How it Goes With a Fever

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We were just about to call it a night and head for bed. I checked in on Phoebe and her little cheeks were hot. She roused and told me she was cold. Not good.

Earlier this morning she was feeling nauseous, but I had just administered her Potassium, and that always makes her tummy feel sick. She vomited a couple of times and we immediately gave her stress dose of steroids, thinking her hemoglobin was probably low since she seemed tired.

She perked up as the day went on, but she would tire out easily and take another nap. All of this isn’t too unlikely since she just completed a heavy duty round of chemo, but when I took her temp tonight it was 101.1 which is an instant call to the hospital. We knew, with her other symptoms and her counts heading down that she would be an instant admit, so Nathan called the hospital while I got to work packing.

This routine is so familiar to us now; 4 sets of clothes, 4 pajamas, her Hello Kitty slippers, fuzzy socks, toothbrush and paste, warm hats and hoodies.

I pack Phoebe up while Nathan packs for himself.

I unhook her water bag from her pole, pack the power cord in her bag. Then meds; cold meds with an ice pack, pill bottles, needles, syringes, alcohol swabs. Then her EMLA cream for her port site. I cut a 2 inch square of Press-N-Seal, put a quarter size amount of numbing cream on it and apply it to her port site so she will be ready to have her port accessed when she arrives at the hospital.

I make a pot of coffee for Nathan, pack her diaper bag with Cheerios, granola bars, stickers, beads, books, paper, pens.

I dress her for the hospital, nice and warm with a fresh blanket. Nathan puts her in the car and I run through the house to make sure we haven’t forgotten anything. I hand Nathan his coffee.

I run out to the car with Babycakes (Phoebe’s baby doll) wrapped in a blanket. “Ooooh Babycakes” she coo’s. “She was crying.”

I tell her that Babycakes didn’t want to be left behind. I kiss her hot cheeks. Nathan hugs me a quick goodbye, it’s 2 am. He has to drive an hour and 45 minutes to Dallas.

“Two more rounds” I say…”Just two more rounds”. And off they go.

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.

4 responses »

  1. Hang in there. I know your fingers are raw from “hanging in there”, but don’t let go! You blow me away with your strength and that gives me the strength to keep on praying and fighting the spiritual battle for you. You aren’t alone. We’re all here with you, repeating “just two more rounds!”

  2. Precious Phoebe you are in our prayers! Amey and Nathan….more prayers of comfort and peace as you deal with this. God Grant you HIS peace, today and always 🙂

  3. Praying for Phoebe as well as you and Nathan, Amey. Only two more treatments, Lord Jesus, and we know you are in the middle of all of the details. Be with them all as they address this new crisis and may the Glory of it all be yours.

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