And just like that she’s done!

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Phoebe is so full of life and energy and joy today. It’s beautiful. I know she doesn’t fully grasp what it means to be done with chemo, and I can’t tell her we won’t go to the hospital again, because we will. But not for a while, barring disaster! She has recovered and continues to recover from her LAST round of chemo. WOW.

What a place to be. I admit, I do feel like I have some “road rash” for lack of a better way to explain the last year. I can look back over the past fourteen months now and see that in the beginning I was in shock. Phoebe’s brain surgery in my recall, is blurry and fuzzy and dreamlike. I remember feeling numb and going through the motions, but I was a little out of it in retrospect.

The horror of the post surgery tremors and not sleeping for 36 hours; having to hold her arms down so she wouldn’t flail about. I feel like I am reading someone elses story when I scroll back the blog to those days. People reminded me to eat, told me when to rest, and even sent us away to a hotel to sleep for 16 hours straight that week after her surgery.

Thank God for friends and family who stayed so close during those fragile days.

And then the hairloss and the Septic shock and burned hands and feet. This sweet baby girl has been through so much. And we have gone with her on this crazy ride. All of us. All of you.

Then things got better, chemo became more predictable, although not a schedule by any normal sense of the word. A thousand 2 am ER visits, and sodiums gone wild in either direction, and fevers and dehydration…and that was just Phoebe.

We also had Deacon and the boiling pot of water incident the same day Ben broke out in mysterious hives, and we had 3 out of 4 of our children in the hospital at the same time. And of course who can forget the Whooping Cough the boys and I came down with? What a mess.

And now we’re here. She’s done. Everything has changed in our world and we are different people because of this journey. It feels much like waking up from a stressful dream and realizing that your life is still in tact and you’ll be okay. But the memory is still there, and there are still things to process, still questions you are needing God to answer. So road rash…that’s the best way I know how to say it.

Tomorrow morning we will wake up together, all six of us under the same roof and start the newest normal. And Phoebe will just be doing life with us, with her blood counts climbing and climbing and that feels amazing. We have learned to live in the moment with this sweet girl, and we are all going to enjoy having her around all the time.

The boys are doing great; some of you have asked about them. Benjamin is enjoying Cub Scouts and spending time with friends playing in our bamboo forest, making hide-outs and cutting down trees with his machete. He is a voracious reader and if I don’t hear him for a while, I can usually find him curled up somewhere with a book. He is an awesome helper with Phoebe and Deacon and has really bloomed since we moved back to East Texas.

Averic is doing great too. He is hoping to start Gymnastics or Karate soon and has been improving in his reading which has been a struggle for him at times. We recently adopted a new dog that we named “Howdy” and Averic being the animal lover of the family, loves running around with Sadie and Howdy on our land. Averic is a big snuggle bug when it comes to Phoebe and she asks for him most often. He enjoys going to home-school roller-skate day each Friday at a church nearby and loves spending time with his friends. All 3 boys are also involved in kids choir at church on Wednesday nights and they love it.

Deacon is doing well, although I think this year has affected him the most. He lost his play-mate for a long time; she changed, she was different, she couldn’t play or run or wrestle like they used to and that was tough for him. He often has a difficult time understanding why Phoebe is “so special that everyone sends her mail and presents and not me” Poor little guy. How do you explain it all to a new 5 year old? So, he is a bit clingy with me and at times a little more sensitive than your average kid, but I am hoping and praying that he begins to feel more secure about his place in the family soon. He sneaks into my bed around 2 am every morning and I let him stay. He hasn’t had nearly the amount of attention and focus this past year that he would have otherwise, and I feel those 2 am snuggles, at least in part, make up for some of that. He enjoys learning letters with Mom and “doing art” he says. He is so glad to have Phoebe home and it is the joy of my heart to see those two together playing in the bathtub or playing make-believe.

Nathan and I are looking forward to getting away together, just the two of us very soon. We have passed like ships in the night too oft these past many months and we need to get to know each other again. I have gained so much respect for my husband through all of this. He has laid down his life for his family and remained strong throughout it all. He has anchored us and been the best Dad a little girl could ask for. I am so proud to call him mine.

So here we go…and I know God goes with us into this new place. He has carried us and will continue to carry us.

Thank you for celebrating with 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.

