Ups and Downs (Feb. 12th, 2012)

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5:51 pm:

It’s been an up and down kind of day. Phoebe’s sores are having a hard time healing and they look deeper today than they have in recent days. Her sodium is still wonky and needs to come down and her tummy is still bloated. The boys are still sick. Those are the “downs”.

The “ups” are: Phoebe got her port “de-accessed” today and had a REAL bath in the bathtub! She was afraid at first, but quickly remembered how to play with her bath toys and enjoyed making me “soup” with her cup and bowl. She didn’t want to get out when it was time. We tried to take a walk around the unit but she was too tired so I carried her and walked around. It was SO nice to have my baby girl in my arms walking without tagging a pole alongside of us.

She will get her new port needle in a few minutes and be hooked up again, but it has been a nice couple of hours of freedom. Over all, Phoebe has had a fun day. She slept for a couple of hours on her Grandad’s chest and then played with her toys for a while. My Grandparents came by today and they were thrilled to see Phoebe so up and alert. I’m afraid my posts have made it seem that she is in constant pain, which she is not. In spite of her sores and tummy pain she has a good morphine drip that keeps her pain under control for the most part. She does get restless and frustrated at times, and that can be a side effect of the steroids she is on.

She had an episode today where she “zoned” for half a minute and was not responsive. This is common when her sodium levels get high and can be very scary. Keep praying for that sodium..

I will leave the hospital tonight and have dinner with Nathan before heading home to my boys. I am praying for total IMMUNITY to whatever they have.

My Mom and Nathan’s Mom will take the Phoebe shift tonight and she will be in good hands with her Mammaw and her Grammy. Thank you all for your continued prayers.

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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