Therefore We Do Not Lose Heart…

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Miss Phoebe is snoozing away and I am enjoying the peaceful atmosphere of her room here on the HEMOC (Hematology/Oncology) floor. My days of sneaking Starbucks into the room and hiding snacks in every nook and cranny are over. I can finally eat and drink in broad daylight. It’s the little things that make hospital life do-able, and here on HEMOC I have access to an ice machine and a coffee maker and I can order room service and eat in the room. On ICU I always had to leave Phoebe and go eat in the waiting room.

The boys and I had a great day of school and Nathan slept off his hospital hangover while my Mom had Phoebe duty. Phoebe had a great day, and tried to talk more than she has up to this point. As her respiratory therapist was leaving this afternoon. she said “thank you for doing so well Phoebe” and Phoebe said “you’re welcome”. Then she tried to tell her Mammaw  “I want..I want” several times. She said all the names of her brothers and asked for Mama when she woke up from her nap. Her speech therapist commented that she could tell Phoebe would be chattering away if she had better lung capacity and that she will do just fine as her lungs clear up. THAT was exciting to hear! It was so wonderful seeing her really interact with us. Her weak little smile lights up the whole room.

Our meeting tonight with Phoebe’s oncologist went very well. I feel like we got so many of our questions answered in a satisfactory way and that we walked away encouraged. We have some things to pray about and I am confident that God will continue to guide us each step of the marathon.

Benjamin had a better day and he opened up last night about how God has been leading him to pray for the family members of those affected by the drug-related violence in Mexico. He said He feels like someday he will go back to Mexico as an adult to live there and minister to them. I was blown away when he told me this. It made me wonder if our dreams for Mexico will be realized through our son. We all miss Mexico and the life and ministry God gave us there. God gave us Phoebe there, and our dog Sadie is also a Mexican import! I pray one day we will live there again.

Life takes some sharp turns, and it has been a wild ride lately. The beauty of all this mess, is that the depths to which we are taken lately, make the normal everyday moments seem like miracles. So tuned in are we to the absolute magic of just living, of just going about the day to day, that time is measured differently in our hearts. Small things are huge, greatly valued. We have more grace with our boys, we verbalize our love and approval of them more frequently, we major on the big stuff and let the small things slide. We have more slumber parties in Mom and Dad’s room, we take bike rides as a family, we are purposeful about our time together. This is the gift that every parent of a child with cancer can attest to. It’s the secret we all know. It’s the beauty from ashes.

Today I have been meditating on this:

“Therefore we do not lose heart. Though outwardly we are wasting away, yet inwardly we are being renewed day by day. For our light and momentary troubles are achieving for us an eternal glory that far outweighs them all. So we fix our eyes not on what is seen, but on what is unseen. For what is seen is temporary, but what is unseen is eternal.”   2nd Corinthians 4:16-18

Not losing heart,  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.

14 responses »

  1. Amen…such an answer to the prayers of Phoebe’s army….so thankful for encouragement…So thankful for God’s obvious encouragement of Benjamin today….Thanks for sharing your heart with us…We pray on with you in the marathon….where God leads there is hope….

  2. So glad the meeting went well! And I am so glad for Benjamin. I had been praying specifically today for the Lord to give him a vision and hope for the future. I had know idea why I was praying for that or that He had already been working on it!

  3. I read a cb today owenlyons about a boy with atrt who is doing well and I hope you read it to find hope and strength. I believe/hope its Gods will to be reading about phoeboe in 5 years doing great! My thoughts and prayers are with you everyday! Kelley

  4. I see that second wind now in you, that renewal from the inside out… He does indeed answer prayer. A friend at church prayed 2nd Corinthians 4:16-18 over you and Nathan a few weeks ago and I thought it aptly fitting. Perfect that you should share it now.

    Benjamin is making me tear up over here. Such a precious boy you have. Each of them. But to hear him share what you said… *sigh*… he’s precious.

    Love you~
    Lacy

  5. O Amey! As with every entry we read [and we read each one!], our Father is teaching us such deeps of His heart through you, Phoebe, Nathan and the boys! Today was no exception!!
    My husband, Walter, badly broke his clavical and a rib today while skiing. He will more than likely require surgery. We’ll know more manana. BUT! In addition to deep thankfulness that it’s ‘only’ his clavical, we are blown away by the Scripture from 2 Cor 4 today. I wrote that verse on the windowsill over his bathroom sink when we were building the house. It’s just soooo true this day! Thank You, Jesus, for speaking through the ‘clouds’ and into our hearts through the lives of these precious ones. May Your hand rest kindly over them as they sleep tonight! amen. [just in case you’re clueless of who we are: Nathan stayed at our home during Daniel Holmberg’s wedding.]

  6. What a great picture, all your kids together atast!! I’ve been thinking about the big
    Move and was praying that it went ok on everyone. She looks happy in that picture and Iove seeing all her toys and blankets out! Your words are always encouraging and a nice reminder not to forget the little things in life! We continue to fight and pray with you. Love you Phoebe Fair!!! The Williams Famy

  7. Dear not losing heart Amey, (love that)
    You are impacting my life through your blogs. I often think through out the day of things you’ve reminded us of and I’m currently snuggling my kids in bed tonight. They thank you too 🙂 also what a wonderful job you and Nathan have done in teaching your kids to hear the Lord- love hearing Bens heart. So thank you for not losing heart and for allowing us to join this journey with you.

  8. I can hear the spirit speek through your words – and it´s powerful. Like I said some times ago – God´s plan for you and your family are mighty. Seems like God is pouring his heart for the people left behind already in Benjamins heart. And you never know what the other boys may do one day! Our world needs leaders with an heart of mercy and an spirit close to God. So I am anxious.
    I am so glad that Phoebe is back! Chatting girls are great! Lulu was sick the last days with influenca and when she started to chat and talk all the time – I knew she was almost recovered.
    I love the way you describe how you cherish the moments with your children. This is what we experienced too and it´s amazing when your view is changed what God can show you! The real important things in life and God´s heart is so obvious then.
    My focus on praying is today for you and Nathan. I think that there is way more to go and as I know the enemy he will try to hasle where he can. So we pray for protection, clear view on things, wisdom, strength, healing power of God and a hiding place for you and Nathan to be. And of courses we pray for Miss Miracle to have more lung power to say what she wants to!!!
    Sleep well and may angels guard you all!
    Chris

  9. I read this quote on Katie Davis’ blog. Her book is “Kisses from Katie”. http://kissesfromkatie.blogspot.com/
    “And this is what I learned: the hard does not minimize His goodness but allows us to experience His goodness in a whole new way.”

    Her thoughts are what I had been thinking the last few days as I thought of your journey and my own. It was encouraging to see it in print by someone else.

  10. Amey, yesterday I was blessed by a friend who sent me your blog. I read it from start to finish. I am feverently praying for Phoebe, for you and Nathan and for your boys. I can’t imagine how anyone could get through this without trusting in God’s will and His plan. Today I am reminded of what truly counts in my life and vowing to brush off the small stuff because of your journey. I vow to love deeper in all regards to my life. Thank your for sharing your heart and baring your soul. I promise not to forget your family and will be cheering for your family on the good days and praying for you all everyday.

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