Saturday Update

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Sixteen years ago today in a little apartment in Bedford, TX, I surrendered my life to Jesus. Looking back, I see a beautiful tapestry of God’s faithfulness, a life set right, a heart changed, a girl given a future and a hope.

Even today, as we sit at Phoebe’s bedside and watch her heart rate dip, I find it difficult to feel anything but gratitude. We have been so blessed with this girl, and oddly enough, by how cancer has changed us. Phoebe has set the tone with her joy despite circumstance, and who am I to rain on her parade?

So we watch her sleep, we smell her, memorize her, soak her up. We tell stories, laugh, remember, and then we cry.

She wakes up for 20 or 30 minutes at a time to blow bubbles, boss her brothers around or paint fingernails and then she goes to sleep again. We might get to take her home again, we might not. We know that now. The goal is to watch, and wait and see. This stomach virus has taken a lot out of her and there is the question of whether or not her body can rally back from it.

On July 26th we received the news that Phoebe’s cancer had returned. She was given 2 to 8 weeks to live. We recently passed the 8 week mark and we realize that each moment is an extra blessing.

We are not accepting visitors at this time, but thank you for continuing to stand with us, and thank you for the outpouring of love and support you all so graciously give. We love reading the comments on Phoebe’s site and seeing how many people are praying for our daughter.

~ Amey

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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.

48 responses »

  1. I have come to love your mother and your grandfather but the relationship in your family I have come to love the most is you and your boys and especially your daughter I love praying for a family that I’ve never met but I feel as though I know intimately thank you very much God bless you all

  2. Dear Amey and family. My heart was won by this angel I never met and is broken now by this “should-not-be,” this evil thing which takes her from us. I believe in loss. Jesus died because He believed loss was real. It IS real, and it hurts like hell. I am so sad for you, I have no high-toned phrases with which to burden you. May God comfort you, somehow. He wept.

  3. We don’t follow you, we stand beside you. We support you, but truly, are more strengthened by you. Humbled by the Fair family’s faith, I’m changed for ever by a chance encounter on the Internet. Along with my prayers, my hopes for ease for all of you, you have my gratitude.

  4. Our church is praying, individually and collectively, daily and weekly…we love your family! Our hearts hurt for you as we thank God for your strength through His power.

  5. We are full of awe regarding you Christian Faith and love and your amazing God given attitude in the midst of this totally life altering future loss of your lovely daughter.
    Oh how He loves us. Praying

  6. What a blessed anniversary for you, Amey! Thank you for sharing your faith, your witness, your miraculous daughter Phoebe with all of us. “Extinction to thy microbe, extinction to thy swelling, peace be to thy breast, the peace of the King of power…In the holy presence of the Father, in the holy presence of the Son, in the holy presence of the Spirit, the holy presence of compassion.” (A traditional Irish blessing for healing)

  7. Jeremiah 1:5 “Before I formed you in the womb I knew you, before you were born I set you apart”. Psalm 139:13-16 : “For YOU created my inmost being; You knit me together in my mother’s womb. I praise You because I am fearfully and wonderfully made; Your works are wonderful, I know that full well. My frame was not hidden from You when I was made in the secret place. When I was woven together in the depths of the earth, Your eyes saw my unformed body. All the days ordained for me were written in Your book before one of them came to be”. Wow! That’s how God knows Phoebe! Somehow I feel better knowing that God has known and loved Phoebe even longer than you and Nathan. He has a plan for her – for every moment of her life here with us and for her much longer life at home with Him. Phoebe’s life has glorified the Lord by touching so many of us here on earth. I will always be thankful for her and for you. Numbers 6:24 “May the Lord bless you and keep you: May the Lord make His face shine upon you, and be gracious unto you: May the Lord lift up his countenance upon you and give you peace.”

