Aug16

To phoebe

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Happy Birthday to my Phoebelicious!

Happy birthday to the one who taught me that life is too precious a gift to waste even a second on things that do not matter. Happy birthday to the one who helped me earn my endocrinology doctorate in 8 months. Happy birthday to the one who faces every new challenge with a brave and resolute spirit.

Happy birthday to the one who has touched more people in her short life than most people will in a life-time. Happy birthday to the one who has taught me so much about love, grace, peace, endurance and life. Happy birthday to the one who draws in everyone she meets and who never met a stranger. Happy birthday to the one who knows God on a level I may never understand. Happy birthday to the one who can put away Cheerios like nobody’s business.

Happy birthday to the one who, by the grace of God, is gonna beat this affliction.

-Daddy

Phoebe on her first day (2009)

Filed under Uncategorized | 17 Comments

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.

17 responses »

  5. HAPPY BIRTHDAY TO YOU, HAPPY BIRTHDAY TO YOU, HAPPY BIRTHDAY TO PHOEBE, HAPPY BIRTHDAY TO YOU!!!May you have the most wonderful of birthday’s.

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  8. Very well said Daddy! Your children are blessed to have parents handpicked by God especially for them and the life experiences they have had and are going thru, just as you are blessed for having them! Love to all – Carol and TomI

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  12. HAPPY BIRTHDAY PHEOBE from down under 🙂 😃 So delighted to hear that the latest results are clear. I think you have a new t-shirt slogan to add to the “we love neutorphils” slogan, the new one could be “Pray for NED the only result allowed”!!!!
    Nathan, we hear how awesome you are but don’t often hear from you; you too have a moving eloquence and an amazing ability of transferring your feelings into words. It is my privilige to be the reaader of these emotion and love filled words and I thank you for that privilige.
    Amey and Nathan, it some how seems wrong that yours and Pheobe’s pain and suffering should be a blessing to me and I am sure all the readers of your amazing story. And yet it is. So thank you for the blessing and the gift of learning from you and your experience.
    I can relate to your previous post of leaving meds etc behind when travelling, I to have experienced this and felt the frustrations of having left vital meds or equipment else where!!! It always works out in the end though as I am sure you have found. I would like to quickly share a recent breakthrough my son has had with a view to congratulating you for being an advocate for Pheobe with the endo team. My son has uveitis (a vision threatening immune disorder, his body rejects his eyes) He was diagnosed at 3 and by 5 he lost the vision in his right eye and his left eye was struggling. We have awesome Dr’s in Australia but not such a big population as you guys have in the US, therefore our Dr’s do not get as much experience in treating the rarer challenges! Hence our visit to your amazing country in 2010. The Dr we saw in Boston gave me the confidence to really advocate for Connor when we got back to Oz. As a combined result of that and of course the plan layed out by God Connor is now regaining vision in his right eye, the eye the Dr’s had pretty muched decided would never be used to see with again, he has been in remission for nearly 2 years and his left eye is also improving.
    My motivation for sharing this is simply to give encouragement, if you need it, in what you are doing with Pheobe and her care.
    Thank you once again for the honour of allowing us to follow your story and Connor, Erin and I continue to pray for you all.
    Amanda xo

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  13. Amen! So precious both those phoos arefrom today’s posts. Happy birthday Phoebe, you are so incredibly loved and adored. We pray for you each night and said a big happy birthday:)!! Here’s to many, many more! Love the Williams

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