Back For the Next Round….


Phoebe had a great time at home this week…she got to be here to celebrate Averic’s 8th birthday, visited with old friends who are moving to Maine, made her first visit to a roller skating rink and even took a trip to Barnes N Noble!

When she wasn’t busy being busy, she took advantage of some snuggle time with her brother and turned it into a nap…..

Averic looks like he’s ready to get up, Lol!

Today we took her back to the hospital and she started her next round of chemo. When we arrive at her room on the oncology floor each time we go in-patient, she says “No Mommy, I don’t want to…” and it breaks my heart. She knows that she will be staying and not coming back home for a few days. She actually refused to sit on the hospital bed today and instead spent the entire afternoon and early evening on the couch. I think she was in denial…poor little bugger bean..

All in all, it was a great visit home. I would like to see her sleep better at night, level out a bit more emotionally with the steroids, and drink more fluids by mouth. Her home health Physical therapy consult is on Thursday and I am glad that we will have that in place for her now when she is at home.

And the week was touched with sadness too as we learned that Maddy, one of Phoebe’s AT/RT friends in Florida, received devastating MRI results after her chemo treatment was completed. There is no recourse for her, only to keep her comfortable. Please pray for Maddy’s family tonight…these families are so dear to our hearts.


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.

10 responses »

  1. Love snuggle times 🙂 so precious. Will pray for Maddy and her family tonight. Love to the Fair family from the Mayer family 🙂

  2. I’m so glad it was a great visit home! And I can’t believe Averic is 8! Time really does fly. I love the picture of Phoebe napping on her big bubby. So precious. I’m so sorry to hear about Maddy. My thoughts and prayers are with her and her family. Love you bunches and will see you soon!

  3. I wait everyday for your saddens me when i see that you posted late or even in the middle of the night. I worry about your exhaustion! My life of course knows none of the trials of yours but my husband and i have a diabetic son. Last night i was up at 2:30 and again at 3:30 checking blood sugars. Today we press on regardless. Our family is touched by your posts. I check your website several times a day to see if u posted yet. The children automatically pray for the Fairs by name. We send those prayers and are glad the Holy Spirit understands what i am saying when i am speechless.

    • God bless you all, and my prayers for Maddy and her family… May they take comfort in knowing that Maddy will have a wonderful journey to Jesus….and all her pain, sorrow and sadness will go away! Jesus will take very good care of her! Way to go, Phoebe! You keep on keeping on!

  4. So happy she had a good visit at home. Our prayers will include Maddy and her family. Isn’t is wonderful to know we will see her again some day. What a day of rejoicing that will be…

    Hugs, Marilyn

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