There and Back Again

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Phoebe got to come home last night. The doctors peformed a couple of heart monitoring tests that showed no real issues. They suspect that Phoebe’s kidneys are not absorbing enough Potassium and that the lack of Potassium caused her heart to skip beats and have an abnormal pattern. Kidney issues are part and parcel of heavy chemo regimens and often times patients end up needing dialysis during treatment. We are not to that point yet and praying that we won’t get there. Fortunately the kidney issues usually repair after treatment has ended. She was given Potassium and her DDAVP dose was altered a bit to better balance her fluids. She was also given platelets and 2 blood transfusions.  She is still weaker than usual and not wanting to walk or get up much. This round of chemo really took it out of her.

Today Phoebe is having her labs done in Tyler for the first time. We have been meeting with care providers trying to get her therapies switched over and get services for her here in East Texas. We just had internet turned on today at the house, so I will be able to update more frequently now. We are enjoying our new home although unpacking has been difficult and slow-going with Phoebe’s needs. We have been so blessed by our FBC Lindale family and our YWAM family who spent time, energy and finances to help get our house ready for move-in and who shared the man-power to physically move us. We have truly come home to family and community and we are so humbled and blessed to be so loved and taken care of by the body of Christ.

Thank you for praying for us! I will post pics as we get settled in.

~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.

10 responses »

  1. Praying for Phoebe that her kidneys adjust quickly and there is no need for dialysis. Also praying that you get settled into your new diggs soon. She does look good – bless her little heart. She is a trooper – for sure! Hugs to all, Marilyn

  2. Love these pics of your sweet, Phoebe!!!!! Drove through your cute town on my way to Longview to see our oldest, first child in College. Prayed for Phoebe and all of you as I drove! Give her a big hug from her VA friends!!! 🙂

  3. Awwwww…Phoebe looks so sad in the first picture – you can see she has no energy. I don’t have a lot of energy because of my own health issues, but I’ll send every spare bit I can to you Phoebe – I’ll courier it to you on angel wings so you get it fast.

    Hang in there Amey. It touches my heart that you have so many people helping you get settled into your home. God always brings the right people alongside us when we need them the most. 🙂

    Praying as always for Phoebe’s health and for your entire family as you continue to walk through this journey.

    Hugs!
    Pamela

  4. Like Pamela, I am so touched by how your God-family in East Texas have been caring and loving on you all. God is so good!! I’m lovin’ the pictures of sweet Phoebe. My first thought when I saw the first picture is that she had “bad” cards in her hand from playing some card game. LOL AND, I’m loving her CatNap jammies. I want some jammies just like those, but I kind of doubt that they come in my size. 🙂
    Love to you all…
    Suzy

  5. So glad Phoebe’s hospital stay was a short one and you are back HOME in Lindale. I pray your next few weeks are uneventful and you can get back to the excitement of unpacking!
    Phoebe looks great in the above pictures and I can see the chubby and rosy cheeks prominent on her sweet face. Praying for you always. God is Great ❤

  6. I continue in my prayers for Phoebe and all of you. The wrongness and sheer injustice of this is beyond words when I look at the pictures. Especially the first one. I rejoice in your new home and the Lord’s provision of love and support. Always know so many of us are out there standing in the gap for Phoebe and you.

  7. Praying for strength for Phoebe and that the rest that each of you gets is more than enough.
    We are currently attending to our own family crisis, so of one thing I am sure: God is eternally faithful and holding those we love in the palm of his hand.
    Hugs,
    Staci

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