Phoebe Update

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Sometimes I log on to here in the evening and I’m wordless. It’s times like these when you might not hear from me for a day or two or even three. My silence often means there is no new news, or we’re worn out from having fun, but other times it means I’m simply numb, worn out, emotionally blank. This is the part of the marathon where my “muscles” are growing tired and the finish line seems a million miles away and throwing in the towel sounds really good. But this isn’t an optional race, there is no choice but to keep putting one foot in front of the other.

Right now, one foot in front of the other means navigating Phoebe’s mood swings from the steroids, fetching applesauce or macaroni and cheese at 3 am because of her hunger from the hydrocortisone, taking unexpected trips to the hospital because her ng tube got pulled out or spending several hours in the ER just to be sure her excessive sleepiness isn’t a bout of wacky electrolytes. It’s exhausting. Having Phoebe home is a thousand times better than having her at the hospital, but it is demanding. And it is at the end of these days that I come to write and find that I have nothing left.

All that aside, Phoebe is doing great. We have been out several places with her since her counts have been coming back. She was a big hit at the grocery store and several people stopped to talk with her which she loved. Tonight we went out to eat and she pulled out her ng tube just as we arrived at the restaurant so she got to be “untethered” for a while which is always nice. As we drove home, I looked back at her reflection in the rearview mirror without a tube on her face, completely free from any type of medical device and was overcome with gratitude. Just 2 months ago she was completely swollen, blistered and intubated in the ICU with several different IV lines in her body fighting septic shock and tonight she was riding down the road in her carseat with nary a tube. God has taken such good care of her.

I see her making improvements in her strength every few days. It is slow going, but today when we put her on her tummy she held herself up on her arms for longer than she ever has, and she held herself in a crawl position without freaking out like she tends to. She is also starting to scoot herself across the bed when she wants something that is out of reach which is new.

Phoebe has not lost any ability, walking or otherwise, that she can not completely recover. Sometimes people ask if she will ever walk again and I forget that I might not have communicated that. Yes, Phoebe will be able to walk again with agressive physical therapy and we are setting up in-home therapy for her during the times she is home. I am also told that she will see an ‘Orthotist’ (sp?) who will take a mold of her legs to create cast-like braces for her to wear in order to correct her foot-drop and get her muscles stretched out correctly. She has a lot of work ahead of her, but her spirit is so strong and her motivation so inspiring!

Thursday is MRI day, and we appreciate your prayers! Here’s Phoebe and her Daddy tonight at bedtime…..

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.

25 responses »

  1. Praying daily for all of you. Your sweet thank you post card sits at our kitchen sink…stainless steel appliances don’t work with magnets :(. So, I put it at the sink so I see you all often. Thankful for so many things for you all. Praying on….

  2. Praying for you tonight weary warrior. Hope you and Phoebe and Nathan get some rest. Love and think of you daily.

  3. Sleep well dear Fair family -rest and get strong. For our Lord said we shall come to him when we’re heavy and weary. Pray you can rest in his arms. Give a kiss to the Phoebster! I would love to introduce her to one of our groceries store over here!
    Chris

  4. Love hearing from you but totally understand when you aren’t able to even think about writing! Phoebe has come such a long way and yes its a slow process but God is working through all of you and its amazing following along on your journey. I pray that the MRI comes out clean again and that you all will get a good nights sleep and have the strength to carry on. God bless you Fair family…..you are so very loved by all 🙂

  5. My prayers go out to all of you- such strong amazing parents you are. Wish we were there to help and be there for you all. It sounds like you have an amazing care system and I pray you get the support you need. Phoebe will be forever grateful for being there for you and I pray one day soon, before you know it, there comes a moment when you look back and thank god for all these times and bringing your sweet Phoebe back to a healthy, cancer free lifestyle! Not too good with words but I hope you get it and my heart goes out to you. You inspire me to be a better mom!!

  6. Thank you so much for updating us when you can and when you can’t, take a deep breath and feel the life of the Lord easing into you with peace and comfort and know that we totally understand. I am amazed at your strength and know it must be from God. It’s such a privilege to be able to share this journey with you both and I just wish your prayer warriors could each help in some worldly way. I am continuing to pray for dear Phoebe and specially for all of you for a peaceful day on Thursday with wonderful results! God bless each of you with deep restful sleep when you have time to shut your eyes.

