We’re Still Here

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We’re still here…Phoebe is still having severe diarhea, tummy pain and her bottom hurts quite a bit. We are giving her Ativan, Benadryl (to stop the itching) and Morphine to alleviate her discomfort but there is no real concensus as to what is causing these issues.

The Potassium seems like the obvious culprit to me, but I am told it shouldn’t cause this to this degree. The diarhea of course is messing with her fluid balance and sodium and electrolyte levels, so we are chasing sodiums and trying to keep her hydrated as best we can.

Her ANC is coming up slowly, and that’s good because it means that we should start to see some healing and recovery and hopefully her bowel issues will improve. Thank you for praying for our girl…

-Amey

Phoebe snuggles with her Grammy

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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.

8 responses »

  1. Amey, it makes me so sad to see Phoebe looking so ill. Normall, even with not feeling great, she still has a sparkle in her eyes. I am praying constantly for her. I would dearly love to see our Heavenly Father perform a great miracle, and heal her body completely. I know He is capable, and that is my prayer for Phoebe, if it be His will.

    Mostly, I pray for comfort for her and the will to keep fighting. And for you and your family, I pray that you will continue to trust the Lord in all ways and to rest in His comfort. You are not alone in this battle and your prayer warriors are with you, always.

    Blessings on you, your family and little Miss Phoebe. oxox

  2. Oh you poor, sweet girl! Praying and praying for you Phoebe.
    Exodus 23:25
    But you shall serve the LORD your God,
    and He will bless your bread and your water;
    and I will remove sickness from your midst.

  3. Just want you to know that we’re still praying here. God knows just how to interpret our prayers into what you need. Our church also calls Phoebe’s name out in prayer every service.

  4. Sweet sweet baby girl…God loves you and is holding you tight.
    Prayers continue…wearing my Phoebe’s Prayer Warrior bracelet 24/7.
    Love,
    Suzy

  5. Praying SO much for your precious girl. Every day, many times a day. I pray for relief of her symptoms and for immediate improvement regarding her current status. I pray for complete healing over time and for perseverance and renewed strength for your entire family and network of caregivers.

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