She Shines On

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I loved watching her make the clowns laugh today. They come to entertain her and brighten her day and she in-turn brightens theirs. There she goes letting her light shine again. This girl has packed more living into her four years than I have into my 37. How does she do that? She makes everyone smile, this one.

The past week has been a roller coaster. We have been through the wringer emotionally as we watched her heart rate dip while she endlessly slept and anticipated her departure. And then as we witnessed that heart rate come up and settle out we saw her filled with life again and hope was renewed that we might get to take her home. She is still in the hospital, but making improvement. The goal is to wean her from her IV hydration and Potassium and get her back to taking her fluids through her ng tube again. The problem is, that she has diarrhea that won’t abate and kidneys that are damaged and dump large amounts of Potassium from her body.

So, we’re working on those things these next few days and hoping for one more chance to have our girl at home with us. She is weak and hasn’t left the bed but to use the restroom, but her spirit is strong and her funny bone is in full effect. The rest of us are doing well, if not a little tired. Family has stayed nearby and we have encamped around her. Children’s Medical Center Dallas is Phoebe’s 2nd home and there are plenty of people who love her there to pop in and make her day. It’s a joy to see how she has touched the hearts of so many involved in her care. Her nurses and doctors are top notch and we couldn’t ask for a better team of people to care for her.

We are hopeful and prayerful for a safe return home for Phoebelicious and to come back under her hospice team in East Texas who have been equally wonderful to us. Thank you for your prayers and support.

With gratitude, Amey

Phoebe plays peek-a-boo:

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About Amey Fair

I am Amey Fair, wife to Nathan, and home-educating Mom to Benjamin (9), Averic (7), Deacon (4) and Phoebe (2) . Phoebe was diagnosed with a rare childhood malignant brain cancer called Atypical Teratoid Rabdoid Tumor on January 1, 2012. She had complete resection surgery to remove the tumor on January 4th and began chemotherapy using the Dana Farber protocol on January 26th. A few weeks ago I was sleeping in the chair next to Phoebe's bed in the hospital when I heard her little voice drawing me out of sleep. It was 3 am and it took me a minute to shake off the slumber. "Mommy I'm a mean girl" I thought she said. "No Phoebe, you're a nice girl!" I replied. "No Mommy, I'm a MIRACLE!" Phoebe said. "I'm a MIRACLE, I'm a MIRACLE, I'm a MIRACLE!" she continued on. My tears welled up and spilled over as she made her declaration. Phoebe doesn't know the word "miracle" nor the concept, she's only 2. It was as if the Lord was speaking through her like a prophetic utterance. She fell right back to sleep and I sat there awake, lingering in the magical moment. Less than 40 children are diagnosed with Phoebe's type of cancer in the U.S. each year. This is why it's called "ATYPICAL Teratoid Rabdoid Tumor". So, I have titled this blog in honor of Phoebe, our "Atypical Miracle". We are YWAM'ers, serving in missions through Youth With A Mission since 1998. Before returning to the states 1 year ago, we lived near Guadalajara Mexico for 3 years. It was during our year of agricultural missions training in Waco, TX that Phoebe began exhibiting symptoms from the pressure of the tumor on her brain. Weight loss, lethargy, extreme thirst and vomiting were her symptoms. We have been granted sabbatical during this time to focus on Phoebe's intensive chemotherapy treatment and are renting a home in Dallas near the Children's hospital where Phoebe is being treated. Like the woman who touched the hem of Jesus' robe in Luke chapter 8, we cling to Him, knowing that He is Phoebe's healer. If we can just touch Him, be near Him, bring Phoebe to Him each day, we have hope. He is our hope. Thank you for coming along on this journey with our family. It's therapeutic for me to write it all out, and in so doing, I hope God will use it for His glory.

23 responses »

  1. Thank you Amey for the update. We continue to pray for Phoebe. What a shining light she is to so many!! Praying she gets to go back home soon.

  2. Praying for Phoebe to return home, and prayers for all of you! She is such a beautiful little girl it is so great to see her playing peek-a-boo! You all have made such a huge impact on my faith!

  3. God’s love shines through Phoebe’s light and through your whole family’s faith and witness! Steadfast prayers for continued improvement so she returns home soon.

  4. I know you all have met so many people but you might remember me. You came to my management office during your visit to Breckenridge and I got a most wonderful hug from Pheobe And then my husky pup proceeded to knock her over! I’ve been following your updates ever since. I am in tears after every post as I am a mother of 3 girls and my heart just breaks for all of you. I want you to know that my girls and I are begging our Lord to grant a miracle for Phoebe. We are not giving up in Breckenridge!!

