It’s a Mixed Bag (Jan. 4th, 2012)

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5:48 pm:

Phoebe had a good day today. Nathan posted quite a few pictures of her on face book and he tried to post them to Caring Bridge, but the files were too large. She is still trying to adjust to the feeding tube formula feedings. She must be able to tolerate 30 cc’s every hour without vomiting before she can be released to come home. She is still able to eat regular food and drink fluids by mouth with the feeding tube in, but she is only taking a few bites at a time and not wanting to drink anything.

She had her “outpatient” chemo today even though she is still in-patient. She got a dose of Vincristine through her port this evening. This is the drug that is responsible for  hair-loss in chemo patients. I have noticed that her hair is thinning in some areas, but haven’t experienced any big tufts coming out yet. She looks great, and she asked to go on a walk twice today which brings me so much joy. She is getting some of her energy back and that is supposed to improve even more once she really starts responding to her nutritional needs being met.

Tonight I’m asking for prayer for Averic, our 7 year old son. He tends to be our child most effected by change or loss and I just think he is struggling. Averic is the only one who cried last year when we told our boys we had lost the baby we were expecting. I miscarried at 12 weeks and then at 9 weeks just 4 months later. He is also our boy who asks the most questions about Phoebe’s health and when she’ll come home and how come God just doesn’t heal her right now? I know all of the boys are really missing Phoebe, they say so, but tonight, would you pray for Averic? He has a storm inside right now that needs quieting and I am finding I have to remind myself that his behavior is reflecting something deeper going on.

Today Nathan and I got to spend some time together with the boys and that was nice. We are looking forward to more time together tomorrow before we head back to the hospital and I am on Phoebe duty. Phoebe is with her Mammaw tonight and I am praying they both get some good sleep.

~goodnight all..

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.

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