Monday, March 16

Today Avry had an appointment with Audiology. We took Trace out of school because historically, she  does so much better with any of these appointments when he’s along.

It was awful for the first hour. She just screamed. She knew the appointment was coming and could not fall asleep and therefore missed her nap before we left for the appointment. She was a bag of nerves! Jake tried everything he knew and even took her out of the room for a while and tried to distract her. He brought her back in and I tried everything but got nowhere!! It didn’t seem to make a difference that Trace was here.  And this was only the beginning. This was supposed to be the easy part. But I knew this appointment had been building in her mind since yesterday when I told her we were coming. 

Kaylee got her new hearing devices programmed. They don’t fit very well at all though.  Somehow the molds do not adhere well. On top of that they did not make them the same
As the last ones- they are not pink with bright pink sparkles -and this is very serious to the 4 year old!🥹🙈

And then somehow… the last 30 minutes went really really well. 

I still can’t even explain what shifted. Kaylee went out of the room for a bit and it was just the four of us. Avry snapped right out of it. She started laughing and playing with Trace.  When Kaylee came back in the room, she took  us to the ‘box’ to do some Testing.  

Don’t ask me what happened because I can’t even explain it! 
Avry did so so well!! we were in this extremely quiet, tiny little room. (the only other thing I imagine is this quiet is probably a coffin!) Kaylee went right outside the room and there was a speaker in our room that she talked through. Avry was recorded as she repeated every word that she heard. We did it with her earpieces in and then also with them out. Most of them were simple two syllable words.  /cupcake. Baseball.  Hotdog. Popcorn. Toothbrush. Sunshine. Rainbow. Cowboy/ Super simple words that were very easy to hear if she could  enunciate  the whole word. 
The other thing we did was played games- which we’ve done many times before. She wears headphones and as soon as she hears the bird or the cat,  she ‘ feeds a banana to the toy monkey.’   this tests what decibels she can hear.  She did this with and without her hearing pieces as well.

I am so grateful that we pushed through to get her hearing pieces through those really rough months of treatment. The doctor told us that probably without her hearing pieces for the past four months- most likely we would not even be able to understand what she is saying anymore.
I couldn’t believe how many words, and sounds she didn’t hear.  It’s pretty easy to just get used to the level of hearing that she has with her hearing pieces and even without. She does so well at masking it and covering up for herself. She also does so well with lip reading.   (she still refuses to wear her viewing pieces anywhere but at home-she’s very self-conscious.) 

But next month they need to take ear impressions. Since she has very few sedations anymore, this will have to be done in office.  I really don’t want to have to hold her down, but I know that’s our only option. Everything is so scary and she doesn’t trust anyone.  It just feels so wrong on every level to have to just hold her down. (it’s such a wonder she even trust Jake and I at all anymore) 

Somewhere along the way, medicine becomes so clinical… so sterile… that it forgets there’s a little human attached to all of this.

And then today—another blow.

They told us they can’t reach the highest decibels with the hearing devices she needs.

Which means… there are now sounds she will never hear.
High notes.
Gone.

There’s talk of a cochlear implant in the future. Right now, we just can’t even go there in our minds.  I know that they work  great and I know that many people/children have them and thrive with them, but…we’re just not ready to go there yet. 💔

Tuesday, March 17
Today I took Avry to clinic.  I really do love being able to take her by myself now that’s she’s a bit more stable overall. I see so many parents in there together and I just remember the many months I did not feel like I could handle it on my own.  

The not so highlight of the day was passing a corpse in the  hallway with the security guards. -headed for the morgue. That felt not great.  My heart just breaks for the family left behind.  Pretty surreal.  I still remember during transplant. I took a walk one night down to the chapel and the guttural realization that downstairs there’s a morgue. When you’re fighting for your daughter’s life, it looks like a whole lot different. All
Of it. 

I think it was the quickest Clinic visit to date!!

Wednesday, March 18
Trace went on his field trip today. 
We have been having the weirdest weather!  Saturday it was up to 80° and by Monday it was down to 30 and we had a freeze! By next Sunday, it’s supposed to be up in the 90s again.  Today was chilly and windy, but we joined school at the park for lunch. It was past Avry’s nap time, but she was determined to go to the park to see her brother. We got there and it was so cold and windy so we didn’t stay and she was getting so tired. But we went!! 

Avry woke up from her nap and wanted to craft and I am fighting to keep my sanity while crafting these days. I think it’s safe to say we’ve done hundreds of  crafts this year.  So I convinced Avry to bake chocolate chip cookies instead. We definitely don’t need them in the freezer, but this is saving my sanity today.😜 she was so delighted to make tiny little ones for her herself! She rolled them all perfectly round and pushed them down on the tray. It gave me just as much joy to watch her making them! So maybe now this is my new go to. 