  5. I check your blog every morning when I wake up and every night before I go to bed. Pheobe has touched my heart and my life. So have you, Amey. To watch the way you handle this situation so beautifully, and fully trusting The Lord is really humbling to see. Though we don’t know you, your names have become familiar in our home, and my husband and I pray for you all daily. Thank you for teaching me such valuable lessons through your writing, thank you for reminding me to be all here with my kids, and thank you for sharing your story. Much love to you!

  6. Thank you Lord for good times with Phoebe & we ask for many more. God bless her, her family & the hospital staff. Help her to get better to enjoy time at home Father. We thank you & praise you for Phoebe Fair.

  7. What a precious gift from God! He has definitely used her (and all of your family) in a mighty way. We continue to pray for Phoebe – may she have many more days of feeling well & playing peek-a-boo!

  8. Thinking and praying for you little Phoebe! Kisses, healing hugs, and Psalms all over you, Lil Girl! Praying the spirit of the Lord in your room, all over everyone that enounters your fighting and joyful spirit! May the redeeming love of Christ continue to shine in and through you!

  9. As Phoebe has touched those involved with her care, so you Amey and Nathan touch the family of God by sharing your days. You and Phoebe spur us on…. to relish the moments, to be honest in pain, to see Jesus in suffering, and to Cling to Him. Praying for you daily.

  10. Your precious Phoebe has touched the hearts of many, such as myself, across the country that you do not know. As you have so openly shared your heart, you have brought tears to my eyes and smiles to my face along with praise to our God. Phoebe and her family continue to be in my prayers.

  11. Phoebe is so precious and has taught me a lot too. Blessing to each one of you during these days. Hope Phoebe can go home soon. Praying for you all every day.

  12. I hop on here daily, (even if for a moment in a hectic day) to see how this little light called Phoebe Fair is doing. I was encouraged the last couple days as the hand of God is interceding on behalf of your baby girl and giving you a little more time to enjoy that light that shines so brightly through her. I have to be so careful myself to not walk by what I see and not by faith. It’s easy to be excited when things LOOK good and discouraged when they don’t, but we have to remember that God makes all things beautiful in His time (not ours) He is doing a great thing in and through little miss Phoebe and He reminds me, that I trust in the problem solver, not the problem! I continue to pray for your family and little Miss Phoebe and you continue on this journey.

  13. What a glorious God we serve…and how extraordinary it has been for ALL of us who are following Phoebelicious’s progress to see how faith works. Amey and Nathan, God has used you mightily to teach untold numbers of us what is possible if we’ll only believe. And as a result, I/we are whole-heartedly buoying you and your family, the medical staff and all your helpers with our prayers and watching first-hand that God’s Word does not return void to Him if we’ll speak it out in faith. His Word says He is Faithful and Love Never Fails.

  14. OH PRECIOUS PHOEBE YOU ARE SO SWEET PLAYING PEEK A BOO GLAD THE CLOWNS CAME TO VISIT WITH YOU. YOU ARE SUCH A WONDERFUL FAMILY AND I PRAY FOR PHOEBE TO HEAL BE ABLE TO RETURN HOME WITH ALL OF YOU. I PRAY FOR ALL OF YOU MAY OUR GOOD LORD WRAP HIS LOVING ARMS AROUND ALL OF YOU CONTINUE TO PRAY AND KEEP YOU ALL IN MY HEART GOD BLESS ❤

  15. Hi Amey. I’ve been following your blog for a while now.
    I’m wondering if you’d like to share your story on my blog? It can be bits and pieces, it can be whatever you want it to be. I have a project called: this is motherhood {too} and it’s a place where mothers of miracles, and mothers than have gone through challenging experiences can share. If you want to check it out, it’s here:
    http://michaelaevanow.com/this-is-motherhood-too-2/

    Praying for mercy for your angel. I know the feeling.
    much love,
    Michaela and her miracle, Florence.

  16. Thank you so much for sharing your sweet Phoebe. Tell her she is loved by so many of us who have never gotten to meet her in person. We are blessed to share the love of Jesus and are praying for her and all of you. Life is hard and heaven is a wonderful place. Praising our God and rejoicing, regardless of our circumstances. And we all have our own difficult circumstances on this earth… Gratefully His, Debby

    Sent from my iPhone

  17. I have just came across Phoebe’s story…I have been crying going through all these pictures and posts. What a precious little face!! I have went through this with my Mother twice also and in January..God called her home. God could not have given Phoebe more loving parents..God Bless you both and her brothers…I will pray for Phoebe for comfort and peace as well as you and your family. Thank you for sharing her story and letting so many people be blessed with hearing her story and seeing her precious face and fight. God Bless..

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