A Nice Day (Feb. 16th, 2012)

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9:09 pm:

It was a nice day. In the hour before I dawn I crept into the boys’ room and woke Benjamin up to come to the hospital with me. I had to be here before 7 am to sign the release for Phoebe’s lumbar puncture/ Intrathecal chemotherapy treatment this morning.

It was fun riding to the hospital in the dark and spending time together just the two of us. When we arrived my Mom was asleep in Phoebe’s bed with her arms around her and Phoebe was sitting up just jabbering away. She said “Mommy! Mommy! Ben” when we walked in. I love that.

Apparently the Phoebster had been up all night, playing with toys, coloring, chatting and being generally enthusiastic about life. This is what happens when she gets a stress dose of her steroids. I thought it was really funny this morning, but only because I hadn’t spent the night with her and she was being so cute! Whenever Phoebe’s body is about to experience something stressful, she has to have a “stress dose” of cortisol because her pituitary gland no longer regulates that for her. These are the shots that I will have to administer at home should she have a sudden onset of high stress that her body can’t deal with without the release of cortisol. The doctors have said that anything from an injury to an intense emotional upset could bring it on. This is the issue that I feel most nervous about when I think about bringing her home.

Her lumbar puncture went well and she spent the rest of the morning sitting up, talking to Benjamin, throwing a ball to her Great-Grandparents, talking and playing. She looks so good! She got some more IV chemo in the afternoon and slept the rest of the afternoon while I had some time to visit with my Mom. This evening she is on the 8 hour chemo drip of the drug that could effect her hearing. We are considering giving her an additional drug that sometimes helps ward off hearing loss, but that makes people feel extremely bad and vomit frequently. We have gone back and forth on this one and still feel conflicted. Please pray for us about that decision.

This morning while Phoebe and I were waiting for the anesthesiologist to come for her treatment, we were sitting in the Oncology clinic looking out over the Dallas skyline. Phoebe was in my lap, her fuzzy little head underneath my chin while she rubbed her purple blanket between her fingers. The theme song from the Movie “The Breakfast Club” was playing faintly over the speaker and it brought back a flood of memories from junior high. I looked out at Reunion Tower, the big ball shaped building in downtown Dallas and recalled my sweet sixteen birthday dinner there with my parents when I was in high school.

I was trying to imagine sixteen year old me and thinking “It never even occurred to me that I would have to fight for my child’s life someday.” I was blissfully ignorant of all that life would require of me. But now I have to be a real grown up and weigh options about potentially life-changing medicines for my daughter. I have to consider ethics on a level that I have never contemplated and learn how to navigate the world of cancer with a new medical vocabulary.

I was struck by the way the seasons of my life were intersecting at that moment in the clinic this morning. Life is a bit surreal these days. I’m glad we get to do life one day at a time because knowing this battle was ahead a few months ago would have potentially crushed me. I’m thankful that God gives us enough for today and that His mercies are new every morning.
Praising Him for a fun day with my sweet girl and how special the little things have become..watching her throw a ball and giggle or put stickers all over her arms or seeing her feel well enough to eat spaghetti. It was a nice day…

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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