotion of a diagnosis day- cry your eyes out and offer to 'sail the seas'  and 'cross oceans' in the heat of the moment when  everything is fresh and shocking.   But it is a completely different thing to still be showing up a year later — still praying with us, still encouraging, still loving, still checking in, still showing your care,  still believing. Because presence is everything.   And a few of you  are stillhere, doing exactly that. We are deeply aware that we have been carried by your kindness. Thank you to our Lincoln church family for not allowing distance to keep you from blessing us far more than we could ever imagine or repay. We are so grateful to God for your 'presence,'  love, your prayers, and the way you have continued to show up for us from afar. Your support has meant more than you know. We also want to extend our gratitude to our support team. You have picked up the pieces when life felt like it was falling apart. You've sent updates, blasted prayer requests, dropped your own plans to come sit with us, fundraised, and stood faithfully as our inner circle throughout this entire year. You've seen it close up and personal. We recognize and acknowledge the sacrifices you've made to help keep our family upright. We could not have carried this without you. And to our local community — thank you. Thank you for taking Trace to games and pouring into him. For inviting him to spend the day, and  spending quality time with him when our attention had to be divided. For cutting the grass, dropping off meals and milk on the front porch, washing our vehicles, and quietly meeting needs before we even knew how to ask. We have met more kind strangers this past year than we ever imagined possible, and our hearts have been deeply touched by your compassion. We have truly experienced the hands and feet of Jesus through the most unexpected places.   Thank you. With our hearts 💕   And as we continue into the next phases of treatment, we know that the same love, prayers, and faith that have carried us this far will continue to surround us. We are grateful beyond words. 🙏  Avry's fight is her fight. She is the one taking the chemo.She is the one enduring the procedures.She is the one climbing the stairs on shaky legs. But her fight confronts the rest of us. It challenges us to examine our faith.It forces us to decide what really matters.It asks us whether we will shrink back in fear or rise up in courage. Her battle is hers —but the lesson is ours. How will we love?How will we show up?How will we live differently because we witnessed her strength? Jake picked up the most darling little 'miracle cake.'  Avry was so excited to blow out her 'miracle day candle.'  1 year of fighting cancer. 1 year of choosing to find the miracles every single day!   Monday, March 9 Carol took Trace to school. Jake left for work and Avry and I headed to the clinic. She needed fluids because once again she was very dehydrated. She also got her monthly infusion of Pentamidine. It's a medication used to prevent or treat a serious type of pneumonia called Pneumocystis pneumonia (PCP or PJP), which mainly affects people with weakened immune systems.   It took about 3 hours and she still was obviously very dehydrated. So they continued giving her more fluids…what a long, long day! We expected it to be a quick visit and weren't prepared to be in the clinic all day. She still gets put into an isolation room as soon as we enter the Clinic. (which is very isolating!) Do you know what's hard today??   Listening to other people talk about their normal lives.Running to the grocery store when they need milk.Throwing in a load of laundry when the basket gets full.Making plans for the afternoon without thinking twice. Meanwhile I'm sitting here watching my child get a drink through needles and tubing connected to an IV pole. For us, a “quick visit” to the hospital can turn into six hours… or an overnight stay… or longer.Nothing is simple anymore. You learn very quickly that you don't get to plan your day — or your life.Everything hangs in the balance of lab results, doctor rounds, and the next unexpected complication. It's a level of exhaustion I don't even know how to describe. I keep a suitcase packed by the door because at any moment we may have to leave.And this morning… the one morning I forgot to grab it. If I ever get the chance to live a normal, boring life again —the kind where the biggest decision is when to run errands or what to serveunexpected guests,  or fold laundry, or the dilemma of running out of gas in a big city, or getting flagged down wrongfully at the airport for drugs— my shorts will remain unwadded and  I will never take it for granted again.   We waited and waited and wondered if we would be admitted… the diarrhea is back.   