Phoebe Needs Prayer Today (Feb. 11th, 2012)

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1:28 pm:

Phoebe had a rough night and my Mother-in-law called at 6:30 this morning to tell me I should come in, Phoebe was asking for Mama. I quickly showered and packed for the night, grabbed Phoebe’s clean blankets and headed out the door. My 3 stooges were bleary eyed, ambling down the hallway in the dusky morning light, and I got to kiss their noggins before I left. Averic has been down with fever and vomiting the past two days, so I hate leaving him especially right now.

Phoebe falls asleep playing with her toy

My Dad came to get Ben this morning for their weekly trip to Lindale so Benjamin can play in his Upward basketball games. I hear they won and Pappaw rewarded Benjamin with a Texas-sized chicken-fried steak. Deacon is on the mend with just a residual cough, but needs prayers because his little four year old heart is having a hard time each time I leave to go to the hospital. He begs to go with me and it breaks my heart. When he is well, I plan on bringing him up to spend a day with Phoebe and I at the hospital. I’d like to do that with each of the boys if everyone will just get healthy. I usually have a date with each boy by himself at some point in the month, and I think we are all missing that right now.

Phoebe was in a better place when I got to the hospital, but has had a difficult time throughout the day. Her morphine dose has gone up again so she can be comfortable. It seems that the progress we were hoping to see this weekend with her blood counts going up is not happening. Please help Phoebe fight today by praying for the following:

1. Fever today is 102.1

2. Sodium still high @ 159..the pattern today has gone 166, 153, 159     (1 step forward, 2 steps back)

3. Not yet tolerating a full NG tube feeding and she needs the calories     to heal.

4. Tummy very distended and uncomfortable. Her “innie” bellybutton is     an “outie” right now. They still have no explanation for this.

5. Left lung is still partially collapsed and breathing shallow.

6. Open sores on bottom need to heal.

7. She will receive more IV chemotherapy today on top of all of this.

Nathan’s Mom got to sleep for a few hours today and I think the 2 of us will stay tonight. It seems like Phoebes needs are a 2 person job right now because she is often uncomfortable or irritated or not sure of what she wants. It also helps me to have someone here to make decisions with about IV fluids and what we should try next or what questions to ask the doctors. Often times, just making the every day minute by minute decisions is the most difficult thing because it’s overwhelming.

Many of you have sent songs, or words and impressions you’ve had from the Lord and those speak straight to my heart. Thank you for praying and sharing. Nathan and I go over those together and we feel so blessed to have such “involved” friends, family and even people we have never met.

I hope to post again tonight, hopefully with a good report!

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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