^{Support Registry Update}

Day +7 post transplant

In support of
#miraclesforAvryJo

October 6, Monday

This morning, Avry woke up with a fever of 104.8 . We started a higher dose of steroids in hopes of lowering the inflammation and kicking that fever. We still have not identified the source of the fever, however there is a good chance it is from the white blood cells starting to come in. We hope so!!

Dr Miah’s demeanor was hushed and somber. The next 3 to 4 days are crucial days. Dr. Mian likened the next few days to the whiplash after an accident. Today being the first day after the accident with severity trending upwards (in a negative way) until they plateau.

We’ve seen a trending rise in her liver function. This indicates VOD. VOD is a serious, potentially life-threatening complication of hematopoietic stem cell transplantation (HSCT), characterized by liver damage and signs of fluid retention like hepatomegaly (enlarged liver). Her belly is very swollen due to the enlarged liver. This compromises her lungs as it is pressing down on them which is why she purrs or moans when she’s sleeping. The swollen liver means the cells are bigger than they should be which are pressing the blood vessels making them too small to function properly. The lining of the liver was destroyed during the high dose chemo. That means the rate at which bile moves thro the liver is decreased to the point of causing harmful toxicity in the body.

The medicine that will help to open up her blood vessels has adverse side effects. One of them is bleeding. Dr Mian said he is very very cautious. He is double and triple checking all the numbers and her labs. This is when we cannot afford to miss . He prefaced us for what he expects to see this week. This is his expertise- (BMT) bone marrow transplant for neuroblastoma. He’s chief of Pediatric Hematology/Oncology and the Department of Pediatrics. He’s excellent at what he does and there is no question his 25+ years of experience Carries weight

Janessa came in and brought Avry her beads of courage. She strung her three favorite beads and then handed it to me. She didn’t say much at all to Janessa. She just laid there and listened to Janessa talk. I know she found comfort in Janessa being here.

They upped her morphine PCA . She’s also getting a higher dose of steroids because of her high fever again today. She’s very tired. I can’t even begin to imagine how hard her body is fighting and what she must feel like. The mucositis is a little bit worse- I didn’t know it could get worse. She’s sleeping today. Late afternoon she woke up and sat up, but was pretty dazed. She just sat there and then she asked me to snuggle with her and watch her favorite show- Samantha. It’s a story based off of the early 1900s about a little girl who was an orphan and went to live with her grandma. She became best friends with the Neighbor girls who were servants. Samantha ends up getting adopted by her uncle but has no playmates. The little Neighbor girls also become orphans and then eventually get adopted by Samantha’s uncle and aunt. It’s a story that brings so much comfort to Avry. She loves to watch the little girls play together in their Victorian dresses, and learn to read. She loves Samantha’s Locket and how she keeps pictures of her parents close to her heart. Avry loves how on Christmas Day Samantha gets the best gift in the world- three little sisters to love and play with and become family forever! This story was my favorite story as a little girl and I think it’s safe to say that Avry loves it as much as I do! This time, though she didn’t even last but 10 minutes and she fell asleep on my arm! The movie is almost 2 hours long and sometimes we watch it twice in a row!

Avry has a lot of mouth pain. She doesn’t want to open her mouth or talk and smiling is really hard.

Tonight the blood cultures came back positive. So now we know why the steroids are no longer kicking the fever. We’re dealing with something else. We don’t know what that is yet.

We appreciate every single message and every single prayer

More than you could ever imagine! Thank you.

Rosanna Schapansky
8 months ago

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Comments

Rachelle Stein 8 months ago

Sending positive vibes to you all. May God bless you and your family

Sharon Huber 8 months ago

We are praying and praying! Please God! Heal this beautiful precious child! Make her an overcome! I can do all things thru Christ who strengthens me! Philippians 4:13.

Kathleen Decker 8 months ago

Praying so hard for you out here in California. Sending lots of love and hugs.💕

Colleen Reyes 8 months ago

Avry has an army of prayer warriors who will never stop. She is so strong because her Mommy and Daddy have been so strong. I am truly in awe of your spirit and faith. Praying that the night brings rest and the sunrise sees her turning the corner and fever gone. 🙏🏻🙏🏻🙏🏻🌅

Jill Zundell 8 months ago

Many, many prayers!

Loretta Thomas 8 months ago

God above & all our beautiful angels please help Avry! Give us the knowledge to do everything possible to find a cure! Give her strength to continue to fight off this horrible disease! She has fought so hard & want her back to her gorgeous self! It’s in your hands and we will pray for the Doctors to get her better! Show us every miracle for this gorgeous tough little Avry! 🙏🏻🙏🏻in GODS name we pray! AMEN ALLELUIA AMEN

Peggy Donaldson 8 months ago

Praying for Avry in Michigan. It’s so very heartbreaking what our cancer kids have to go through. Hugs and prayers to all of you…she is so lucky to have such a loving family taking care of her! 💗

Debra Martin 8 months ago

Sending our love and prayers, cuz we care. 😢💞💞💞🙏🙏🙏

Ruth Zehr 8 months ago

Praying praying for God to give His holy Angels charge over sweet Avry also that his annointed healing blood would flow through her body healing every part in Jesus name amen

Amber Swarey 8 months ago

Praying for strength, healing, peace, and deep rest.

