July 26th

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Such sweet months leading up to Phoebe’s birth. I have flashes of memory: relaxing in a chair in our backyard in Mexico while the boys splashed in the water sprinkler on the trampoline, hanging diapers on the clothesline in the sunshine, picking the bananas from our tree. I was reading ‘The Yearling’ for the second time in my life and feasting on the rich ‘coming of age story’ of a boy named Jody. I was waiting expectantly for this unknown baby to make his or her appearance.

July 26th was the due date. But the weeks passed and I was patient. Mom flew down to wait with me and finally, on August 16th (!!!) my precious Phoebe Lucille made her entrance. Her timing was not what I expected, but it was God’s and I was His.

On July 26th of last year (2013) I sat in a small room in the Oncology clinic at Childrens Medical Center Dallas. Nathan sat next to me, then Mom and Dad on the other side of him. We had been in this room many times over the past year for port access, lab checks, antibiotic infusions. We had played with the toys and eaten snacks and walked down the hall to the prize closet when Phoebe had done a good job of allowing them to access her port. Any one of those little rooms in the Bright Building Oncology clinic would have been as familiar, a second home to pediatric oncology patients and their families.

But today was different because we didn’t usually come to this room for MRI results. Dr. Bowers usually met us in the MRI waiting room, gave us the good news of a clear scan, and we headed home relieved. It was a long walk from the imaging area to the Bright Building. Not long by distance, but long with fear and knowing. Even with that, my thoughts turned toward more chemo or a new treatment plan of attack.

The social worker came and took Phoebe to the play area in the waiting room. And then they told us it was back. The cancer was back, and it was already half the size of her original baseball size tumor. And that’s not all; it had spread, two new small areas on her spine showed cancer growth. The room stood still. It had only been two months since her last clear scan. I looked blankly out the window at the care passing by on the street below us. Those people, just driving by, going home from work, going about their lives I thought… and here I am in this room, trapped by this news with nowhere to run from it.

We talked about options and they were unsatisfactory, all of them. There was no good option, nothing that would offer hope, nothing to grasp to even hang on by my fingernails. Nothing that wouldn’t hurt Phoebe more or cause her permanent damage. And then we ask “how long?” and he says “two to eight weeks”. And then some discussion of hospice and it’s all a fuzzy, hazy blur and I’m knowing that I have to keep it together when I see Phoebe so I don’t alarm her. I am numb as I hold her chubby little hand as we walk down to the parking garage. She chatters away with her sweet voice, her pink sandals tapping on the pavement as she walks.

Phone calls are made on the ride home and we soldier through them without crying because Phoebe is awake and happy and asking for extra ketchup on her French-fries. And then we come home to the boys.

The boys…

Phoebe goes inside with Grammy and Grandad and we sit on the front porch with the three best big brothers in the world. These boys give meds, push water, know how to cap off an ng tube. They change diapers and help her onto the potty. They stay and cuddle with her until she falls asleep at night. They bring her extra ketchup and have tea parties with beads.

We form words out of our own pain somehow..”cancer is back, growing fast, nothing left to do that won’t hurt her more”..between sobs we somehow come to the point: “two to eight weeks” Nathan says.

Sobbing, and wailing, and boys don’t cry like this. Utter despair and “how can it be?” and “why?” and “Oh my God…” and deep, guttural cries. Such grief for boys too young. We are a family broken in heart. We will be the unfortunate survivors of Phoebe’s cancer.

It is a scene emblazoned on my mind. Tonight I revisit it to share the details, to get it out in words, to put a book-mark on this one year anniversary. I usually spend my days mustering strength to keep these many memories in check so I may continue on. A year later we are better, I think..still broken, yes. But God has given us tools and helped us draw from deep reserves we didn’t know existed in ourselves. Grace for the moment is real. We are coping, functioning, and we find joy in life, though not the unbridled joy of life before loss. Not yet.

We miss her, we ache for her, we are overcome sometimes by longing. We grieve, we look past each other having a bad attitude or a bad day and try to give grace, because a lot of the time, it’s just hurt bubbling to the surface. We are getting through.

And Phoebe, Oh I feel joy for her, such relief…that she is free from “this body of death” as Paul referred to in the Bible. No more pokes and chemo and C-Diff and hospital stays and being on isolation. No more ng tube insertions and late night fevers and 3 am ER visits, no more neuropathy or pain. I would gladly live that life again if it meant having her here with us. But it’s selfish…she’s done with all that and I am so glad for her. She handled it all so beautifully, like the bright-illuminated light that she was. Glowing and graceful and emboldened by a deep connection with Jesus that was beyond my knowing.

She was born “late”, weeks past her due date, but she was right on time. And she left earth too early, too early for this Mother’s heart. No… her timing was not what I expected, but it was God’s and I am His.

