HAIR Today, Gone Tomorrow

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The past two chemo cycles have been a little less intense. We were home more, Phoebe wasn’t as sick and she even started to grow back her hair, eyebrows and eyelashes. It is amazing what a difference a little hair and eye lashes can make. Phoebe has looked older and much healthier than before.

Two weeks ago, however, she started up on a more intense regiment of chemo and they told us not to get too attached to the hair. Well, today I was cuddling with her on the couch and I noticed a little balding spot on the back of her hair. I grabbed a little bit of it in my hand and it just fell out.

Now don’t get me wrong, I know that this is one of the most benign symptoms of chemo treatment and with everything else going on in her body, her hair falling out is the least of her problems. But there is just something about it that makes me a little sad. I know it will grow back, and her cut hair bows fit better when she’s bald, but I guess it’s just a stark reminder of the severity of the battle that Phoebe faces and the war being waged inside her sweet little body.

Phoebe's Great-Grandparents treat her to a yummy lunch at Jason's Deli.

Phoebe’s Great-Grandparents treat her to a yummy lunch at Jason’s Deli.

On a happy note, the Fair family is reunited at last and we are all living under the same roof once again! The quiet, relaxed life that Phoebe and become accustom to was suddenly smashed when Deacon, Averic and Benjamin came crashing through the door Thursday night after being gone for 11 days. Now the house is more hectic, messy, rowdy and busy. Really, it’s just full of life again and I wouldn’t have it any other way.

-Nathan

Deacon, Phoebe and Daddy go for a bike ride in the nice weather we're having.

Deacon, Phoebe and Daddy go for a bike ride in the nice weather we’re having.

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.

11 responses »

  1. Dear Amey and Nathan,

    You are much in my prayers and another friend at Roswell Community Church – Rosemarie Breeden. She keeps up with you and also thinks you should write a book. You are so expressive.
    God be with you. Blessings, Faith

  2. My the love of those that love you continue to be palpable in your home and your hearts. Thinking of you all always. Blessed Be.

  3. Nathan,
    You are right, of course, about the hair loss being the least of the concerns, but I’m sitting here crying about it anyway. Your daughter is so brave, her illness so severe; but she’s a little kid, like the ones Jesus cuddled, and I see him holding Phoebe in his arms and the tears running down his cheek…

  4. I thank God every time I remember your family, which is at least daily, often times more. God is listening, Fair Family! Love you all, Kathy Stiffler.

  5. Oh, Amey and Nathan, I can totally relate to the times of quietness when the older boys are away and then the silent suddenly ceases to crazy, rambunctious boys. Sometimes it is overwhelming in the midst of my disease and life trials but I, just like you, wouldn’t trade in those rambunctious boys and the togetherness of family for the world. Oh, what a gift these crazy kiddos are!

    And I believe it is perfectly normal to be saddened by her losing her hair. It’s the little things that we take for granted when we are healthy right? The little things that mean so very much.

    We are praying for you daily and your family is apart of our family’s heart.

    Love you guys,
    Charise

  6. Nathan, You are right, of course, about the hair loss being the least of the concerns, but I’m sitting here crying about it anyway. Your daughter is so brave, her illness so severe; but she’s a little kid, like the ones Jesus cuddled, and I see him holding Phoebe in his arms and the tears running down his cheek…

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