Coming Home Tomorrow and Infection

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Phoebe is being released from the hospital tomorrow. She has done pretty well with this round of chemo, but it was discovered that she has unrinary tract infection. I am glad they finally figured out what was bothering her.

She had complained that her bottom was hurting for about 2 weeks but we could never get a definitive culture. She has been on IV antibiotics for 2 days and she will come home on IV antibiotics for the first time. She will come home with her port still accessed and a home-health nurse will come each day for the next three days to administer the broad-spectrum antibiotics. Apparently this strain of infection is very resistant to antibiotics so she will receive a few different types in order to knock it out.

Please pray that the antibiotics will work quickly and that her counts don’t get squashed while the infection persists. She needs those white cells for a few more days!

Thank you all for praying for us and thinking of us. It will be nice to be together again after a week apart.

-Amey

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Phoebe playing Peekaboo with other patients in the cancer floor playroom!

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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.

7 responses »

  1. Praying for you dear Phoebe! God’s precious, special child. 🙂

    I just had a though about Phoebe’s eating issues with the constant hunger. Now, you might already be doing this or have thought of it but I would like to share…Is it possible to figure out just how many calories Phoebe needs for a 24 hr period and the divide the food intake into portions depending on how often she cries for food? That way she will not take in more calories then needed but it still does mean that you need to be getting up all hours of the night until she is either able to control this or feed herself. I’m sure a dietitian could help with mixing up the different food groups so she does get satisfaction at each eating.

    Just a thought. 🙂

    Blessings.

  2. Always in my thoughts and prayers. Hope the infection goes away quickly so she’ll feel good when she’s home. God bless all of you xoxoxo

  3. Phoebe, glad you get to go home today 🙂 I love seeing you play with your friends at the hospital. You are a super special young gal!! Have an awesome day at home with your family! Praying your numbers stay high until that pesky infection goes away!
    Blessings,
    Peggy

  4. Seeing little Miss Phoebe playing warmed my heart ! As does her smiling face ! Love, Gerry

    ________________________________

  5. As I look at the 2nd photo, I notice those sweet baby hands. Give them an extra kiss from the Swanson Family tonight. We are praying for complete healing for Sweet Phoebe.

    With Kindness,
    The Swanson Family

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