  8. God is amazing. You guys are amazing. Phoebe is amazing. I’m encouraged by you guys and the blog posts. I’m doing Romans 12:15 with you.
    He knows. One day you’ll know too. Grace, Peace, and Mercy upon you.
    -Mark Hagan

    (Friend of Tommy & Ashley Lee)

  9. Currently thinking – how amazing the Lord is to save our souls and turn you into women who looks so much like Jesus.
    Love how much hair Phoebe has and that she can still put her big brothers in there places 🙂
    Praying for continuing peace, strength and hope for each of your hearts.
    Loving the Fair family from thousands of miles away.

  10. Beautiful Amey and family,
    I’m sure you get many messages from people who do not know you at all, but are moved by your lives, your hearts, your journey. This is another one of those. I am Leah, a former YWAM er and a missionary with husband and two tiny daughters in the Philippines. Since I heard about you about one month ago I pray daily for you, your family, your hearts, for healing, for beautiful Phoebe. I weep with you, I ask for our God to reveal more and more and more of His heart to you, for His grace to cover you like a thick blanket, and for you to hear His heartbeat and taste his love. You are my sister.. Our family is on our knees for yours, loving you. Bless you.

  11. It is written…
    Monica Crain (previous post) reminded us…
    I agree…
    and we know He is in our midst.
    I trust He is making His presence known to all of you…

  12. You are so blessed and such a blessing to all of us who are sharing your journey. As one who knows, every moment is a treasure as life is short and unfair. Learning to live breath-to-breath is refreshing… Our hope is in our Lord and Savior and, as Phoebe shares, he’s not a meanie! As one who is grateful that our God is near the brokenhearted, I truly know your pain and heartbreak. God’s blessings are great and He promises to bring us through. Hallelujah and all praise to Him! Sorrowful, but rejoicing, Debby

    Sent from my iPhone

  13. The Fair Family is in my thoughts on a daily basis now. Thank you for sharing Phoebe’s story as well as the story of your own faith. She is such an angel with her sweet disposition despite her suffering. And she’s an angel who wants to keep her nails looking good even though she’s not well. She looks so sweet in this pic….I imagined her yelling at her brothers when I read that part of the post. I’m praying for a miracle!

  14. Praying for Phoebe and all of you! Praise God for His faithfulness and the hope we have even in the face of the unthinkable. Thank you for allowing the strength of God to shine through you in your weakest moments. What a blessing. Our family will continue to pray.

  15. Hi Amey, Nathan & the kids,

    You all are a blessing for us as we share your love, pain, sorrow and mostly the strength. I don’t have a daughter and reading about Phoebe posts makes me think as if Phoebe is my daughter. Daughters are God’s gifts sent to us. Amey, I am with you every step of the way. I am not Christian and don’t know the quotes from ‘The Bible’, but thank you so much your miraculous daughter Phoebe with all of us.
    When I turn my computer on in the morning, 1st I check for “Phoebe updates”. She is almighty’s miracle. I love seeing her pictures with her brothers, Dad, grandma, grandpa and above all you. I can see joy and love in everyone’s eyes, but can see pain in the corner of your eyes.

    Just hang in there and enjoy each moment with her, giver her lots of love for her journey. We hate to see our Phoebe suffer…..

    By the way, she looks so cute in her fuzzy hair. Amey, you have to take care of her and the family. Please be strong….but it’s ok to break down once in a while. I think, I am going on a tangent…so long for now…..
    Love…..Alka

  16. Beautiful little angel and beautiful family. Ya’ll have been in my prayers for a good while now. My heart is so heavy for you and your family right no and yet you continue to rejoice in the ups and downs of this journey. Please know that your faith has strengthened my faith so much during this time. Your suffering is not in vain. You have ministered to so many people and Phoebe is such a light in this world of so much darkness. I thank you for sharing this light with us who you may not know and yet have become family with as brothers and sisters and Christ.