26 responses »

  1. Me alegra tanto que hoy puedan estar en casa los seis juntos… Celebro la vida y sus alegrias. Han estado en mi corazon y oraciones todo este tiempo. Desde la distancia un abrazo bien fuerte. Gracias por permitirme ser parte de su trayectoria. Les amo…

  2. Our God is an Awesome God Amey. He will continue to guide you and be there for precious Amey and your precious boys. We never know what challenges life here on earth is going to present us with but we do know our Lord will carry us through them when we can’t carry the load anymore.I am so very happy for your family being together again. I will continue to keep you all in my prayers. May Gods Peace be with you and your family. My Love to all of you, Michelle Calvit

  3. My heart is full, sis! I already know all you said but to read it hear brings me joy. I am so proud of you and Nathan for your strength and sharing. I love you so much!

  4. Wow. That us so beautifully written. God bless you all. So glad that all is looking up for all if you.

    Sent from my iPhone

  5. tears in my eyes when i read your words about nathan… i pray for that get-a-way sooner than later.

    you guys are all amazing. what a beautiful family. love, strength, and grace to you. great job amey, you are and have always been an incredible mama.

  6. What a precious family you have. I am so happy for all of you. I feel like I’ve known yall for years. I love the wonderful letter you just wrote to us. I hope you know how blessed you are to have such a beautiful family. God be with you all & I pray Phoebe now has a cancer-free life! Much love, Elaine

  7. Good recap of the last 14 months. I’m glad you put it down in words. As I read I felt the very same emotions that I felt at the time you all went through this. I remember the urgent emails from your father in law requesting prayer and how I would go into a fast and just pray for you all and Phoebe. I am glad Phoebe made it through this whole ordeal and will be continuing to pray for her and your family.

    I am joyful that Phoebe is feeling better and will remember to pray for Deacon to feel special and find security.

    Blessings

  8. WOW! It is hard to believe this part of the journey has come to a close- new chapters, new dreams, new miracles unfolding. Thank you for sharing and for allowing us to have a front row seat during the enitre unfolding of the story!! We have come to love and think of your family often!!
    With MUCH Love from Washington State!! Cheri Perry, Family & Friends!

  9. Oh my Goodness, I am so happy for all of you. It has been a journey and you do have a family to be proud of. Praying Pheobe continues to gain strength (Thank you, Lord Jesus) and that you all can settle down in your new home and move forward with great anticipation of a HOPE for tomorrow. We are traveling to East Texas (Livingston) the end of the month for my Family Reunion. I love East Texas in the Spring and looking forward to the trip. God Bless you All. Mariilyn

  10. I remember those hourly updates when she was fighting in ICU and praying with her that her little hands and feet would heal. God is good and I am so thankful he has brought Phoebe and your family through this difficult season of life!

  11. Thank you sooooo much Amey for opening your heart & sharing your soulful moments with us! I feel so much love & so much of GODS grace each time I read one of your entries …. in my mind & heart I have held EACH one of you when needed. Today, I share your joy …. love & blessings to you all & I pray this summer is your BEST EVER (till next of course)!

  12. Amey, I have faithfully read each blog article, some causing me to pray fearfully, others causing prayers of thanksgiving and praise. I want to encourage you in your writing journey. I think you likely know this, but I want to tell you my take on it. You NEED to write; it is cathartic for you. You are an incredible writer. When you have books to sell, I want to buy them. You are an amazing writer. OK, now I am getting redundant, but your love for God shines through in everything you write. May God continue to bless you and your family in every way. We love you all from Mexico.

  13. Having walked through this journey with you in prayer, I feel so much of those same emotions as I read this post (not to any extent as you, I know), but my stomache knotted again at the horror and fear of those words “cancer”, “septic shock”, “burns”, “whopping cough” etc. The many times tears ran down my cheeks while I begged God to spare you this. How long could a family stand under that kind of weight? But God was faithful, you guys did it, Phoebe is just beautiful and I only have tears of joy today. Your journey has encouraged me and my family in incredible ways. Thank you for allowing us to walk behind you all through it. Prayers continuing…

  14. I am so happy for your family – as “they” say, today is the first day of the rest of your life (lives)!

  15. Praising God so much! This is the letter I/we have all been waiting for! Completely celebrating with you in every way. Getting to know your family these past 14 months through all your messages has been the greatest blessing ever! You don’t know me, but I know all of you and have grown to love each of you! Thank you for letting me be a part of your journey, no matter how long and hard it has been, CELEBRATE!!!

