Home Again, Home Again..

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Phoebe and I (Amey) came home late this afternoon. We are still not sure what caused her sustained fever since all of her labs were good and she had no other symptoms. Unfortunately, whenever Phoebe has a fever or her body seems to be fighting off an infection we have to triple dose her steroids to give her extra cortisol support or else she could crash and become unconscious or unresponsive. So, the yucky side-effects of the steroids have begun; lots of weeping, ultra-sensitivity, tantrums, frustration, and a voracious appetite. They also interfere with her sleep, so we are in for a long night.

Otherwise, she has been pretty content at the hospital. She rolled onto D6 (the oncology floor) and was given a superstar’s welcome by all of her old nurses and hospital staff. She ate up all the attention and proudly showed off her new hair and eyelashes. She was extra excited when her Mammaw showed up with tortilla chips and snuggles and I think the whole stay felt like a fun overnight visit to see lots of folks she knows and loves. She’s not even phased by the hospital and that just has to be God’s grace in her life.

We spent the morning in the playroom making crafts and waiting to get the okay to go home and we were on the road back to East Texas around 4:30. Please pray that these steroids will filter out quickly and give her a break, poor Phoebes is a bit of a wreck tonight.

Thank you for praying for us and thinking of us!

Amey 

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.

12 responses »

    • Hey Brenda,
      Thanks for contacting us. This is a blog and we do not maintain any kind of mailing list or keep people’s emails. If you are receiving email updates it is because you have opted to “follow” our blog with your WordPress account or you have signed up for Caring Bridge updates.

      On WordPress, you would just go into ‘blogs I follow” and unfollow Phoebe’s page. On Caring Bridge, I believe it’s similar. I know how annoying it can be to get unwanted emails. Let me know if you can’t figure it out and I will look into it further!

      Nathan Fair

  1. Praying that the steroids leave quickly and let Phoebe feel back to 100% very soon! Will be praying that you all can have a restfull night including Phoebe!
    Take care and sounds like Phoebe had a great time visiting her ol’ friends!
    {{HUGS}}
    Peggy

  2. Fantastic news! Thank you, GOD for letting Phoebe go home to her family! Bless you, Phoebe and the rest of your precious family! God is with you all the way! Prayers for a peaceful night and lots of rest for all of you!

  3. Echoing the prayers that the steroids leave fast. May God’s angels manage to sing Phoebe to sleep (with praise for God’s goodness), so y’all can rest too!

  4. Thank you Amey- for sharing this journey and for your Christian example!

    Cheri Perry

    You can get everything in life you want if you just help enough other people get what they want. -Zig Ziglar

  5. Praying with Bill B for complete restoration and healing for Miss Phoebe. Praying peace over her steroid hyped body. . ..and your family.

    PS we love, love her pretty eye lashes! She’s given us a new appreciate of something we’ve taken for granted. 🙂

  6. Praying for her of course.
    Maybe she just needed to be an inspiration for someone she saw at the hospital or someone reading your post. She and her family are definitely someone to receive inspiration from.

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