Quick Update

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Just a quick post before I turn in for the night…

Phoebe and I had a great day together, she was awake most of the night and she kept me on my toes playing ball, putting her jewelry on, coloring, and watching Backyardiagans. She spoke so much more last night than I have heard her yet. It was awesome. I didn’t even mind that I only got 1 hour of sleep, we were having so much fun!

When morning came Phoebe decided it was time to get some shut eye, and there I was..still awake with the nurse and the day just getting started. Such is life with Phoebe the nocturnal. Nathan came up for Phoebe duty tonight and we had dinner together before I went home. Nathan’s Dad is here to help out this week which is a blessing for all of us.

Her PICC line was removed today, so she is back to just having her port which is nice. Just 2 weeks ago she had lines in both hands and feet and a central veinous line in her groin. I am so thankful for where we find ourselves today! Our goals for going home are: successful ng tube feedings, breathing well and oxygenating well, and the biggie; sodium. Right now she is having a lot of sodium fluctuation which she can’t do if we are going to take her home. She needs to be on a predictable 12 hour schedule without swinging between high and low sodiums. Please pray for all of the above.

Thanks ya’ll for continuing to stand with us through it all.

~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.

10 responses »

  1. I love all the pictures and hearing of her improvement each day! You are all my heros 🙂
    Praying for continuing to heal so she can go home. Such a beautiful little girl, she always looks so cute.

  2. Oh how marvelous, oh how wonderful and my song shall ever be, oh how marvelous, oh how wonderful is my Savior’s LOVE for me! Our God is an awesome God! He will never leave or forsake us! All the way my Savior leads me….and on and on – so much to praise Him for, even in the midst of the storm! I hope the wisdom we have all learned as we pray this journey with you opens our eyes to everything large or small that He does for us. It is such a joy to hear about Phoebe becoming Phoebe again. I’m glad you are more rested and y’all have been able to regain your balance after the roller coaster ride you’ve been on since the first of the year – love the image of the all night parties, they are so worth it!! Love y’all!

  3. She looks so much more alert and like herself. Great photo of her and her Daddy!!! Glad for such a good day. “Praise the Lord the king of heaven, who like me His praise should bring. Ransomed, healed, restored, forgiven…” Praying on…

  4. So glad to see Phoebe’s improvements. May God bless you and keep you. Prayers to your entire Phoebelicious
    family.

  5. Phoebe looks absolutely beautiful!~ What a comeback kid!~ Our God is so good!~ Praying for you and Nathan and those boys Amey that you will continue to find strength and see and feel God’s amazing love for you and those kids – especially Phoebe!~ Love and prayers form IL!~ Marcy ~

  6. It is hard to believe that is the same little girl that was in the ICU just last week…….she looks amazing. God has created such wonderous bodies that can withstand unfathomable horrors and come back looking like that precioust child. It truely is remarkable. I am so thrilled for the boys, to be able to see her alert, playing, and like the little sister they miss so much. I pray that she will be able to go home……for Easter…..that would be grand. Love to Nathan…..Mrs. H

  7. She looks so good here. It looks like she is really gaining the strength back in her neck. I love this picture of her with Nathan. I am rejoicing with you for your little nocturnal girl. Having the opportunity to play with her all night after all you’ve been through seems like such a great reason to lose sleep for a change. Praying God’s continued strength for all of you and for Phoebe’s complete healing.

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