A Good Day

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The fever came last night, 102.8 and her cheeks flushed. We called Oncology, the usual procedure, and it hurt just a little when they said we could stay home. No need to come to the hospital for antibiotics.

The tumor makes her brain unable to regulate her body temperature. So we gave her pain meds and she lit up like the bright illuminated light that she is. She has had a great day. I mean really great. Family is surrounding us, and it’s an easy come-and-go thing. Pastors and friends from our church have brought laughter and counsel and fellowship and food. And we just follow Phoebes.

Each new face that comes through the door gets escorted to her bedroom where she hosts a tea party with her beads. Hide-An-Seek follows and if you’re lucky, she’ll paint your nails. She has never met a stranger, and the visitors are fun for her. We are being purposeful about living in the moment and not getting ahead of ourselves. Sometimes that is easier than others and when I snuggled her at nap-time my tears soaked her pillow.

I shrink at the thought of her pink and yellow bedroom empty.

It completely levels  me.

But for now I memorize the soft, downy feel of her new-grown hair and smell her sweet little arm. How is this real?

This week we will do Phoebe’s special things while she still feels pretty good. We will go to the zoo, have a ballerina dance session with some little girlfriends at a dance studio, and have her birthday party.

Phoebe turns 4 on August 16th and we will be celebrating her birthday early. Right now we are celebrating each moment with her.

Please pray for her little noggin and her back pain. It comes and goes, but is very obviously painful when it sneaks up on her.

Thank you for loving us,

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.

30 responses »

  1. Our Sunday School prayed forball of you today. They care because they are Christians, but it’s personal becausebyou are Ryan and Annetta’s friends and they are our family. Most f all, we are the family of God.

  2. I’m so happy to hear today was a good day … you all have my prayers, my hugs and my love … I am hopeful that the happiness and joy you share each moment with Phoebe will be greater than the pain from her illness. Each moment with this precious angel is a miracle and a gift.

  3. I am so glad Phoebe had a good day, when I first say the email it just broke my heart. We all love this precious child of God. I will continue to pray and expect a miracle from Almighty God. Phoebe has more strength and courage than I could ever expect a child to have. We weep with you. We pray with you. We expect miracles with you. God hear our prayer for Phoebe.

    Hopefully tomorrow will also be a good day.

  4. I am new on your site and am adding my prayers and positive thoughts for you and your entire family. For this first comment I leave, let me say that Sherri J. said beautifully what I am feeling tonight.

  5. We have been praying for your precious Phoebe since Jan. 2012. Your family is an inspiration. Your faith and journey cause me to seek God in a very real way. You have changed our lives through sharing Phoebe’s story. We are praying for your sweet girl during this time. Our Lord is exalted through you and your family. You are being Held by Him, and we will pray you feel His love surrounding you each minute of everyday. We love you. <3

  6. My heart aches for you. I can’t even begin to imagine what you are going through. Going to give my little ones an extra long hug tonight. Prayers for you and your family!

  7. We serve such a mighty, good and gracious God. One who takes and gives, one that named the stars. .. what a blessing your sweet Phoebe is. My prayers are with you.. thank you for sharing Phoebe with us. May Gods abundant love carry you when you can no longer carry yourselves. ..

  8. So happy to hear Phoebe had a good day today and I thank you Amey for keeping us all up to date. This just breaks my heart but just want you to know that my thoughts and prayers are with all of you each and every day and have been since Jan. 2012. I have learned so much through this journey and have come to love your family like my own. Hoping for more good days and happy celebrations.

  9. Dear Amey, thank you for courageously sharing your days with us. You, Phoebe, and your family have deeply inspired me, and so many others as you know. May Jesus continue to wrap you in love, flood you with strength, and send endless precious moments, big and small, each day. I am constantly praying for all of you, and my family and friends are praying too. We send you our love.

  10. Amey, always always always you and sweet Phoebe and your entire family are close in my thoughts and prayers. I pray for your strength and for Gods ever present Peace and Presence Love is the answer and yall have that! I love you all.

  11. Amey- please let us know how we can support your family during this time!

    Cheri Perry

    You can get everything in life you want if you just help enough other people get what they want. -Zig Ziglar

  12. Thank you for continuing to post about the sweet Fair family and Phoebe’s journey. Loving, crying and praying.

  13. Amey, thank you for your transparency and BEAUTIFUL heart. I wish I could be there to meet sweet Phoebe and your whole family. Please know that you are embraced and prayed for by all of us from afar. The Lord brings you all to mind throughout the day. We are lifting you up and continuing to pray for God”s miracles…small and large. May you see His grace in each day ahead…each moment a treasure.

  14. You cannot imagine how much I love you and your whole family!
    I am pretty down now though I know that all is under God’s complete control.
    Praise God for your family and friends and church- I would be there myself if I could!

