Mar10

Perking Up!

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Phoebe is on the upswing. Right after she received her platelets and blood transfusion yesterday, Nathan sent me a picture of her walking to the playroom! The difference in how she feels pre vs. post transfusions is really incredible. Blood is so important, and having the right amount of the right things in your blood makes you able to function properly.

The best news is that her ANC (Advanced Neutraphil Count) is 30 today, which means that her immune system is revving up again and she could be headed home as early as tomorrow. It’s wonderful to think this might be her last transfusion for a very long time, and that soon enough we can take her all around town and to church without worrying about her immune system! What a feeling that will be, to just be able to go places with our whole family intact.

Eventually we will work towards weaning her off her ng tube, giving all of her meds orally, and teaching her that she has to drink despite her lack of thirst. We will also be setting up a set-caloric intake to help balance out her weight. There are still many challenges ahead, but having been through the last fourteen months, they seem minimal in comparison to chemotherapy and learning to swallow, breathe and walk again after sepsis. We can do it! She can do it! We have so much to be thankful for.

Here’s to Phoebe coming home to stay!

~Amey

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Filed under Uncategorized | 15 Comments

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. PRAISING GOD for another MIRACLE!!! Using Phoebe’s words……”she is an ANGEL” 🙂 Phoebe have an AWEsome day! Can not wait for the day that Mommy gets to say you went to church, town, where ever….ALL together with NO WORRIES 🙂
    Blessings,
    Peggy

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  2. Thank you, GOD for staying with this family during this journey, and thank you for getting Phoebe back up and on the go again! We are so thankful for all the things you are doing for this family…especially for healing that sweet baby girl! Phoebe… the endless fun and family outings are on their way! God will go with you each and every day! You are showing more and more the way!
    God bless your family…and I look forward to some AWESOME updates and pictures of YOU!

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  6. Dear Amey,

    Phoebe and your whole family have been on my heart so much and definitely in my prayers over all these months. What a tough journey for Phoebe and all of you. Your posts and your attitude through this difficulty is amazing and full of the grace and strength of God. I am so happy that Phoebe will soon be fully recovered and have a strong, healthy body and immune system. We went through something similar with our grandson, Von Rovenstine, so we know a little of what you have been through with Phoebe. May God be to all of you all that you need, uplift your spirits, give new strength to your bodies, refreshing your souls as only He can. May God hold you close as you realize afresh his unconditional, unfathomable, and indescribable love for all of you!

    In Christ’s amazing love,

    Mary Garborg Prior Lake, MN

    P.S. How is your Grandmother, Jean, doing? We sure love her. We loved Zig so much too. He was such a wonderful man of God who touched so many lives. He visited us in our home (tacos) when he came to Mpls. a couple of times when he had speaking engagements. We also spent time with Jean and Zig together when they would come here for his work. He and Rolf (my husband) were especially close. How we miss him!

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  7. Oh my goodness, you do have much to be thankful for today! so happy that Phoebe is doing better. Praying you will be home soon. Hugs, Marilyn

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  9. Love you Fairs! We think and pray for you often. I am so blessed to see Gods hand in Phoebe’s life. May you continue to be blessed as restoration comes. Love the Velas

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  10. Thank you so much for all you’ve shared over the last 14 plus months. It’s been such a blessing to be able to pray for you all and be a part of your lives!

    Reply ↓

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