Back to the Hospital


As quick as she came home, she’s going back tomorrow for the next round of chemo. It’s always sad when she has to spend so much time between chemo rounds in-patient..just makes the going back in all that much more difficult.

Nathan left tonight to stay with Phoebe at the home of some dear friends in Dallas because her intrathecal (spinal) chemotherapy procedure happens at 6:45 am in the morning. I am thankful I got to spend the night with her at the hospital on Thursday and then I just had Deacon and Phoebe to myself Friday and Saturday while Nathan and the big boys were at my parents home for a boys camp-out weekend. It was nice to have some set-apart time with my 2 littles. Nothing warms my heart like Deacon going to retrieve Phoebe’s walker for her or helping her stand up or carrying her water bag for her.

Precious little people…
I always crash emotinally for an hour or two after Phoebe heads back to the hospital for another round. I stay home to school the boys and try to spend time doing things with them that usually don’t happen when Phoebe is home, like crafts or trips to the library. But there is always an underlying sadness that our family is not a whole unit, and often something as simple as finding a random Cheerio on my bedroom floor can reduce me to tears.

I hate that she has to do this. I hate that she begged Nathan to take her home all the way to Dallas tonight. I hate that Nathan had to miss seeing Benjamin earn his first Cub Scout badge tonight. Stuff like that. Okay, I’m done complaining.

For all my hurts, I know there are those who hurt more. My heart is burdened for sweet Piper’s Mommy tonight and the depths of grief she is trudging through. I know that my girl is still here and that my complaints must seem like minutae when stacked against the finality of actually losing a child.

Trying to practice optimism or daring to hope are exhausting at times. I have never had to remind myself so often to look for the blessings all around me. When I do, my perspective changes instantly, but it’s only for a second or two or a minute or five…then I spiral right back into seeing only the battle. This little cycle wears me out, but I have to push through or else I will miss what is right before my eyes.

So, we press on. Please lift up Nathan and Phoebe tonight. My happy-go-lucky husband is weary these days with a soul-fatigue that shows on him. Phoebe is her smiley self but you can see the cloud pass over her when she realizes she’s staying in the hospital yet again. Pray for stamina, distraction, fun, for no nausea tomorrow after her spinal chemo, for her kidneys that are still not great, for an uneventful round of chemo and for wisdom as we discuss things with the oncologist tomorrow.

Thank you all for hanging in there with us..

Phoebe in the Hospital waiting room at 6:45am!

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.

17 responses »

  1. I have never posted before but I have been following you all through this journey. I am friends with DeDe. I have wanted to post for a while but not sure what to say. You have such a way with words. I am so glad you have kept this up as I get the posting notification on my phone or computer I always stop to say a prayer for all of you. Look at that precious smile on her face. She is such an amazing little girl from the stories I have seen. I can see why too – look at her amazing Mom and Dad and family. You are such a sweet family and I am sorry for what you are going through. Please know that you are always in my thoughts and prayers. You are so very strong too! God picked the perfect family for precious Phoebe. God bless you and your family always! Hugs, Jo Ann

  2. Your entire family is an ever present inspiration to me! My life is in perspective … As always, I bow my head & ask that our LORD’s great love & grace envelope you all!

  3. Lord, hold Amey and Nathan in your arms and let them rest in your love as it refreshes and renews them. Let your peace rule over the emotional storms. Reassure the boys of their love and let them each feel wonderfully, totally and uniquely loved because they are. Hold Phoebe close as your heal her body completely. Let your great love and joy keep fear and weariness away.

  4. Holy moly Amey. I’m still so proud of you and Nathan. Thank you for sharing more than just the facts. Praying for your girl, your hearts, for wisdom, and new grace for these last months of chemotherapy. Loving you…

  5. Amey, I love your heart and transparency. You are a beautiful mother. Thank you for letting us shoulder the prayer burden with you and walk with you. May you know, Jehovah Shalom, is with you today. May His hand of peace be on your heart. Praying His strength for your family and His provision and healing for Miss Phoebe. much love — Jeannie

  6. Hi Sweetie. Yes, we are praying for ALL of you! I’m sure what you are experiencing is normal for parents who are on this journey. Keep pressing into the Father and believing that He loves each one of you and His plans are still for good even in the dark and you can’t understand how or why it’s possible. Keep seeing Him and speaking praise! I think that brings light into the darkness. I know you and Nathan can’t do this without the Lord’s strength but HE will uphold you and He will see you through this journey. You are precious to Him!

    I started a journal that I keep in the kitchen. It is a journal of thanksgiving. I write one by one things that I am thankful for. There are many moments I don’t feel like being thankful or see anything new to be thankful for but when I get started it spurs more and more things to be thankful for. It redirects my heart to thanksgiving and His presence here. His presence is there too! He is and He is surrounding you even in the fire and storms and relentless attacks.

    Love you guys so much. I am here….in California…shedding tears and loving your family.

  7. Dear Amey, I’m Helena from Indonesia. I just want to say that you are a great and strong mother. Jesus is the rewarder of your faith. I really recommend you to visit, and sign up for his daily devotional, and also learn about the truth in Holy Communion. My family and I are very blessed by his ministry, especially his teaching in Holy Communion. I was barren for 6 years, but the Lord healed me through Holy Communion that i took daily. Holy Communion is God’s way to provide healing and wholeness.
    Keep praying for Phoebe and your family

  8. Reading your blog reduced me to tears today. I am so sorry that you all are going though this & I just hate it for Phoebe. Bless her heart and give her Your Strength, Lord Jesus, to endure this next round of Chemo Therapy, returning her home to her family soon. Amen

  9. I remember those long drives to dallas in the middle of the night when I would get fevers inbetween chemo cycles. I would cry and beg my mom not to take me to the hospital. I have felt phoebes pain and lived that normal. I have been following your family and continue to keep you all in my prayers. I started a blog years ago and one of my posts came to mind when I read this post. Praying that HE calms your raging seas right now! -Tiffany

  10. Amey, thank you for always sharing what’s on your heart. It allows those of us that lift your family up to the Lord to know how to better direct our prayers. I’m praying for you all today but especially for you as a mother, as a wife, as a daughter, and as a child of God. Jesus, wrap Amey in your arms right now…

  11. Deepest sympathies on the passing of Zig. His book “Confessions of a Grieving Christian” was a great ministry to my family as we went through a difficult loss. We will always be greatful for his joyful spirit and sense of humor when facing hard times. You have a wonderful legacy in him.


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