Frayed

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The last two days we have spent a lot of time at the hospital. Things turn on a dime with Phoebe and just a matter of hours after my last post we were on our way to the oncology clinic for a high fever. All of her numbers looked good except that her hemoglobin was low, so after two rounds of “just-in-case” antibiotics, we settled in at the “infusion room” for a 4 hour long blood transfusion. It’s times like these that I realize how fortunate we are that Phoebe is pretty laid back. Sitting still in a chair for four hours would be tough on any 2 year old, but in many ways it feels like God has specially equipped her with just the right temperament to handle this storm.

I on the other hand, seem to be grieving the loss of my healthy little girl again recently. It is wonderful to have her home and yet it reminds me how much our lives have changed.  I suppose they ebb and flow, the hard feelings that come with cancer. I reorganized her closet and her chest of drawers the other day. There was the little purple shirt with flowers that she wore to the ER that first night. That tiny shirt would no longer contain her rounded frame were I to put it on her. Steroids and lack of excersize have given her a whole new shape. In my mind’s eye I can still see her walking down the hall in the ER in that little shirt and her khaki pants. I gave them to Goodwill. I might regret it, but when I see those clothes they just remind me how much she has changed, how much she has lost already. The little pink tennis shoes with sparkles she wore that night still have dirt stuck on the soles. That dirt reminds me that she used to walk and I leave it there. Now when I stand her up she cries out in pain, her feet have started to point downward and they often hurt. And I hurt… 12 weeks in to 52 weeks of chemotherapy…

And then I read a friends’ blog who has just recently lost her 2 year old daughter to Leukemia and my perspective shifts. She’s still here…with us. I saw her belly- laugh today and she called Nathan in from the other room so she could pray for him. She piped up out of the blue “Mom, I love you SO much!” and my heart did a little flip.  And that is more than some families have tonight. But man, cancer is a beating. I need buckets of grace and super-powers just to do the everyday things. We live tired..it’s a constant state. And sometimes I wonder, “how can we do this for 14 months?”…one day…one moment at a time, and riding on the prayers of those who have the heart to pray for us. So when I say ‘thank you for praying for us’, I mean it in a genuine way. The highs are high and the lows are low and I never knew that I could be so grateful and yet so sad all at once. Phoebe is a trooper, I think it’s her Mom that is a little frayed around the edges right now, lol.

We are watching her for fever closely and if she has another one we will be admitted back to the hospital. They are really going all out to try and keep us home for as long as possible, but three high fevers in three days would be too much. Please pray that Phoebe’s body would regulate her temps correctly (if these are central fevers) and that we would be able to stay healthy and at home a little longer.

~Amey

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. Praying…asking God to provide what you all need to persevere and endure this marathon. Love you. Got our sweet thank you card today. “I love neutrophils” made me smile. Sorry it is so hard and so long….sigh….

  2. For whatever its worth, I am so proud of you, Amey. You are a fantastic mom and you are doing such a great job. We all stand in awe. We love how you love Phoebe and your family. Jesus is so real in your writing and it ministers to all of us greatly. We pray for all of you often and you are always on our radar. Oceans of strength and grace to you and lots and lots of love.

  3. Praying Amey for a no more fever…that Phoebe’s body will regulate if that is what is needed.
    Yes, we understand the high’s being high and low’s are low! With God’s help and peace ,one day at a time….even though at times it is one second at a time!!

    Blessings,
    Peggy & Mike

  4. One day at a time, one hour, one minute, one second. With each one God is, was and will be there. To know and be in control of how each of us handles those times bit by bit.

    Still praying for all of you. Each one deals with all of this in their own way. Blessings and peace to each of you.

  5. Oh, so sorry to hear that Phoebe is running a fever. Y’all have my prayers. She is on our prayer list at church.

  6. Don’t know how you guys do it. I can’t imagine. I am awed by Nathan and Amey. We had one scare with Melissa our daughter when she was Phoebe’s age in Eq. Guinea and had evac her to Cameroon with and Infection they couldn’t stop, couldn’t get IVs started etc and touch and go for bit. . Lasted a week and it did me in. You have been in the fight a long time. You guys are strong. You guys are amazing. I praise God that you have been so strong for Phoebe. And I know he will give many more buckets of grace. He is a living fountain of grace.

  7. OH AMY, I KNOW YOU FEEL SO WEAK IN YOUR SPIRIT, BUT ALL OF US OUT HERE PRAYING FOR YOU AND YOUR FAMILY SAY “AMY IS SO STRONG IN THE LORD” WHEN WE ARE WEAK HE IS STRONG…… WE PRAY FOR PHOEBE AND YOUR FAMILY AND KNOWING THAT GOD IS DOING A SUPERNATURAL MIRACLE IN YOU……BE BLESSED AND OF GOOD COURAGE..GOD IS NEVER LATE…U R <3'D

  8. Cry out to God as you go through emotions that change so frequently. He knows your hurt and your heart. My whole family LOVES your sweet girl and lift you all up in prayer! Hang in there and know that we are here for the journey! Hugs to sweet P!

