Radiation Week in Dallas

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Phoebe is doing very well, all things considered. She is tolerating the radiation treatments well, although the side effects will primarily begin to show up in a week or two from now. She should also be feeling some relief from the tumor pressure and that should continue to improve over the next 2-3 weeks.

The radiation waiting room is a special place. A sea of broken people; adults of all ages, children, brain cancer, breast cancer, pancreatic cancer. We exchange knowing glances, we learn each others names, we smile. There is solidarity here and I find myself thankful that I can never un-know that such suffering, such valor, exists. It makes me a better person. It keeps insignificance in it’s place.

We have been enjoying staying with my Grandmother and Phoebe is keeping a captive audience with the sweet people in the senior living community where she lives. She never misses an opportunity to spread her joy around or tell an unsuspecting stranger that her daddy snores. Silly girl. It’s hard to fathom a world without her and I try not to.

The boys are having some much needed time at my parents’ house and getting spoiled before school starts for them this next week. We have home educated from the beginning and will continue on this year. I don’t want my boys to miss a moment with Phoebe, and if we are behind come the end of the year, so be it. I know God has provision for us in this season and it will come together.

We are all looking forward to closing the books on this week. Radiation at 6am for 2 weeks is for the birds. It will be nice to get back home and have a more relaxed schedule. We are holding up well, by the grace of God, though sometimes a flash of pain so intense comes over me I can hardly breathe. It’s usually in those moments that I have jumped ahead of God and imagined a life without that sufficient grace. If I stay in the moment, I do well.

Your prayers, encouragement, stories, good works and empathies are a lifeline for us,

~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.

15 responses »

  1. So much love and so many prayers being said for you all. No matter when Phoebe leaves, be it next week or when she’s 90, she is a Child of the Great I Am and she will.have a wonderful blessed eternal life with Him. And you all will be spending that blessed eternal life WITH HER! Someday, I hope to meet Phoebe to hug her and let her know how much she has taught me. Thank you God for Phoebe!

  2. Lord, thank you that Phoebe is tolerating the radiation and experiencing relief from the pressure! Thank you for Amey sharing from her heart and helping us to keep as she says the insignificants in their place. We pray blessing and provision over those in the radiation waiting room. Lord may each one know the sound of your voice and the touch of your hand on their hearts. Please continue to be close to Phoebe and her family as they journey this path. May they know they are dearly loved by us and abundantly, exceedingly, extravagantly by you.

  3. Bless you, Sweet Mother for all that you are.
    I watch faithfully many times every day for your post. (My heart jumps in my throat though)
    Thank you for painting such vivid images of precious little Phoebe… And her daddy snoring!
    She truly is a miracle… Forever!
    Love and prayers,
    LaNell Rogers (in Jacksonville)

  4. Praising God for some relief from the pain. Praying for protection from the side effects and for complete healing here on earth.

    Brave, brave heart. Father will carry you along Amey, never take your eyes off of Jesus.

    Praying and praying.

  5. My girls and I are always praying for Phoebe. Alina’s first prayer in English was “please heal Phoebe”. I know we may be far but I’m always thinking about you and sending you good vibes. Love you.

  6. Oh Amey, my heart breaks with you. I have not lost a child but my mom died of lung cancer. I thought that would be the worst ever but about 15 years later my diabetic niece, age 10 then, went into a diabetic coma & we were told she was brain dead. After 3 days my sister & her ex decided to turn off the respirator. Kristian started breathing so hard & gasping for every breath. My sister sat right by her bed & read the Bible to her. I couldn’t even stay in the room because I kept crying. Today Kris is 32 & a recovering addict. I still say that God has a special plan for her life. I have yet to convince her but that’s ok because only God can bring that reassurance to her. So that was probably the hardest thing I went through because for some reason, it’s just harder with kids. I have lost many a friend & relative to cancer but I have also seen miracles for friends with cancer. God is so good & He loves us all the same. Keep the faith & belief that there is still a miracle with Phoebe’s name on it. My love to your whole family & many blessings are to come for you. Hugs, Elaine Sellers

  7. Would that we could all learn not to jump ahead of God. I pray daily for a miracle, and for God’s comfort to wash over you. May you stay firmly behind his protective grace.

  8. My wife had mentioned Phoebe and her story in our life group shortly after she was diagnosed in 2012 so we could pray for her. I was sad to learn that a little girl and her family was suffering from this terrible situation, but I did not know anything more about it. So, a couple of weeks ago I spent a few hours and read your blog from start to finish. I cried…I laughed…I thanked God for His grace and the parents He chose for Phoebe. I could not begin to understand what you have been through, and words of empathy would fall miserably short of what I truely feel. I love you and your family, although I have never met you. I pray constantly for you that God’s grace will continue to cover you and your beautiful family.

  9. Thanks be to God for protecting Phoebe through this treatment, and I will keep praying that she will have absolutely no side effects, only relief. I am also praying for your dear boys as they welcome Phoebe home again and resume their schooling. Extra prayers for rest and happy playtime for all of you!

  10. My heart is so broken for you and your family! You and your family have been such an inspiration for me. You live what you preach and your family is the better for it, especially dear Phoebe. I know the road ahead looks too tough to travel, but I know my Heavenly Father will carry you through. Praying for you all!

    God bless,
    Shawna Godsy

  11. Sending you all lots of love, hugs and prayers! God is always there, and no matter what he will carry you through it all! I love your sweet Phoebe, and the world has been a better place for her being here! It is amazing how short of time she has been alive, and yet she has touched many lives and hearts…mine included! Give her a special hug from her friend in Washington! 🙂

  12. Hope for things not yet seen in front of us is the evidence that our faith holds firm ~ and this is very pleasing to God who sees the way-bigger picture than we do. Such strength in your solidarity, Amey and Nathan: I, too, have learned much from you and your family, and I encourage your resolve to live moment by moment, as you’ve discovered it’s only NOW …and then NOW …and then NOW that God’s Kingdom intercepts us. You are dearly loved.

  13. With your family in my mind, I WILL keep insignificance in its place! Your words are always so touching always what I need to hear and right when I need to hear it.
    Thank you
    Kristen

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