Life with Phoebes (Jan. 18th, 2012)

Standard

11:02 am: Phoebe tried to make an escape last night. She decided to climb out of her bed and thank God for shoulders because they saved her from hitting the floor. Mom woke up to Phoebe crying and hanging from her bed by her arms. Poor baby was all shaken up, but not hurt. I don’t blame her, I’m ready for some new scenery as well!

Her fever this morning was 103.2 which is frustrating. I can’t imagine this constant and fluctuating fever being her new normal. Jesus, please heal whatever is causing this fever. Heal her hypothallamus and reduce any remaining swelling.

Phoebe gets to take a walk in the hospital

Sodium is at 144 which is GREAT, We want it to STAY HERE! The endocrinologist stopped by this morning and was very pleased with how she is leveling out. They are still tweaking and watching to she how she does with the dosage and we are praying for that magic number that sets everything aright!

As I write this, a hoard of people we love are at our rent house unpacking our belongings and setting up house for us. I haven’t been there yet, but will visit this afternoon to see the house and hug a lot of necks. We are overwhelmed by the outpouring of love and support. You all have held us up in so many ways, and we love you for it.

Last night we were sitting at a little table in the playroom and Phoebe was coloring, her IV pole standing beside her putting saline into her veins as she played. I watched as two more children entered the playroom, their IV poles trailing behind them, the tell-tale hair loss a sign of the chemo-therapy drugs coursing through their bodies. I looked at Phoebe, with her thick, curly golden hair and was hit with the realization that we will soon join this special club of children fighting cancer.

I will be that Mom in the playroom in my pajamas who knows all the nurses and can talk chemo protocol with the doctors like one of their colleagues. Our journey will merge with the journeys of these families. We will learn the names of their children, we will know the origin of the dark circles under their eyes, we will exchange knowing glances in the corridors of this place. And God will be in all of it. We will find Him in these halls, see Him in these faces, know Him in this deep pool of hope mixed with hurt.

He is here for the taking, for the long nights of questions and the bone weary mornings when our strength fails. He is God With Us and He is. May His strength be made perfect in our weakness.

Thank you every one, for everything..

9:18pm-We Live In Dallas: What a strange day. We live in Dallas. Right in the heart of Dallas. We thought we would be getting our hands dirty in all sorts of agricultural projects, and now we live in a big city. There go the chickens…

I jest, but really today felt like I was walking around in someone else’s life. The furniture in the house was mine, and the house was great, but it sat on a corner lot in a neighborhood I have never seen in a town where I have no other reason for being except that my Phoebe is sick. A lot can change in 18 days, or just one.

The boys were in hog heaven running through the house playing tag. Ben was organizing his baseball cards, and Legos were being organized into their special containers. Averic and Deacon were excited about their new bunk-bed and I was awed by the home school room. It was nice to “land”. And so “new normal” begins.

Phoebe’s sodium is 142 and doing well. I am scared to say it out loud, but I *think* they just might possibly be on top of this sodium issue. Her heart rate is great when her sodium is level and that’s nice to see. Her tummy however is still still giving her a lot of trouble. She is just full of air and bloated and her breathing is so labored because of it. I hate seeing her like that and not being able to do anything for her. They took us down to x-ray tonight and took another one just to be completely certain that nothing was amiss, and it wasn’t. She is just full of painful gas and no one is certain why.

Phoebe has three tests tomorrow for her pre-chemo work up; EEG, Hearing test and echo cardiogram. I am praying that her tummy will just deflate tonight and that will be the end of it so she won’t be miserable during all of them. We have not seen Dr. Bowers, the oncologist yet since we have been on the floor. They have been trying to get all of these peripheral issues under control to get her prepped for chemo, but no word as of yet if the go-date is still the 24th. I know they want to see her sodium 100% leveled, her tummy pain subside and her fevers to abate, so we are just taking it one day at a time.

Please pray for good sleep tonight for Phoebe, that she would get relief from the tummy pain and of course that those annoying fevers would just stop already. Thank you all for your sweet guest-book posts of prayer and encouragement and affirmation.

Proverbs 25:11 – Like apples of gold in settings of silver Is a word spoken in right  circumstances.

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.

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