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.

15 responses »

  1. Tears and heartache. I know the Father is using your gift of communicating these difficult times to help others who have gone or are going through similar situations. Your words minister to me too Amey. I Love you and I am still praying for you.

  2. As usual, tears forming as I read your words. But, there could be no more beautiful words than yours. I think of your sweet Phoebe often and your wonderful family.

  3. Prayers for deep peace as this anniversary day draws to a close, and in the days to come, as always. Thank you for sharing with us how God’s grace is daily surrounding you as you accept His timing in all ways. Love and hugs to all of you.

  4. I have thought of her – and us – and the boys today. I have so many pictures of her on the gurney before and after her MRI…as we waited, knowing the news could be bad. She was happy and I was glad that she woke up easily and was not sick to her stomach. The hardest moment in my life I believe was trying to keep Phoebe from being concerned about the wailing on the front poarch as you and Nathan delivered the news. I could see Scott and Sarah were struggling, too. The grief and agony still echos in my mind and I wonder how we are all still here…still living…without Phoebe. I think of days in terms of what Phoebe had going on at this time last year. I remember so much so vividly. And I am glad. Thank you Charlie for putting into words what was too painful to talk about among ourselves. Thank you for sharing Phoebe so freely with all who loved her. I love you. Mama

  5. Thank you so much Amey for your strength and willingness to be vulnerable and share your loving thoughts with us. We love the Fair family and continue to pray. There is an excitement too, I must admit.
    Again, we love you

  6. Thank you for sharing your pain Amy. I am not one to share my own but I will for you. I was not brought up in a Christian home. I had 2 brothers with muscular dystrophy. My father was not a loving man and ultimately became obsessed with his own grief and disappointment which led to alcoholism.
    My mother was surrounded by loving friends and ultimately shifted her love and more of her time to them, again avoiding her pain at home. It is sometimes unbearable to watch your child suffer.
    You see we have to walk out God’s love to each other and if we choose not too then others suffer a real pain which is longing for Christ’s love.

    So, I hope this comforts you to know that your beautiful Phoebe lived and suffered on this earth within a Christian loving home. God gave you the strength to endure all that you saw, did and felt. My brothers did not have that love and hope that a Christian family can give from their source Our Lord. Praise God that they left this world and entered heaven as young boys. Now they have their peace, not here, but in heaven, surrounded by an everlasting love beyond anything that we can expect. But, not all was lost. God uses “bad” for His good. Out of all this turmoil and pain my mother became a Christian and I found my salvation when I became a young mother.

    Yes, we are His and we all have a grave responsibility to see Christ in each other and then give of ourselves and sometimes we are asked to give the ultimate, our lives for each other. As a mother we give our hearts. But God does heal. I know. He healed mine and gradually I allowed Him to take the pain away and replace it with joy and hope. You see God gave me a gift. He has told me that I will see my brothers again in heaven, whole and joyful in His presence, and that is all that matters.

    Take care Amey. Keep renewing your heart in His word.

  7. As always, words that wound in their brilliance, not from a mean spirit but rather a preturnatural appreciation of grief. Exquisite pain, otherworldly sorrow. Like the “Man of Sorrows” must have felt every day on Earth. How can hurting be something to be embraced?
    How I weep for you, for Nathan, and most specially, for those three brothers, those three wonderful boys. Lord have mercy. Christ have mercy.

  8. Thank you for sharing-my husband lost his battle with brain cancer a year ago on Father’s Day-I know it helps to write it out. I feel it also honors their memory. It’s strange to think of Dave and Phoebe up in Heaven-meeting your grandfather and countless others! May the Lord bless your family with health and healing of broken hearts until we all meet again. <3

  9. Amey and Nathan,

    As I am sitting in my card reading your email in front of an UPS store. My tears runs in my face like a river. I remember last year, the same email. It arrived awhile I was home “cancer was back” I called Dede, left a message and before I could leave comments to the two of you, I cried, I cried and I cried none stop. I was asking God why and I ached like if I was losing on of my own family.
    I had follow each step of PHOEBE s journey through your email, visits and even texts. My life had changed. Phoebe changed for me. Every day I Prayed, every day I check the email and every day I listen to children music and thought of Phoebe. A child so beautiful, so strong for her own age and so faithful to God.
    I started to appreciate my own life more and pay attention to details. I would hug and kiss my parents more and I would now go see my only brother more and more each week.
    Phoebe changed me forever and I am forever thankful that you, Amey, shared each moment with so many of us. And I am thankful I was part of her life in a tiny little ways.
    How I miss Phoebe, the pictures, her voice, her videos and funny moments.

    Phoebe not only changed me but my entire family, friends and neighbors in Brazil who followed her journey along with me.

    Thank you for that Amey. And our love and blessings are with you and your family.

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