Phoebe Update

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We will not know the nose swab test results until tomorrow, but it appears that Phoebe has a virus. She has typical cold symptoms; runny nose, a little cough, watery eyes and fever. She has been dehydrated and they have doubled her fluid intake so the last two days have been a juggling act with her Diabetes Insipidus. She is a little grouchy and sleepy, but otherwise does well when she is awake.

Tomorrow is day eleven of this chemo cycle and on day 14 her blood counts usually make a reappearance, so we are watching her closely and praying for her immune system to reboot quickly. This round of chemo included a drug called Doxorubicen which is always very hard on her immune system knocking her counts down to zero and causing mucositis, painful sores throughout the lining of her mouth and digestive tract.

Deacon goes in tomorrow to have his Mepoplex foam pad removed and check up on his healing from the burns. His face is looking really good and most of the burned skin has peeled off now. He is very itchy, otherwise it looks like we might be in the clear as far as infection goes. I will update tomorrow after our appointment.

Please pray that Phoebe’s immune system comes back good and strong and quickly so she can fight off this virus without any complications. Thank you all for your kind messages, cards and letters and prayers, we feel very blessed to be surrounded by such a host of loving people.

~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.

14 responses »

  1. Praying and fighting for you all!! I hope Deacon does ok with his appt and its not too painful. So many people are praying for you all in Colorado! Think about Phoebe often and am always checking for updates….love to you all

  2. Even we will most likely be not online the next two weeks we keep you with us and will keep praying for the whole family! Hopefully the booting up starts soon! We’re glad that Deacon is doing so well an hope Phoebe is soon over the virus!
    Chris

  3. Goodnight Amey and the entire Fair family! We are praying for speedy recoveries and a resupply of patience and grace!

    Love from Washington State

    Cheri

  4. Prayers for all of you…. Phoebe, you are a fighter… God knows that..and he is going to be with you every step of the way. Prayers for a safe and happy Memorial Day weekend, and Memorial Day! God bless and keep you all! Prayers for wonderful blessings from God and some great test results…and an Immune system reboot that AMAZES the doctors beyond it all!

  5. Father, we cover Phoebe in prayer for protection. Where she is weak He is strong! We praise You Father for seeing her through! And we praise You for Deacon’s healing!

  6. Keeping all of you in my prayers often.
    Lord Jesus, let You presence reign in Phoebe’s body and Deacon’s body. Fill them with Your glory for where ever You are no sickness can be. In Jesus’ name, amen.

  7. Prayers coming your way. My 4 year old daughter Kyli Taylor was just diagnosed with ALL Leukemia and I will keep Phoebe & Deacon in my prayers.

  8. Hi Amey, I’ve been following your story and I’m always humbled by your ability to stay positive. My husband and I have both been praying and will continue to pray for your family.

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