Steward

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I can’t believe we’re really at this place in Phoebe’s chemo treatment. Just this afternoon her oncologist stopped by and we were remembering together what things were like for Phoebe this time last year. She was six days post-invasive brain surgery, was just beginning to get past her tremors and would soon be intubated for a serious seizure. Chemo would begin at the end of January, and by February Phoebe would be in septic shock in ICU fighting for her life.

I am so glad to be here, in this hospital room tonight with my girl as she finishes up this round of chemo. We are in the same room she was assigned to the very first time she came to the oncology floor. This is the room where I pulled out gobs and gobs of beautiful blonde curls that were coming loose. The curls I still save in a Ziploc bag in my dresser drawer. And tonight she is here by my side, head as smooth and shiny as an apple; she has battled her way through sepsis, she has been through intense respiratory therapy when her left lung was collapsing, she has had to re-learn how to swallow how to hold her head up, how to use her fine motor skills and how to walk. She has lived through adrenal crisis, mucositis and hallucinations from her bouts of high sodium.

And she has lead the way with her joy. She has lived in the moment when I could only fear the future. She has brought a smile to others when I have been so inwardly sad that I hardly noticed people around me. Her contageous laugh has attracted a gaggle of nurses to her room to “see what all the fun was about” time and again. She has said “thank you” every time someone drew blood or accessed her port. And she asks everyone she meets “did you miss me?” even if they have never met. She radiates joy, this girl. It’s something other-worldy I can’t explain. But each night when she makes her rounds on the hem/onc floor just before she goes to bed, I see it. In the faces of all who have come to love her here, I see her joy reflected.

When we named Phoebe, I just loved the name. I didn’t know it meant “Brightness”. We chose her middle name “Lucille” after a dear friend who was also a nanny for us when we traveled in missions. I didn’t know Lucille meant “illuminated light”. But my daughter is..a bright, illuminated light. She really is. It is the perfect description for Phoebe Lucille. And I get to be the steward of this bright, illuminated light. What a blessing.

I can’t believe we’re here, so close to the end of treatment. It seemed forever away, and now it is in sight. I know the end of treatment will carry with it it’s own worries and concerns. But for tonight, I will just live right here, in this room that has seen so much, and recount this year with gratitude.

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.

28 responses »

  1. What an awesome post and I’m so glad that you’ve shared this journey with all of us and so happy that the end of treatment is almost here! It’s been a very long emotional year! I’d love to see a video of Phoebe again. Every picture I see of her brightens my day. God bless you, Fair family. You’re in my prayers every single day 🙂

  2. So well written and shared! So happy for Phoebe to be doing so much better. What a fighter! What a great God we all serve! May you all continue to know God’s strength, blessing, peace, and grace.

    Mary Garborg Prior Lake, MN

    Sent from my iPhone

  3. What a family! What a girl! What an indescribably amazing God!!
    My son & I have cried, prayed & quietly walked through this past year with you. Your honesty in writing has ushered me into a whole new realm with my Saviour. My 9 year old is changed for the better, praying for you all. We love you, Fair family! Christ’s mightiest of blessings upon you all.

  4. WOW!!! Ok, Amey….what an awesome post about an illuminating precious Phoebe and her family. From where we sit, as your prayer warriors, we have cried, loved, worried, laughed, spread the message of Phoebelicious, giggled, smiled, ate french fries in Phoebe’s honor and of course prayed as never before day and night, knowing that God would see ALL of you thru as HE willed!
    As we were reading your post,tonight, our minds went to those times and remembered where we were, and how we found out, who we talked to , how we shared….and can not believe that it has been a year since your journey started.
    Thank you, Phoebe, for being a beacon of light, hope and faith! You have brought the Love of Christ to more people than you can ever imagine!
    Thank you, Amey, for sharing this very personal journey with all of us!
    Love, Hugs, and BLESSINGS!
    Peggy

  5. Dear Amey, your words come at a time of deep, weary sadness for me, and I am suddenly borne on the clouds, cradled firmly in the arms of God. And all below me, I see a world of sadness and fear, disease and death, but under the absolute loving sovereignty of The Father. Without making any logical argument, it makes sense.
    You and your precious daughter are messengers, stewards of your life experience, which is like spun gold woven with the finest pearls. Yours is the finest, most encouraging story I have heard in years. I will never meet you until the other side, where I will have the privilege of introducing you and your family to my little Maggie Grace. She will have heard of Phoebe, and be so thrilled to meet her.

