ER and Deacon Update

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Last night found Phoebelicious at the ER until 4 am getting a blood transfusion for low hemoglobin….

I have to mention here what an awesome father my husband is. As soon as her fever spiked and we realized we had to take her back, I disolved into tears. He gladly volunteered to take his girl and didn’t even wake me up to take over when he got home. I texted him at 6 am letting him know she needed her shot not knowing he was in the bedroom next to me with Phoebe. I assumed they were still at the hospital since he hadn’t woken me up. I love this man.

Phoebe is having a rough little time because she is once again being weaned from her final doses of Methadone. Today she had a lot of withdrawal symptoms; vomiting, yawning, fever, sneezing, watery – bloodshot eyes, shakiness, anxiety, irritability, sweating….you name it. It looks like we might have a rocky few days ahead as she continues to wean.

Deacon is doing great and continues to improve each day. His face is peeling quite a bit and he is really starting to feel itchy which means that he’s healing up underneath his little foam suit. He goes in Friday to have it removed and see how things are coming along. The stares we get out in public with these two are pretty funny. Phoebe’s bald head is a quick give-away that she is being treated with chemotherapy, but Deacon and his burned face and wrapped up body make people look twice. What a mess we are!

Here’s to a week with our family intact, come what may!

~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.

16 responses »

  1. I shared your Blog with a group called Candlelighters today Amey! I believe your posts are such an inspiration and this group works with Children who are diagnosed with cancer. Once a child is diagnosed, they stay with them and support the family until the child is into their 20’s. Thank you for your lesson and for the vulnerabilities you share every time you post! Much Love From Washington State!

    Cheri Perry

  2. Another great post! Had to laugh when you said you texted Nathan and he was right there next to you! You guys are both the greatest parents and hold each other up! Little Phoebe looks so cute laying in the ER. I hope her withdrawls won’t be too bad. That must be so hard to watch. So glad Deacon is doing a lot better too. You have the cutest family! My thoughts and prayers are with you all every day. Thanks for keeping us up to date.

  3. With all of this going on and you continue to stay positive! Hope the sleep comes in rounds for all of you so you can eventually catch up. Praying the burn heals quickly that Phoebe gets over the side effects with little hospital visits. Praying for you all – such cute pictures!!

  4. I know as rough as life can be sometimes keeping the sense of humor really helps. It helps ME! I know God will uphold you in the midst. The enemy is roaring and you are on a battle field. May your lives and family and home be full of His presence. “In His presence is fullness of joy.” Only in Him. I got some verses from a friend. 1Pet. 1:6-7 and 2 Corinth. 12:8-9 They really blessed me. I PRAY THEY BLESS YOU!

  5. Holding each of you up. May peace ans healing fill you house and cover each one of you.
    Amey, you both challwge and amaze me! I think back to the days of our Moms group meeting in your little trailer. Wow. The Lord has brought you so far and sooooo many lives are beinging changed! Thank you for letting us share your journey.

  6. Wow, you guys continue to be an inspiration to us all! I know I haven’t commented lately, but that isn’t because we haven’t been reading and praying! We are continuing to storm the gates with you over here in Armenia. My 5 year old asks me daily “so mom, how are Phoebe and her brother doing today” Love and healing blessings to you all!

  7. Hi Amey, I have been following your blog and praying. We know and love the Kahles, have been connected with YWAM here at our church for years and are very close to Josh Marion’s parents so the world seems to be a very small place right now. The connections seem to have knit you and your family into my heart. I’ve not posted a comment before but after the last week that you have had I wanted to say, mom to mom, that I would love to take you for a pedicure and a coke. 🙂 Just let you talk, sleep or breath…but my hope is that somehow, through God’s grace and supernatural abilities, we are helping you carry this. Praying for healing, rest, peace, joy in the storm and loads and loads of love.

  8. Wow! Your life is crazy! God is definitely with you! Can’t imagine your life (or mine) without Him!

  9. What a BEAUTIFUL mess!!! Your family is so encouraging and inspirational! God is doing a great work with everything you are going through. We are always thinking of you guys and praying for you all.

  10. Everything you post reminds me how miraculously we are made. I wonder if God thought it all out, or if just His character, breathed through His word, makes things beautiful. Anyway, praying for all of you. Try to sleep when you can. Even if it’s a few minutes. The dishes and the laundry will wait. Rest every chance you get.

  11. Dear Amey and Nathan,
    Praying for you and your family. This may sound hokey but I have sure thought about it a lot. When we all get to heaven and we are going to the big banquet, there is this table right center and front. It has extra lovely flowers, red and white wine, and is one of the tables of honor. Job and his family are there and we all wonder who will get the other seats there. Then we hear the maitre d’ call out ” will Nathan and Amey and their family come and be seated here, please”. And we all applaud for you all!!
    Luv,
    Kay
    T

  12. Amy you are such a blessing. I admire your strength and conviction so much. My family continues to pray vigilantly for you all!

  13. Prayers continue from my home to yours for sure! You guys are all amazing and have a precious, precious family that has been through too much. I am praying for God to continue to give you insight, patience and endurance each day as to what he has in store for you. Praying for Phoebe’s current withdrawal symptoms and Deacon’s continued healing. Praying for you and your sweet hubby to keep drawing energy from one another and for God to multiply the number of precious moments you all have together in the midst of your chaos. Much love and God Bless you guys.

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