These days the mailbox is so full of so many wonderful things from your little people! She loves getting coloring pages and cards. 
So many of them include rainbows or flamingos much to her delight. Thank you for all the encouragement that you have sent over the past month! It reminds us that while we still can feel very isolated and alone that we really do have people that are still praying and still do really care. Thank you 🙏 

Avry and I have been loving our days with Miss Amy now that Avry is feeling so much better.  This week she brought four different colors of homemade Play-Doh, and Avry played for quite a while with it! I was actually able to make myself a breakfast and sit down for a few minutes and then go wash my hair in peace! 
We are really encouraging independence in fact, pushing for Avry’s independence. We put the barstools in the office so it forces Avry to either sit at the table or in the living room, instead of just sitting on a barstool where she depends 100% on me. This way it allows her to get on and off of her stool at the table and move much more freely.  I think the barstool has become her safe place.  This way she actually gets up and runs around and can easily help me do chores and run things to the trash  and to her bedroom. It’s so fun to watch her be up and around a lot more. I know that we’ll have to start all over again when we come back home from the hospital. Usually the first week after she’s home, she doesn’t feel well enough to be up and around. But it’s a start!

I talked to Miss Shelly, the service dog trainer this week. The plan is for honey to join Avry in June. April we will begin our training with her. 

Our goal is to have Avry moved over to what is now the office so her and honey can have that room as their bedroom. Another reason why we are really pushing for Avry’s independence. Last month I talked to. Another cancer mom. Their child is 8 and has been cancer free for a year now.
She was treated here at Dell on three E. as well. Her mom said that she still sleeps in their room… so maybe we’re pushing Avry out prematurely, but I’m ready and I know it won’t be easy on anyone but hopefully by the time we are done with inpatient care, the transition won’t be so traumatizing.  

It’s so much fun to actually have somewhat of a schedule and to watch Avry do fun little girl things again. It’s the most normal we felt in the past year. 

Trace has three friends from the neighborhood. Two of them are brothers- who he plays baseball with. Trace had a very hard time with the fact that they had  over a week off of school for spring break and he only had a day.  It was so sweet how every day after school they would be at our front door waiting for Trace. It’s warm enough that they can go to the pool after school. One of us Mom’s takes turns supervising. They really are such a sweet fun bunch of boys. I also realized I know very little about boys! It really does seem like they’re happiest if they are tousling! I absolutely adore the fact that they know there’s always food here. They’re barely be done ringing the doorbell and asking in the very most polite way what I’m baking today?! I have learned that if if I keep grape juice and seasoned pretzels on hand- (I put  the grape juice in plastic cups with lids and send them into the backyard!) they’re absolutely thrilled! I’m so grateful that Trace has some friends his own age!   Today they all sat in the living room and played Candyland with Avry! Then they went upstairs and built a big blanket fort. I’m really surprised she tolerates them.

Saturday, March 21
Jake had a big move job scheduled for today even though it’s Saturday. We have made it a special point to make Saturdays our family day where we do nothing but spend the day together. It has been such a blessing to our family to spend the day together at home. We often clean and cook together as a family. We play games and take naps and rest and go to baseball and soak up being with each other.  It’s just proven time and  again that when you honor your first five key relationships, how much richer your life becomes!  But today was an exception. He and his driver had this job planned for months and it was an All day- big haul. Trace went out along with them early Saturday morning and then I picked him up mid morning before the game. I wasn’t sure if I could handle it all
and how well Avry would do but
I just have felt the nudge lately to just push her a little harder.  It was a 45 minute drive to the job site outside of Bastrop County and the  drive was just so beautiful! I packed all his gear with me because  we didn’t have time to stop at home. I dropped Trace off for 30 minute practice pregame and then took Avry home because she was so hungry. It was a good idea to go home anyways to give her more water so I can get her full fluids into her. (I still give all her fluids through her NG tube.). She did not want to go back to baseball and I could tell she was getting really tired, but I just felt like I needed to be there! Trace  should not have to be at a baseball game by himself. I knew otherwise physically Avry should be feeling pretty good so I decided to push through. We got to the game and of course it was almost impossible to find parking. I had the lawn chair and Avry’s big backpack and put her into the collapsible wagon. The baseball jerseys are no longer color coordinated according to team… so we ended up trucking all over that field to find Trace🙈
But eventually, we found him
And we found a shady spot to sit!! I couldn’t believe how well Avry did. She colored almost the whole time!! There  was half an hour left of the game and she was getting so sleepy so I put her in the AC and she fell asleep and I could watch the game
from the drivers seat. I was so glad I had pushed through and went even tho it was very stretching for Avry, because Trace got a home run and finished out he inning from the pitchers mound!  