    Sent from my iPad

  17. Myh prayers for Phoebe continue. I pray as she grows tired and the angels come for her, that her life continues in a book of life. She is an Angel and needs to spread the word of God arter all is done on earth. Her mommy and friends can fibish her story of love and glory. She has touched a lot of lives and it needs to remembered. Prayers for comfort and grace. Love to all

  18. Amey and Nathan,
    This week Father pressed on me 2 Corinthians 1:8-11
    8 We do not want you to be uninformed, brothers and sisters,a about the troubles we experienced in the province of Asia. We were under great pressure, far beyond our ability to endure, so that we despaired of life itself. 9 Indeed, we felt we had received the sentence of death. But this happened that we might not rely on ourselves but on God, who raises the dead. 10 He has delivered us from such a deadly peril, and he will deliver us again. On him we have set our hope that he will continue to deliver us, 11 as you help us by your prayers. Then many will give thanks on our behalf for the gracious favor granted us in answer to the prayers of many.
    These verses speak so deeply to me about the trials in life we endure. As I pray for your family I just cannot help but think about just how much Father loves you. He is right there with you, carrying you all through this. Indeed you are blessed.

    Praying and praying,

  19. Thank you Phoebe and your family for showing faith thru this hard time. I think about you morning,noon, and night…. and pray to God more than i ever have. I pray for Phoebe, for your parents, for your brothers. I pray for healing, but most of all peace. Thank you Phoebe for bringing my heart back to what is important, and remembering what really matters.

  20. Standing with you- in awe!

    Sent from my iPhone Cheri Perry 1-888-249-9919 You can get everything in life you want if you just help enough other people get what they want. ~Zig Ziglar 1927-2012 Rest in Peace dear friend!

  21. Amey, to you and your family, and sweet joyful in Jesus Phoebe, my prayers are unending for you as is my soul felt love for each of you as each of you face this in a different way because of different relationships—but the most important in common is love for Phoebe and love and trust in Jesus–what an amazing and powerful witness for our Lord. SHE IS IN THE HANDS OF JESUS and so are all of you. Love and blessings, marilyn in TN

  22. I have been in awe of the amazing, loving and Christian family you all are. Phoebe is a true blessing but I hope you know what a true blessing you are to her too. God chose you as her family for a reason. You are in my continued thoughts and prayers. She is such a precious little girl. May He wrap his arms around all of you during this time so you will feel His comfort and peace. God bless you all.

  23. Continuing to pray. God has and is using you in amazing ways. May He provide peace that passes understanding through these difficult days.

  24. Beautiful testimony of choosing to live in God’s grace! We are still praying for Phoebe and for her brothers. Linda and Alexandra

  25. Blessings on your beautiful family. Phoebe’s story has touched more lives than you’ll ever realize. Thank you for sharing your amazing faith, hope, and love.

  26. Amey and Nathan,

    Yes we are praying for Phoebe but we are praying for both of you as you lead this little troupe who love and depend on you. You have been such a blessing to us these many long months of battle as we pray and cry and hope with you. We look forward to your entries and share them with family and friends. I cannot imagine how many are praying for you. Thank you for sharing your lives with us as we continue to stand behind you. Love the pictures. Wish we could step into them for a hug now and then.

  27. Sweet Holy Spirit, reign. Bring peace and life. Bring joy. Bring wholeness. Jesus, there is no other name. Thank You for the hope of life.

  28. Bless all your sweet little hearts! How precious the time is that you have with Phoebe. I know God looks at your faces & His heart burst with pride. Amey, you & Nathan are such an example to us & to your boys, as we watch how beautifully you handle this destroyer by the name of cancer. How brave you both are & how lucky Phoebe is to have you both. I will always be praying for you & I still know God will heal Phoebe. Love & blessings, Elaine

  29. Praying that the gentle strength that can only be shed upon you by the Holy Spirit himself will envelop your every breath, thought, word, and moment. HE is the purest of comfort.

