^{Support Registry Update}

The word you never want to hear post transplant… rejection.

In support of
Oakley Werley’s Miracle Heart

This hit us like a ton of bricks tonight… one of those moment again in our journey where it just completely takes your breath away. 💔

I couldn’t wait for the doctors to walk out of the room so I could just silently break down and cry. I never want Oakley to see or hear me cry because I want to be strong for her but it’s impossible to be strong all the time. There’s nothing I want more than a beautiful and healthy life for Oakley… the emotions and thoughts just started flooding my mind. She’s been through so so much. She just wants to go home and be a normal kid…

The doctors did give us some peace of mind and told us 2R cellular rejection is quite common in the first year of transplant. The key is getting it treated as soon as possible and that the steroid treatment is successful. In two weeks Oakley will have follow up biopsy which will tell us if treatment worked.

Transplant is not a fix or a cure. It’s the most precious gift and a second chance at life however, it comes with a whole new set of challenges & obstacles. It’s one day at a time.

Please Lord, let these steroids fully treat any and all rejection in her body. Allow her new heart to be accepted as her own. We pray for this follow up biopsy in two weeks to show zero signs of rejection. Lord we trust You and we know you love Oakley more than we could ever imagine. Give us strength and joy even in the hurting. Protect Oakley and keep her strong 🙏🏽

I kept asking Oakley how she felt today, took her temps, blood pressure, asked her to eat/drink etc. (doesn’t help I am a nurse too so I absolutely drive her crazy!) and Oakley said, “Mom, stop worrying”. 😭 This is my reminder to give it to God. I am not in control. He is. My job is to love Oakley and teach her about Gods love. During our prayer tonight she said, “Did you know that in heaven there is infinite happiness?” Again, I held back the tears and saved them for after she fell asleep but wow. Oakley is a true gift from God.

She got an MRI tonight of her brain to further look into these frequent headaches she’s been having and neuro will discuss results with us tomorrow. Please please pray for these steroids to do exactly what they’re intended to do which is to stop the body from rejecting her new heart. Please pray for her headaches and her overall strength and joy. My biggest prayer is a long and beautiful life 🙏🏽❤️ God, we know you’re the ultimate healer and you’re the one who performs miracles everyday. Let there be more miracles 🙏🏽 All in your sons name, Amen.

Kennidi Werley
over 1 year ago

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Comments

Kathie Fenwick over 1 year ago

Lifting so many prayers. Oakley is such a testimony with her sweet words, her courage and her smile. God has this sweet girl in the palm of His hand and she is a light of His Love! 🩷🙏🩷🙏🩷🙏🩷🙏🩷🙏🩷🙏🩷🙏

Sackss over 1 year ago

Praying!

Ginger Tucker over 1 year ago

Praying for Oakley, and you. My women’s ministry at church is also praying. God is good! Oakley is an inspiration to us all!

Jennifer Haller over 1 year ago

Continued prayers for Oakley to recover and for her sweet body to stop rejecting her new heart and for answers to her headaches. God is so good and he knows best and works miracles and I pray for that for Oakley and her family.

Stacey Ashabranner over 1 year ago

Praying and Believing for this little sweetie !

Ruth Berman over 1 year ago

Thinking and praying for your family

Kristina Rodriguez over 1 year ago

Oh sweet Oakley!! I know she had to be so excited to go home but God is still in control! Praying as I’m going to bed today! In Gods Holy name the steroids will work and she will received yet another miracle! God is good and He is not done yet!! 🤍🤍🤍🤍

Tawny Blum over 1 year ago

Oh gosh rejection is sooo common in the beginning but it sucks for sure. I’m so sorry. If Oakley has been having headaches only since transplant it could be from the tacrolimus. I call them Tac headaches and if her levels are high she may get a headache. It’s not something people remember but they are very real and they suck. Hopefully this helps. Hugs.

