I know I have been quiet for so long. Partially because I just felt like I had absolutely nothing to write. I’ve had this massive writers block- many of you have told me to not feel obligated to write when we are in the thick of things. What you don’t know is that writing comes as naturally to me as breathing does for you.  I don’t have to think about it. I don’t plan. I don’t outline. I simply put on paper what is on my mind and in my heart.  Ontop of that, I also had a severe dry eye flareup that made it impossible to read. My eyes are a lot less painful and I can read again most of the time.  

We’ve been home a month!! Its hard to believe it’s been a month and yet I feel so much longer than just four weeks… hospital life feels like a distant memory right now. And yet not distant enough. I catch myself thinking back and wondering how in the world we do it day after day week after week month after month for the past nine months?! But God…that’s how!  

Sometimes the days are long, but The Weeks somehow manage to fly by. What have we been doing the past four weeks you ask? Just being a family at home.  

Avry is doing so well!! I hear her and Trace talking or I hear her laughing and even singing and my heart soars! She’s doing some of the things I haven’t heard or seen in the past 9 months. I adore her singing in the car as we drive or when she’s sitting at the bar waiting for me to help her get down. And it’s the songs she stopped singing 9 months ago…

It’s messes with your mind- all of it.  I told Dr Paul- being at home, something in me starts to unravel. Hospital life forces me into pure survival mode, but home pulls me out of that fight-or-flight state just long enough for everything to hit me all at once. All of a sudden I’m faced with the reality of what’s happening… and my mind tries to make sense of things that don’t make sense. The noise quiets, the adrenaline fades, and what’s left is this disorienting mix of grief, confusion, and exhaustion. I feel myself coming back into my body, back into my thoughts—and instead of relief, Im lost. This was the past 3 weeks. I quit sleeping more than 4 hours a night. I was beyond exhausted. I drug myself around all day just to lay wide awake at night.  

Jake hit an all time low too. He’s not a weak minded person and has never struggled like he has the past few weeks. And there’s NO ONE  to pick him up off the ground.  I wanted to yell and smack his friends for not checking in on him. It’s been lonely and dark.  I felt too weak myself to pull up both our boot straps.  He had devotions at church- and still no one checked in even after he was honest and vulnerable about his wellbeing. Silence. Loneliness. Darkness. Confusion. Anger. 

Night after night I cried out to God- help us!!! While Avry is healing- we’re sinking! 

I begged Jake to take Trace hunting- go into nature and spend some quality time alone, together.  And then my sis reached out to me- she asked to come down. But we were ‘fine’ and didn’t really need help. And then it hit me! One of the greatest ideas of all times… instead of Jake and Trace going hunting- I convinced my adopted siblings to come see us for the weekend. (I used to tell Jake the only way that my family would collectively come here to see us  is if someone was dying in our family- in other words, it wouldn’t ever happen).  They came. My sisters arrived on Thursday afternoon

And Joe and Wes came on Friday afternoon. I can’t tell you how many times I pinched myself. It was the weekend that set us right side up.  We spent quality time together. 

Avry Wanted to make Christmas cookies with her Aunts and go downtown to the cupcake factory.  In the evening, we cozied up in the living room which felt too good to be true! Friday morning we did some last minute shopping for a gift exchange and then the guys arrived at noon. Friday night we went for dinner to our favorite local resort and exchanged gifts when we came home. Saturday morning Jake brought tacos for brunch and then we sat down for several hours and strung  over 100 ‘sound of HOPE’ bracelets  that we are  selling for Avry’s hearing loss expenses.  Trace was so happy that he had a cheering section at his last baseball game of the season. We followed that with pizza  in town overlooking the Colorado River that runs through our downtown. We went home and I fell asleep on the couch!! While everyone else visited… (healing was beginning)  Sunday morning Jake   Made brunch and smoked his famous cinnamon rolls. We sat out on the porch swing  and went for walks in the warm sunshine. We took lots of photos and ate way too much Mexican, Texas BBQ, and Christmas treats.  Avry cried so hard when they all said their goodbyes.  It was something I quit praying for- I gave up my dream and the picture of family I’d created in my head as a child. 