  30. Dearest Phoebe and Family, I am sorry I have not posted much because I have prayed for you all for a long time. I should have encouraged you more. How precious that Phoebe gets to go Home with her beautiful hair! You are so beautiful!
    When she moves from here to There, what a day of rejoicing and sorrow. If you don’t mind, I have asked my Lesley, who it There, to find her and hug her for me. I have learned so much from sweet Phoebe. Thank you, dear love. Jesus loves you forever and forever.
    Janell

  31. Pingback: Just tears | Zoe means life

  32. Amey, I learned of Phoebe from a friend of mine whose daughter, Zoe has had ATRT dx for two years….It shook me up, being the 3rd friend with a child with brain cancer…I began fretting about my own precious daughter, Sarah who was four at the time. I’ve also fretted about what would happen to her if I died prematurely…Then, our women’s Bible study did the Beth Moore study, “Esther” & the phrase that keeps coming to me is “If ____, then God”….don’t put what if’s in my vocabulary & let it steal my joy & present. I have to say, reading your blog has made me cry on numerous occasions & pray profusely–and I will continue to…but just wanted you to know that I’ve thought that if my daughter ever died I can’t imagine life without her–I’m disabled, had her at 39 & she’s my only, I homeschool & mother 24/7 most days & I’d be tempted to end it all. You, my dear Sister, are an inspiration & show me what comfort a Jesus follower can have when we look up & not inward or around…May God bless you & your family richly this week, wrapping you tightly in Him and each other.

  33. Dear Amey and family,

    I only recently started reading about Phoebe’s journey (through IG links), and I’m sending my support and well-wishes of peace for your entire family. Each family member experiences the effects and grief of cancer so differently from one another, and I pray that you all draw closer than ever in these times. I lost my daughter Emily to cancer (stage 4 neuroblastoma) just 10 years ago, and sometimes the memories of it all are as fresh as ever. Reading about Phoebe’s experiences remind me so much of what Emily went through, of what we all went through. So many things I haven’t thought of in so long: the occurence of c-diff, drop in ANC levels, fever spiking sending us to the ER in the middle of the night, not being able to leave the hospital if she couldn’t keep anything down, throwing up almost every single day for two years, etc. Cancer is a beast, but my daughter handled it like a champ, and it looks like yours has been, as well. It’s an exhausting battle for everyone, and you all are handling this storm beautifully. There were few points in my daughter’s journey that stand out as being most deflating for me: the moment of her diagnosis/prognosis, the day we realized that she was no longer in remission, the day we enrolled in “at home” hospice care and signed DNR orders, and of course the day she left this world. Such bitterness and beauty all mixed up in each other. Reading your most recent posts remind me of our times during Emily’s final days. I spent that time reading to her, stroking her hair, feeling her skin, and just soaking her in. When Emily went into remission, she told me that she didnt want to die but if she had to, then she would be my guardian angel. She was so wise and strong for a 10 year old. I will never forget and was deeply humbled by the outpouring of spirit and prayer for my daughter, and it is more than touching to see the same for your daughter and your family. God bless you all.

  34. Praying for Phoebe this morning! My heart breaks for you guys. His grace is sufficient! Thank you for being an inspiration of love and faith!

    Mike

  35. Amey,
    Our homeschool mom’s group in Breckenridge, CO has lifted Phoebe and all of your family up in prayer. Jesus is with you! His loving mercy and faithfulness shines through you and Phoebe. Your family is truly a walking example of serving Christ through and through. I am so inspired by your grace and willingness to share your story to glorify The Lord. Please know you are not alone in your journey. You have thousands of people praying for your family daily. Your family has made so many people turn to God in prayer! May God give you and your entire family peace today. I pray Phoebe has a comfortable, peaceful, and happy day. What a precious girl she is!! What an incredible mother you are!!!! God smiles on you and your family!

    Much love in Christ’s Name,
    Suzie

  36. What you are going through by faith is so deep and hard, yet, you see clearly what the world is blinded too. You appreciate every day with Phoebeliscious and your family, you are heavenly minded, weary, yet abiding, sad, yet confident that eternity awaits with joy and peace and love forever, because of a kind (“not a meanie”) Savior who loves us and gave His life to redeem us. Praying every day for all of you.

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