In The Moment (Feb. 19th, 2012)

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7:58 pm:

I am with my sleeping beauty now. Phoebe has been on a sleep binge since her 2nd day of in-patient chemo. Her body is taxed and tired and I am glad to see her rest. The EXCELLENT news, is that her second lumbar puncture tested negative again for cancer cells!!

Shortly after I got here today it was time to de-access her port. Every 7 days they remove the needle that plugs in to her internal port to clean the area and replace it with a fresh needle. I love these times because at least for a little while, she is completely unplugged from any tubes or lines. I gave her a short bath because she was groggy and kept tilting back in the tub, but it was nice to get her all clean. Since she is too weak and foggy right now to walk, I took a stroll around the floor with her in my arms. It feels so good to hold her in my arms and walk without pulling a pole or worrying about her lines, such a simple thing I took for granted when Phoebe was healthy.

As I stood in line at the pharmacy the other day with my 3 boys, a woman in her fifties looked them over and smiled. “You have your hands full” she said ,”Yes, I do, and they have a 2 year old sister as well” I replied. “Three boys, I had three boys” she said, reminiscing and then she teared up right before me, “oh, it goes so fast, it seems just like yesterday my boys were their ages”. I wanted to say, “Believe me, I’m not taking these boys for granted, their sister is in the hospital with cancer”, but I didn’t. As the boys skipped, zig-zagged and hopped back to the car, my heart overflowed. I’m not sure there’s anything better than being a Mom. I want to squeeze every ounce of joy and appreciation out of these days while I have them. I am all too aware that life can change in an instant.

Without Phoebe at home I have noticed that Deacon feels so much younger  to me. He is now “the baby” in the family dynamic when we are away from  the hospital. He still shuffles down the hall with his blankie at 3 am  and climbs into our bed like he always has, only now I pull him close,  memorize the feel of him in my arms, savor the present. Until recently, it was not unusual for Nathan and I to wake up with both Deacon and Phoebe in bed with us, little arms and legs splayed across our chests. Nathan would untangle himself from the 3 of us and quietly get dressed for work while I would bask in the morning sweetness. I am praying for a morning like that again soon.

Please pray for Phoebe as now begins the drop in her blood counts. The boys have recovered from their sickness this past week and are enjoying visiting Phoebe again. Thank you everyone, for your guest book posts and letters, care packages and food..we have been upheld by the body of Christ and it is so humbling.

 

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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