I have always said  -Avry’s fight is hers but cancer is not just about her. It’s a call for all of us, a nudge, an opportunity, an invitation.  Just maybe cancer is more about redemption than I ever could have imagined…  

My siblings will never know the extent of what their  presence did for us as a little family. I still cannot hardly comprehend that this actually took place!  Jake and I laughed till It hurt.  We forgot for a moment- the horrors. Our stomachs were not knotted and our throats not lumpy for the entire weekend. ….’thank you Jesus for answered and unanswered prayers!’

The following week- I continued to drag my body around with me. Jake was doing the same.  We were so so tired. I couldn’t get through the day without a 2-3 hour nap. (I don’t ever nap!) I’d sit down beside Avry and promptly fall asleep. Finally my mind and body made a truce and sleep took over! Jake and I would trade off/ sometimes it would be right after supper and I would barely be finished with meds and the exhaustion would hit and knock me off my feet and I’d go sleep for an hour before bedtime. It was certainly nothing of familiarity but when it would hit- there was no fighting it or powering through. My body was slowly coming out of survival.  

There is so much that has happened over the past nine months - and being home and having the stretch of time has been both a reprieve and mind harassing. How does one even begin to process the absolute tsunami that’s hit us and overtaken us?!  

Lamar and Ange came for an early Thanksgiving. We had a famous Sensenig’s turkey breast roast that Jake smoked to perfection.  Esther sent me all the sides from their store! So all I did was make the pies. It was delightful in every way!  Having Lamar’s family here was such a bright spot!  Another young family to spend time with- 

We felt a little hung over yet as our bodies and minds are still trying to peice our lives together. But it was so good to be surrounded with  kindness and love!  And those 4 precious little boys added so much life and happy to this house. Anddd— They filled our freezer with  meat!! The generosity of  these dear friends 😭 

Thanksgiving was a quiet day. A day we needed to just rest. I have no idea where the week itself went…Trace had off for the week. 

He’s become a pooper-scooper. Need I explain?! 🙈🥺 There are a few boys’s age here in the neighborhood that have quite the entrepreneurial spirit and have taken up odd jobs doing anything they can for a few dollars. (let me tell you we’ve never lived in the city before and keeping a nine-year-old busy in the city is nothing like sending him out to dig holes with a shovel or playing in the woods! So Jake came up with this idea to go  offer to clean up after dogs and he’s absolutely thrilled with it! He jumps on his bike with all his tools (he’s figured out how to perfectly maneuver them) and off he goes for a whopping $5/service. Most of the neighbors on our street have obliged! (bLESS!!)  He has repeat weekly customers. I’m so proud of him, really! I can’t help but chuckle at the thought of him being a daddy and telling his boys his first ‘job.’ 

Avry is down to going to the clinic once a week. Jake has kindly offered to take her by himself giving me a few hours to get the very important necessary tasks done. She’s my shadow all day and it’s pretty hard to do anything outside her care when she’s home with me. One of the things I’ve started doing every day is just sitting down and playing with her. Slowly introducing tiny bits of independent play-  today we did a nativity scene floor puzzle. She prefers stretching on the floor, doing a floor puzzle over  any sort of physical therapy. Last week she crawled up  the steps all by herself!! What an accomplishment! She loves playing hide and seek with her family and I caught her ‘running’ on video!  She walks very ‘stiffly’ but has come a long ways!  Her hair is popping through so fast and every day we watch her eyelashes and eyebrows grow! There is a good chance she will lose all of it again when we start chemo in January-  but she just might get her Christmas wish of having hair!  Yesterday she went to the drawer in my bathroom and picked up the comb ‘ mom do you remember when I used to comb my own hair and you used to brush out my hair with your black brush and it would hurt and so then Miss Amy gave me the purple brush and it didn’t hurt anymore?!’  These memories make me smile! 😊 as she heals, she remembers more and more. It’s so much fun to hear her remember but it can also torment her mind as she tries to peace together her little life, and make sense of it all.  

