A Unit Of Blood

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Just wanted to update that Phoebe is doing better. Her hemoglobin was at an all-time low of 6 and her symptoms seem to be primarily related to severe anemia. She received a blood transusion this afternoon and was transfered to the oncology floor where she continued to show improvement and perk up.

She still has not had an appetite, but Nathan said she is obviously feeling much better. Unfortunately, she will have to remain in-patient until her blood counts start to come up, so it could be a few days before she is allowed to come home.

Nathan was able to take a good long nap with her late this morning and a dear friend brought him breakfast and coffee. Thank you all for lifting us up today and in the wee small hours. Thankfully this time it looks like it was just a chemo-related issue and not illness.

~Amey

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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.

13 responses »

  1. Praying for Phoebe to bounce back quickly – she’s such a trouper! Praying too for the rest of the family as you deal with all the usual disruptions. Hang in there Girl….just hang on to Jesus!

  2. Such a brave little girl, and a brave Mommy and Daddy!! Praising God with you that Phoebe is feeling better today and praying she continues to get stronger and stronger each day!! God bless you all!!!

  3. “Sleep sound in Jesus, my baby, my dear….
    Angels are watching, they keep you so near!
    Know for his sake. you’ll be safe for the night.
    Sleep sound in Jesus, till mo…ooorning is light.”
    Chuck Girard, Love Song

  4. Amazing little girl you have there. That smile (even though she isn’t feeling well) says it all.
    Praying you are back home soon. Sunny

  5. Phoebe looks really good. I’ve been away dealing with similar issues with my health. Those RBC’s are so very important. Mine kept bottoming out & had many, many transfusions. I developed MDS, secondary………….not so good! I’ve been more a spectator,…………….watching & praying. There is so much power in praying. I feel so blessed to still be here, watching my kids grow into responsible teenagers.
    It’s so near to the end of Phoebe’s treatments and she is just ‘radiant’. All of our prayers to you and your beautiful family.
    Peace be with you.
    Anita

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