Going home post transplant-day 37
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We woke up early this morning. We couldn’t sleep. We’re going home today!
Last evening I messaged our support group and told them our plans. Crys replied ‘No words…😭🙌🙏’
I exclaim emoji-ed. Because ‼️‼️
With this milestone, I’ve been trying to process. We are completing 8 months of treatments. How is it 8 months??? But then again-it is fall and the last I remember, it’s chilly March and we’re so excited about spring but it’s still bare and dreary…
This marks a big milestone; completing transplant number 2. I remember 8 months ago looking at this as WAY out there in the far distant future. Here we are and we survived!! My brain refuses to compute. How we got here. Cancer. Chemo. Immunotherapy. Transplants. The minute we’re not in high stress; fight or flight; my brain struggles so hard to make sense out of any of this. How we got here; and where we’re going. Ah it hurts my brain. Yet, Fight or flight is such a mercy!
When you’re in fight-or-flight, your brain isn’t trying to help you think — it’s trying to help you survive.
At the center of that response is a small, almond-shaped part of your brain called the amygdala. It’s like your brain’s smoke detector — always scanning for danger. When it senses a threat (real or perceived), it hits the alarm button and floods your body with stress hormones like adrenaline and cortisol.
Your heart rate increases, breathing speeds up, muscles tense — your body is getting ready to either fight the threat or run from it. But here’s the catch: when the amygdala takes over, it hijacks your prefrontal cortex — the logical, reasoning part of your brain. That means your ability to think clearly, make rational decisions, or communicate calmly goes offline.
That’s why, in moments of high stress, you might say or do things that don’t feel like “you.” It’s not weakness — it’s biology. Your nervous system is in survival mode.
I told Dr Paul last week-I don’t know that we will ever fully come out of fight or flight until we’re years in remission. Because there’s always the next round, the next test and then the monthly testing and every month scans, to yearly testing. He agreed - it’s a horrible umbrella to live under.
So the goal is while we are at home,is to not suppress the nervous systems response. But to offer the brain to recognize safety again. When we intentionally breathe slowly, ground ourselves (get outside as much as possible) , we’re telling our amygdala, “I’m safe now.” That’s what allows your prefrontal cortex to come back online — and for your thinking, clarity, and peace to return. Essentially- self care. Rest. Eating well by nourishing our bodies to not only give back and replenish but also prepare for the next fight. Another key is not forcing anything. What mean by this- let what happens, happen. We’re on such a tight ‘schedule’ in the hospital with running here and there and forcing this and that without taking much time to breathe or allow any natural flow. Essentially- saying no to what stretches us and yes to what breathes life and inspiration. It’s so, so important for all of us so we can lower the stress as much as possible. This isn’t always easy- because when we get home, it would be fun to dream about doing all the ‘normal’ things. Avrys body will need time over the next 2-3 weeks. She’s still healing and is very very weak and fragile. It’s letting go of all and any expectations- that’s the way to have the most peaceful and calm. (That’s not easy for Trace as he is ready to play with his sister and eat family meals at the table and go to church together) it all takes time!!
As much as I can’t wait to go home- I also don’t want to go home. Home is not home. It is SO. Hard. As we all adjust. Jake and I observe as the children struggle already- knowing another change is coming. Even if it’s an exciting one and a positive one!! It’s still change and one that takes so much patience and courage. It’s taken about 2 months to adjust to having a live in- Maid. Trace has been doing so well and school has been going much better. And now we mix it all up again! And need to reset again!
Now that we’re finally at a good place. And this has been the story over the past 8 months. It’s not easy.
Going home also means- it’s all on me. The night time feedings and broviac care. Avry isn’t walking. I am determined to get her mobile again without PT but sigh—. I don’t have nurses to back me up or look over my shoulder and make sure I’m not missing something. I love caring for Avry! It’s an honor. And It’s heavy. And exhausting. No one signs up to be a Mom-cologist.
I’m so grateful that Meg has stepped up and has the past two months of experience. She will handle the school routine and take care of the house so I can truly focus on Avrys care. And sleep when she sleeps!
