Phoebe Lu (Jan. 14th, 2012)

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11:48 am-Phoebe Lu: Phoebe Lu is doing well this morning. She had some head and eye pain last night and was given Loritab which always makes her a little silly, so Grammy and Grandad enjoyed that. She also looked a little pale this morning so they ordered blood tests which came back normal.

Phoebe and the new baby goats (2011)

They are now trying to completely rule out any possibility of infection that might be causing her fever so that they can officially diagnose that her fever is residual from the brain surgery. If that is the case, they expect it to correct with time. She is having more extensive blood testing and possibly a lumbar puncture to rule out infection.

Please pray that she would be infection-free, that we can skip the lumbar puncture and that her brain would heal in the area that regulates her body temperature.

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We are most likely going to be moved to the 6th floor this afternoon. We will then be in the care of the Oncologist, Dr. Bowers, whom we really like so far. And from what I hear, the 6th floor is the fanciest, roomiest place in the hospital. It will become like a 2nd home to us for this season and we will get to meet other families and children in our shoes. I look forward to, and dread that at the same time.

Benjamin and his Pappaw are in Lindale today so that Ben could play basketball with his Upward Bound team at church. I think this will become a Saturday tradition and both Ben and Pappaw really enjoy their special time together.

Averic and Deacon are tearing up the playground at the Ronald McDonald House and Nathan is searching for houses. We are thankful for the offers we have received so far and are looking into all of our options. I will update more this afternoon after our move to Oncology.

4:38 pm-One More Night In the ICU: It looks like we’ll be staying another night in the ICU. From what I understand, the Oncology team wants her sodium levels and DDAVP medicine functioning at 100% every 12 hours before we move floors. She has been doing great, but they are still tweaking her dosage to get it EXACTLY where it needs to be in order for her body to need it only every 12 hours. I will be taught how to administer her shots in her leg/buttocks and/or arms before too long. They are pretty quick so I don’t think I’ll have an issue with it.

We have had a nice afternoon with Phoebe. We put her jammies on and went for a stroll around the ICU. She looks so good wearing clothes and shoes and walking. It makes me wish we could just pack up and leave and go do life. After her walk, I held her in the rocking chair for about an hour just enjoying the feel of her in my arms. I am being purposeful about taking these moments in. I smell her, memorize the curve of her cheek, brush her bangs from her eyes and soak her in.
Behold, children are a gift of the LORD, The fruit of the womb is a  reward.          Psalm 127:3

Phoebe is a precious gift. All of my children are. I hold them a little closer now and I realize more than ever before that they belong to the Lord. I am privileged that He has given them to me for a season and I purpose to enjoy each day with them.
Ultimately, everything I “have” is His..it is BY Him and THROUGH Him that I am anything. And that makes it easy to know that He is in control and can be trusted. He redeemed me from the pit when I was a lost 21 year old girl, and He set my feet upon this path, and He has been so good to me. He has loved me fiercely, and redeemed me wholeheartedly and lavished me with His abundance. Who am I to balk at His design for my family? He is worthy of it all. May the lamb that was slain receive the just reward of His suffering and may my family be a small part of that.

Thank you Jesus..

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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