It was a good weekend. Phoebe is doing great which always makes it easier for me to leave the hospital and really feel at peace at home when my Mother-in-law comes to stay with her on the weekends. My Mother-in-law Sarah, is a professional at taking care of people. I remember the week after Deacon was born, I was recovering from a c-section and suddenly Nathan and myself as well as Ben and Averic were totally knocked off our feet with the flu. Grammy to the rescue! She came over, cleaned up vomit, changed sheets, did laundry, took care of my 1 week old and myself, was up all hours of the night going from boy to boy, getting cold Sprite, putting cold washcloths on little foreheads…amazing. She was a lifesaver then, and she is now.

I don’t know how we’d do this without our Moms. Each week they come to take shifts with Phoebe to relieve us and make it possible for us to be at home with our boys. They have both learned along with us how to guage sodium levels and detect the signs that mean she is ready for her DDAVP shot. They change scary diapers at 3 am and have parties with Phoebe til the sun comes up, faithfully text me with updates at odd hours and then go home and work. If this exhausts me at age 35, I know it exhausts them being so old and all. *wink* Really, we have some pretty awesome Mamas and Phoebe won the Grandma lottery.

Benjamin is spending the night with me and Phoebe tonight. He has been begging for a while and I finally felt like we were at a place where he could. I brought all of his school work for tomorrow and he decided to get a head start and tackle Bible, Grammar and Reading this evening so he could have a short day tomorrow. He did a great job of entertaining Phoebe tonight. In fact, I think the energy level of a 9 year old is much better suited for this type of thing than mine. He blew bubbles, did silly dances that got her giggling, watched Veggie Tales with her, snuggled…I love seeing her brothers love her.  And I love that home education affords our boys time to be with her.

Phoebe looks more like herself than I have seen in a while. She is now weaned off the Valium and almost completely off the Methadone and she looks so clear. She got to have her port de-accessed tonight and have a real bath in the bathtub. She LOVED it. The little bugger turned into a prune, she stayed in there for an hour! She was laughing and washing her My Little Pony’s hair with shampoo, pouring water in a bucket and having a grand time all around. It was tough talking her into getting out. Who would have thought that a simple bath would become a highlight of our lives? I use to rush through baths to get the babies in bed for some quiet, tonight I pulled up a chair and just watched for an hour.  She’s so precious.

If all continues to go well, we’ll get to take her home on Tuesday! We are feeling so relieved that this round of chemo went so well and are looking forward to having her home again.


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.

18 responses »

  1. So good to hear such a wonderful post. Aren’t Moms the best! I feel so blessed to have two that help me out! Praying that y’all have a great night of sleep and if not…at least a great late night party. Thanks for sharing your lives with us. I am always on the lookout for your updates.

  2. I think I will just cry now….what a sweet post. What a praise. Her name comes to mind all the time and when it does I pray whatever God brings to mind. Today, what came to mind was, “In everything give thanks, for this is God’s will for you in Christ Jesus.” So, I will continue to give thanks for such a sweet day and such a powerful answer to all our prayers that made this round more bearable. Glad you enjoyed watching her in the tub….

  3. So glad you guys have great families around you. Hopeful that this round is what the next one will look like too. Tuesday + home sounds wonderful. Now to just get those legs back under her. Praying

  4. I am so happy to hear that things have gone so much better for you this time around! I will continue to pray for you and your precious family!

  5. So inspiring!! What amazing parents you are and such a strong family you remain to be. Good days or bad days you appreciate them all. Glad to hear that Phoebe is enjoying those “kid” moments again. We continue to fight and pray with you Phoebe and have so much love for you all..

  6. I can almost imagine sweet little Miss Prune giggling about the silly dances and washing the little ponys hair. Glad to hear that it’s going so well in this round. Thank you Jesus ! I hope tuesday is the day to go home . This time it will be much easier and her body will be not so much in stress than the first time. It will get more used to it! So until then enjoy the parties and dances and we pray for comfort for the whole family ( including grandparents).

  7. I picture Phoebe and Ben together, and my heart sings. I remember how my babies enjoyed bathtime and I’m thrilled Phoebe got to have a good long spa soak. Blessed be the coming days and may your energy reserves be replenished, and may those terrific grandmothers get some much needed and deserved rest. Blessings and love to each of you. You are in our hearts and on our lips constantly.

    Anna Hudgens

  8. I am thankful for Phoebe each day and for your post. The two of you changed my life and the way I see life. Without Phoebe there wouldn’t be a story, and without you, Amey there wouldn’t be a post/joournals everyday. And without you two, life wouldn’t be as bright and more colorful, because I appreciate every bit of what I have today. Praise God for Phoebe and the opportunity HE gave us to be part of your lives.

  9. We are praying for Phoebe each day and we will be praying for her to go home Tuesday. I look dieses to see you all soon. God Bless you all and grandmas.

  10. Love sweet Phoebe!! So thankful for your strong MAMA’s that are there to help! This maybe where you get some of your strength eh? Praying for you and love you all! Hopeful for Tuesday.

  11. This made me so happy to hear! I check your posts constantly and pray and hope Phoebe has had a good day, which in turn give you and your family (and precious Grandmas:)) a good day too. Sleep easy tonight. xxx

  12. I am so thankful to hear Phoebe is on the mend from this past chemo treatment and could go home on Tuesday. Praying for this.

    What wonderful mom’s you have! You are so very blessed.

    Praying always!

  13. I just can’t even begin to express the immense RELIEF I, myself, feel over this present round of chemo. I can only imagine how you and Nathan feel. All of the suffering in the last one, sweet Jesus, was overwhelming and I am sure I was not alone with the feeling of holding my breath waiting to see what would happen this time. But now, the joy! Seeing her looking so much better is just so wonderful! One thing I have learned from the H. Spirit recently – hope is indeed a powerful weapon.
    Thankful for the Grandma’s too. May God renew their strength too.
    We have an awesome God. – Mary B.

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