There's something about sitting on your bumm for hours on end ima super hard chair in a tiny hospital cubicle that just drains the life out of you.The walls feel too close.The air feels heavy.Time moves strangely — either painfully slow or way too fast depending on what the monitors are doing. You sit there watching the IV pole, the bags, the numbers on the screen… waiting for the next update, the next lab result, the next nurse to come through the door.And after a while it starts to feel like the whole world is moving on somewhere else while you're stuck in this little square room that smells like antiseptic and worry.It's exhausting in a way that isn't just physical.It's emotional.It's mental.It's the kind of tired that settles into your bones. No one really understands how heavy those chairs feel… until they've had to sit in one for hours watching their child fight and waiting for a decision for the Dr.   Finally  just before they closed the clinic- Dr Wells decided we could go home but to monitor closely and what to watch for.   Avry was thrilled! I was so tired we went out to the vanI put Avry in her car seat and I jumped in the passenger seat and we were sitting there in the quiet. Soon Avry broke myExhaustion and said 'uh- Mom??'  And we burst into laughter! Silly mom!  And it dawned on me I'm supposed to drive us home😂🙈🙈🙈 so I jumped into the drivers seat and away we went!   We got home  and Miss Sofia was here! She has been the real MVP thro this all with being the school teacher! We're beyond blessed to have her.  She brought  trace home, her and Cody went rollerblading with him after school. She brought  Avry balloons too. Just a sweet touch of presence and remembrance!   Avry couldn't wait to get on the golf cart after we got home.  She sang her little heart out all over again. 'Your ways better' and 'I'm in the Lords army.'  There  is just nothing like her resilient spirit that keep the rest of us going!  She is truly the bravest soldier I've ever met!     Monday night we had a meaningful time of prayer and remembering just with our little family. Tonight feel sacred and a year ago still feels so very raw.   Tuesday March 10This morning Avry slept in. As soon as she was awake, she wanted to make pumpkin pie! Why not?!  She loves to help roll the dough and measure everything and smell the cinnamon. Today she begged to crimp the edges so I taught her how and she did half of it!! Of course it takes way too long to bake and way too long to chill according to her.   Wednesday March 11   Avry's wish came true! She got to see a real rainbow in the sky. We were on the way home from taking Carol to the airport when we saw it!   Thursday March 12   We finally were able to have a campfire and roast marshmallows. It's been so windy this spring.   We look back at the photos of a year ago and we carry the memories, not only in our souls, but also our bodies.  Every night this week we get to be at home and tuck the children into bed and be a family feels like pure magic. Like a dream. Like pinch me, is this real?!   I can't stop looking at the photos from a year ago and then from the past week  and just being so full of gratitude😭😭😭God has done the exceedingly abundantly more… Friday March 13   Every day, Avry reminds me that we need to go out to water the flowers. She very  faithfully waters each  one with so much love and care. She often talks to them and makes sure to say goodbye to them.  Her world is softer because of the horrific things she's endured this past year. She notices the small things now—the petals, the sunshine, the quiet moments in the garden. Watching her tend to those flowers so gently reminds me how resilient a child's heart can be. Even after so much pain, she still chooses tenderness. And maybe that's another of the quiet miracles of this journey. 🌸 Avry also remind us to get the mail every day! We have so been enjoying all the cards, the children's artwork you send her. The gifts cards and personal checks! Thank you 🙏 God bless your giving hearts.   Tonight is low country boil at church.  Last year it was closer to the end of March. It was the day we needed to shave her head the first time and therefore quickly squeezed in family photos in the healing gardens before. Lamar's were leaving that night yet but stayed to snap photos and take Trace to church.  