Wednesday Update (Jan. 25th, 2012)

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7:37 pm:

Phoebe is fever free and has not had any Tylenol or Ibuprofen since 8:45 yesterday morning! THIS is an answer to prayer!! I have been at home with my boys all day unpacking and writing lesson plans and when Nathan texted me that she as fever free and sleeping I wept…praise God!

It’s evening time now and I am in Phoebe’s room while Nathan is with the boys in the lounge on our floor. The lights are out, Jason Upton worship is playing and Phoebe is in a still, peaceful sleep. I can not believe my eyes. She has not slept like this in WEEKS. Usually when Phoebe sleeps she is kind of “stuck” between sleep and wakefulness, she moves and talks a lot and gets agitated  easily, but tonight, only peace. Nathan said he even changed her diaper a few minutes ago and she stayed completely asleep.

The GI doctors came today and discussed Phoebe’s ultrasound. They did not seem overly concerned about her raised liver enzyme levels because they were only a tad higher than the norm. They are concerned that she has an imbalance in her intestines with an overgrowth of bad bacteria and want to give her Flagyl to clear that up. I got in the car and sped up here to the hospital when I heard that because Nathan and I have been on Flagyl before when we lived in Mexico and it is very harsh on the body, causing severe stomach cramping and insomnia. They decided that Phoebe will start chemotherapy on Friday and the last thing I want is Phoebe on Flagyl and chemotherapy at the same time. The GI doctor told Nathan it is not harsh and will make her feel better, which has me confused, so I guess I will be doing some research tonight. No Flagyl until research.

It was so difficult for me to stay away from the hospital today, but I knew I needed to be home, getting things in order and just doing life with my boys for a day. Still, I struggled, felt guilty, felt a pang of sadness each time I passed the door to Phoebe’s bedroom, I had time to think about our situation and it was difficult not to just give in to the sadness that overwhelmed me. And yet there was some comfort to be had in the mundane..sweeping, wiping up Deacon’s spiilled milk, going over schoolwork. Deacon wore his Phoebe button all day and when we sat down to eat dinner, Phoebe’s blue eyes stared out at me from Deacon’s shirt. It made it all the more obvious that we were an incomplete bunch of Fairs. Her booster seat keeps her place at our table, and it also highlights her absence. I miss her in our home. I ache for the old normal today…

But she is fever free and sleeping and I will rejoice in these victories for today. They are today’s blessings and I am thankful to be able to report such amazing news tonight. I want to hug all of you who have been cursing that fever and praying for it to leave. Please stay away fever!! This is great news for chemotherapy because it means we can TAKE HER HOME when she’s done with treatment!!

Now the fluid needs to reabsorb. Please pray that it would reabsorb and the pressure and fluids in her brain would regulate back to normal. I would love to see Phoebe in great shape before Friday so she is ready for the battle. We all need strength for the battle before us.We need Wisdom for how to manage our schedule and family, health for the boys and Nathan and I so that we can be 100% for Phoebe.

Thank you all for praying and holding us up when we are weak. May He show Himself strong on our behalf. He is our hope, our comfort, our only peace in this storm. We will not be tossed about as the enemy might expect..no, we will stand grounded in His steadfast love. We will rest in the knowledge that we are fully known and fully loved by He who commands the morning sun and sets the boundaries of the sea, whose voice is like thunder and who spoke the world into existence with a word. He is our strong tower, our Jehovah Jireh..and He is good to us.

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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