Parents Meeting (Jan. 21st, 2012)


9:45 am: This morning Nathan and I are going to a “coffee time” here at the hospital to meet other parents with children fighting cancer. It is supposed to be an informational time as well as a social opportunity to connect with others who are on this same journey. I look forward to hearing from the other parents and making new friendships.

Phoebe was not much in a sleeping mood last night. Apparently she got all rested up yesterday after her surgery, so we did a lot of snacking throughout the night and some visiting and talking in between my failed attempts to get some shut eye. It’s a good thing she’s so sweet, it makes it hard to be grouchy even when she’s making me feed her applesauce at 3 am.

This morning Phoebe is taking a bath in a bathtub for the first time in 21 days! Now that she is not hooked up to a thousand wires and tubes, she has more freedom. She is not enjoying her bath as much as usual since her tummy is still so bloated. She has had some tummy relief in the past days, but it seems to be back again today. Please continue to pray that her body would release all of that air. Poor baby is so distended and uncomfortable.

Not much on the agenda for today, Physical and Occupational therapy and taking a ride around in the wagon. Enjoying these days before chemo starts and hoping that we see some tummy relief soon. Thank you all for checking in. I will update again this evening.

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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