A year later- Trace really wanted to go! Jake was still finishing up some jobs and Avry was too tired to go. Jake dropped Trace off at church and went back to finish his job - our family still splinted in all directions a year later 💔 The 1 year mark makes us realize in a more real way the grief of missing a whole year of a normal life…and watching her innocence being robbed from her kills 💔💔💔💔😭😭😭😭 and yet the next day, she would always wake up with a smile! The one-year mark has made us realize just how much has been stolen from our family. Cancer is evil and merciless.And yet, in the middle of all of it, we hold tightly to the people who have stayed. The ones who continue to steady us, pray with us, and pour love into our family when we have little left to give You have been a lifeline in the storm, and we do not take that for granted. We cling to you with deep gratitude. Saturday, March 14 We started making Saturdays a family day.Jake doesn't go to work unless he hasn't met his minimum for the week.It's a small shift, but it has drastically changed our family dynamic for the better during this very volatile seasonIn a year where so much has been out of our control, protecting that one day together has given our family something steady to hold onto.We cook our meals together as a family.We play games.We get outside.We have our family focus time where we celebrate each other's wins from the week.We do our Sunday prep together so the next week feels less chaotic.And we intentionally wind down early at the end of the week.After a year of living in survival mode, these rhythms have become an anchor for our family.They remind us that even in the middle of hard seasons, we still get to build a life together.💛 This morning we started out by playing games upstairs with the children.  They had so much fun! And again- when the four of us are all together like this- it just feels like pure magic!  Then Trace and Avry were determined to make pancakes on their own. They did pretty well. Mom of course came in clutch with the aftermath! 😜I wouldn't trade these days for the world!!  And the delightful mess.  Yesterday Jake had taken Avry to the clinic so I could stay home and at least get the floor mopped…this morning Trace had brought his baseball gear into the kitchen and there was sand all over the floors again.  It made me smile- it's proof of LIFE!!   I forgot to mention that yesterday was  an extra good day!  Jake got officially trained in Broviac  dressing changes. Which means we will be able to change her dressing at home!! This  is not something that our hospital normally does but Dr Wells suggested it and we ran with it!  There has been plenty of times in clinic or even in the hospital, where the nurses were not accustomed to Broviac dressing and we have stepped them through exactly how to do it.  We had asked them early on if there's any chance that we could just do it at home but because she was so neutropenic  and the risk of infection was so much higher- we agreed it would be better to wait. This is an incredibly traumatizing experience for all involved. It used to not be this way- I don't really know what changed, except that there is no sense of reasoning with Avry on it anymore. She's pretty excited about her daddy doing it at home with her. My idea behind her dad getting the training is that I'm the one that holds Avry while he will be the one in the sterile field. We have no doubt that this will go well for us.  I really think this will also help to minimize the trauma that she associates with the clinic so hopefully we will have much smoother Clinic days and a whole lot less anxiety on her part.  We really appreciate the way that the doctors have come together on this- another reason that we love our oncology team is they see the need of the patient. She's not just a statistic, a graph, a puzzle to be fixed- a cure to be found. She's a little human with feelings and emotions and they see that and it matters to them.   Jake and Trace left for baseball and Avry and I were gonna come a bit later once the groceries were delivered. By the time they got here, Avry was so tired and was begging to snuggle. So we stayed home. I'm guessing her counts have come down a bit and that's why she's more tired and has less energy.   

I also wanted to mention to any of you who do not have full Internet access or access to Zoom to the challenge next week that Dr Paul is hosting- go ahead and sign up! You will receive a confirmation email after you sign up for the free challenge. After it gives you the credentials to log into Zoom it will also give you a phone number that you can call and listen in on!  My personal suggestion is that you upgrade to a VIP for the very affordable price of $27 so that you can access not only the recordings but also you'll be able to hear the live Q&A  With Dr Paul himself. Did I mention that every day during this one hour additional Q&A, there will be a special guest speaking as well? Yours truly is the honored special guest on Friday.  😉 So many of you have signed up and  we couldn't be more excited to have you!  Please message me personally if you have any problem accessing the call on Monday! (if you are looking for peace, no matter what your circumstances; confidence in your roles in relationships- This is for you!)   

https://q23spm.fi50.fdske.com/e/c/01kkrj87r3y356wa00hae2gq83/01kkrj87r3y356wa00hebfyze7

-our story for God's Glory