Sunday we went to church. Most of the time I just feel like it’s a complete waste of energy that I already don’t have any extra of right now. She was actually begging to go to Sunday school and I really didn’t want to take her. But there’s a lot that needs to happen before we can just get in the car and go to church. Her meds will have to be timed perfectly as to not trigger nausea or vomiting. Usually, by the time we actually get in the car to leave I’m ready to go crawl back into bed and have a good hard cry. And this Sunday was no different. 

But we went - and she did so well!! We were barely seated and she burst out ‘Miss Amy…’ and told her teacher about drinking hot chocolate and how much she loves it😍 THATS MY AVRY JO!!!  I think the rest of the class was so startled but I was so proud of her for how well she engaged! Miss Amy had told me to sit across from her in Sunday school- so that Avry could lip read and it really made all the difference! She was energetic and  popped off the answers to questions before anyone even had the chance to raise their hand. (She is the youngest in the class and the class goes up to age 9)  I asked her if she would like to say her memory verse  and I was trying to tell her what it was- but she just wasn’t getting it. So I asked Amy right across the table to help her- I watched Avry lip read  and repeat it almost Word for Word! It was incredible!! There are some sounds she just does not hear and her speaking reflects that. (She was an early talker and very clear so

It’s hard to see her digress so much)  It WAS worth the effort to get there.  This is the first that we’ve actually been able to make it completely through Sunday school in awhile! We weren’t out of class very long and she started crying asking to go back home- I knew she was putting her best foot forward the entire time and she was so tired! Her bravery, strength, and courage wow me every time!  (And this Sunday, she didn’t cry about everyone seeing  ‘her ugly face’ in her words when she goes to church ) 💔

Last week, her lab results came back very confusing. The Dr didn’t seem to alarmed but definitely baffled. This was very unsettling. Right away our minds go to relapse since it’s very common over this time if you didn’t achieve that curie score of 0 pre transplants.  Her weight was up significantly last week, which didn’t make any sense either. Her intake is 100% up to me. I get to be not only the momcologist, but also the nutritionalist! Every day, it’s a balancing act and worrying if her fluid to feeding ratio is balanced.  It always reflects on the labs as well. They know exactly what I put into her body and how much.

Sometimes I just stop and take inventory of everything that is on my mind all the time and I’m pleasantly surprised at how well I’m holding it all together and staying ‘on my axis’ and ‘in orbit.’ Her weight has been very worrisome to me. In nine months, she has gained 15 pounds. She is not the tiny little petite girl that we took in March. It’s not a natural weight gain and it plays into the grief of the little girl that I lost. You would think I’d be fit as a fiddle and thin as a bean pole carrying her around. I assure you this is far from my reality.  I have asked the drs what percentile  she is in and if they’re not worried about obesity because there’s something like being too heavy. But at this point, they are not too concerned.  The minute she starts dropping weight is very worrisome.  What I have learned is that these little warriors heal so much faster when they have a bit of excess to go off of. And also, you never know what’s around the corner— for example when we were going through transplant and she lost 6 pounds, she was still able to heal very well because she had that much extra to go off of so that it really didn’t put too much of a strain on her body.  The doctors all assure me time again that this is a good ‘problem’ to have, even though they would not call it a problem because with the alternative- it’s another whole set of issues that are much harder to resolve.  She’s not eating nearly as as much as she was while she was on narcotics and steroids. Now I have to pretty much bribe her to eat. I am so grateful that she has a feeding tube and that it has held up so well for her and that we have had zero complications with it! Her feeding tube is a lifesaver.  Going forward the goal is to find that perfect balance, and maintain. 