  9. I woke up at 2:30am and felt like I needed to check email… and there was your email…. I sent out prayer requests to everyone I could think of ..and shared your posting on my facebook page. Prayers for Phoebe and your entire family. GOD is with you all every step of the way. Victory in Jesus!

  10. He has given her His temperament! What joy and what a blessing. Keeping you all in our prayer.
    God Bless you all.

  11. God bless your tiny ‘Miracle’ and give you the strength you will need in the days and months to come. I lost a son to a lung disease and a grandson to a heart defect so I know the long fearful hours spent praying over and over ‘Please God. Please God.’ Hold on tightly to our Lord. He will be with you every step of the way.

  12. Hello Fair family 🙂

    I am a friend of Summer. I have been following your story and praying for all of you. As a mother of 4, my heart goes out to all of you, and I share in your pain and your celebrations. I wanted to share with you a story of a friend’s daughter. She had a 2 year battle with neuroblastoma. This family also struggled with the same ups and downs, and am very thrilled to report that not only is she cancer free today, but she is back in school and living the life that a child should be. God is SO good, and even through the rough times, he is with all of you, and holding your hands. The plan is His, and His alone. Your precious baby is such a beautiful gift! Hold onto her and your faith, and know that there is another heart praying for you all!

  13. Praying for you as you grieve what was, as you live in what is and as you have hope for what will be. Love to you all. Phoebe’s gift from Victoria is done. We will be bringing it when we bring her to the airport May 16.

  14. You don’t know us, but our family is praying for Phoebe and your family daily. Your trust in God is an inspiration to us, and we will continue to pray for strength and grace for you through this long trial.

  15. Amey,
    So sorry little Phoebe has been having the fevers. I so much heard in your words your sadness and grief, at having to live with this monster Cancer. And yet still woven thru the grief and sadness I hear the trust in God thru all this and a compassion for others suffering even more. And if someone like me can see it, I KNOW our heavenly Father sees it and I ask Him for the comfort only HE can give to you in times like these. It was good that you gave those clothes away. Some other little girl needs them,
    luv,
    Kay

  16. “Give us this day our daily bread.”…
    What you need day by day, moment by moment, will be given. Feel the love and be sustained by prayers from many. God is good.

  17. Sending you a card today, but with this new update wanted to add an additional hug and let you know I’m praying for you all today, right now, and love you so much. Praying Phoebe gets to enjoy the rest of her time at home, feverless, and that you and Nathan and the kids have a shower of mercy and grace today. Love you.

  18. Cancer is such a nasty thing and I ache that Phoebe is suffering today. Praying and praying for her to fight this and for grace, patience and a calm heart for you and Nathan.

    Remember that during this storm that is going on all around you, to keep your eyes fixed on Jesus and His promises. You have given Him control, just continue to trust in Him. It is when you take your eyes off of Him and look at the storm that you start to sink. Panic, worry and stress all come flooding in. Instead, choose the fruit of the Spirit.

    Galatians 5:22-25
    But the fruit of the Spirit is love, joy, peace, patience, kindness, goodness, faithfulness, gentleness and self-control. Against such things there is no law. Those who belong to Christ Jesus have crucified the sinful nature with its passions and desires. Since we live by the Spirit, let us keep in step with the Spirit.

    Praying and praying for your whole family.
    <

  19. Loving and praying for you all. Great writing Amey. It helps me to pray when you articulate your feeling so well. I, and many, many, many others are walking with you through the valley.

  20. Ah, the agony. I can only imagine…….no, I can’t imagine what you are going through. My heart aches at the thought. Rob Lacey, who also battled cancer, did a paraphrase of Psalm 23. It went something like this: ‘And though I walk thr…ough the valley of cancer I know my Lord has got the answer, and He carries me and He comforts me. You are with me, and You comfort me.’ Yes, dear friend whom I’ve not yet met, I am praying for you and for little Phoebe.
    Janice Scott

  21. A photo of Daddy love. Words of Mommy love.

    Lord God, we ask for mercy for precious-Phoebe, for Your Name’s sake, and in Your love.

  22. From a prayer partner that emails me and prays for others with me…. this is her note…

    So sad that a child and their parents have to face a sickness as horrible as this.
    I am praying that God will strengthen Phoebe to keep on fighting and that His angels of love and
    mercy will wrap their arms around the whole family. Lord send a cooling touch to Phoebe and
    let the fever be gone!

  23. That is such a dear picture of Nathan and his baby girl……….she is so blesses to be cradled her earthly Father’s arms and her Heavenly Father’s arms all at the same time…..
    Jeremiah 32:27…..”I am the LORD, the GOD of all mankind. IS ANYTHING too hard for me.” He has your back……

  24. Precious daughter….I don’t have any words to express the kind of love and admiration that came with reading “frayed”. …for you and Phoebe fair …for all of you. God brings you to mind often and I do and will continue to pray. I am a 75 year old grandmother so prayer is the mainstay of my life.
    Please Lord Jesus heal Phoebe fair (my “pet” name for her although I like Phoebelecious a lot too!)soon Lord…

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