ICU: Good Day and Benefit Concert

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Sorry for such a late posting, we just got back from a wonderful benefit concert for Phoebe where we all had a great time. This morning unexpectedly found us dining out for breakfast with friends from Lindale which was a great way to start the day. We enjoyed visiting and the boys had a good time with their friends.

When we got to the hospital, Phoebe had on red, heart shaped sunglasses and several big, plastic diamond rings and was rummaging through her box of trinkets. What a sight to behold! She was sitting up and visiting and putting stickers on paper, it was so sweet. Nathan and I spent the afternoon with her while Grammy took the boys home for the afternoon and we got to have some much needed snuggle time.

Tonight we went to Denton where some wonderful friends who are like family to me held a benefit concert and auction for Phoebe. It was incredible the way people banded together to make it happen and we were beyond blessed. The barbeque people volunteered their service and time and fabulous food, the band was incredible, the singers excellent, even the police officer there volunteered his time to be a part of the event for Phoebe. Wow.

People donated some amazing things for the auction and I couldn’t believe the generosity that was overflowing in that place tonight. It was a wonderful time, and it was good to be away from the hospital and out of Dallas for a few hours too. It was a beautiful night to be outside and I just want to thank everyone who was a part of this evening.

Phoebe continues to improve little by little and we are still on track to move back to the Oncology floor by Tuesday if she keeps it up. Please pray for her breathing to strengthen so that she can maintain her oxygen on her own, for her withdrawals, that she would be able to continue to wean off the meds as comfortably as possible and for her strength to grow.

It was a good day, a nice change of pace and we are feeling encouraged. Thank you all for praying for us, for loving us, for surprising us with your generosity. It’s humbling to be on the receiving end of so much generosity.

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.

12 responses »

  1. Post whenever you like- the updates are AWESOME! So happy to read about a great day!!

    Love- From Washington State!!

    Cheri Perry

  2. Amey, Wonderful to here the concert went so well. Your family is just reaping what they have sown for years. Generosity, compassion, friendship and so much more. Thank you for being a part of my life and blessing me with your friendship.

  3. Rayleen is so right, you reap what you´ve sown!!! I am glad to hear that you had such a good time and that so many people were there. I wonder what stories you will going to hear about people beeing there touched by God through your friends and volunteers.
    It is great to see Phoebe dressed with jewels and cool sun glassees! She is a girl!!!!! And it seems like she really loves to dress like one!
    So we hope her breathing and everything else gets in balance and you can move on tuesday. I am glad that they finally have an idea about the tummy story and maybe find out the reason of all her bloating and pain.
    We keep praying and once again say thanks to all your friends that take physically so much care for you why we can “just” lift you up before the Lord.
    Lulu wants to give air kisses to Phoebe and thinks her jewels are pretty cool (I think she wants me to go shopping soon)!
    LOL
    Chris

  4. The fact that you apologize to us for being “late” with a post is quite telling. We are here for you, not the other way around. It’s just one more way Heaven is teaching me through Phoebe and her mom – about His wonder, hope, peace, thankfulness, sacrifice and looking at life with His lenses on! Thank you, Amey. Thank you, Phoebe. Thank you, Father.

  5. I am glad to hear Phoebe is continuing to heal.

    I have noticed that people, when a crisis is at hand, are so generous and helpful. It is very refreshing to see love for their neighbour when there is a need. During this time you need to be surrounded by a lot of love, for the situation you are in is very draining. I am glad that our Father is sending you lots and lots of love.

    Praying and praying,

  6. I love this little girl I’ve never met, and your posts as her mother have moved me so much. My two girls are grown, and their middle sister died in the womb on the day she was to be born. Yet I have never experienced the intensity of up and down emotions which I have, following Phoebe’s story. My deepest affections to you and your family. Phoebe has brought me closer to God.