My number 1 priority today is Avrys happiness! I just pray and plead for her to feel well enough to enjoy the hospital’s celebration for us! And that she wouldn’t be too tired or exhausted. That everything would work out and go smoothly!!!
Please 🙏 with me!!
The rest will figure out - I just need to get through the morning excitement 🙏
Her feeds are going so well!! The Mucositis is still present. She still suctions her mouth every few minutes. (We’re not taking suction home with us😳) Monday we went down to 2 pumps and she has been reminding me ever since that ‘now we can go home!’ She has been so incredibly grumpy. She sits up in bed- the littlest yet fiercest storm cloud ‘mom!! I’m just mad!’ She has no weakness in articulating her feelings.
This is coming off all her meds so quickly. It will take some time to ‘chill out’ but I’m praying that it’s nothing a lot of golf cart rides and singing can’t cure! Being together as a family every night will also help!
Night shift was thrilled with celebratory -going home cupcakes. Today will be the real party. I have a baker in Bastrop that outdoes herself! I send her a Picture of what I want them to look like and the kind and she delivers!! The Oncology unit now knows anytime there’s a reason to celebrate- they can ask for cupcakes and I will make sure they’re here! Avry licked the icing and started screaming. Post high dose chemo and Mucositis took away the lining of her mouth and digestive tract. Only 3 weeks ago her mouth and digestive tract was bleeding and pieces were breaking and coming out. She can’t taste and what she does taste- is awful so this will also take time. Most of all- I pray she doesn’t get discouraged and give up trying to taste! (That happened after last transplant)
Please pray for us as we adjust to living at home again. For grace and patience and forebearance. Pray for me as I adjust to a new med schedule! Pray that we can all sleep and recover from
Being gone for over a month. Pray that the adjustments would go smoothly! And that Avry would rest and not be scared going from a tiny room to a big house with lots of noises and commotion. Pray that she would be able to start eating again soon and that as she gets stronger- she would be able to walk again soon! Pray for Jake as he balances work and clinic schedules. Pray for Meg as she fills her very important roll of all the in betweens.
We left the hospital around noon today!!!! It felt so surreal walking through those doors with her and without many tubes and lines connected to her! She didn’t want a wheelchair- she wanted me to carry her! It was delightful to hold her close. The nurses and drs lined the hall just outside our door and sent us off with a bubble parade and pompoms! Avry wasn’t sure she wanted to do that today but then smiled and waved at everyone at the end of the hall!
There were a lot of loose ends to tie up. Niki was our nurse today and she is also the BMT instructor. She is most excellent in everything she does. We went over the med list several times and the schedule. Palliative care came by and went over the morphine wean with me. The team came by and sent us off with hugs and encouragement. Dr Cohn got the mugs for the Transplant Drs that I’d designed and loved them! NP Jason and Christina also came by -it’s a big day for Dell to be sending their 1st completed transplant patient home! The energy is high with excitement! Janessa came by with all the last day completed crafts and beads of courage. I gave her the banner I created for the nurses break room and told her where the cupcakes were to set out for them. Kendall came by and reviewed her feeding schedule.
We walked through those doors with so much relief, excitement and apprehension. None of this felt real! A week ago we were waiting on tests results and 2 weeks ago her condition was worsening at an alarming pace.
Avry was so happy to be in her car seat and was sleepy. She couldn’t stop smiling and fell asleep on the way home. We were almost home and she peeped open and I whispered ‘we’re home.’ She shook her head yes in the most contented way!
We came in and Meg had the house so clean and cozy. It smelled like home. We just walked around and looked at our home soaking in the miracle! She begged to go on a golf cart ride and so we did! We came home and I tucked her into bed. All of a sudden- Jake and I were bone weary. I crawled into bed with Avry and Jake and I were in mid sentence when he layed over the edge of the bed and next thing I knew- he was sleeping!
I knew Avry would be so disappointed that she didn’t go along to get Trace at school, but I couldn’t wake her up. I also knew that it would be too much for today. He came home- right to our room! Our family was completed ♥️
Meg had a wonderful home cooked supper and we sat at the table, as a family, unrushed! Even Avry was strong enough for me to hold her and sit there with us the entire time! We almost convinced her to taste the cream cheese icing off of the pumpkin cake. She kept eyeing it and asking what it tastes like.