  6. looking back and seeing how the Lord has been faithful in answering the prayers of so many causes me to praise His holy name. Remembrances brings hope and strengthens our faith. Phoebe’s response to her journey in life is a bright light to many. Thank you for sharing this journey….

  7. I am so glad that sweet little bright light of yours is so close to the end of this portion of her journey. What a precious little girl she is. And how fortune that she is so very blessed to be able to call you Momma! I enjoy reading your posts. Your love of God and family come shining through in every sentenence that you write. Praying for your family!

  8. Ah Amey, what a privilege it has been sharing this journey with you and your family. The strength of your faith has also reinforced mine. Hard to believe it has been a whole year. When your Dad sent out the call for a dedicated team of prayer warriors, I wondered if I would be capable of stepping far enough away from my own junk. I did, and will continue to pray through this with you all for as long as it takes. I continue to “share” on FB as well, so that those I am connected to can also include you all in their prayers. That’s how this is working, and God hears every one.
    I would also like to say to Ian Rogers, who left a post today………Ian, I will pray for the healing of your heart in the missing of your precious little Maggie Grace.
    Blessings to all and may our Lord Jesus keep you close.

  9. All those of us who have had the honor of praying for this little “Illuminated light” named Phoebe Lucille, have wept with you, worried with you thru each moment of the darkest hours when she was so ill;, emphasized when one by one you fell victim to “bugs” going around; rejoiced with you when she conquered yet another battle, her little body so frail but strong; waited anxiously with you for her levels to be what they should be and felt relief with you when her white count began to rise; laughed with you when you heard her singing- loudly- in some very early mornings; were in awe with you when she said “I’m an angel”; were excited with you when she began to walk with her pint sized walker and when she walked on her own out of the hospital; were humbled by your strong faith in God, which never waivered as your precious baby girl fought for her life; were thankful with you as you have leaned on Him and praised His name throughout this journey you never thought you would take; but above all, we prayed with you and for you – so many thousands of

  10. An Atypical Miracle
    Phoebe Fights AT/RT Cancer
    Menu

    Steward
    I can’t believe we’re really at this place in Phoebe’s chemo treatment. Just this afternoon her oncologist stopped by and we were remembering together what things were like for Phoebe this time last year. She was six days post-invasive brain surgery, was just beginning to get past her tremors and would soon be intubated for a serious seizure. Chemo would begin at the end of January, and by February Phoebe would be in septic shock in ICU fighting for her life.

    I am so glad to be here, in this hospital room tonight with my girl as she finishes up this round of chemo. We are in the same room she was assigned to the very first time she came to the oncology floor. This is the room where I pulled out gobs and gobs of beautiful blonde curls that were coming loose. The curls I still save in a Ziploc bag in my dresser drawer. And tonight she is here by my side, head as smooth and shiny as an apple; she has battled her way through sepsis, she has been through intense respiratory therapy when her left lung was collapsing, she has had to re-learn how to swallow how to hold her head up, how to use her fine motor skills and how to walk. She has lived through adrenal crisis, mucositis and hallucinations from her bouts of high sodium.

    And she has lead the way with her joy. She has lived in the moment when I could only fear the future. She has brought a smile to others when I have been so inwardly sad that I hardly noticed people around me. Her contageous laugh has attracted a gaggle of nurses to her room to “see what all the fun was about” time and again. She has said “thank you” every time someone drew blood or accessed her port. And she asks everyone she meets “did you miss me?” even if they have never met. She radiates joy, this girl. It’s something other-worldy I can’t explain. But each night when she makes her rounds on the hem/onc floor just before she goes to bed, I see it. In the faces of all who have come to love her here, I see her joy reflected.

    When we named Phoebe, I just loved the name. I didn’t know it meant “Brightness”. We chose her middle name “Lucille” after a dear friend who was also a nanny for us when we traveled in missions. I didn’t know Lucille meant “illuminated light”. But my daughter is..a bright, illuminated light. She really is. It is the perfect description for Phoebe Lucille. And I get to be the steward of this bright, illuminated light. What a blessing.

    I can’t believe we’re here, so close to the end of treatment. It seemed forever away, and now it is in sight. I know the end of treatment will carry with it it’s own worries and concerns. But for tonight, I will just live right here, in this room that has seen so much, and recount this year with gratitude.

