Jun24

Look At Me Now!

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We have had a wonderful week with Phoebe at home! I don’t know how to explain the change I see in her, other than she seems more herself. Her eyes are brighter and she has more energy and it seems like she’s getting her sleep cycle back to normal. In so many ways I can tell she’s feeling better and stronger. Here’s what we’ve been working on this week:

http://youtu.be/s3Yjr—Iuc

I am SO proud of her! Life has felt semi-normal this week and honestly, I needed a break from blogging all the details. It was nice to simply live the moments and have nothing extraordinary to report, other than “she’s doing great!”.  Tuesday marks the beginning of the next round of chemo. This will be our first time doing chemo as out-patient. We will go to the oncology clinic each morning, get a quick chemo “push” through her port and then get sent home with chemotherapy to put through her ng tube. After the week of chemotherapy is complete, she will be home for FOUR WEEKS! This is good, because it means more home time, but the downside is that she is off for four weeks because this particular round of chemo will knock her counts down for longer.

Thank you all for praying for our girl, she is doing so well and we are feeling so blessed.

~Amey

Filed under Uncategorized | 22 Comments

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.

22 responses »

  2. Love seeing that beautiful girl get stronger …. Congratulations to all of you! Praying for a good week and continued progress for sweet Phoebe!

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  3. Awwww, soooo sweet!! She’s doing great and yes, she’ll be walking in no time…prayers and love to all of you! I hope this next round will go smoothly. xoxoxo

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  4. Amey, it was so great to read your post today. The fact that you are able to live “somewhat normally” is the best news! You all need this relief so badly. We continue to pray for Phoebe and your entire family.

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  5. Praise God! Phoebe has been a blessing to so many! I thank God daily for healing her! I have a picture of Phoebe on my computer at work and when asked about her I share her story! And ask others to pray for her. your family is truly loved by millions! God bless you

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  6. Andy,

    Praying u will need not report any further. May this round of miracle be one of God’s overwhelming power surprise everybody.

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  8. Loved seeing this! 🙂 It is so great to see her doing so well and I love hearing her laugh. Could watch this over and over!

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  11. Yay Phoebe, glad to hear you have your girl back. Wish that icky chemo would be over with but praying she can stay strong and fight through it. We love you Phoebe and continue praying and fighting for you! We share your story with so many families and you have touchéd each one of our hearts!

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  12. I have and could continue to watch this over and over with tears of joy and praise to God! Still a distance to go, but look how far you’ve all come!! God is good, so truly good.

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  13. so happy for all of you! The crawling is great for her too cause it reorganizes the brain in every area to crawl. Do they have you doing patterning with her? All that is is her on her back with you moving her legs and arms in a crawl type position. This could speed all that process up. You can also to help with balance swing her in a blanket gently like a hammock. We do lots of these exercises and it is great for the neuro to come back as strong as possible. Love to see this baby girl doing so well Momma. Praying for you all during this next week.

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  14. I am so happy that Phoebe had a great week. Praying that all goes well with this round of chemo Therapy. I have a dear friend who has Multiple Myeloma and she is currently in remission but leaving this week to go for a Stem Cell Transplant which will give her a better chance of remaining in remission. I will be praying for both Phoebe and my Friend. God Bless you all.

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  16. Enjoy every minute. We are excited to see Phoebe Girl getting on with the program! Give all the boys a hug from us.

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  17. Good Morning to Phoebe and Her Beautiful, Supportive Family,
    You are a Blessing in Their Lives
    and You are a Blessing to Each Other.
    I Pray for You Phoebe- Every Day- and for Your Family too.
    You Have Touched My Life in a Very Special Way.
    Have a Happy Day and May the Lord Surround You All With Love.

    Suzanne

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  18. Woo hoo! Loved the video, and so HaPpY that you are having a “normal” week! Love you and give the kiddos a big hug from us all! 😀

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  20. Praise God that you are having a more “normal” life this week! God is still in control and we will
    Continue to pray for Phoebe and the rest of your family!! God bless!

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  21. Good Evening Phoebe – Good to hear You had a a Good and Restful Day Today. Hope Your Day Was Special Because You Sure Are and So is Your Family. Your HAPPY SPIRIT IS Good and I
    WILL KEEP YOU AND YOUR FAMILY IN MY PRAYERS. LOVE YOU PHOEBE – HAVE A HAPPY DAY
    GOOD TO HEAR THE FAMILY IS GETTING THE REST YOU ALL NEED.
    THE LORD BE WITH YOU AND YOUR FAMILY – YOU ARE IN MY PRAYERS EACH DAY.

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