Cindy Swartzentruber 8 months ago

I know God can work miracles, and I'm praying for a miracle for Avry 🙏🙏 she seems like such a fighter, Lord give Avry the strength to continue fighting 🙏 Lord give mama and daddy peace and courage and Trace a clear mind to do school and help him also to feel very loved through this time ❤️❤️

Nancy Pedersen 8 months ago

My heart hurts for All of you. Avry is such a Warrior. Keep strong in your Faith. We are all praying for strength and healing.

Abigail Good 8 months ago

Lord Jesus be near, please be tangibly near!! Praying for His healing touch on Avry's body.

Rachel Harris 8 months ago

I’m so incredibly sorry to hear what you all are going through the past couple days! Please know we care and will pray,pray,pray and pray some more. You are one strong momma fighting side by side with your strong daughter!

Kerri Klassen 8 months ago

Praying that God would minister grace + peace + wisdom for each moment… And that God’s healing hand would touch Avry…❤️🙏🫂 Avry’s story helps me to enjoy the small, simple things in life, and you all give me more courage to face what looks overwhelming…🙂

norma willey 8 months ago

Praying for peace and healing!

Nadine High 8 months ago

Thanks for the update!! I know it takes time and energy to write but it helps us prayer warriors know how to pray and what to specifically pray for!!! I'm praying for you and Avry!!! This makes my own momma heart ache. God is with you!!!

Elsie Weaver 8 months ago

An army of angels is on assignment in your room! Just know that we care deeply! You are loved. You are carried. Hugs to you and yours!

Twila Beachy 8 months ago

Sending love and prayers! 💕🙏

Sharon Nissley 8 months ago

Praying for you all ! May God hold you close n give courage and strength n healing ❤️‍🩹 today !

Marsha Farrar 8 months ago

Praying for a miracle for your precious Avry!!!! She is such a warrior, with her strong faithful mom right by her side. Praying God will lay his hands on Avry and heal her.

Sherri Dirks 8 months ago

Praying… 🙏🏼 There isn’t a chance of this story not touching my soul! I pray that each of you are lifted on the wings of the prayers of the people. May you feel the support and love all around you holding you up. God knows your pain.

Claytonnolt 8 months ago

Praying so much for little Avry!!! May God give you strength for every moment!!!

Jillianrmb 8 months ago

Praying praying...

Julianne Miller 8 months ago

Lord Jesus hear the unheard cries of Avry! She is miserable and needs your comfort and healing. Help the doctors find what is causing her high fever. She is a little girl, but a fierce warrior. Amen

Rhoda Burkholdee 8 months ago

May God be ever so near to you ! We are so blessed by your faith and Courage! We pray for God's healing touch for Avery and Courage and strength, all you need in these hard days ! May you continue to feel God's everlasting arms holding you.

Cheryl Kones 8 months ago

I’m doing the best any of us can do and that is praying constantly for your precious child! Thank you for keeping us updated so we’ll know how to pray!

Emily Anderson 8 months ago

Continued prayers and love being sent your way. I am thinking about all of you so much and praying for strength and healing 💞

Jill Cline 8 months ago

Sending love ❤️ and prayers for sweet Avry and all of you too! My adult daughter just went through major surgery and I know how I felt and to think you’re doing that with a sweet little one. My heart goes out to you. As a mom you want to take all of the pain and the hurt! Praying Jesus touches her and gives you strength and daddy and Jake too! 🙏🏻

Monica Lambright 8 months ago

Praying!

Serena Amoth 8 months ago

Praying! We care!

Gail Barbour 8 months ago

Always holding you all in the Light - Gis is good

Quilter 8 months ago

A 2016 study published in Biochemical and Biophysical Research Communications found that ivermectin, an antiparasitic drug approved for human use, shows promise against glioblastoma, an aggressive brain cancer known for treatment resistance. The drug kills glioblastoma cells and inhibits blood vessel development. In laboratory and mouse studies, ivermectin triggers cancer cell death and significantly reduces tumor growth. https://www.theepochtimes.com/health/cancer-patients-recover-by-taking-repurposed-anti-parasitic-drugs-5813009

Janetrusso55 8 months ago

Precious family. This battle has been long and arduous. When goinging through the darkness- the long night of the soul, I pray that you can feel the presence of our Heavenly Father. I pray that Jehovah Rapha will touch Avry’s tender body with His healing power and love, that all adverse conditions reverse and her body begin the full healing and be restored to perfect health. I pray strenghth and courage for you, Jake and Trace as you stand faithful in this time. May the God of all comfort hold you in the palm of His hand and give you peace that passes all understanding. In the Holy and precious name of Jesus I pray. Amen.

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