Suzie Mendoza over 1 year ago

Sending prayers that the steroids do the job and reverse any signs of rejection. Prayers showing a normal MRI. Sweet Oakley deserves to live the life that you (and all of us) have been praying for. Sending hugs and so much love, ❤️🙏🏻❤️🙏🏻❤️🙏🏻❤️🙏🏻❤️🙏🏻❤️🙏🏻

Another survivor over 1 year ago

Ik this isn’t the best example but I’ve had 2 heart transplants bc of rejection- but just know that even though I don’t know Oakley, I love her soooo much and I’ll be praying for your whole family and that this miracle heart will be accepted 🩷

Another survivor over 1 year ago

Suzanne Rahinsky over 1 year ago

Praying for Oakley 💗💗💗💗

Denise DuRoss over 1 year ago

Dear God please watch over Miss Oakley and allow the steroids to help her new little heart be strong and her body accept it as her own. Give strength to her family and let them feel our prayers🙏🏼 In Your most holy name we 🙏🏼

Kimberley Milliman over 1 year ago

I pray everyday for your family, I have my work friends and facebooks friends praying. I believe in the power of prayer and I believe with everything that your family will get to go to your home and be able to enjoy some sort of normalcy. God bless you all🙏🙏🙏

Bethany Girardi over 1 year ago

Oh mumma, I’m not only praying for the steroids to work and Oakleys heart to fully be accepted in her body, and that the Nero scans come back clear. But I also pray for you, your husband and son, I pray peace over your whole family and I pray for protection for all your minds and hearts as your journey the next two weeks. I pray that peace surrounds you and you tangibly feel Gods never ending love with you every step. Those are word no mum wants to hear. But Oakley is strong, you are strong and our God is stronger than it all. He’s got you! Rest in him, praying for you! 🩷🩷🩷

Liz Skidmore over 1 year ago

Standing with you in prayer each day!

Melinda Aumann over 1 year ago

Lord, we agree with Kennidi's prayer!

Npoynter23 over 1 year ago

Oh Father, please continue the beautiful work you have done with Oakley. We thank you for your mercies

Lily Chow over 1 year ago

Everyday is a gift from God. Keep trusting and praying for His mercy and healing 🙌🏻Thank God for the successful transplant and May God grant Oakley a long and beautiful life🙌🏻 I had my ♥️ transplant in 2004, rejections with grade 3 and 2 and 1 still on steroids and immunosuppressive medication. Every morning is new mercy. Live for Him 🙌🏻💝

Val Guerrero over 1 year ago

Positive vibes and prayers for Oakley. And Oakley is so lucky to have such a great mama bear. I hope nothing but good things for her and your family. ❤️❤️

Annemarie Wiater over 1 year ago

Praying for your beautiful little girl.

Leigh McMahan over 1 year ago

Praying for sweet Oakley ❤️🙏❤️

ANA Acosta over 1 year ago

Know you have an army of prayer warriors flooding the gates of Heaven with prayers for Oakley and for you too 🙏🙏🙏 God has brought Oakley thus far and He will see her through her complete healing 🙏🫶🙏

Heidi Bol over 1 year ago

Praying for God to continue to strengthen you on the journey! May you feel His presence carrying you in the waiting! Praying for Oakley’s headaches to dissipate and for the steroids to help her miracle heart acclimate.❤️

Teresa Schmidt over 1 year ago

Prayers for the steroid treatment to be successful and for Oakley’s headaches to decrease. She is such an inspirational child that is wise beyond her years and seems to know how to bring comfort to her momma and those around her. We were at MD Anderson yesterday for my husband’s checkup and upon seeing the Texas Children’s Hospital, I was praying that Oakley was up there doing well. Continued prayers for you all! We know God has Oakley in his hands and she will be healed.

Marcia Boerman over 1 year ago

Your trust in Jesus is a beautiful testimony to all of us. Yes we leave it all in our Father's plans - trusting the steroid will b the helpful plan. Many 🙏 for the Werley family - Oakley is a trooper🙆❤️

Tricia Kubasko over 1 year ago

You & Oakley are such an inspiration. ✝️♥️ And your thoughts & prayers are so well articulated. I will continue to pray. May God's love & grace envelope you. ✝️♥️

Glenda Lopez over 1 year ago

Prayers for a clear biopsy and results that steroids worked.