So many days I feel like I start things or we run here and run there but we never get to stay and finish out the game or finish out the church service or finish out much of anything!! My heart goes out to caregivers in a very different way than it ever has before. It’s very easy to become a shell of the person you used to be. It’s isolating.

March 21, 
Avry has been begging to go to the pool with Trace. I do not know how these kids are in the pool because the water is freezing yet!! Avry stepped into the pool and promptly stepped out😂 me too!! so we sat and watched Trace and blew bubbles and dreamed of the day she can jump into the water again. (the two little girls that were staring so hard at Avry they nearly fell into the pool because they weren’t watching where they were walking.  Avry was very self-conscious.  I kindly asked them to stop staring because that’s rude and we want to be kind.  Avry asked me what they are staring at? I squeezed her tightly and said honey- it’s because you’re so beautiful! She asked me if I’m sure  it wasn’t because she looks ugly?!😭 💔

March 23 Monday 
Jake has had quite a few of his own move jobs. But work has been scarce. He had a big  job going from McDade TX to Utah and then onto California. The cutest pool and tennis cottages for a woman who is building a $6 million house🥹 I had very mixed feelings about him leaving the state… and I wondered if I really could handle everything here for a whole week!  And what in the world are we gonna do for the whole week long? I don’t like to say we get bored but it can get a bit boring and lonely  around here. I was watching tickets and I randomly texted my sister and ask if she could come and she said yes!! 😅

I did not tell the children that Esther was coming and they were so surprised!! Trace had baseball practice Monday night and Avry and I are headed for the airport to pick up Esther! I told Avry we’re going to Austin to pick up the surprise and she was sure it was a new game to play!  
She smiled so big the whole way home. It was definitely worth the surprise.  One of the baseball coaches lives a few streets over and so he brought Trace home from baseball, and Trace was upstairs when we got home. 
I called Trace downstairs as soon as we got in the front door and announce that  the surprise is here. He came down the steps so fast and flew into Esther’s arms!! what a precious surprise! 

The week went by quickly! We did some serious decluttering again. Avry had accumulated a lot of the same gifts from
The hospital that have been stuffed away in corners and cupboards and closets.  I had such a hard time donating any of her clothes that she has outgrown over the past year… just in case I ever have to part with my little girl 😭💔I wanna keep all of her tiny clothes!! But it was going to be too much… so we downsized a good bit in the closet that Avry and I Share and I think half of it went to Goodwill!  What a wonderful feeling! I did save some of those precious little pieces Avry outgrew and put them in a small storage container for under my bed.  What an amazing feeling! Stuff weighs me down and I don’t like my house to look like a storage container!  There were so many books and resources that the hospital had given us the first month that I just threw into a box and decided to go through later and now it was time to go through it!  

We had so much fun spending time outside with Esther and in the sunshine and on the golf cart. Evenings Avry goes to bed pretty early and so Esther took Trace to his games, etc.. I know I could have done it if I absolutely would have to, but it wouldn’t have been without a lot of stress and tears on everyone’s part! So grateful that Esther could come! It’s probably the first time that we were packed for the hospital days before we actually had to leave. Packing for the hospital is a whole lot less than it was when we had to stay a good part of the month. But it still is something that I am a master procrastinator at. 

Esther and  I had so much fun running out to the greenhouse and replanting the front flower bed that had gotten frostbitten just a few  weeks ago.  There is absolutely no nutrients in this dirt so we amended the soil a bit and it was just so fun to beautify the flower bed! Avry added one more flower to her little flower garden outside of her window. And I planted a planter of tea-no idea if I’ll have success with it but hopefully! 

Esther and I took Avry shopping. This is something we just don’t do. For one thing we try so hard to protect her from any exposure with a weak immune system, but also it’s a lot of work!! Avry does not have a lot of stamina and it seems like by the time we get there she’s ready to go back home. But we decided to try it since there were the two of us. She’s also getting so tall and doesn’t have the strength to walk through the store, but also getting her in and out of the cart always hurts her so much! At Walmart they have these handicap carts, which are absolutely amazing!! it’s a front seat that faces you in the shopping cart-something I would’ve never even thought to look for before cancer! I think the last time we were at Walmart was probably before Christmas and I remember the same cart- 
Of course we had to go over to TJ Maxx as well. I pulled in and in front of me was this car that was barely holding itself together…

And that’s exactly when I said. ‘ a moment of silence, please.’ 

Same, car- SAME. 
Ohh I feel you, car. 🙏

I saw this car today and it was absolutely beat to crap.
Like… not a single panel untouched. One headlight working overtime, the other one said “I’m done.” One mirror, barely intact on the other went straight to heaven. 