We still have not heard anything yet about radiation other than the fact that we have been accepted  at Dallas. At first, we were really disappointed that we are going to be this far away from

Home, meaning that we will not be able to come home on the weekends. She will have a total of 12 sessions of radiation. Radiation will be five days a week, sedated every morning.  We should get the call any day to go to Dallas to meet the team as well as get her form measured and made for her that will go over her body as she is in radiation.  The radiation conversation was a hard one. Nothing ever prepares you for all of the side effects and you try your best to not think about it until you absolutely have to. They will be radiating all of her internal organs so that chance of them growing at different rates is less. I won’t even go into all of the side effects because they’re too awful to even type out. Ending in ‘and possible death.’  I used to hear this jargon three times a week and somehow your heart never gets used to it while numbing yourself to this reality in the most self protective way. I find it so paradoxical that you choose between death and death at both ends of the spectrum. Death, if you didn’t treat and the possible death from the treatment. (that in itself feels impossible to wrap your mind around!) (Newsflash. None of us are getting out of here alive but goodness it’s just a dinner party all Over again?!) another side effect that is very common is that radiation takes about an inch off of these little kids. Every week she gets measured because of the possibility of shrinking due to chemo and so far we have not seen that with her in fact, she has grown much taller!  

Our plan is that on Fridays, Trace will get off of school at noon so him and Meg can drive the 3 1/2 hours so they can spend the weekend with us and we can be a family for at least two days! I don’t love the idea of them driving up on Friday and coming back on Sunday and dealing with all of that crazy traffic-but the alternative is being separated for those three weeks and it’s just too much and too far.  We are hoping that one of the weeks we need to be there will be over Christmas vacation so that Trace can be with us for the week! One less  week of separation-  I haven’t yet fully prepared myself emotionally or physically for radiation. The sedated part is never easy as she is fully aware of what is happening due to none of the premeds being an option for her anymore as she does not respond to them. There’s always red tape to bust through and while I will always advocate with my very life for her-it’s  beyond grueling and exhausting and heartbreaking and I don’t know how I do it except ‘but God…’ and there’s only one set of footprints. 

We are ready for radiation-in that the longer we are at home the harder it is to ever think of going back. Home is very pretty easy compared to living in the hospital and our family being separated and just being a family is so very sweet.  We weren’t home long and one night Avry and I were laying in bed and she whispered ‘mama, I love my home and I don’t ever want to leave. Tell me we don’t have to go back to the hospital.’ She was desperate and had fear in her almost sleeping eyes. So I did what every good mother does -I straight up, looked in the eye and lied to her.  ‘ no baby we’re gonna stay home.’  There was no way I was gonna break her heart right before she fell asleep and make for two hours of crying her eyes out all heartbroken that she has to ever go back.  ‘God have mercy!’ 

Jake and I felt that it was very important that this child have her hearing aids before we go into radiation. Back in September when we had taken the children to the beach- Avry had this little tiny shell that she was so thrilled about. The tiniest conch shell you’ve ever seen that she would hold up to her ear and she was so pleased that she could hear the ocean. Last week she found her little yellow seashell and was so sad that she couldn’t hear it anymore. She wondered why that seashell didn’t make sound, and if it was broken. I couldn’t bring myself to tell her that it was her ears that weren’t working. ‘ mama I kind of can’t hear your voice anymore.’ She says in the most timid sad tone. And it’s true- sometimes I wonder why at the end of the day I’m so exhausted and overstimulated and completely spaced out. Some of the reason is is because I feel like all I do is yell all day just so she can hear. And even so she gets very little of what I say. She mostly lip reads. When we drive is really the true test of how little she hears because we’re not facing each other. She can still hear Jake’s voice well. But it’s those higher decibels that she hears little to nothing, which is why she can’t hear Trace and my voice. The audiologist recommended that we get new impressions and an updated test since it’s been six months since she had the first set and little peoples ears grow so much in that time! We’ve been waiting until the oncologist felt like it was safe to sedate her after the respiratory issues we had during transplant.  In the meantime, we went into the office in Austin and she picked out her earpieces. The night before she and Jake sat on the steps and she spilled out all of her worries and frustrations about not hearing anything I say anymore. I sat at the top of the steps, listening to every word.-it was absolutely precious and my heart crushed all over again over her daddy. He’s a good one.  He explained it so well and so simply, and she completely understood it! He told her about the earpieces she gets to wear that’s going to help her hear again! He explained that it’s much like the earpieces he wears (airpods) although very different in application she got the message and came away from that discussion very excited! The next day she picked out clear earpieces to go inside her ears with pink sparkles.  I have been so grateful for Rosie and Shana- Shana got her hearing aids when she was Avry’s age. They get it- and it’s been so comforting!  