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    January 10, 20137 Replies
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    Jana Hamilton on January 10, 2013 at 11:08 pm
    What an awesome post and I’m so glad that you’ve shared this journey with all of us and so happy that the end of treatment is almost here! It’s been a very long emotional year! I’d love to see a video of Phoebe again. Every picture I see of her brightens my day. God bless you, Fair family. You’re in my prayers every single day
    Reply ↓
    Mishea on January 10, 2013 at 11:18 pm
    What a family! What a girl! What an indescribably amazing God!!
    My son & I have cried, prayed & quietly walked through this past year with you. Your honesty in writing has ushered me into a whole new realm with my Saviour. My 9 year old is changed for the better, praying for you all. We love you, Fair family! Christ’s mightiest of blessings upon you all.

    Reply ↓
    Peggy Stalling on January 10, 2013 at 11:33 pm
    WOW!!! Ok, Amey….what an awesome post about an illuminating precious Phoebe and her family. From where we sit, as your prayer warriors, we have cried, loved, worried, laughed, spread the message of Phoebelicious, giggled, smiled, ate french fries in Phoebe’s honor and of course prayed as never before day and night, knowing that God would see ALL of you thru as HE willed!
    As we were reading your post,tonight, our minds went to those times and remembered where we were, and how we found out, who we talked to , how we shared….and can not believe that it has been a year since your journey started.
    Thank you, Phoebe, for being a beacon of light, hope and faith! You have brought the Love of Christ to more people than you can ever imagine!
    Thank you, Amey, for sharing this very personal journey with all of us!
    Love, Hugs, and BLESSINGS!
    Peggy

    Reply ↓
    Rogers, Ian on January 10, 2013 at 11:40 pm
    Dear Amey, your words come at a time of deep, weary sadness for me, and I am suddenly borne on the clouds, cradled firmly in the arms of God. And all below me, I see a world of sadness and fear, disease and death, but under the absolute loving sovereignty of The Father. Without making any logical argument, it makes sense.
    You and your precious daughter are messengers, stewards of your life experience, which is like spun gold woven with the finest pearls. Yours is the finest, most encouraging story I have heard in years. I will never meet you until the other side, where I will have the privilege of introducing you and your family to my little Maggie Grace. She will have heard of Phoebe, and be so thrilled to meet her.

    Reply ↓
    Brenda Rhodes on January 11, 2013 at 12:34 am
    I am so glad that sweet little bright light of yours is so close to the end of this portion of her journey. What a precious little girl she is. And how fortune that she is so very blessed to be able to call you Momma! I enjoy reading your posts. Your love of God and family come shining through in every sentenence that you write. Praying for your family!

    Reply ↓
    Linda Forrester on January 11, 2013 at 12:52 am
    Ah Amey, what a privilege it has been sharing this journey with you and your family. The strength of your faith has also reinforced mine. Hard to believe it has been a whole year. When your Dad sent out the call for a dedicated team of prayer warriors, I wondered if I would be capable of stepping far enough away from my own junk. I did, and will continue to pray through this with you all for as long as it takes. I continue to “share” on FB as well, so that those I am connected to can also include you all in their prayers. That’s how this is working, and God hears every one.
    I would also like to say to Ian Rogers, who left a post today………Ian, I will pray for the healing of your heart in the missing of your precious little Maggie Grace.
    Blessings to all and may our Lord Jesus keep you close.

    Reply ↓
    Carol Melton on January 11, 2013 at 2:56 am
    All those of us who have had the honor of praying for this little “Illuminated light” named Phoebe Lucille, have wept with you, worried with you thru each moment of the darkest hours when she was so ill;, emphasized when one by one you fell victim to “bugs” going around; rejoiced with you when she conquered yet another battle, her little body so frail but strong; waited anxiously with you for her levels to be what they should be and felt relief with you when her white count began to rise; laughed with you when you heard her singing- loudly- in some very early mornings; were in awe with you when she said “I’m an angel”; were excited with you when she began to walk with her pint sized walker and when she walked on her own out of the hospital; were humbled by your strong faith in God, which never waivered as your precious baby girl fought for her life; were thankful with you as you leaned on Him and praised His name throughout this journey you never thought you would take; but above all, we prayed with you and for you – so many thousands of prayers for you and your family, blessing each of us every time a prayer was said. What a great privilege it has been to pray you through this time of your lives. Thank you for allowing us to journey with you.

  11. I cried reading your post but they were tears of joy for you all and not out of sadness. I have been on this journey from the beginning and can not be more happy for you all. Enjoy the moments knowing God is in all of the details. Hugs, Sunny

  12. Glory be to God! He truely is amazing! He has had this hand upon Phoebe and the Fair family throughout this difficult time. Thank you Amey and Nathan for allowing us to walk with you through the good and trying times. Phoebe is an inspiration and holds a very special place in our hearts.

