Update

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All is well in the Fair household. Life has been moving along at a “normal as can be” kind of pace and that’s been nice. Phoebe is doing so good…her eyes are bright and she is so animated lately, it’s beautiful. It has been almost four weeks since her last chemotherapy and you can really see the difference in how she feels.

Yesterday morning as I shuffled through the kitchen to put the coffee on, I heard Phoebe singing LOUDLY in her bed: “HOLY, HOLY, HOLY, LORD GOD ALMIGHTY…EARLY IN THE MORNINGGGG MY SONG SHALL RISE TO THEEEE” and then “I PUT MY HANDS UP IN THE AIR SOMETIMES, SINGIN’ AYYYYY-OH!” I laughed out loud and then peeked in through her door to find her belting out her song while Nathan snored away peacefully right next to her. It was awesome.

Her ANC is down to 4,000 so they were right when they told us that her counts would be down for longer this round. On Tuesday she will begin her next round of chemo so we are praying for her counts to be in a good place by then.

We FINALLY got all set up with Phoebe’s at-home health care. She will have her first at-home physical therapy session tomorrow and this will begin her scheduled therapies 3 times a week. We are still waiting for her speech and occupational therapies to get started, but physical therapy is the priority so that she can begin walking again. She was fitted for her orthotics last week and I am anxious to see her wearing them so that we can get the ball rolling.

Benjamin (10) had an MRI on Tuesday. He has frequent headaches, most likely related to his blood disorder, but with Phoebe’s condition they exhaust all possibilities to make sure we are not overlooking something serious. Phoebe’s cancer is not hereditary, but both Nathan’s sister and my Dad have had (benign) brain tumors removed when they were children, so anything is possible. God help us if that is the case. I am not worried, and actually glad that they would look into it to this degree just to rule things out.

Nathan’s sister and her husband and children are here for a week and we are enjoying our visit with them. We spend our evenings sharing stories from the mission fields where we serve. They serve in Liberia, Africa and although Mexico is a completely different continent and culture, many of our experiences are similar. I thank God often for the family I married into. Nathan’s parents also served in missions in Eastern Europe for 16 years and Nathan lived overseas until he was 10. I love listening to my father in law share stories with my boys about what it was like smuggling Bibles behind the Iron Curtain during the Cold War. I am thankful for the heritage my children have.

I apologize for going so long between updates…life is taking on a more normal shape and I am often relieved to have nothing to report! 🙂 Phoebe’s next MRI is scheduled for August 13th, three days before she turns 3. So we soldier on, trying to be as normal as possible, and enjoying the small things. The small things are the big things…they really are. Thank you all for praying for our family, some days we just hang in there, other days are full to overflowing with goodness and gratitude.

~ 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.

10 responses »

  1. Praying for higher counts Phoebe!! Praying for 2 clean and healthy MRIs and may you have the best third birthday celebration one could ask for:)!!!!! So glad to hear this update and such positive thoughts. Have fun and enjoy all those little moments together as a family. We love you and continue to fight and pray!!!

  2. So glad to hear things are ‘normal’ for you lately! It gives you a chance to rest up and refocus on the other family members. I pray Phoebe’s next round of chemo will go well and she will feel good and snap back quickly. I pray for strength for you Amey and Nathan, and all those who help you and your boys. Blessings!

  3. I love that you dont have ‘anything’ to report. I really enjoyed hearing Phoebe’s edited version of that song. That is so great and what a funny story to tell. Loved it. Thanking God for ‘nothing’ to report! Phoebe makes my heart smile.

  4. We are seriously blessed through reading God’s story and how he’s written your lives into it. Your suffering does not go unnoticed or under-appreciated. In the lulls, when there is little to report, your heart and faith and hurt is just as important as on the more chaotic days. I love you and pray for strength to build and spread throughout your days.

  5. GOOD MORNING TO THE FAIR FAMILY, ALLELUIA !!! A GOOD WAY TO BEGIN THE DA,Y,
    WITH THE JOYFUL NEWS OF PHOEBE SINGING PRAISES UNTO THE LORD AND YOUR FAMILY’S
    LOVE IS SHINING THROUGH – MY PRAYERS WILL CONTINUE FOR PHOEBE AND YOUR FAMILY
    YOU ARE SURROUNDED WITH LOVE, JOY, FAITH AND HOPE.
    SUZANNE

  6. Hi Amey,
    I am so happy for you that things have settled down and Phoebe is doing well!! You have. Een greatly blessed by our Father. Continuing to pray about both of these scans.

    God bless.

  7. Amey, we are so thrilled to hear that things are
    Going so well and your family is able to
    Function somewhat normally. I got chills
    When I read that Phoebe was singing
    Holy Holy Holy as I remember you saying
    Ithat was something she did before this
    Whole ordeal and that you so missed that!
    We Praise God for all the great progress
    And good news and are so thrilled that
    Our ‘adopted family’ is smiling!! God bless
    You all. You are always in our prayers!!

  8. I think it’s wonderful that you are feeling more like normal! I look forward to the day that you can go months without anything new to report. (Even though I love reading your blog!) 🙂

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