We spent the evening in the living room. The office holds many packages for the children to open and they couldn’t wait! We all sat on the couch and had family worship. This might sound braggy or insignificant to you. But to us- it’s everything! You cannot have balanced relationships as a family if you don’t honor your Creator in a collective way. Your relationships will always be off balance and wonky. This has always been a grounding experience for our family; a reset in a way. It’s the thing that no matter what else is going on in our world- brings us together. It makes gratitude the focal point; no matter what, even if and creates a different perspective. When we were finished, Avry didn’t forget to ask everyone ‘what was your favorite part of the day?’ She hasn’t asked this in a very, very long time. It’s heart stopping to see these little original pieces coming back to life! (I’m not saying it needs to be a long drawn out process or a full on church service- we have had to get very creative and be flexible in our family worship but I want to offer your this perspective— if your family is struggling, this might just be what’s missing.) Make it a time that your children look forward to and don’t want to miss . Involve their little spirits and watch the ripple affect go beyond the doors of your home because the most important work starts inside the home!
Wednesday October 29
The night was long and we must have been up a few times every hour. Neither of us realized how much the suction was doing for Avry! Jake has been looking at purchasing one for at home. I keep saying that it’s gonna get better and that we don’t need one…copious amounts of mucos and she can’t swallow it or it makes her vomit. This tells us her digestive tract has more healing to do! After such a night, I woke up this morning, wondering where the nurses are?! Her medicine is around the clock as are her feedings. It’s intense. I had her morning routine completed by 10:30! That’s a win!!!
As soon as Trace was awake, he came downstairs to Avry’s bed and crawled in beside her. He didn’t care too much about breakfast or going to school. She cried when he left for school. That bond wasn’t just created over cancer. It’s been our intention to create a long lasting lifetime relationship between them. Because when children understand the importance of their relationship with their siblings and how to offer kindness and grace to the people who see you at your best and your worst
- imagine the ability to build solid relationships later on in their lives! It’s so, so. Important to me.
It’s easy to think when relating to family that they’re stuck with me so I can be whoever, however, I want to be. Wrong. ❌
Why not make it the best we absolutely can?
A family unit and the way you relate to each other is heaven’s training ground for love.
It’s where grace is practiced, forgiveness is learned, patience is tested, and compassion is refined. It’s the first and most sacred place where heaven’s values—mercy, humility, unity, and unconditional love—are meant to take root and grow.
It would easy to let it all go during cancer because we’re so tired. We’re so exhausted. There’s not enough time and we’re too busy saving a life while so many of our circumstances are completely out of control. But right now during cancer.-
it’s the prime time- this is the sacred work! It’s probably one of the hardest things to do is to dig so deep when it would be so much easier to lay in the corner in a fetal position with a blanket over our head and feel sorry for ourselves and wish to die.
It is freezing cold this morning! The wind is howling. We turned the heat on. I feel like this is February temperatures! It’s in the low 60s. Avry wanted to go on a golf cart ride and so I bundled her up warm! But the wind was too much. Her lungs are still very fragile and so we went back inside.
She’s sleepy. And I want her to take as many healing naps as possible! I’m determined to sleep when she does—although today I just can’t sleep, not that I’m not very tired!
Avry wanted to go pick up Trace and waited for the last two hours— asking every couple of minutes. I also forgot how much energy and time it takes to get out the door with her feeding equipment. And all the other things that need to go anywhere we go…Meg helped me get out the door otherwise we would have been late. Moms- I know that juggle is real with nap time and pick up and the after school kitchen mess with papers and lunchboxes and supper prep and everything in between all over the countertops…. I want you to know what an absolute luxury it is!!! Driving home from school pickup with the children is one of my favorite ‘normal tasks!’ One I will never take for granted again. Avry and I look forward to this every afternoon! (once I get all of the things loaded up to go 🤗)
Jake is working local jobs this week and is home for breakfast and supper every day! What another luxury!