Linda Hilker over 1 year ago

Our family is praying Oakley for you and your family! What a beautiful girl you are and a wonderful testimony. Even my 92-year-old dad is praying for you. 🙏💗

Linda Hilker over 1 year ago

Our family is praying Oakley for you and your family! What a beautiful girl you are and a wonderful testimony. Even my 92-year-old dad is praying for you. 🙏💗

Carolyn LePage over 1 year ago

You are so strong! I can’t imagine the highs and lows of this journey. Please Lord, grant them the grace to embrace the challenges and peace that you are guiding them to health and happiness!

Rachel Kelley over 1 year ago

Praying for healing and a miracle!! I know the Lord will do it!!

Kimberly Nguyen over 1 year ago

Continued Prayers for Oakley. God is Great and will take care of Oakley

Shannon Salstein over 1 year ago

Praying for Oakley and all of you! Praying for continued miracles and unlimited strength! Also praying Oakley continues to shine her beautiful light into this world and keeps reminding us all things are possible through God and faith and love! Thank you for sharing this beautiful example every day. Sending big hugs and love to Oakley and all of you from one mama to another. Xoxoxo

Christine Piggott over 1 year ago

Oh no that's not what we wanted to hear! She seemed to be doing so well too. Hopefully the drug treatment will work and all will be well. Will continue to hope and pray for the best outcome for sweet Oakley. Does this mean you won't be discharged now? Stay strong momma! You guys have been through so much I'm sure she will get through this too. Sending love and hugs. XX

Geraldene Wasylowich over 1 year ago

Prayers for the whole family. Sending love to Oakley 🙏❤️

Cheryl TerHaar over 1 year ago

Sending hugs and prayers for these steroid drugs to help Oakley .🙏🏻❤️ Hoping for her to go home soon.

Kim Malarae over 1 year ago

Prayers for Oakley and her family. God please heal her body and let her new heart be perfect 🙏❤️Amen

Coco Klamt over 1 year ago

Here with you all ever second of every day🩷🩷🩷. God speed😇

Lori Maatman over 1 year ago

Infinite happiness is what we pray for ALL of you!!! Praying for All of you!!!

Lynn Kamp over 1 year ago

My prayers continue for Oakley and the whole family.

Andrea Frost over 1 year ago

❤️🩷 praying for your beautiful daughter and the long wonderful life she has ahead of her.

kelly Hanlon over 1 year ago

Praying from Boston for Oakley s healing and prayers to her family for added strength

Kim K over 1 year ago

Wishing all the best for your family. I will hold you in my thoughts and heart. Sending so much positivity and love to sweet Oakley.

Grace.crocker over 1 year ago

A Prayer for Healing and Strength- Heavenly Father, We lift up this precious little girl to You, knowing that You are the giver of life and the healer of all wounds. You have blessed her with a new heart, and we pray now for Your gentle, loving hands to hold her close as she faces these complications. Lord, bring comfort where there is pain, peace where there is fear, and strength where there is weakness. Guide her doctors and nurses with wisdom, that every decision made is in her best interest. Let her body grow stronger each day, and let her heart beat with the joy and love You have placed within her. Surround her with Your angels, Lord, and wrap her family in Your endless grace. Remind them that they do not walk this journey alone, for You are with them, holding their hands and wiping their tears. We trust in Your perfect plan and ask for complete healing in Your time. Let this little girl’s life be a shining testimony of Your love and power. In Jesus’ name, we pray, Amen.

Catherine Telgenhof over 1 year ago

Prayers for all of you! God is good!

Geri Keller over 1 year ago

Hi There so how long will Oak being in the hospital for. Saying prayers for you both

JOLEEN VERBONITZ over 1 year ago

Continues prayers for Oakley and your family.🙏🩷 God Bless!

Jolanta Rynsburger over 1 year ago

I’ve have heard about this journey you are on with your darling daughter. My husband was a teacher in Zeeland, who you might remember, but just know that we are praying for Oakley and that her heart grows stronger every day. Btw, your are an amazing mom 💞🙏💞

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