  16. 1. Rejoicing with you on how far Phoebe has come! PTL!
    2. Will continue to wear my Phoebe’s Prayer Warrior bracelet…probably until it wears out…and then it will go into my “memory box” that will be with me all the days of my life. It reminds me to pray…not just for Phoebe but also for many others needing prayer.
    3. Like Betty said above, please write books. I will buy each one. I’ve treasured listening to your heart, Amey, throughout this journey.
    4. I’m so happy to be a part of The Family of God…especially knowing that I’ll be spending Eternity with you all. We’re gonna have a blast! LOL
    5. I will continue to pray for y’all and am looking forward to reading your blog over the coming years as Phoebe and the boys grow up into God-fearing and God-serving adults. What a privilege it has been to get to know and love you all. I feel like we’ve been through a war with you…a precious and horrible war.
    Love and blessings,
    Suzy Finigan

  17. Hi Amey. Thank you again for sharing your family’s story with us. When Phoebe was first diagnosed with cancer, you probably didn’t say, “Our family has cancer”, but that’s really what it became. Everyone in your family was directly affected by this horrible disease. Then you shared with the world, and we all felt your pain, rejoiced with your good tidings and along the way, we prayed every day. You all have been such an inspiration – putting your worries in God’s hands, trusting Him to do what’s right, and your faith to take big leaps where God wanted you to go! I hope you’ll keep writing so we can continue sharing. God bless!

  18. Hi Amey, yes, thank you so much for allowing us to journey with you. Praising God with you. Love the update on your boys and how they are doing. Praying this journey will lead each of your children to a deep, deep, live-long, live-giving relationship with the Lord.

    Praying for sweet days ahead, quiet time for your to be refreshed and to process through this past year. much love to you and yours — Jeannie

    PS you mentioned gymnastics possibility for Averic. I would encourage him to pursue it if at all possible. Such a great sport with many flow overs into other areas of live. Our daughter is a gymnasts and it has been a mighty blessing! lots of hard work but also lots of reward.

  19. Thanks for writing – it’s crazy and amazing to look back over the last 14 months and to remember some of my own feelings as I read the blog. Quite the journey to say the least. Hopefully this next season will be quiet maybe even mundane with regular everyday stuff like cleaning 🙂 I’m so proud of how you and Nathan have walked this road and how you’ve challenged me thousands of miles away. Love to all of you!

  20. WOW, I’m going to go back and re-read this entry. It is SO amazing and so fulfilling to read this entry and know that you are on the ‘other side’ of this crazy battle. Praying for your precious days ahead and knowing that your family will continue to be blessed beyond measure.

  21. Congratulations and blessings for this milestone! May Christ continue to bless Phoebe with complete healing, joy, and faith as she and your family continue to inspire all of us. Blessings of HOPE and peace for all of you too!

  22. PRAISE THE LORD. GREAT IS OUR GOD AND GREATLY TO BE PRAISED.
    THANK YOU BOTH FOR BEING SUCH TESTIMONIES OF FAITH FOR OUR LORD. BLESSINGS AND LOVE TO YOU BOTH AND TO ALL YOUR FAMILY.
    Marilyn from TN

  23. Praising God for His bringing you this far and for all that He has yet to do in, and through, your lives! I so appreciate your sharing your heart and your journey. I have felt so many of the emotions and experiences you have expressed, but you have done it so much more eloquently! I pray for the day that you will be where we are – with a healthy little girl, with a fully functioning immune system, no medications (or at least nothing too serious), running around with her brothers and only worrying about the “normal” challenges in life. We will continue to keep you all in our prayers and especially your precious Phoebe.

  24. PRAISE GOD!!!! Thank you for sharing Amey- so good to hear from you and your family. Your testimony is incredible, thank you for being real. miss you and love y’all lots- Kat

    ________________________________

  25. Praising GOD that you are here a beautiful intact family still being transparent so that all can see JESUS through you. Praising GOD for Pheobe and for her full recovery, asking that it is truly so. Expecting great things for all of you. Praising GOD for your sweet boys who have been warriors alongside their sister. Lovely. Praising GOD for your marriage that has been through the testing fire. Praising GOD that though we’ve never met, we love you so because of the power of prayer we have fought with you and for you. Praising GOD that it is ‘yes and amen’ for the Fair Family. Thank you for the update and know that you remain prayed for. We love you.

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