Night Before Surgery (Jan. 3rd, 2012)

Standard

Finally, a moment to sit down and breathe. Phoebe is tucked in to bed after a long day of laxatives and seeing various specialists. I pray she can just sleep tonight without too much interruption, poking and prodding. Tomorrow is a big day. Things have been so hectic and I just need a few moments with my girl. I look forward to sleeping next to her tonight and just soaking her in.

Phoebe a few months before her diagnosis

The surgery process will begin tomorrow around 7:30am. First, an hour or so of anesthesia prep and then 5-10 hours of surgery with hourly updates. Today has been about prepping her body for surgery and much attention has been paid to getting her electrolytes balanced and getting her system cleaned out. We have seen several specialists since this tumor touches a few different brain centers. We have met with an Oncologist, an Ophthalmologist, and an Endocrinologist as well as the infectious disease doctors. We learned that whenever there is a brain tumor, benign or malignant, Oncologists are involved in the process. We will not know until tomorrow if this tumor is cancerous. Our neurologist explained to us that the TYPE of tumor it is, rather than IF it is cancerous or not, is the more important issue. He explained that one could have a cancerous tumor that was very easy to remove and would not cause further concern in the future, and that one could have a benign tumor embedded in some very serious parts of the brain that would cause several serious issues, so “cancer or not” is not the real question. To a degree, this was comforting to hear and we were even more comforted when he told us that it appears that Phoebe’s tumor has grown primarily in the open areas of her brain. He is of course guardedly optimistic when he shares with us, balancing our hope and the reality of the situation very well.

The tumor sits and seems to have it’s root on the optic nerve center, so a portion of the mass will be left there as it is too risky to cut so close. The remaining areas of tumor left after surgery will most likely be shrunk with a pill-form of chemotherapy. If there is an aggressive cancer, a more aggressive chemo regimen will be instated. We have not discussed those details in depth though, because until the biopsy of the mass, these are all just projections. We will have more answers tomorrow. The infectious disease docs were brought in to discuss the history of the parasite situation and they decided that for now they would wait to re-test her stool until more time has passed since the completion of her anti-parasite meds. They are not concerned that it is an issue right now.

The Ophthalmologist dilated and evaluated her sight and confirmed that her optic nerves were inflamed and the Endocrinologists are keeping an eye on her for the possibility of a certain type of situational diabetes related to the tumor’s pressure on the pituitary gland. So, we have several things at play here and we are praying for the most simple outcome.

Please pray for Phoebe’s electrolytes, that they would balance out and be in the right place for surgery. Please pray that the tumor would fall away easily from the brain centers that it is touching. Please pray that the tumor would be benign. Please pray for our neurosurgeons and their team and that Phoebe would sail through surgery without complications. And please pray for her 3 big brothers who are being shuffled between family and friends right now, that they would be given grace during this time.

We have been so amazed, brought to tears, overflowing with gratitude, for the report that thousands are praying for our sweet girl during this time. Seeing the Saints of God respond and unite like an army for our daughter has been so precious to us. We thank you, each and every one.

Because He lives, Amey …Phoebe’s Mama

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. I just found your blog through a link on another blog – Satisfied By Love. As a mom, I can only imagine how hard this must be. I’m starting at the beginning, and will be praying for your family.

    Christine

  2. I just read your blog. I am the mother of 5 boys and 1 girl….My heart is broken for you. I just want to send my love and well …I really have no words.Just lots of love to your family from my family.

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 )

w

Connecting to %s