Fourth of July update

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Phoebe had all good news at clinic on Tuesday! Her counts were still hanging in there and her sodium was a perfect 140. Here she is with her Daddy.

Just another day at clinic, waiting to get my port accessed…

Did I mention that I got to go swimming the other day?

This is how I roll when I’m doing my watercolor painting..

Deacon is my favorite painting buddy.

And one last thing before I 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.

20 responses »

  1. Happy 4th of July to you all and we love the little smile in her eyes! You can tell that little sunshine is getting back. Walking and praying with you since the beginning of this year we are so glad that finally Phoebe is been treating home! Bless you and we keep on interceeding.

  2. Love you sweet girl! Looks like you’re all enjoying being all together again…..happy 4th of July to all of you!

  3. I am in awe of the Miracle Girl and our great God!!!!
    Thanks for the 4th of July wish… I love those videos.
    LaNell

  4. Wonderful pictures, good report,,,Thank You Lord so much and please continue to heal Phoebe fair and bless thus whole family with Your Love and provision in all things.

  5. Glad you were able to enjoy a Happy Independence Day! All these pics make my heart smile – really big! 🙂

  6. Beautiful pictures of a sweet sweet family. Phoebe looks great, it looks as if your family is getting to carry out with a somewhat normal life- isn’t that wonderful. We celebrated the fourth from our hospital room here at Cooks. Little Kaden was diagnosed with an auto immune disease called HSP- where his little blood vessels throughout his entire body become so inflamed that they burst and then leak.I don’t know how long we will be here, but I hope that it’s not too much longer (we are going on 2 weeks). We will continue to pray for your family- please pray for ours.

    • Oh my Kasha, so sorry your little guy is going through that! I’m sure it has been a stressful couple of weeks. I will be lifting up your sweet family in prayer. ((hugs))

    • Hi kasha, my name is Stacey. I am a follower of little Phoebe and came upon your comment. My husband has HSP and was diagnosed as a baby. He is now 53 so it is a liveable disease. I will pray for little Kayden to get great news and treatment from the docs. if you have any questions let me know and i can give you some great sites for information. God Bless you all and your family will be in our prayers.

  7. I can see you had a happy celebration–and that you are having one daily. Thanking God for his blessings.

  8. Praying everyday for you all Fair family. Phoebe you are looking great. Glad to hear that your clinic visit went great. Hope you all had a great 4th of July. God Bless.

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