Avry is in pain. We’re also weaning her off steroids and morphine. We go back to the clinic on Friday. Please pray we can get the med balance right! I have never been afraid of her Broviac catheter. I’ve had a reverential fear— until this last hospital stay when we have had blood clots to deal with. Ugh. Niki explain to me later it was an issue on the nurses parts and she went on to further educate me on other signs to watch for when caring for her tubies.
October 30
This morning we went out on the golf cart again. It’s much less windy…there’s nothing that grabs my heart and minces it in tiny little pieces more than driving and hearing her singing
‘Lord, I need You now more than ever
Would You put my heart back together?
Oh-oh, Your way's better
Oh-oh, Your way's better
Oh, Lord, Your way's better
Jesus, Your way's better.’
We drive past the water fountain and the sun was hitting it just right making the most beautiful rainbow! ‘Mom!! There’s a rainbow just for us!’
Most of the time I just drive and let the tears fall. Just a few weeks ago I wondered if we’d ever take her home. I wondered if she’s ever sing again and smile with that twinkle?! And here we are….
And she sings
‘All my life I’ve been carried by grace
Don’t ask me how cause I can’t explain
It’s nothing short of a miracle I’m here
I’ve got some blessings that I don’t deserve
I’ve got some scars but that’s how you learn
It’s nothing short of a miracle I’m here
Don’t ask me how cause I can’t explain
It’s nothing short of a miracle I’m here
I’ve got some blessings that I don’t deserve
I’ve got some scars but that’s how you learn
It’s nothing short of a miracle I’m here
PRE CHORUS 1
I think it over and it doesn’t add up
I know it comes from above
I think it over and it doesn’t add up
I know it comes from above
CHORUS
I’ve got miracles on miracles
A million little miracles
Miracles on miracles
Count your miracles
1-2-3-4 I can’t even count ’em all
I’ve got miracles on miracles
A million little miracles
Miracles on miracles
Count your miracles
1-2-3-4 I can’t even count ’em all
VERSE 2
You held me steady so I wouldn’t give up
You opened doors that nobody could shut
I hope I never get over what You’ve done
I wanna live with an open heart
I wanna live like I know who You are
I hope I never get over what You’ve done’
You held me steady so I wouldn’t give up
You opened doors that nobody could shut
I hope I never get over what You’ve done
I wanna live with an open heart
I wanna live like I know who You are
I hope I never get over what You’ve done’
October 31
Avry is walking!! (Not a lot but a little.) She has a lot less mucos too. Today was clinic day. We went in and I came back home.
I feel like I can’t drag my body around another inch. I slept most of the day and I’m not sure if I feel better or worse.
Avry did so well at the clinic with Jake! Dr Cohn reported that Avry is doing much better than they expected. Her numbers are all really good and she’s holding her own. She didn’t need a transfusion or any blood products. She is getting the IVIG twice a week since the steroids destroy her immunity even more, they’re making sure they give her everything they can! We’re continuing to wean off morphine and steroids. It’s an intense 24 hour med schedule. I noticed her looking pale the last 2 days and Dr Cohn said it’s a combination of the liver issues we had and the fact her skin is all peeling again and she has hyperpigmentation. She’s getting all new nails and top layers are peeling off. It’s very annoying to Avry but all has to do with post transplant. Dr Cohn predicted that in a week she will crash once she is completely weaned off the morphine and the steroids. Hopefully she will also be able to sleep a whole lot better too.
She has been afraid to eat because of not being able to swallow. Dr Cohn said it’s a combination of learning how to swallow again and being able to. She let me look in her mouth and it’s still it very patchy yet- as in their are pieces still missing and need to be ‘filled in with healing time.’ Yesterday she was begging for chocolate banana bread. I can’t tell her no- because just what if it’s the thing that she finally eats- We had some bananas here that were very far from ripe so I baked them till they were solid black. It was Google’s idea 😉 it kind of worked, but I would not recommend it! She bit into it, but then she ended spitting it out because she couldn’t swallow it. I really thought the mucositis would be a lot better by now-but it just goes to show the extent of what it was.