    Amey, you are so lead by the Spirit. (I would say “brave”, but I know better than that.)

    Thank you for posting. I worry about her pain as well as how it will effect you. She has been a very courageous little fighter. She has filled your life with enough love to last a lifetime, and it will. In her few years, there is no telling the lives she has touched.

    Keep the Faith

  15. Oh, Amey, I just finished watching TBN’s 40th Anniversary Broadcast a few minutes ago, and Jan Crouch shared her story of the stage 3 colon cancer she was diagnosed to have 10 years ago this month. It had spread throughout her body, 3 of 4 lymph nodes were cancerous and she was given 2 months to live. They operated to remove the mass from her colon, and she related praying with the nurse before going under anesthesia, “Jesus, I’ll see you in a minute, but if I don’t, then you have a bigger job for me to do yet.” She awoke, looked around and said, “This is definitely not Heaven!” But then she chose to have NO chemotherapy and NO radiation as a follow-up to the surgery ~ something she was told she’d HAVE to have. That was 10 years ago, and she has been cancer-free for these ensuing years!!!

    When you related that the oncologist said you needn’t come to the hospital for antibiotics, my spirit said, “God, you are greater than fever, greater than pain. Your word says if we resist pain, it has to GO. ~and we know ALL things are possible with You.” So I place Phoebe in a basket and lift her to You, placing her in Your hands for Your Healing Touch. And in the name of Jesus I command every electromagnetic frequency and every chemical frequency in Phoebe’s body to align with the Word of the Living God; that her immune system is strengthened, and for every rebelious cell to be destroyed. May light and love fill and flood Phoebe’s being.

  16. Fair Family,

    You do not know me, but we are brothers and sisters in Christ. I have been praying for and following your sweet girl and family through a friend on FB. Please know that there is prayer going to the throne room of heaven for your family. I have a three year old boy and 2 year old girl and tonight I hugged them a little longer and stayed with my son a little longer at bedtime. Isnt it an amazing gift that the Lord entrusts to us? That is, the gift of our children. I must remind myself daily that my littles are not mine but my Lord’s and His plan for their life is just that, His. Its so hard to wrap my carnal mind around. But I pray that I will take joy in this incredible Divine gift of children. I pray that you will have great joy together even in the midst of difficulty. May in all things HE be glorified!!

  17. Your family came up in a post on my Twitter Feed on Friday…and I’ve scoured your website for Phoebe’s history and your walk with God through this. Oncology Nursing is my background, but we, too, have spent many years overseas, like your family, serving the Lord.

    I’ll be keeping your website open in my browser, and will remember to pray for you all. Trusting GOD to give you grace for the days ahead. Thanks for taking the time to share your walk together through this. Phoebe is so lovely and precious. What a treasure in such a fragile, frail little vessel….

    You & your family are such good stewards in caring for this little one. God be praised for every single day we have with these precious little ones…may your days with Phoebe be long and exceedingly bright ones…..

  18. I know each of you will cherish the precious time with Phoebe. I pray for many good days & for the pain to be less & less. I don’t want the sweet lil’ girl to hurt. I pray for Jesus to take away hers & your pain. Just remember that God loves her more than anyone & that she is the apple of His eye. Love & blessings to all.

  19. I don’t know you or your family, but I have come across your blog and my heart is completely shattered. Your Phoebe should not have to endure any of this. I pray with my whole heart today for a miracle for you guys. Our God has your sweet little one in his hands; I pray that he comforts her and your whole family and that he removes her cancer and breathes fresh, healthy new life right through her. All things are possible through Him and that is what I am standing in today. God bless Phoebe and her purposeful life.

    Please let me know if Phoebe would like a certain birthday present sent her way.

  20. Amey for every one of us who leaves a note here, there are countless others reading and praying. May God’s comfort and grace wash over you, your family and your precious baby girl.

  21. I can not imagine this I know each of you will cherish the precious time with her. I pray for many good days to all.That her pain will not be. God loves you all and you have been a great wistness. You family has touch my life so much/

  22. Hi Amey,
    I’m praying for a miracle. I don’t know God’s will but I do know he is all powerful. You have not because you ask not is my mantra right now as I pray day and night for Phoebe’s body to be healed from this horrible disease. I also pray for comfort for everyone. I read your words about her empty room and tears formed as my heart broke for your pain. I know that God holds you at this time and always. I see your faith through your words and thank you for sharing your beautiful heart and your beautiful family. Please know that so many people are praying and the power of prayer is nothing short of miraculous.

  23. God cares so much that he collects eery tear we shed as He tekks ub Psalm 56:8. We lift you up to the One and Only Loving God of the Universe.

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