And other days, Joy is palpable…

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Phoebe is doing great. She has handled this last round of chemo very well so far and her counts were still up at her clinic visit this morning.

One of the most exciting things going on with this sweet girl right now, is that she is fast on her way to WALKING again! Phoebe LOVES her physical therapist and has been so motivated to get back on her feet. Today she took four steps from her stool to the couch bearing her own weight which is just incredible for her, and was absolutely stunning to witness. When she finally receives her orthotics I think she will be walking in no time. She has had some trouble bending her knees in order to sit back down because her muscles are so tight from lack of use. Please pray for that as she moves forward and works hard to get back on her feet.

Here she is with her big brothers helping her during a recent session:

Nathan’s Dad has been with us for the past couple of weeks and he has been a huge help. Phoebe and her Grandad go for long drives when she is feeling emotional and that usually calms her down. He has also done his time at the roller rink with the boys, taken them to the movies and played more than his fair share of board games. This Texas summer heat is obnoxious and I am thankful to have the extra help to keep the boys from bouncing off the walls. I think we will all be glad to get back to the country one of these days so that the boys will have some useful work to put their hands to on the farm. Last year their lives were full of farm chores; collecting eggs, milking goats and cleaning the goat dairy, taking care of pigs, slaughtering chickens and turkeys, harvesting vegetables and working the farm stand drop-off sight. They are ready to get to back to work and I think we are too.

I always joke that Nathan is a frustrated farmer. He lives, eats and breathes aquaponics, ie: the simultaneous raising of fish and vegetables in a  closed system. He has a small system set up in our back yard and we are enjoying the tomatoes, peppers and cucumbers it has produced lately, but he is so ready to expand and set up a large scale system. We are itching for dirt of our own, soil to amend and prep, a garden…chickens and fresh eggs etc. We are praying about our next step and if and when God would have us move while Phoebe is in treatment. Mostly, we are realizing that this could be a very long road, and that we need roots and our kids needs roots and community and support beyond what is possible here in Dallas. Plese pray for us, that God would give us discernment. It’s always said that one should never make big decisions in the midst of crisis, but that is a luxury we do not have.

On August 13th Phoebe will have her next MRI and she will also receive her spinal chemotherapy. Three days later she will turn 3! On August 21st she will go in-patient and begin this next round of chemotherapy. She will be receiving some of the harsher medicines this round so please pray for her.

I am feeling better today than when I last poured out my heart on here. Of course that all changes depending on the day. Such is life going through cancer treatment. I am cherishing Phoebe’s good days and trying to live in the moment. I am leraning that living completely in the moment is a discipline that must be learned. I have to be very purposeful to bring my thoughts captive or else I can be carried away on a wave of grief at any moment. I can get way ahead of God and imagine a future without the grace to bear it all. I have to “cast down foolish imaginations” and be fully present. This is hard work. Some days I fail miserably and am easily overwhelmed. Other days, joy is palpable.

Thank you all for your words of encouragement, words of permission, prayers, love…

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.

10 responses »

  1. I love reading about the good days your family is enjoying. I know it is so good for a mother’s heart. I will certainly be praying for sweet Phoebe to regain her full walking skills very soon. She will definitely be a happy girl getting around independently. Thank you for this encouraging post. I know our God will provide for her needs. Your family is in my prayers every day. Love to all, Pat Williams, a grandmother in Tuscaloosa

  2. Praying for you dear~glad to hear the fantastic news that sweet Phoebe is beginning to walk. God holds you close, His grace is with you.

  3. Amey, God bless you for your honesty and openness during this crisis. I don’t know how many would have the strength to be so open about both the horrible hard times and the moments of joy. You are truly an inspiration to many! We pray that your family will receive the guidance to make those hard decisions about relocating “farmwards” and getting on with life. We love you guys and pray that your life will gain more normalcy as the days go by.

  4. Hooray for Phoebe that she is beginning to walk again! Hugs and love to all of you as you continue to be brave soldiers during this challenging time. Although it’s hard to see right now, remember, whenever God closes a door, he opens a window and I just know he’s got big, big plans for you and your family. I continue to pray for all of you ever day. Thank you for the update – I was just wondering earlier today how all of you are doing.

  5. hooray for Mommy and Mommy’s love for the living God that enables you to love your living children and spill that love over into each one of their lives.

  6. I am so glad to hear that Phoebe is doing better with these chemo treatments, and she’s trying to walk! That is awesome.

    Always praying for you guys and will include discernment for decisions.

    Blessings,
    <

  7. Amey, I’m praying for your discernment – and for your yearning to lay down roots as a family. You are the most real example of a Christian mom that is striving to live in the moment. My mom (I have 8 brothers and sisters) always told me to “mortify my imagination” – or to offer it up in the name of the Lord. I find that so hard as a mom. And then I hear your words, and realize that you do that every moment of every day. Thank you for letting me into your life, and for sharing your story. You truly do bring me closer to God. Daily.

  8. Yay for walking soon! She continues to fight so hard… you all do. and yay for granddad! You have such a wonderful family… all of them! Praying for discernment about the future and the daily happenings… the ups and the downs. May the good days “grow in abundance.” Love to all of you!

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