And I just stood there like…
yeah. same.

Because there was something about it that hit me
like you didn’t choose this.
You didn’t wake up one day and say, “you know what sounds fun? total destruction.”

And yet… here you are.
Still running. 
That car wasn’t driving… it was surviving. ( I literally watched that thing drive away and I had no idea
 How)  (same, car-SAME!!!) No alignment. No smooth ride. Just grit, grace, a ton of faith and black smoke and somehow still making it down the road.

Same , car-SAME! 🙈

And after a year of fighting stage 4 high-risk cancer…
I’ve never felt more understood by an object in my life.

Held together by prayers, faith, duck tape and honestly… a little bit of delusion and a whole lot of positive psychology at this point. 

Still showing up.
Still moving forward.
Even if it sounds a little off and nobody really knows what’s going on under the hood 🥸

Jake got home by Thursday and was so tired!! He ran so hard but I was so grateful he got home in one piece safely! Esther left on Friday morning. 

Thursday night we have some local friends that have been meeting in the park pavilion for Bible study. They have invited us several times but obviously that is not something that fits into our lives right now. We take a couple loops around the park every night for our evening walk. 

We had the sweetest impromptu prayer circle in the park tonight before we go back to the hospital. 
It’s the people that pray over you;
the ones who stand in the gap with you and for you—
who have zero expectations of you…
There’s no pressure to perform,
no need for you to have it all together,
no silent scorekeeping.

Just presence.
Just covering.
Just love that doesn’t ask you to be anything other than human.

And in a world full of noise, opinions, and conditions-
that kind of love feels like oxygen.
It’s rare.
It’s sacred.
And we’re so grateful for the people that allow themselves to be used by God. This is answered prayer😭🙏🌈💝 For over a year, we have pleaded with God  for believers to show up—to pray over our family and carry us to the mercy seat side by side,  in person. 
And wow… God answered that prayer, just not in the way we expected.
They didn’t know the details, and yet the Holy Spirit spoke so clearly through their prayers.
It was one of the most faith-boosting, encouraging moments we’ve had through this cancer journey.  Once again proves that God uses those who are willing. 

I don’t know what this means for our future but what I do know is that it feels so good to be loved and cared for. To be seen and acknowledged In the hard and be encouraged. We also know how much it hurts to be passed by ‘the priest and the Levite.’ And are thanking God for the Good
Samaritans  who dare to stop, notice, have compassion, and chose to lift. 

I simply share our lived experience here.
“If you feel the burn… it might be your turn.”
And what I mean by that is this-
If something in you rises up… defensiveness, tension, resistance… I want to gently invite you to pause and look inward. Not with shame—but with honesty.

To check your life.
To get real with yourself.
To realign.
To rise higher.
To do better.

Because pain… as brutal and unfair as it is… has a way of exposing what’s hidden. It illuminates. It refines. It strips away what no longer serves us.
And if pain doesn’t change us… if it doesn’t call us higher… then it’s wasted.
And I’m just not willing to let that happen.
Not with Avry’s pain.
Not with our story.
This will not be in vain.

The truth may hurt and it may cost something. The question is - am I willing to embrace it or do I run from it and ignore and avoid it and settle for lukewarm mediocrity to avoid the discomfort of growth and looking at my life honestly?

Friday was another full day of Appointments. I was glad that Jake was home for them. Amy came and got the vehicles washed and cleaned out.  It’s the one thing that I still delegate. I’m so grateful she comes and takes care of that for us.

Saturday, March 29
This morning there is an Easter egg hunt in the park. Something that Avry has been dreaming of! So we golf carted over to the park to the  4-7 yrs section. Trace has a baseball game this morning, but I asked him to come along with us. He really couldn’t care too much about this kind of thing, but was happy to oblige his little sister. And her Smiles oh my goodness her Smiles!!! they still have me smiling!! 

Most of what was in the eggs ended up in the trash because…yeah. But the fun was gathering the eggs, putting them in her basket and then opening the eggs!! 

‘Mama that was the best Easter egg hunt ever’ as she snuggled up close just before she fell asleep. 
There is nothing so heart stopping as watching your baby’s dreams come true- watching  your child’s joy come back to life after watching it be stolen piece by piece.
After watching your baby fight for her life…
day after day, month after month, this entire year of her pushing through things no child should ever have to face—
fighting to breathe, to live, to stay…
her joy exudes life itself. And her laughter is the sweetest music that trickles thro the air and touches the tenderest part of my soul -the part that’s been cracked wide open this year💔
And for a moment, it feels like everything just might be OK again😭🙏

-Our Story For God’s glory