3am Fun (Feb. 17th, 2012)

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6:15 pm:

Well, turnabout is fair play and Phoebe was ready to rock and roll at 3 am. I laughed at the scene yesterday morning when I discovered Phoebe chattering away and sitting up playing while Mom slept slack-jawed in the bed next to her. I’m certain the day nurse witnessed the exact same scenario with myself and Phoebe this morning when she came on shift at 7:30 am.

LOVE!

While the rest of the patients slumbered peacefully in the neighboring rooms, Phoebe and I were playing ball, making sticker pictures, talking incessantly about my hair and whether she wanted peaches or peanuts and then we had a Veggie Tales marathon as the sun peeked through the hospital windows. I kept eye-balling the clock and thinking “if she goes to sleep now, I can still get an hour and a half of sleep”…”if she goes to sleep now, I can still get 45 minutes of sleep”, and so on until the minutes evaporated with the morning dew and it was time to start the day.

She received 2 more chemotherapy treatments today and has tolerated the initial infusions well. The highlight of the day was watching her walk through the hall during Physical Therapy and put stickers on all of our noses. She kicked a big pink ball around for a while as I steadied her and got some good muscle strengthening excersize.

In many ways she seems more like she was a year ago..her hair is fuzzy and her cheeks are rounder and she is more unstable on her legs. We have regressed in regards to many of her accomplishments, including potty training, but all of those things will come back in time with practice and as she feels stronger. I am thankful that her motor skills are still intact and her congnitive abilities remain the same as they were before brain surgery. I had no idea how fortunate we were that she came through her surgery so well until I read the stories of several other brain tumor resection patients and realized that many of them have long term residual effects in these areas.

Phoebe had a complete resection, meaning that the neurosurgeon was able to remove the whole tumor, no tumors were detected on her spine and no cancer cells were found in her cerebro-spinal fluid 3 weeks post surgery. I am writing these things out today as a praise and a reminder to myself that we are starting this journey with the best possible odds with AT/RT cancer. I also know that information is important for other AT/RT families reading this journal.

More praise: Phoebe’s sores on her bottom look great right now. We have been told they might start to deteriorate again as this chemo pushes her blood counts down, but we are praying that we will not see that happen. Her sodiums have been in the mid to low 140’s for the past 2 days! So, she got on top of all of her issues just in time to start round 2. I am thankful that she is starting out in a better place than I expected a few days ago and I am allowing myself to feel a little glimmer of hope that we might get to take her home after this round for a few days.

Tonight Nathan’s Mom is coming to stay with Phoebe and Nathan and I will be at home with the boys. Their Great-Grandparents took them to the Dallas Aquarium yesterday and they had a wonderful time. Seeing more of our families and becoming more united in crisis has been one of the unexpected blessings of Phoebe’s journey. We are so grateful for the many ways that they have come alongside of us in the past weeks.

As for turning the journal into a book, I would love that. We are currently working on a blog where we can post the Caring Bridge posts all the way from the beginning along with the pictures that match the post. Caring Bridge does not acomodate larger pics and many of the recent ones taken with the better camera are larger. We will let you know when it is up and running.

Tonight, please pray for Phoebe’s heart rate, it is up in the 190’s in response to her chemo and her oxygen has dipped a couple of times into the 80″s. Her heart rate should be around 120.  Also, pray that her grandmother will surivive the 3am “Party til the break of dawn” Phoebe fun-time! Thank you all for praying and posting!

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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