  7. Praying for Phoebe every day, and for all of you as you walk this road with her. May our Heavenly Father hold you all close as you support your sweet girl and as she continues with her treatments.
    God Bless,

    C.O.L.E. Prayer Team – http://www.colesfoundation.org
    Debby Mooney, St. Louis, MO

  8. Appreciate the update. Praying hard for strength & health and for a clear MRI report. “One day at a time”

  9. So happy for y’all that she is home. Sounds like she is a real fighter. My prayers are with y’all every day.

  10. I know the writing must be hard, especially when you are exhausted. And I know you do it for “us” out here. But I think in a few years, you will be so glad you blogged often. It will be like wedding pictures – a lot of trouble and not really important to the process, but the best way to walk back through the journey in later years.

    That said, rest when you can.

  11. Amey, I’ve never gotten the privilage of meeting you, or your sweet family, but know that as a mom, my heart aches for all that you are going through. Thank you for sharing your moments with us and posting pictures, it focuses our prayers. I am friends with Liza Caughlin(we met at the pool last summer;-). Several months ago, she asked us to pray for Phoebe. Our family has been praying for her daily. We are believing God to work MIGHTILY on her behalf! I love to hear her progress and will keep praying for God to restore everything that has been lost for your entire family. I would love to have the chance to meet your family at some point and see your sweet angel in person, but if not, we WILL know you in eternity! Blessings to your family…

  12. GOD bless you all! I have requested prayers from many people. GOD will be with all of you… Prayers for the BEST results when it comes to the MRI. GOD will take care of you…. GOD will CARRY YOU through this journey! What a sweet, adorable, brave little girl you have!

  13. Aim….I love you. So. Much. I read your words and hear your heart, and I know there probably aren’t words really strong enough to convey all the depth of the many things you are going through, feeling, battling, rejoicing in. Exhausting is probably a vast understatement…. and I just want to say how unbelievably proud I am of you and your family for being who you are, for walking through this the way you are walking through this, and though it may not feel like it – for being an unbelievable source of courage & strength to those who are journeying this road with you in prayer. Thank you… I feel a sense of God’s pride in you, that He is so proud of you, filled with such gratitude and honor by your love, your faith, your steadfast perseverance, your hope & trust in Him.

    My heart is challenged daily. Daily…. Your love is astounding, your patience and graciousness humbling, your steadfastness challenging and inspiring. You’re recklessly abandoned to Him whose breath brings forth life…. by His breath…. astounding. May our good, gracious, powerful and great God BREATHE His breath of LIFE over you and over Nathan….over Phoebe, over Benjamin, over Averic, over Deacon, and over ALL those who are both physically and spiritually around you, walking through this by your side, both seen and unseen, known and unknown….. and empower, uplift & strengthen each one with a renewed strength for THIS day, for THIS part of the journey right in front of us today…. and each and every day following, that you would have just what you need from Him and that He will meet the deep needs in each one of you that are unable to be uttered or even recognized. May the Holy Spirit intercede on your behalf and give utterance to the prayers in your hearts. To Him who brings hope, to Him who brings peace, to Him who weeps with us & washes our weary feet, to Him who loves fiercely…. I give praise and thanks with a heart full of gratitude for what He has already done, and for His faithfulness promised you for the road ahead.

    All my love, Amey….

    Love,
    Misty

  14. Continuing to pray everytime I notice my Phoebe Bracelet…which is pretty often ‘cuz it’s on the end of my arm. 🙂 I am especially praying that Amey and Nathan will continue to be given God’s strength and peace. Like you said, God has taken such good care of Phoebe! Of course He has…He loves Phoebe with an everlasting everhuge love. That’s how He rolls!! I’m also especially praying for a GOOD MRI…for an easy procedure and wonderful results!
    Love,
    Suzy

  15. Praying for strength and endurance for you, Amey, and your entire family. God bless all of you. I pray for the MRI to be clean and for God to keep carrying you through this time.

  16. Dear Amey, thanks for the beautiful words about the hard work of love. Your deep appreciation of every small detail of Phoebelicious’ looks, her behavior, and her medical progress creates a marvelous contrast. It contrasts with your eloquent expression of the grinding, excruciating effort which you and Nathan must make hour after hour to monitor, protect and comfort this innocent girl who has suffered so much. You inspire me, even as I learn that a good friend has been diagnosed with throat cancer. What is this terrible, broken world we are born into, where even Jesus wept? Thank God “Jesus lives and so shall I.” God bless you and your family. You will not ever be forgotten!

  17. Amey,
    It is such a long haul and very tiring. Phoebe is doing an amazing job at staying healthy, thanks to our wonderful God.

