ICU: Out Of The Woods? (March 7th, 2012)

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12:32 pm:

Advanced Neutrophil Count…..8,175!! Immune system reporting for duty and fully engaged!

I am appreciating the doctor’s metaphor this morning, “Phoebe was in a thick forest, now she is coming out of the woods.” He was very pleased to see that her swelling has reduced by almost half, her vitals look good and she had several bowel movements (big excitement after having been on pain meds for so long) last night. During rounds I kept hearing “she’s definitely turned a corner”, and it was music to my ears.

Our Oncologist came by last night and it was decided that Phoebe will have an undetermined amount of time off chemotherapy in order to heal. Her hands and feet have gaping skin and are shedding and weeping so they will need some time to heal completely before her immune system gets knocked down again.

We had some discussion about the chemotherapy drug that caused the neurotoxicity and both agreed that it is difficult discerning how to move forward. The drug that caused the harm to Phoebe also causes harm to cancer cells in a significant way and seems to be key in this particular protocol for keeping the tumors away. He was reluctant to make any decisions right now and I agree. Let’s just focus on getting her better before we move forward and are faced with more difficult decisions. The truth is, the response Phoebe had to this med is so rare that there isn’t really a “plan” for how to move forward or change protocol with such patients. Oh me.

Her hands have transformed in the past 2 days! To the untrained eye they look like a hot mess, but if you had seen them 48 hours ago, you would see the positive change. The golf-ball size blister is totally deflated and there is only a pocket of skin where it was. Her other blisters are popped and healing and peeling. Her legs look so tiny at that normal size! Her tummy, as per usual, still needs to deflate so her lungs can have room to breathe. This will be key in trying to wean her from the ventilator by Friday. Please pray for a soft tummy and that all the remaining fluid in her abdominal cavity will leave.

She’s looking good and wanting to wake up and I’m thrilled. I am praying for a nice steady weaning off the ventilator and anxiously awaiting that chance to look into her eyes again. I can’t wait to hear her voice!  There is so much to look forward to this weekend and I am so stinkin’ blessed by the way people have stood with us during these past few weeks. Thank you all for holding our hands through the storm. God has sustained her beautifully as she teetered on the edge during her sepsis and I am overwhelmed by that. Seeing her rally has been amazing!

Soon we will have “Phoebe wakes up!” pictures on here! Thank you Team Phoebe!

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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