Blood Transfusion

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Phoebe is doing great! As expected, she needs a blood transfusion for low hemoglobin just as she does each time she has this particular round of chemo. Tomorrow morning I will take her in to Dallas to be transfused which usually takes about four hours, and then we should come home.

There has been a pretty joyous atmosphere around here lately. It feels so good to not have the next round of chemo looming ahead. I can’t believe that when her counts come back up they just get to keep going up, up, up! It will be such an incredible feeling to be able to take her out and about without worrying about her immune system.

She keeps telling everyone, “My hair’s gonna grow back!”…it’s the sweetest thing. She already has a little bit of peach fuzz and looks so sweet.

We had our meeting with the social worker to apply again for night help and we are still waiting to hear back about it. He was very encouraging and we feel very hopeful that we will be approved. I will continue to post updates and pictures as Phoebe recovers. You all have become so much a part of our journey through your prayers and encouragement these past 14 months that I can’t imagine not keeping you posted!

All our love and gratitude to you,  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.

18 responses »

  1. Nathan and Amey,

    So happy for you as the chemo journey comes to a close. Wishing Phoebe all the best with the blood transfusion tomorrow and regaining her energy and enjoying her new look with hair as she starts preening herself in the mirror.

    Hope the boys are doing well and in good shape to play with their little sister as she gains her energy back.

    Also, praying that your grandmother is doing well. Im sure she must miss your grandfather Zig.

  2. Blessings and more blessings. Each and every day. Is all I wish for Phoebe and all of you. And many, many morw joyfuk moments. What a journey. But besides all… wow, wow, I am thankful for Phoebe. I learned things I never knew. And I appreciate life more than before. And she has inspired me to do better than I was doing and live life to the fullest. And you, Amey made showed us what faith really is.

    I am so blessed for knowing you and Phoebe and your family and made me and us part of the journey.

    Priscilla

  3. Amey & family~
    Since the very first day that our mutual friend Sara Fu shared y’all’s story with me your family & Pheobe have been in my thoughts and prayers. Thank you for sharing her & y’all’s life with us! I am soo excited for the good news and the end of chemo for Pheobe. Know that you all will continue to be in my thoughts and prayers and even though you don’t know me if you ever need anything g I am just a few miles drive away in Tyler.
    Your families faith in God and how his work is to be done has been a blessing to see even through the uncertainties and struggles.

  4. Oh, Amey, on the contrary, it is I who thank you and Phoebe and Nathan and the boys for allowing me to share your joy and sorrow. When it becomes a burden, I will understand. And I hope you will understand how God has blessed me through you.

  5. Thank you for the update and for feeling like you can still update us! I look forward to any and all updates! Thanking God that all is going well 🙂
    Blessings,
    Peggy

  6. I hope you will keep us posted on all the wonderful things Phoebe will do with her pretty self. Your sweet and faithful family will continue to be in my prayers as you settle into life in East Texas with the little miracle. I’m so thankful you are on this side of ATRT.

  7. I just joined the band wagon recently but I just love that little girl. I feel like I’ve known her all her life. I’m so happy for you all! I can’t wait to watch your precious little girl grow more every day.

  8. I cont. to lift u all up. Your journey stirred up a lot of emotions for me as when our daughter who was 7 at the time had the flu and it attacked her heart. We lost hyper twice and thru the attacks she suffer couple strokes. She is now 31 and her and her husband and our two grandbabies pastor in SC. Our hospital journey was not as long as yours it was the years of the recovering she went thru. God is so faithful. He is our Peace. He is our strength and our Healer. We cont to Praise God for his hand on your family. Can’t wait to see all thqt curly hair with ribbons and bows. We r continuing to believe for night help tooooo. Keep us posted. Frank and Pam in Ga. Blessings.

  9. Praise the Lord, Hallelujah! We are so happy for all of you and will continue to lift you up. What a journey for you all – especially Phoebe. Hugs to you all, Marilyn

  10. We are all just about as excited as you that Phoebe is done with the chemo. I pray you are able to relax some and not carry that fear that “it has come back”. I pray she is healed completely and will only be getting better and better every day. I pray the boys will also be ‘healed’ of the worry and anxiety for their sister. I pray you and Nathan will be rested and able to give time to your relationship with each other. I pray for total healing for your entire family! I thank the Lord you have gotten to this point, there were times I wondered if Phoebe would still be here by this time, as I am sure you wondered the same thing.
    Love and continued prayers!
    Terri – Mazatlan, Mexico

  11. Praise God!! I’ve been following Phoebe and the Fair family since just after her surgery, and my prayers won’t stop. Hoping you’re approved for a helper this time Thank you (entire family) for being such an incredible inspiration. BTW, I can’t wait to see those beautiful curly golden locks again!

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