Surgery Day (Jan. 4th, 2012)

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8:30am: We had a busy night, but managed to get a few hours of sleep. There were more blood tests and she got a bath and had her hair washed with a special solution. She wasn’t thrilled about a 4 am bath time, but was a trooper anyway. At 5:30 am they finally let her get a good sleep and she slept hard, slack-jawed and completely still. They came to get her around 7 am and we got to walk with them down to the OR. They gave her a sedative while we were saying goodbye and she got very woozy and sweet. She was perfectly content and we felt very at peace. We spent a few minutes in the hospital chapel praying and crying and entrusting her to THE ONE who formed her in the secret place. Now we are together with our friends and family in the waiting room. Please continue to pray..we appreciate you all so much.

First Update, 10:45am: They called to let us know that her central line is in and surgery began about an hour ago. Just now got the call that they are in the brain and are starting the tumor removal.

Phoebe a couple of months before her diagnosis.

Second Surgery Update, Noon: Just got the hourly call from the OR. They reported that Phoebe is doing great and they are still working on the tumor. There is a beautiful atmosphere of prayer and hope in this waiting room and we are surrounded by those we love. Our dear friend Katherine Ewing, has been here since 6:30 am interceding in Phoebe’s room, she has committed to stand until Phoebe is out of surgery and doing well. This morning as I was praying over Phoebe, the Holy Spirit put the words “fall away, fall away, fall away” in my mouth. I just spoke to the tumor and my prayer was that it would fall away. An hour later I received a message from my friend Robin Osteen that the Holy Spirit had placed it on her heart to pray that the tumor would just “fall away”, and that that was what she was praying out over Phoebe. Just now, one of DeDe’s friends texted her and said that the words “fall away” keep coming to her mind as she prays about Phoebe’s tumor surgery. God is on the move, putting prayers in the mouths of the saints. Thank you Jesus for total involvement in all of our cares. I stand amazed…Third Update, 1:45pm: Phoebe is still doing great. They said they might be done in just an hour, so we are praying that that means the surgery was more simple than they anticipated.

Finishing up, 2:15pm: The neurosurgeon is finishing up and will be calling us soon to consult with us about the surgery. Phoebe will still be in the OR for an hour while they get her cleaned up and then she will be brought back to her room in the ICU.

From Summer:  I have taken over the post as Amey and Nathan were just called back to speak with the doctor. Please continue praying that he will deliver great news!

Amey will have more details later but here’s the gist of it:
The surgeon feels that it went very well. The tumor was very vascular so Phoebe did need a blood transfusion but she is doing really well.  They got the vast majority of the tumor out and the biopsy results could be in as early as next Thursday or as late as two weeks from now. The surgeon did say that she should feel better immediately. Amey and Nathan are in there with her now.  Thank you so much for all of the amazing messages and prayers! Please keep them coming!

Pray for fever to break: Phoebe is having a hard time and we need prayer for her fever. It is 103.5. They have given her Motrin and are about to give her an ice bath. Please pray for her fever to break and she feel relief.

Amey’s Post Op Update: I think we expected to hear that the tumor had completely “fallen away” when the surgeon came to speak with us. The news was good, but I wanted it to be GREAT. They were a bit surprised at how vascular the tumor was, and indeed the EXACT prayer that we still need to be praying is that the tumor will FALL AWAY! The surgeon was pleased with how the surgery went, but did warn us that sometimes there are “microscopic fingers” of tumor tissue that cannot be discerned from healthy brain tissue.Those “fingers” are what need to fall away. He prepared us for the possibility of a malignant diagnosis with the tissue since it was so vascular and told us that chemotherapy in pill form or otherwise, would most likely be the next step. We were not given a “go home” date, and expect that much of that will be dependent on how Phoebe does tonight and tomorrow. Right now she is singing with her Grandmothers, lying on a cold blanket filled with ice water and covered with wet rags. We need to see this 104 temp come down. She is alert and totally herself and that is great to see. Right now we are taking it moment by moment because that is all we can handle. God has upheld us today, used the body of Christ to minister to us, and been faithful to bring our Phoebe through a big procedure. Thanks you all for your words and prayers and encouragement. I will update frequently as we ride out the next days and weeks and months. We thank you, and Phoebe Lucille thanks you..from the bottom of our hearts.

Fever Gone: Thank you for praying! Phoebe’s fever broke. The doctor said that the tumor put pressure on the pituitary gland that controls the body temperature. With that pressure gone, her body will be out of wack for a while. She is calm and happy now. Tomorrow she will have an MRI to see what is left of the tumor in her brain.

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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