ICU: More Good News (March 8th, 2012)

Standard

6:15 pm:

Advanced Neutrophil Count, 18,000!!

She looked into my eyes! She has been rather awake at intervals all throughout the day and she looked into my eyes with recognition. It was the best feeling in the world to see her seeing me. She is of course irritated at the breathing tube down her throat and greatly displeased that her arms are tethered to the bed so she can’t pull it out, but she is waking up. They are weaning her from the pain meds and replacing them with Methadone and Valium which she will in turn be weaned from a few days from now.

She was taken off all antibiotics yesterday but spiked a fever this morning so they put her back on. Tomorrow they will REMOVE THE TUBE!! We are all so excited to see her awake and talking we can hardly stand it. She is already more alert now on these pain meds than she was the 5 days before we came up to ICU when she was so out of it after chemo.

Tonight my Mom will stay with her and I will go home to my brood of boys, and tomorrow will be a super Phoebelicious day as we all get to witness her transformation without the breathing tube and sedation. Please continue to pray for her tummy, that the swelling will continue to abate and that she will be able to tolerate her ng tube feeds. Also, pray that she does well with her respiration tomorrow when the tube is removed and that her lungs are able to handle the job alone.

We are so thankful to be where we are and grateful to have a day like tomorrow to look forward to. Last week was a bumpy one and a total transformation has taken place before our eyes! Here’s to Phoebe’s “Wake Up!” party tomorrow!

 

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.

2 responses »

  1. The Phoebster has come a long way! She looks so small and sweet. Thank you, God for giving her strength. I love all the pics and all the great news.
    Continuing in prayer.
    LaNell Rogers

Leave a Reply

Fill in your details below or click an icon to log in:

WordPress.com Logo

You are commenting using your WordPress.com account. Log Out /  Change )

Google+ photo

You are commenting using your Google+ account. Log Out /  Change )

Twitter picture

You are commenting using your Twitter account. Log Out /  Change )

Facebook photo

You are commenting using your Facebook account. Log Out /  Change )

Connecting to %s