Good Day (Jan. 29th, 2012)

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9:10 am:

Phoebe had a good day. Her sodium is coming down and is the mid 140″s now where it needs to be. Please pray that it will stay there. She did great with her physical and occupational therapy, walked 2 loops around the Oncology floor and played games that worked on her fine motor skills.

Meanwhile, I was doing laundry at home, getting the boys room organized, hanging up the rest of Phoebe’s clothes in her closet and cleaning up the house. I enjoyed feeling purposeful and doing the little tasks that often can seem burdensome in normal life, now those things feel like a blessing.

Early this evening Nathan and I took to the boys to a favorite restaurant of mine when I was a child called “The Magic Time Machine”. At the “Magic Time Machine” the waitstaff dress as cartoon characters, fairytale characters or famous toys and the booths are anything from Cinderella’s pumpkin to a hollowed out school bus, and the salad bar sits on an old convertible car. The boys loved it when their drink came bubbling and gurgling from the dry ice that was added to it. They had a great time and it was fun to see them enjoy themselves so much. It was nice for the five of us to be out together.

When we got to the hospital, Phoebe was sitting up happily in her bed and said “Mommy! Daddy!” excitedly. That is the best feeling in the world. Her face is swollen from the constant fluids she’s being given, but otherwise she looks very good. Soon after we arrived Phoebe’s dinner came and she ate and ate like a champ, which is always good to see because it lets me gauge how well she’s feeling. We had a sweet time together and said goodbye to Nathan’s parents who have been here helping. Nathan stays with Phoebe tonight so I can school the boys tomorrow and then we’ll trade places.

So far, so good with chemotherapy. I know it gets tougher, but I’m pleased with how Phoebe is responding so far. Maybe she will have a stomach of steel after all!

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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