Latest on the Phoebster

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Phoebe is doing great. She had a rough patch last week, 3 days of crying, frustration and an inability to communicate what was wrong. I cried, th eboys cried, Phoebe cried..we were a mess. Fortunately, her Grammy saved the day and took her home to her house for a couple of nights so Nathan and I could get some rest and recoup.

I’m not exactly sure what she was going through, but I feel like she has every reason to have a 3 day freak-out if she needs to. I forget sometimes that she is probably just emotional because life is tough and chemo is hard and she has a lot of feelings that she is not yet mature enough to process or verbalize.

In any case, she calmed down after some time at her grandparents, and Nathan and I actually got to sleep in the same bed all night long for two nights! That makes 3 nights since we moved in.

Tonight we took Phoebe to church for the first time here in Lindale. So many people already know Phoebe and our family through the blog and the prayer list at our church, so it was nice for everyone to finally get to meet her. We have really enjoyed being able to be with our YWAM family and church family here. Just having that support system has so enriched our lives already.

Phoebe will go for her next round of chemo on the 27th. She will have intrathecal (spinal) chemotherapy this round and that is never fun. She is also still complaining of pain consistent with the UTI infection and I am wondering if she still has it despite the heavy-duty antibiotics. We will have her tested again to see what the problem is. Otherwise, she is feeling good, playing with her brothers, laughing…

On a sad note, we did not get approved for at-home nurse help. We were hoping for some help with Phoebe from 8 am to 1 pm each week day as we were told we qualified for 60 hours of at-home nurse care a week. Having a nurse 25 hours a week would have helped me with home-schooling and allowed Nathan to start work on some of his agriculture projects for the ministry, so we were disappointed to hear that the insurance rejected the request for help. We are now looking into another similar program for at-home help that is not with a nurse and we’ll see how that goes.

The boys are all doing well. Deacon will turn 5 on December 7th and he very excited about that even though I told him getting older was not allowed. He takes these conversations very seriously as he doesn’t want to be disobedient and it’s the seeetest thing ever! I tell him it’s fine, just this once, I’ll let him turn five, but that’s it, no more, and he agrees. I love this boy. He seems to be doing better in regards to Phoebe and I have made a concerted effort to single him out and make him feel special in the past couple of weeks.

Cancer is tough on the entire family and Deacon tends to be a sensitive soul, so my heart aches for him at times.

Thank you for praying for him, and for Phoebe and our whole family. We are hanging in there and enjoying the precious moments we get to share together as a family in our new home.

-Amey

Phoebe enjoying the cool weather

Phoebe enjoying the cool weather

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.

9 responses »

  1. So glad you are all at home. Thankful you had some sweet time with Deacon…..it is hard on everyone. Thankful for all God is providing. Thankful He is enabling you to persevere in all. Love to all of you….♥

  2. SO Great to hear you all settling in, going to church in Lindale, having Grammy’s help… praise be to God. So glad Phoebe is feeling pretty good. That’s funny that you tell your boys that getting older is not allowed. I have told Jeremiah that for years now when his birthday comes around. This year he was a bit tired of the getting older isn’t allowed routine… I guess I might have to let him grow up. Awwww… maybe not. 😉 Love you!

  3. Thank you for updates. I’m so glad you and Nathan had that “time” together. What a gift. You both are insightful and I know the Spirit continues to guide your steps through these hard times. He is doing a good work in the midst! Love you all! Hugs, The McNutt’s

  4. So glad she is doing a little better and you had some rest.
    It is hard on everyone. Be good to yourself when you can
    and know we continue to pray.

    Sunny

  5. Cancer is tough on the whole family, I am glad that you are finding ways to work around this and single out the other children to make them feel special.

    Poor Phoebe! I am sure that this whole deal is just throwing her emotions all over the place. I am glad things have settled and all of you are better rested.

    Praying and praying,

  6. Amey – I used to do insurance billing and sometimes had to fight tooth and nail to get things approved. With regards to the in-home nursing, don’t give up. Keep requesting it and be a squeaky wheel. Sometimes you just get the wrong person approving services and every so often you’ll find the one to actually listen to your request and approve it.
    We continue to pray and keep you in our hearts. Much love to all of you –
    Tammie

  7. I Pray you and your whole family have a good and Happy Thanksgiving and tell all the boys I said high . Lee Martin Decatur IL one of Joni Nichols friends

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