Wow, What a Day!

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I am happily exhausted from a fabulous day with Phoebe at HOME! It was a close call when I had to take her in to the ER at 4:30 am for a fever, but we made it out around 11:30 after her blood levels came back good, sodium was good, fever went down and she got an antibiotic just to be safe. We left the ER and passed a window overlooking a flower garden and she gasped “flowers!” like it was the first time she had ever seen one. She is seeing the world anew and it is beautiful.

The joy of having all of our children under the same roof  is immense. It warms me every time I walk into a room and see all four of those little people together. The boys huddled around her all day, just soaking her up, we all did. We had a few little blips with the feeding tube and she did vomit once, which sent us into a panic over her cortisol levels and whether or not we needed to give her an extra dose. We are still unsure about the feeding tube placement, oh me.

We are juggling SEVENTEEN medications as well as her ddavp shots and breathing and respiratory treatments. To say that it’s a full time job is understatement. WOW. Even now, as I write this at 11:30 pm, our alarms are set for 1 am, 2 am, 5 am and 6 am to give meds, change out the formula feeds and check urine output. And it is all so very worth it! To watch Phoebe sit on the living room floor with her toys and blankets and brothers all around is priceless. This day has been a gift! Her spirits are so high, smiles are abundant and silliness abounds!

God’s grace is amazing in what we are able to do right now on zero sleep and with an intense and nerve-wracking med-schedule. Phoebe is GREAT motivation for all this craziness, and having her here is more wonderful than I can put into words. Thank you all for praying her home!

~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.

17 responses »

  1. We are excited about the precious pictures! Thank you and enjoy the Phoebster at home! We are on the watch for a better night this time without a ride to the hospital! God is great !

  2. I think one of the sweetest things about our Lord is He’s not only our Savior, He’s our Sustainer! Praying the Lord makes “loaves and fishes” of your miniscule amount of sleep and that precious Phoebe has a wonderful day tomorrow without any hitches and with lots of new discoveries! Thank you for reminding us that our blessings sometimes come in snippets and minutes.
    Continued prayers from Managua…

  3. Love seeing her outside with her happy Mama! So thankful to God that she is home for the weekend. Peace and fun to you all.

  4. Tears of joy as I read your post this morning, Amey! Thank you for including keeping us posted as one of those many items on your list to do! Praying that God continues to give you strength and rest as needed these next couple of days while Phoebe is at home 🙂
    I am sure the boys are a HUGE help! WAY TO GO, Deacon, Averie, and Ben!!

    Blessings,
    Peggy & Mike

  5. I’m so glad you she got to go home for the weekend.God is so good and faithful. Thank you for sharing her story. i love reading whats going on with Phoebe every day. I pray for your whole family often. Try and get some rest. Praying from Hong Kong.

  6. So thriled she is home with you all! Praying for SO many more days during the treatment process where she gets a break from the hospital to be surrounded by love and the comforts of home!

  7. So, So happy! There are joyful tears coming down my face this morning as I read. So thankful that you get to have this time to be all together in your home and to enjoy being outside with Phoebe. Will pray for the rest of the time to go smoothly. I want to thank you too for taking the time to post each day. It is something I look forward to each day – to know how to pray and in these days, to celebrate with you. Love you!

    Steph

  8. Crayons and coonskin caps and sunshine and Sadie. All things that say to Phoebe, “See? Everything’s going to be ok.” Praying for all of you right.this.minute.

    I’m so glad you chose to be really involved in this church while you were here. So many YWAM-ers don’t do that. But because you did, you have a body of Christ here who can pray with Ben and Averic and Deacon and Nathan and Amey and Phoebe’s faces in their mind, taking blue eyes and freckles and the memory of little voices in our hearts when we go to the Father.

    I know there are thousands of people praying for you who have never met you, and may never, but I am thankful that I am not among those. Give the boys a hug from Ms Judy.

  9. I have been praying for Phoebe and your family. I am so glad that your whole family is at home together!

  10. Will continue in prayer for you guys. I was soooo overjoyed to see these posts as I logged on after a few days away from the computer! Yea God!! Prayers of thanksgiving going up from Armenia!!

    Blessings ~ Kristen

  11. I am so excited to hear that Phoebelicious is home! I have been following her journey thru my friend Becky Banks. I am so happy to pray for your sweet family. Sending love & prayers from Knoxville TN.

  12. So happy for all of you. Gave praise at 2 different churches for Ms Phoebe this morning. Everyone asks about her all the time. They all are continuing to Praise and Pray to our most wonderful creator for all His many blessings.

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