  7. Nathan & Amey,

    You do not know me, but we have the same FATHER and HE is good to his children all of the time. We are friends of Darwin and Dianna Anderson who have posted a daily blog on FB for prayer. I have to be honest and admit that the blog is much too overwhelming for me because of our own circumstances, and so I have not gotten terribly involved, but I was drawn by the LORD to your story and have become part of the warrior prayer team for you and for your children.

    This morning I read your short bio on this page and I feel lead to share with you a brief note of encouragement. In order to do that, I must give you some background.

    On Sept. 23, 2008 our granddaughter Presley was born and within 12 hours our lives were radically changed. She was diagnosed with a serious congential heart defect, a cleft palate, a condition called Pierre Robin. All of this sent us into the strange world of hospitals and doctors where they spoke another language called medical terminology. We were forced to learn this language and spend much time living moment by moment. Presley had open heart surgery when she was 8 days old. We also were surrounded by a large group of support with family and friends. The morning of the surgery there were about 30 people with us holding us in prayer along with, I dare say, thousands all over the world praying for our sweet daughter, her husband, two boys and their precious Presley Kathleen. Now this is what I want you to know…………….

    After the surgeon came in to tell us that the surgery went well, we all gave praise to the LORD, gathered hands and gave thanks. During this prayer the LORD gave a vision to one our dear friends. She saw Presley at 3 years old in a pink dress with curly blonde hair and she was twirlling and giggling. We rejoiced in this news. She was 8 days old. Immediately after our friend sharing this vision another friend said she saw the LORD’s hands cupped and breath was coming out of his mouth and into our baby. The Dr. rushed in to say that there had been a complication and that Presley had coded and they had to shock her heart to get her back. This was a HUGE complication and we would have to see how things went. I looked at our friend and said, “YOU SAW GOD BREATHING LIFE INTO THIS CHILD AT THE VERY MOMENT SHE CODED!”

    Several weeks later Presley went into surgery to get a feeding tube and came out with a trach. She had a complication during intibation. But this is what I knew to tell my daughter who collapsed in my arms with the news. “SHE IS 3 YEARS OLD WITH CURLY BLONDE HAIR, SHE IS IN A PINK DRESS, TWIRLLING AND GIGGLING! SHE DOES NOT HAVE A TRACH AT 3 HONEY, WE CAN HEAR HER GIGGLING.”

    It was not easy. Presley’s life was dramatically different that anyone had expected. The loss of a dream had to be mourned by her mommy and daddy. BUT THERE WAS HOPE and we had to hold onto that. There were visions and we had to hold onto those, and so we did. The LORD was faithful to give us more visions for this child.

    Presley is now 3 1/2. The trach was removed when she was 2 and though there was now evidence at 8 days old, Presley has curly blonde hair at 3! She dances, twirls, runs and keeps up with her brothers and cousins. Her troubles are not over, but she is an overcomer! GOD is faithful to his word and HE is a promise keeper! I has not been easy but it has been miraculous and we are IN IT with JESUS.

    What I believe the LORD wants you to know is this. Out of the mouth of your baby you heard HIS voice and Pheobe is a miracle, HIS miracle. Don’t look at the moment. LOOK to the Author of the miracle. Hold onto HIS promises for you, for your family and for Phoebe. I have so much more I can share with you but I know you can only take in so much. You are emotionally spent. I understand. Be encouraged. GOD IS ON THE THRONE and HE loves YOU so very much. Hold onto HIM.

    Your sister in Christ,
    Bonnie Millar
    Broken4Purpose.

  8. The photo with the glasses is beautiful. The other, with her older brother, very sweet. The moments that you share…….make sure to take lots of photos………for the boys, Phoebe, and yourselves (Amey & Nathan). These are priceless moments, that may not be repeated. I am still praying……….for Phoebe to heal and regain her strength, stamina and hold tight her spirit………and for your whole family…….blessings.
    Phoebe is one very strong baby girl. May the peace of the lord be with you all.

  9. Hi Amey,

    Just wanted to tell you that our family prayed for you, and Phoebe and the rest of your family during our 50 minute ride to church this morning. We’ve never met, but I think of you often, and pray for you all throughout the day.

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