Phoebe Update

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Some days are better than others for Phoebes…she is pretty emotional right now and that can be difficult for everyone. The car seems to soothe her and help her sleep so we have been doing a lot of driving. Nathan drove around town for 5 hours the other day so she could sleep well. She seems to feel more comfortable sleeping at an incline, likely from the pressure in her head. She won’t eat much else besides popsicles and sometimes ice-cream although she’ll ask for 5 different things trying to find something to make her feel better.

Today she grabbed her little noggin and took off at a full run trying to escape the pain. I remember her doing this before she was diagnosed with the first tumor and it is disheartening to see again. I am hopeful that we will see improvement as the radiation does it’s job reducing the tumor size.

For now, she needs relief, the boys need grace for her mood swings and we just need prayer. Thank you for surrounding us with your love and support.

-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.

23 responses »

  1. **tears**Praying for you my sweet friends. May the Father’s hand strengthen you beyond understanding and His deep love sing over your souls! Praying for peace and for relief! Hugs.

  2. Amey, we continue to pray for peace for you and your family and, of course, especially for little Phoebe. Sending hugs and love your way.

  3. Just want you to know that I think of your Phoebe every day! How unfortunate that she’s feeling a lot of pain. Very understandable that her emotions are in upheaval. What a sweet girl.

  4. Bless her sweet little heart! Mine aches for her & your family Amey. Prayer is going up for you every second of every day. I do pray for the pain to cease & for grace & mercy to surround you all. God is so sweet, I know He is holding her in His loving hands, even as I write this. God bless you all with the peace that only He can give, Elaine Sellers

  5. Our Dear Heavenly Father, Please be with Phoebe right now and relieve the pressure in her head relieving the pain. Be with the family during this time giving them Your Strength, Your Grace, and Your Endurance for the journey they are on.

    Nahum 1:7 The LORD is good, a strong hold in the day of trouble; and he knoweth them that trust in him.

    Be this family’s Strong Hold, Lord Jesus as they put their trust in You. In Jesus Name, I pray, Amen

  6. i am praying praying praying for all of you. My heart is breakimg for all of you and praying that God continues to give to each of you what you need. love and prayers, marilyn from TN

  7. words…..I have none in a human language to tell you how deeply we feel for Phoebe and the family. As a parent, it is unthinkable. Therefor plse know we are praying for all of you constantly!

  8. Amey,
    I continue to pray for Phoebe and your family. God’s grace truly is sufficient for us! I’ll be praying for the boys to extend that to their baby sister as they all go through this with Phoebe. I don’t think I’ve ever felt so emotionally involved with a family that I didn’t know before, although we are the family of God and I count it a privilege to be a part if it! Hang in there as we continue to watch our Sovereign God’s plan unfold for your family! Remember, His ways are higher than our ways. That sounds so cliche’ and yet, we have to hold onto that truth and trust Him with EVERYTHING.
    I know He’s holding your baby girl in the palm of His hands!

  9. Amey, even tho we’ve never met, I feel like I know you. My heart goes out to you and to the Throne of Grace on behalf of Phoebe and all the family. I cannot imagine what miracle God is going to give you through this time. In Christ’s Love, Carol from PA

  10. I read your posts often, pray for you much, but don’t comment. Today I want to comment. Your family is in my prayers. Much grace and peace to you in this time!

  11. Dear Heavenly Father this angel named Phoebe needs your touch of healing. Let it be fast and glorious for your name sake. Let people see and know you are The King of healing, and no man can be you. I pray for agony to come to and end so she can know you, your grace and love, and your never ending comfort. AMEN

  12. God please relieve Phoebe of the pain in her head. Please give the boys grace and the patience they need to deal with Phoebe and her illness.

    Please give strength to the whole family as they are on this journey with Phoebe.

    Lord please surround Phoebe and her family with Your love. Build a hedge of protection around them and send your Angels to guard them.

    And Lord if it be Your will please completely heal Phoebe.

    In Jesus Name. AMEN

    Kevin Keenon

  13. May the love of God and the favor of God surround and uplift all of you, and may Phoebe experience the total restoration of her brain and body in the name of Jesus and by the authority of His blood and the Word of God. May there be Grace, Grace, Grace for all of you in this season.

  14. Prayers that Jesus will remove all of Phoebe’s pain and completely heal her. May He also shower grace, peace, and rest on all of you too. Love to you.

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