Chemo and Tough News


Phoebe is in this hospital this weekend for chemotherapy and will finish up this round on Tuesday. So far she is handling the chemo well, but she has been quite moody and emotional this time around.

The tough news isn’t really new news, it’s just confirmed news. Phoebe’s brain no longer registers that she is full. She is always hungry because her damaged pituitary gland no longer recognizes satiety. Imagine feeling hunger ALWAYS. And never being able to satisfy it although you eat constantly. This is Phoebe, and barring a miracle, this will be a way of life for her.

Phoebe experiencing constant hunger is one of the reasons she is up during all hours of the night. She usually wakes up every 30 minutes to an hour asking for food. If we say no, she weeps, so we usually try to re-direct her and get her to focus on something else. She plays Angry Birds on my Nook, or she plays with her tea set, or sometimes she can be sung back to sleep for a bit, but she doesn’t sleep for long because hunger gnaws at her constantly.

If we do not maintain tight control over what and how much she eats, she will be obese. She also must take steroids for the rest of her life because she does not produce cortisol and this of course compounds the problem. Add to that, that she no longer has a thirst mechanism, and we have a perfect mess. It is overwhelming to imagine her suffering from constant hunger for the rest of her life…and having to make herself drink although she feels absolutely no thirst. She will have to learn self-discipline in a way most of us will never have to. Oh Phoebe…

And it’s tough. It’s tough not to give the girl a cup of Cheerio’s at 3 am when you are exhausted down in the deep of your bones and she is crying for the 14th time that she is hungry. We bring carrots: crying. We bring apples; crying. We bring Cheerio’s; silence…crunch, crunch, crunch and we get a little bit of sleep. For an hour or so.

So, although we knew it was probable that this was the issue, hearing it confirmed today just made it sink in anew. Please pray for her and for us to have wisdom.

Also, Benjamin is sick right now and could use some prayers.

Thank you for holding us up,


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. Amey, it seems like your family, especially Phoebe, is being tested in ways that are unimaginably difficult. I’m sorry that your fears were confirmed to be reality. I continue to lift you up in prayer, and will continue to ask God for a miracle – to remove all of this new “stuff” from Phoebe and heal her.

    Praying for Benjamin, and hoping that he will be feeling well again soon. I’m sure that some extra loving is in order for him – I hope the extra prayers from around the world help too.

    Big hugs,
    Pamela in Calgary, AB

  2. My heart aches for you and your sweet baby girl. Praying for strength for you all. I can’t imagine as a parent having to watch this happen to your child I will pray hard for you all that God will provide an answer for you guys to be better able to cope with this and for understanding and peace for you all.

  3. Committed to pray for Phoebe every time I feel full, every time I feel hungry, every time I open the refrigerator door.

    Ben, we sure do love you and pray for you to get well. God has such important things in store for you, dear servant of Jesus.

  4. Lord, my heart is heavy as I come to You for Phoebe today. The news about her hunger and thrist issues seem almost to overwhelming. Lord, You are bigger than even these, if You can raise people from the dead, You can take care of these as well, so we place these into Your hands, trusting You to take care of them in the way You know is best. Lord, be with Nathan and Amey as this is more than any parent wants to ever hear, be with them every hour of everyday. Be with Phoebe’s brothers as they are so young and this probably does not make any since to them, help them as You know is best. In Jesus’ Name, Amen

  5. Truly, I had no idea that this was even possible… the a body can not feel full. It’s heartbreaking to think about this and I’m praying that God’s grace will be sufficient and abundant in this issue for you and Phoebe as she grows. Praying for unexpected miracles and abundant peace. I love you Friend.

  6. My heart is heavy when I read this knowing how tough the news is about Phoebe’s constant hunger and lack of thirst mechanism. I am so committed to pray for her and all of you as you deal with each new aspect of her treatment and adjust to the demands of her condition. She truly is such a miracle. We will pray for Ben as well and hope he is feeling better. Much much love to a family I have never met, but who reigns daily and predominantly in my thoughts and prayers.

  7. Amey, my heart aches with yours as I read this post. I remember sleepless nights with my children and it is hard to imagine how you are holding up. But we know it is by the might and strength of He who is in you. I am also committed to praying for you and have forwarded this post to several friends asking them to do the same. Praying God’s hand of peace on your heart and His continued strength to carry you and your family and most especially little Phoebe. Lord, please, rain your provision and sufficiency down on the Fair Family.

  8. I won’t pretend to understand what this is like. We continue to pray for full healing, not just surviving. We will also pray for physical, emotional and spiritual strength for you as parents through the his presence in the Holy Spirit.

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