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”.
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
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.
Your strength amazes me. I’m sure Phoebe
gets a lot of it from you.
We haven’t met, but I know your Dad and Julie
well. I worked at ZZC many years ago and had
the pleasure of working with Jim. I remember
Zig speaking about you often.
I was gutted to hear the news about your daughter.
All of us that have precious kids like yours are just
heart-stricken by this. It makes me not even know
what to think and is very confusing.
All I can say is that your precious child, along
with you and your husband and your entire family
are on my heart and in my prayers. I hope to
have the pleasure of meeting all of you one day.
Warmest wishes from Austin.
my name is Sabine, i am new here. I live in Germany / Europe. My english is not so good, but I try my best. I see a video film about Phoebes cancer story on You tube. And since I do this, I must think about Phoebe every day, I love this girl, although I’ve never met her. I have three children and so I can understand your pain and what it means to lost one of them. It must be an inconceivable pain for a mother. I admire you Amey and your family. I wish you Strength and hope and love.
I would be so happy to know Phoebe. Every Day I look for new messages from you about her.
I would like to write you personally Amey. Maybe you answer me. I am very excited.
Cheer up Amey
Hi Sabine, thank you for your sweet message. -Amey
Dear Amey with family, 2 days then it is christmas. I wish you and your family blessing of God and peacefulness on this holy days. Even if the loss, which you all have suffered is very painful. I wish, you can still look forward to these special days. I have heard today in my church this claim : “And I say to you, rejoice, and again rejoice!” announced by the angel the birth of our Lord Jesus. Phoebe has trusted him and was not afraid. That what she has said. Phoebe has now something we all have to wait. She is with Jesus and can be very close to him in this blessed time. Phoebe is to be envied now. She truly deserves it. I wish her the best and send her all my love in this days. In my thoughts I am always with Phoebe and you and your loving family. Best greetings and blessed and peaceful Christmas, Your Sabine (from Germany).
One year ago today is Phoebe’s anniversary. Rest in paradise.
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!”
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! 🙂 God is in control! No Doubt! keep walking by FAITH!
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.
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.
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.
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!
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.
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.
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.
Words are insufficient to convey the strength that you possess, both as a woman and as a mother. Your faith in God is astounding and your hope is of equal ground. We are praying for sweet Phoebe and all of you, as you face such a difficult time. We are praying that God will continue to give Phoebe the strength to pursue her fight and that she will beat this atrocious disease; we are praying for God to comfort y’all and fill your heart with peace that only He can provide; we are praying for a miracle for Miracle Phoebe and that Phoebe will continue to grow, progress, and that she will ultimately be healed. We have placed her on several prayer chains that span from Alabama (where we live), across to Texas, and even into Switzerland. Thank you for sharing your story and continuing to keep us updated about Phoebe’s improvement. She is such a blessing and she has touched so many lives, at such a young age. There is no doubt that her little light has brought many to God, and that is an accomplishment of its own. Sending prayers and love, from our family to yours.
John and Ellie Albritton
Amey- I am praying for Phoebe. My heart is with you.
The strength and love of your family is so heart-filling. Watching your love for her on Facebook and this blog has put so much perspective on my life and how I can be a blessing to others. Just know, that through everything, you are so loved by the community you’ve built to support Phoebe and you will forever be apart, of at least my heart, and many more people. Your whole family’s peace and well being is always on my mind and in my prayers.
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To the Fair Family,
We never had the honor of meeting your or your angel Phoebe, but we have been following your posts through our church emails and praying for you all. My heart is breaking and I’m soaked with tears thinking of your grief, but I am so grateful on Phoebe’s behalf that God gave her to such an amazing family to live out her short life. From her pictures and your posts, it seems that she had more love and happiness in her life than most of us do who live for decades or a century. God gives the most special of his beloved children to the most special families and you all prove that. We will keep praying for your peace and comfort and know that someday you’ll be reunited with Phoebe in heaven.
Dear Amey, thank you so much for answer me. I am so happy about it. I would know you better and I want to show you my family, me and my three children. I would like to send you a private message with pictures from all of us. Perhaps you are curious to get to know us ? I’m definitely.
I hope you do not hold me for intrusive. I will not bother you. If you do not want closer contact, I understand that. But I hope it is not so and we can get to know us better. When you want, please send me an Emailadress, which I can write to you privately, not publicly. You can contact me and only me about firstname.lastname@example.org that is my privat email. I look forward to your answer and am curious how you decide. Thank you for that chance to know and love you and that sweet little Phoebe.
Love greetings Sabine (Germany)
I’ve tried many times to write you a message but have not found the right words. The right words to say how sorry I am. How much I wish things were different for you.
My son Jayden was diagnosed with ATRT in March of 2012. He is currently in remission but I am frightened out of my mind of losing him one day.
I would very much like to email you personally.
Your faith is truly special. I’ve not been raised with a faith and I wish I had.
I wish for you strength and love.
Hello Amey, how are you ? I hope a little bit better. I still think about you and your family many times. I wish you strength for the new period of your life without your little Phoebe. Perhaps you can not believe what am say, but Phoebe had changed my live. She is in my thougts and I had begin to interest for more informations about AT/RT Cancer. I find many informations in the internet and I will help where I can and so a support a hospice and a foundation for cancer-stricken children. Sometimes you might talk to Phoebe. Can you tell her how much I thank her that she has shaped my life and my world has changed. Amey, I wish you all the best. Love greetings Sabine.
Hi amey, it’s me again. Sabine from Germany. I am so happy for you that you’re pregnant again. I secretly hope it will be a girl. I wish you that you may experience as a small girl can grow up healthy. With Phoebe you have not experienced the long happiness. Therefore, I wish you all the more the experience as it is with a little girl that does not each moment to the hospital must, but you can enjoy the light-hearted child. I wish you the best for the pregnancy and birth. May god bless you and your baby, as he has blessed the little phoebe. In love Sabine
I came across your Facebook page a few months ago and have subsequently been reading through your blog from start to finish. I am compelled to write but to be truthful, I have no idea what to say. I want to say something profound that will in some small way give you comfort but the reality is there probably aren’t such words or at least I don’t know them. So, I will just speak from the heart and tell you I have been touched deeply by your darling Phoebe’s story. I am floored by how painful reading it makes me feel so your pain is unimaginable. You are a beautiful family and I hope you realise how Phoebe’s story has touched lives and possibly saved a few too. Phoebe achieved more in her 4 years than most people do in a lifetime. I hope and pray that you continue to find comfort in your beautiful boys and in all the memories you have of your truly amazing, beautiful little girl. I also have a little girl and 2 older boys and your story has made me cherish them & savour them even more.
One final thing I want to say is that Amey, you are a truly talented writer. Your words are beautiful. I hope you continue to write and I, for one would definately buy any future book if it was available in the UK!
Please know that your family is in my heart. Thinking of you and sending so much love your way from here in London …xxxxx
Can you please email me? My email is email@example.com. My nephew got diagnosed yesterday and would appreciate someone to email with.
For some reason I came upon a video on youtube and i felt this conection … i cant stop thinking about this little girl and asking myself God why .. and im curious for the family how r u guys doing now … im extremly sorry for your lose .. it hit me so much , i feel like i lost her… god bless..
Wow! What can I say…. Your beautiful sweet daughter went through so much and was a fighter, your story of her difficult journey touched me so deep that I can’t stop crying. I wish that no child should ever have to endure so much and I pray for your family that the Heavenly Father will continue blessings you all… I don’t ever question the Lord’s will, but I wish that she could have lived…I would have proudly given 30 years of my life to her so that she could have lived.
“GOD BLESS YOU ALWAYS”