Update (Jan. 19th, 2012)

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7:03 pm: Quick update before we leave the hospital for the night. I am unable to post from the house yet as our wifi is not hooked up.

Today was a busy day for Phoebe. She had a night of decent sleep without terrible tummy pain for the first time in several days and that was nice. Her tummy girth has measured smaller today so I’m hoping this is a trend that continues.
Today she had her ECG test and hearing test to get a baseline for her chemotherapy so they can check those levels as she goes through her treatment. Tomorrow she will have surgery to place her port in her chest. Please pray she does well with the anesthesia and that the surgery goes well.

On Monday she will have another test called a Sisternogram to put dye into her spinal fluid and make sure that it travels to her brain and back again so that they know for certain that the chemo medicines will travel to the correct areas.

They are still watching her fever and have added Tylenol as an every four hour part of her work up so that we can stay on top of it. The 24th is still the tentative start date for chemotherapy providing that the Oncologist is pleased with her sodium situation and the fever is at least controlled. He is not opposed to waiting a few more days if that is not the case.

Mom is here tonight to stay with Miss Phoebe and Nathan and I will stay together with the boys for the first time in our new rent house. Praying tonight that Phoebe does well tomorrow in surgery. Today was a good day. Thank you all for continuing on the journey with us.

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.

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