  13. So very happy to hear the great news! Were so proud of you Phoebe and can’t wait to see what your future holds 🙂 praying and fighting for you.

  14. I only joined your journey a few months ago because of a post by Natalie Evans. This is hallowed ground and I am so thankful to take part in this. Praise Him! Love of Christ to your family. XO

  15. Dearest Amey,
    I’m at work so this must be short. Throughout this PhoebeJourney, you and Phoebe have reflected Jesus’ light into my heart MANY times. I’m still wearing my Phoebe’s Prayer Warrior bracelet and it reminds me throughout the day to pray for you all and for many other people God has put into my life who need prayers. Love, Suzy

  16. I have not had the pleasure of meeting your precious Phoebe, but she has definitely been an inspiration! I think of her often and feel as if I know because of your wonderful postings! So glad to hear that you are close to the end of chemo and will be praying for good things to come!

  17. What a beautiful recounting, Amey! It is remarkable how this one little ray of sunshine has brought so many strangers together to pray in a united fashion…I have no doubt that Jesus sees Miss Phoebe Lucille has His bright, illuminated light among His people, as well! Thank you for sharing your heart…and your sweet, precious girl with all of us. Prayers continue from Nicaragua!

  18. Amey, again, your beautiful heart shines thru in your writing. Thank you for recounting your journey for those of us who were not with you in the beginning. I feel Phoebe’s “brightness” in your words! And feel the touch of her illuminating light from afar. It has touched my heart and been present in each prayer for her. What a precious gift she is and a reflection of the One who created her and of the one who gave birth to her. Praising God for allowing us to journey with you, for allowing Phoebe’s radiance to touch so many, and continuing to ask for his Hand of healing to be on her body.

  19. She is truly a bright, illuminated light. And so are you, Amey. Reading this brought tears to my eyes and I can just imagine what her giggles and voice sound like 🙂 Her spirit and your spirit are so contagious, thank you thank you thank you. I can’t say that enough. My prayers for Phoebe, reading your journey and hearing how you have dealt with everything has served a purpose SO much higher than your story itself. I truly have been transformed through you, Phoebe, your story, your words. I may never meet your family, but it’s amazing how God had used you in my life and the life of my own family. A night never passes that both my 10 year old and 5 year old daughter, my husband and I don’t pray out loud for your family and Phoebe. You have a place in all our hearts and we will continue being fervent prayer warriors for you. I am part of a girls prayer circle and your posts are shared there by my sister-in-law all the time. We all follow your story and hold you guys up in thoughts and prayer daily. Much love to you and your baby girl.

  20. It is so awesome when the little ones can make you smile even when you are hurting for them. It is such a blessing that Phoebe is shining her light even in this time of her life. She is such a blessing to others.

    Amey thanks for pouring your heart out through your writings. We love you guys and hope one day we can visit with you all.

    God bless you and your family!!!

    Rod and Connie

  21. Tell her I DO miss her! 🙂 After being with you guys, I have told people how stunned I was at the joy and life Phoebe radiated in the midst of it all. Being with her so blessed and impacted me… forever. She has come so far and has fought so hard with grace straight from the living Jesus. I’m tearful as I think of all this year has held for you all and what a truly one-of-a-kind girl you have been given. I love you my dear friend.

  22. Thank you for sharing your joy, gratitude and servant’s heart with us. Phoebe is a bright ray of Christ’s light in our lives and world. May our Lord bless her and all of you with health, peace, and ever deepening love this new year.

  23. We thank you for allowing us but a glimpse into your room at Children’s Hospital in Dallas, and into your lives, dear Amey (and family) and precious Phoebe Lucille, Bright-Illuminated-Light.

    You recount this difficult, and at times even dark, past year … with gratitude. Thank you for knowing that in sharing your journey, you bring that Light and Phoebe’s bright-illuminated-light, and her joy and contagious laugh, into our homes.

    Your post brought to mind John 1:4-5
    In Him was life, and the life was the light of men. The light shines in the darkness, and the darkness has not overcome it.

    Our young grandson has been at the same hospital, with the same oncologist, during this past year, for ganglioneuroblastoma. We have joined with so many others who have carried each of you in much affection and prayer, with shared tears. We bow in gratitude beside you.

    And we continue carrying each of you before the throne of Grace.

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