She has been asking multiple times a day since then when she gets her earpieces- her sedated hearing test is scheduled for Wednesday and they will put the order in yet on Wednesday in hopes that they will be here before Christmas! Hearing aids will not be a fix all  for Avry because of the extent of her hearing loss. Every time we discuss this hearing loss, I have to fight back tears. Like cancer wasn’t enough?!!  I think every audiologist and tech probably has me marked as the red eyed mother in there!  I found it very interesting the last time we were in the audiologist’s office- there were four little girls about Avry’s age each with their daddies! Hmm… something about girls doing better for their daddy?!! This scenario is very familiar! 😊

I have not yet prepared myself emotionally for Wednesday . I used to do sedation three days a week…. Don’t ask me how! There’s always that red tape to cut through and somehow I end up fully gowned, a bunny suit, marching back to the OR beside the team, holding my little girl, distracting her with all the happy thoughts, even though her anxiety is sky high and I’m holding myself together on a shoestring- holding her while they give her the injection and watching fall into a subconscious state and get limp

In my lap after which we transfer her onto the OR table and I walk out of the OR solo, with legs of lead,  a heart that feels like it can’t possible continue to beat until I fall into the arms of my husband at the end of the hallway. And then I wonder how I will ever be normal again or how I will ever do life as a normal mother and wife…. Yeah she just might have a reason to not ever be OK again and for sure a different version than ever before. Maybe even unrecognizable. 

On Saturday, we met with a potential couple who trains service dogs for deaf children. The lady herself is deaf and was so knowledgeable. They have their own breeders and it is a one stop shop which is incredibly rare. It is next to impossible to find three components of cancer, deaf, and a companion  in a service dog. Again, I did not expect to break down in front of her as she was explaining what all these dogs can do- she hugged me and told me ‘Rose, there is hope!’  it all feels impossible to ever get back on track- as my child has both reverted in some ways to a much younger version and yet fast advanced in other ways.  And she is exactly right-HOPE.  And I had to think about Hope. It’s not just wishful thinking. But defined  as optimism paired with strategy. 

 It’s a belief that something better is coming—and a willingness to act. And that’s what we are doing! 

Our family has not yet started learning sign language as it’s not something that feels doable right now. But they even teach the dog sign language!  It truly feels like such a gift, God directed.  We need to start immediately- so that Avry’s service dog is ready to join her when she will Lord willing be done with her inpatient treatment next summer as it takes some time for the training to take place. I also love that it’s not once and done training- that as  Avry develops and her care shifts and changes, so does the Service dogs training. Of course, along with this comes a very big  price tag. We are going to have to sell hundreds and hundreds of rainbow bracelets. But honestly- it’s not a worry. God has always provided every single step of the way and He will again! We have no doubt in our mind. 