    I am praying for another girl who has neuroblastoma, she has been fighting for over a year now, she lost her walking ability and is now up and running around. It is work but they do regain strength.

    This is a great picture of Nathan and Phoebe!

    Praying and praying and covering you through these scans. NED, praying for NED!!

  18. AS I read your update I get overwelmed with emotion. First I am so humbled by what you and your husband are going through and believe you will, when this is all complete see God’s plan. By following your updates, I almost feel like Phoebe is my own Granddaughter. This news is soooo good and I am sooo happy for all of you.

  19. Thank you so much for taking the time to write and update–with all that you have going on. As well as updating friends, loved ones and strangers on how your little one is doing, your writing inspires and encourages in ways you probably don’t even know. So many of us think of your girl often and look forward to updates; you are so kind to add this in to your already unbelievably busy schedule. Even though I’ve never met you or your family, I pray for you all and Phoebe, and her story and your writing has greatly inspired me to cherish every minute, and have a grateful heart. Really. Thank you for the gift of sharing your journey. PS the picture is unbelievably precious. 🙂
    Tina

  20. Amey,
    Such a touching and raw post. It definitely must be draining but overwhelming at how you continue to see how God is working for you all and through Phoebe. I work with kiddos as well as a physical therapist in New Port Richey, FL for the Children’s Hospital and glad to hear they are getting home therapy set up for you. I am sure that the orthotist will have some really cool colors and prints for Phoebe to pick from when they make her braces/casts (not sure what they will be doing) but tell her to pick a cool and bright color, as it will match her fun and bright personality that comes through just in all those pictures you post! Much love and prayers for you, the boys, and of course to Phoebe!
    LeAnne 🙂

  21. Amey –
    As you go through your trials beside Phoebe day by day – you are an inspiration to many. You are walking a walk that all persons dread and you are doing so filled with Grace, love, care, with a heart, mind and soul that reaches so many of us reading. I pray for you, your family, and your precious Pheobe. My heart breaks at the pain of a mother with a sick child (I walked a road with our Hannah with heart defects), and my heart rejoices in the faithfulness and healing power of God for your Phoebe. My road was very different and yet your story, your heart, your words aides me in the healing of my heart. I thank you from the depths of my being for your vulnerability, honesty, and giving. Even in the depths of your days of exhaustion and perseverance God is using you, your daughter and family to teach me and others about God’s true qualities. I pray that His Rewards are felt daily for you and pray miraculous blessings and continued renewal of Phoebe’s body.. I wish that no one walked this path – and we know why this is – and you Amey and your family are an example to others of what God asks of us. Thank you for continuing on in the mission of spreading His Word to the lost and struggling.
    Amey – I encourage you and pray for rest, renewal, strength, and peace for you and your husband and family and healing of your Precious Phoebe. Hugs my friend (through Rena).
    Love in Him –
    Rachel

  22. awwww, love that picture of her and nathan. very sweet. glad she is so much better right now, and i hear you about sometimes just putting one foot in front of the other. moms can feel that way even without all the extra demands of a sick child. i’m sure it’s exhausting, but i praise god you have her home, and i’m sure that is helping her a lot in her motivation to get stronger and keep up with her brothers. i often with there was something i could do for you guys. for now we pray and think of you.

  23. Choir prayed last night for you both, your strength & stamina, as well as Phoebe’s MRI. Up praying now for all. Love you guys and love seeing our girl doing so well. She told you she was a miracle and she truly is God’s sweet miracle! It’s easy to say “do not be anxious for anything” from human lip, but fortunately those words were His and not mine. So, rest in His amazing power, assured that there are still no surprises before Him, trusting that He’s given you exactly what you needed as you’ve taken each “step by step” of this journey, and He’ll continue to do so. Through our weakness He is made (revealed) strong…no shame in the weakness of man…only sheds light to the true magnificence & glory only due God. Your walk by faith, feeble, exhausted, spent in human frame only shows the power that dwells within you through His Holy Spirit. Continue to renew your mind…the rest will come. Love you both. Give the boys a hug for us…need to know some good times to come in…the calendar is rapidly clearing of “activities” as we approach summer time. I miss seeing you guys! Big hugs for the day, and I’ll be tuned to my hubby for the report. It’s going to be a glorious day

  24. Love your posts, your heart, your committment to take the time to share this process with us when you don’t have a moment to spare. At least your book will be already written on the other side of this journey! 😉 Sending you a HUGE hug and so much love. Hope you have a great, uneventful day with positive reports on all fronts. Praying. Always.

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