I am Amey Fair, wife to Nathan, 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”.
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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.
Thankful for your blog Amey. Praying for Phoebe and your entire family today
Amey,
You don’t know me but I pray for you and your baby girl often. I am friends with Jon and joy Scott. I recently heard phoebe’s last MRI was clear and my heart was overjoyed for you. You are an amazing woman of God and mommy. You are running this race of life that God has set before you with excellence. I am a better person just reading your blogs. You make me realize the trivial things of this life don’t matter… Thank you. Blessing to you and please give your precious Phoebe a hug from the Robinson family in Louisiana! I will keep your whole family in my prayers.
Sincerely
Stephanie Robinson
Lifting you guys up in prayers. Praying you all recover from the bad bug and you get back to your precious little girl quickly! Thank you for opening your family up to all of us. Sending lots of hugs and love to oyou all.
Amey! That’s so wonderful & powerful! That Phoebe said ” “Mommy…I’m a MIRACLE, I’m a MIRACLE, I’m a MIRACLE!”
God is in control! No Doubt! keep walking by FAITH!
That is FULL OF HOPE! The Lord has given you that! and that’s enough! I imagine Jesus whispering to Phoebe ” Phoebe you are a MIRACLE” wow!!! Thanks for sharing that with us… that made my day!
We Love you all,
Carlos, Luvit, Pia & Yophi (Phoebe’s Friend)
Amey, I am a friend of Carol Melton and Lynn Kratz. My Sunday School class and I have been praying for your daughter since the beginning. Thank you for taking the time to send reports on her because we are all wanting to know how she is doing. We’ll continue our prayers for her and all your family. May God continue to bless each of you and give you strength to go on. God is in control. Love, Carole Felts
Thanks for including the new address for us. I will continue following Phoebe and your family on this blog.
COLE’S Prayer Team
Phoebe is a miracle! May her life and journey bring others to our great God!
I was moved by phoebe’s story, because it hit close to home. Our janelle was also diagnosed with a juvenile pylocytic astrocytoma on January 2nd. I understand the comfort and power the prayers bring. I have asked our prayer chain to join yours, I know the lord will hear and keep your baby girl safe.
Keeping Phoebe and your family in our prayers. May God grant you the strength you need to see you through this journey.
Amey,
This is a comment posted on my facebook as I share your story and my friends join in prayer. I wanted to pass along to you.
Rose Platzer- Barker This is so beautiful! I am blessed to pray for this family. I am excited to see what God is going to do with PHOEBE ATYPICAL MIRACLE!!
I received a link to your page that was shared on facebook. My little girl was diagnosed with ALL last year (she was 2 1/2). It’s not fun seeing them go through everything they must, but Phoebe is strong, full of perseverance, and a miracle (as she says!). My family will pray for yours.
Amey,
My name is Tina. I know you and Nathan from YWAM. I had Benjamin in childcare when he was Phoebe’s age during the time I spent as Staff in Training between my DTS and SOE. Nathan knows me as “Windsail” from playing ghetto ball.
Phoebe has very tightly grabbed ahold of my heart and I thought you ought to know. My dad is a pastor and he brings Phoebe before our congregation every Sunday and reminds them to remember her in their prayers. Every single morning my dad prays for several hours over a list of hundreds of people and churches. Phoebe is on his list, though he has never met her or your family. Your testimony of faithfulness speaks volumes to people who don’t even know your name.
I love you and your family.
Tina
You should consider writing a book! This story is inspirational! I been following Phoebe’s story on facebook. I don’t know anyone in this type of situation and fortunately never have. But I can’t stear way from the updates! It’s so inspirational! Some people wake up every morning with their health, money in their pocket, food on the table and are still unhappy? WHY?!?! The story of your little girl and your family makes me almost feel guilty for being in a bad mood for no reason! I found myself thinking of Phoebe recently when I was having a day of wanting to literally pull my hair out, almost feeling like, “Life is not going the way I want it to.” You know one of those moments. But I logged onto Facebook and started reading a recent update where the doctors were weaning her off of pain meds. My heart sunk! I thought to myself…”Jeez…and I think I’M having a bad day??” It made me realize no matter what Phoebe was going through at that time, she was still thankful for life. Whether she understands the concept or not. It’s the faith. Then I think of YOU the Mom and the rest of the family. How strong must you be to pull through it although at times it may have seemed impossible! I don’t think most would be that strong! So now here I am…in a bad mood for no reason, when there is a little girl and a family out there struggling with new problematic decisions everyday, praying God will heal this baby girl. This story has brightened my day many times. I’m so happy to see she is home! May you all stay blessed and she continues to heal. You may have started this to maybe write down your feelings and keep everyone updated, but it has turned into a miracle story! An inspiration that may also help other people in the world! It’s definitely inspired me! Truly amazing.
God bless your family!
Amanda
Durham,NC
Thank you Amanda, I love to hear how God is using Phoebe’s story in peoples lives! ~Amey
I just came to your blog after seeing a video leading me here. I want to say I want to come alongside your family with prayers and lift each one of you up. You have a brave fighter. Phoebe is truly a blessing and my prayer is she keeps telling everyone she is a miracle. She is God’s special treasure, too.
Hi Amey, I have been following since the beginning via Tiffany Hinton. Our small group prays for Phoebe and my husband and I try to keep up with the posts. Thank you so much for each one. They really do put things in perspective for me, a normal mom to healthy little ones at home each day, every day, with the typical issues that can bring. I try to remember to take time and linger with the small things and that my normal issues are not major. You (and your husband and boys) are amazingly strong. Well, Phoebe is too, for that matter! All of you are an inspiration. I know God has great things planned for you guys at the end of this trial. I am excited to see it all unfold. Phoebe will have an awesome testimony. She is such a diva, isnt she? I love her rhinestone sunglasses! She has my heart and I really do love her. The videos make me cry. Praying for continued strength, comfort, and increased faith when needed for each of you. ~Marci Bearden Tyler, Tx
I just wanted to write and say that I empathize with you and What u are going through. My daughter was diagnosed two years ago at age 5 with ATRT. She also had total resection and went through a long year of treatment. Today she is doing very well. She has lost hearing from the cisplatin And wears bilateral hearing aids but she is thriving and life is semi normal now. Hang in there. Our children are stronger than we know.
Ashleigh,
It was encouraging to read that your daughter survived treatment and is a year out. Our 3 year old daughter has five more months of the Dana Farber protocol. It is difficult to imagine what she will be like, what disabilities will be permanent, a year out from the treatment. However, every day Zoe amazes me. You are right – our children are stronger than we know.
Hi Amey,
I have been following Phoebe’s journey since February, praying daily for all of you (Prayer Warrior). Unfortunately, I lost your Dallas address. Could you please send it to me or tell me where to find it? Thank you!
I heard about you through an interview with your mom, Julie Zigler. I am bathing you and your family in prayer daily. Children’s Hospital was our home-away-from-home for thirteen months as our son battled Primitive Neuroectodermal Tumor, an extremely rare childhood cancer. We learned the difficult lesson that sometimes God’s plan is for the ultimate healing in heaven. But we know we will see him again and for eternity! Thank you for sharing your walk of faith with all of us.
can you or nathan email me. wanted to talk about your protocol. my grandson has atrt too.
dcmuhlbauer@hotmail.com thanx