HAIR Today, Gone Tomorrow

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We have been enjoying the past few days and getting settled in back at home. It’s hard to believe we are where we are considering how certain it seemed that Phoebe was leaving us last week. It’s incredible the way she turned around and we are savoring this time.

Unfortunately, our little fuzzy-headed girl is bald again. She had an atypical (go figure) response to a Phase III trial drug that we administered for a week that has shown promise in slowing down tumor growth. It was supposed to be pretty benign regarding side-effects, but Phoebe’s counts plummeted and she contracted the stomach virus and then lost her hair. And she could care less. As a matter of fact, she had fun pulling it out and Nathan videoed the whole 10 minute long event. That girl. She’s unstoppable. Hair shmare.

It was an emotional week, but bringing her home again has been such a blessing. She is weepy at times and is having some pretty difficult neuropathy pain, but on the whole she is doing very well. We have decorated the house for fall, and started back up with school, and we have been enjoying the cool mornings on the front porch drinking coffee and enjoying each other. The small things are everything. Just waking up in a body that is healthy and can move, doing school, cleaning the house, lighting a pumpkin scented candle, having a cup of hot tea, watching the boys play tackle football in the yard, having all four kids under the roof, watching a rain storm roll in…this is this stuff of life, the goodness of the Lord in the land of the living.

-Amey
Phoebe Clowning Around

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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. What a very special girl! It is wonderful to read that you are enjoying your days and all the wonderful things about fall and family. Praying and praying for Phoebe, your family and 100% health here on earth.

  2. She is so amazing and so Phoebe-licious in every way!! Is she still at home? I have a special treat coming her way, should arrive in Lindale tomorrow. I hope she loves it as much as I did making it for her.

    All my love and many, many Blessings,
    Stevie

  3. You are AWESOME, Phoebe! I have friends in a lot of states that are praying for you and your family. They write me when they don’t get updates… and ask me if I have heard from you! They all rejoice in your good days…and we cry when things aren’t good for you! GOD does love you, Phoebe… and YOU are teaching all of us how we should be!!!! Enjoy your family, sweet Phoebe… they love you to the moon and back..and I know you have been blessed by them! GOD bless and keep you all! Love you, sweet girl!!!

  4. Ah Amie, what an awesome post….just LOVE it!!! I’ve been thinking of all of you so much since I knew you took Phoebe home, then not hearing from you after that. I was thinking last night “no news is good news” and I am so glad and so thankful for this wonderful wonderful post and the pictures of Phoebe. She looks GREAT!! Love the clowns too. Glad you are just enjoying the season, fall is my favorite time of year, and just enjoying your precious family time. Give Phoebe a big ole hug for me, so wish I could do it in person! Praying for you all! Love, Jana

  5. It really is the simple pleasures of life that bring such richness and joy. So happy to hear you are all back together at home and enjoying each day God gives. Thanks so much for sharing! With love and prayers for Phoebeliscious and all of you.

    Sent from my iPad

  6. Praying for the quiet, special moments to continue for all of you with your dear sweet Phoebe! May Jesus take away ALL her pain and heal her.

  7. Awww such a beautiful girl! Cherish these sweet days; they’ll be locked in your heart forevermore. My warmest wishes go out to you all.

  8. So happy to hear that y’all are at home enjoying each happy moment together. God gives us so many precious gifts each day to enjoy and so many times we are too busy or distracted to even notice what he’s doing…it’s when we are truly living in the Palm of His Hand , completely dependent on Him, that we can truly see and enjoy these precious gifts He so loving gives us….Enjoy to the fullest!! Praying for darling little Phoebe and and all of you…you are such an inspiration to me.

  9. So adorable!!! Thank you for sharing! We have been praying for her precious Phoebe since diagnosis, and we are so thankful to hear she has bounced back. She is a gift from God and teaching us all how to live our lives for the Lord, and cherish the family He has given us. Love and prayers from VA! : )

  10. Nathan and Amey, the very first time you brought new little Phoebe to church, her eyes looked like they do in this picture. I remember thinking how peaceful and wise she looked. I know these days must be an impossible combination of all things sweet and tough. Know that we are praying for all of you, especially the boys we adore. They are being molded by your courage and your faith and by the unstoppable grace of God. Love you all.

  11. Praising God for the time we have shared and making memories for a life time. Loving Phoebe and knowing God is with her is our comfort. May He grace us with comfort in our time of need and may She flourish for her life time, with peace and knowledge of God.

  12. Loving this time for all of you. Praying the PEACE of GOD – JESUS- is present and so real that you can touch HIM. Still reaching out for his garment for Phoebe and for you. We pray for healing even at this hour LORD. Touch this precious family and have Your way. Your will be done.

  13. Hi Amey,

    Sent a little something in the mail for your children today. You should receive it by Monday. We are so in awe of your story and how you’re letting The Lord use it to transform lives. You are an inspiration! Blessings on all of you.

    The Allens, VA

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