Avry Spends her  days doing puzzles, sticker by number, stringing beads for bracelets, coloring, watching her favorite show, helping me in the kitchen as much as she possibly can, paging through cookbooks and begging to make pretty recipes. It’s been cold and rainy and she is really missing her golf cart rides! If we don’t get out of the house at least once a day, she can hardly handle herself. So sometimes we’ll just jump in the car and go for a drive. She loves picking Trace up from school and  waiting for her daddy to come home every night. Right now we play Uno attack almost every night. She’s been  playing since she’s been two and I think it’s one of the fastest and easiest ways to teach colors and numbers.

Two weeks ago we hosted her blood drive here in our community. We were completely blown away with the amount of people that came out! There was a waiting line and many of you who came out didn’t even get to donate. The support  from the local community was overwhelming the best sort of way! Thank you for sharing and giving a second chance at life! Avry remembers very well her hours of a bleeding nose without a clotting factor in her body and zero blood to be given back to her! She very well understood what everyone was doing in that bus and was in absolute awe. I will never look at giving blood the same way after our scary experience in the hospital! The shortage is real. 

Life is full and rich in the ways that money could never reach.  This ‘schooling’ is not for the weak. I often have to go back to my writings from early on in this cancer journey and I marvel at our strength and wonder where and at which crossroads it diminished so.  We’ve come through the hardest parts of this journey (or so I’m told) and it feels like we’re hanging by a thread.  You can’t stay numb or neutral.   Some days it’s less hard  to pull yourself out of the darkness than others.  I am forever grateful for my colleagues that we can reach out to it any time to help us process and gather enough light to keep going.  

To you, it may look like our faith is weak. That we’re losing some of the valuable parts of us, that were changed and were different and most likely don’t make much sense to you. It’s true- I don’t know if I’ve ever been so confused, angry, and hurt to watch my family  go through this. 

I wonder how we still believe in a God-that would allow an innocent child to suffer so horrifically, and by some twisted logic to use this to bring him glory? 

Theres so little that makes sense.  

But one thing that is so firmly rooted and anchored in the depths of my being that I cannot shake is this:

Joseph spoke these words after years of betrayal, abandonment, slavery, and imprisonment — after everything that should have broken him. And yet he stood there, fully restored, fully redeemed, and able to see the bigger picture:

People become calloused and thoughtless and can 

intend harm. 

Life can deal blows.

Circumstances can fall apart.

But God… God weaves it into purpose.

He bends evil into goodness.

He turns wounds into rescue missions. Joseph wasn’t minimizing the pain — he was reframing it through God’s sovereignty.

And that’s the place I find myself today. Cancer is horrible.

It is terrible.

It is unfair and cruel and gut-wrenching.

It has taken more out of us than we ever imagined we could give.

I  have cried until my eyes burned. I’ve been so angry. I put a hole in my closet wall. 

I have held my baby while she fought for breath.

I have paced hospital floors at 3 AM praying my way through the fog of the night.

I’ve lived more sleepless nights than I can count, and felt fear in places of my soul I didn’t even know existed.  I have questioned every aspect of religion as I know it.  I’ve wrestled deep and hard. 

But still —

somewhere deep in the pit of my being, beneath every tear and every tremor of fear, I know there is purpose.

Not because cancer is good — it’s not.

Not because the suffering makes sense — it doesn’t.

But because God is who He says He is.

The same God who met Joseph in the pit, in the prison, and in the palace —

is the God who meets us in hospital rooms, sleepless nights, and devastating diagnoses.

He is the God who bends what was meant for harm into something redeemed.

The God who takes broken pieces and builds altars of hope.

The God who never wastes pain.

The God who writes stories that don’t end in darkness.

I don’t understand the how yet.

I can’t see the whole picture.

But like Joseph, I can look at the unimaginable and whisper:

“God, I trust You.

Even this — You will use it for good.”

So tonight, even if sleep doesn’t come,

even if the waiting stretches long,

even if the ache feels heavier than yesterday —

I will hold onto that deep, unshakable truth:

What was meant for harm will not have the final say.

God will.

And His goodness will meet us here — even in this valley.