She is very tired of crafts and painting and being inside. She would live outside! It’s been so unseasonably cold and windy and she chills quickly. I have no idea what we’re going to do this winter because we live on that golf cart! She often cries because she is so bored of being inside and just wants to play outside. This child has been inside a lot this year!
We have another 2 weeks with the transplant team, then we will be transferred back to our main oncology teams care. The insurance still has not approved radiation. Dr Cohn said there’s a chance we will have to proceed with round six chemo/ immunotherapy so there is not a lapse in treatment until radiation is confirmed. I have no idea when that would be, but I’m guessing we would start end of Nov beginning of December if it happens that way. (I can’t look ahead 🤮)
This really is a huge milestone!It marks the halfway point with treatments. It’s really hard to imagine. In some ways I feel like maybe we can come up for air just a bit. But we also can’t look ahead to the next seven months.
Coming home and off of that high state of ‘fight or flight’ is not fun. Cancer and surgeries—and watching the balance sway and tip between life and death—it’s unimaginable. You think you’ll never have it stare you in the face. And then it does.
I used to look at cancer and surgeries upon surgeries as scary, horrible, and terrible—something I refused to even let myself go there with before Avrys cancer. But now, I have moments where I catch myself thinking, well, I guess it’s really not that bad, because we’re doing it. Every single day. There are a lot of things that could be worse, I guess, because here we are—we’re still standing, and we’re really not doing too bad. I shared these feelings with my husband, and he didn’t agree in any way. He immediately started pointing out all the horrors of the experience. And he’s not wrong. I’m just trying to express to you the mental whiplash and psychological chaos of this whole thing.
When you finally come down off that adrenaline high—after holding your breath for so long, never having time to process, just doing the next thing and the next and the next—coming down from that roller coaster is miserable. If I had no other responsibilities, I’d spend a year just lying in bed with my mouth hanging open, staring blankly into the abyss.
My husband, on the other hand, would be a hermit—sitting on a stump whittling wood with a pocket knife, shooting bullets into an old fridge in the wheat field at whatever wild vermin
ran across his target—primed for the fire.
It may sound exotic, stretched beyond your wildest imagination—but I told you when I started this platform for Avry that it would be raw and honest. And ‘The carousel never stops turning’—and thank God for that.
It might be a day in bed, it might be hot tears in the shower, or staying up all night wrestling with God—
But we always come back stronger. We get up, we dust it off, and we do it all over again the next day—because we get to.
Some days I feel ungrateful when I watch the children open up packages. Sometimes it’s because I don’t know who you are, or because I grab my phone to send a message and then I’m pulled 3 other different ways and I completely forget to thank you. I try hard to not allow the fact I don’t get everyone thanked personally put me into a spiral. Because your deserve an acknowledgment!
Thank you to each person who has sent gifts for each of us, personal checks, gift cards. Paper ware, and bought off the registry. Thank you for the many messages and for you prayers and constant support! Please know we couldn’t do this without our village here. You are important to us!
A Prayer of Gratitude and Praise
Thank You, God, for parting the sea and making a dry path before us!
We are so deeply grateful for reaching this incredible milestone — the completion of the transplant stage.
Thank You for a good outcome and for protecting our little girl through every step of this journey.
Thank You for her life, for her strength, and for another beautiful chance at a future with her.
Thank You for healing her organs, for touching every part of her body with Your divine power, and for surrounding her with Your presence.
Thank You for every doctor, every nurse, every tech — each one who has played a role in Avry’s recovery.
Grant them wisdom as we go onward , refresh their spirits, and bless them abundantly for the care, compassion, and excellence they’ve given.
Thank You for this hospital — this place of healing — and for every person who has poured kindness into our family.
And thank You, Lord, for the massive outpouring of love and support from around the world — from people whose hearts have been touched by Avry’s story.
Through every valley, You have carried us.
Through every storm, You have made a way.
And now, standing on this dry ground, we lift our hands in gratitude and say —
Thank You, God. All glory to You
Comments
Martha Neuenschwander
Praying that yall can catch up on rest🙏🏼❤️
Veronica Ward
Rachel Diem