“I’m A Miracle!” (Jan. 28th, 2012)

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10:07 am:

“Mama, I’m a miracle, Mamaaaa, I’m a miracle.” That’s how Phoebe woke me up at 3 am as I slept in the chair next to her bed. I didn’t understand her at first and thought she was saying “I’m a mean girl”, I said “no Phoebe, you are not a mean girl, you’re a nice girl.” She replied “No Mama, I’m a MIRACLE!” I gasped and teared up as she repeated it over and over again. I have never heard Phoebe say the word “miracle”…it felt like the Holy Spirit encouraging me through her.

She did GREAT last night! NO vomiting on one of the hard hitting nausea inducing drugs, and she slept very peacefully. She did wake up to visit and eat a few Goldfish crackers or raisins every now and then, but she was pleasant and didn’t seem to have any discomfort. So thankful for an easy first night and I know Phoebe was caught up in a big blanket of prayers last night too which no doubt carried her through. Thank you all for praying.

This morning when I was changing her diaper, I noticed several strands of hair on the bed next to her. I was surprised to read that the Cisplatin drug usually causes hair loss within the first two days, it’s hard to believe it will happen so rapidly.
Phoebe’s sodium levels are still a work in progress, but we are down to 157 from 161. This is good because although we want her at or around 145, we want her to climb down slowly. We are about to attempt a walk through the halls to keep Phoebe’s muscle tone in shape. This can be tough attached to the catheter and IV pole simultaneously, so here’s to hoping for a good little stroll and another good day of chemo.

I will update again as we progress, so far so good!

3:33 pm-162:

Current sodium level is 162. I am trying not to be shaken by every sodium report, but it can be difficult. Please pray for her sodium to come down point by point and get back in to the 140’s. I can see on Phoebe’s face that her body is now feeling the effects of the chemo. Her lips are cracking, her cheeks are flushed and her eyelids droopy. It hurts to see this.
I see the desert ahead, I know it will be harsh, that we will thirst, and we will want to turn back.

But,  “I will refresh the weary and satisfy the faint.” is what He tells me in Jeremiah 31:25

I miss the six of us being together, I feel torn between Phoebe’s needs and the needs of my 3 boys. I haven’t seen Ben play basketball yet, haven’t had a good long talk with Averic about his God-questions, haven’t tickled Deacon into a heap of giggles. I miss them.

Isaiah 40:11  says, “He will tend his flock like a shepherd; he will gather the lambs in his  arms; he will carry them in his bosom, and gently lead those that are  with young.”

I have a million and one concerns, things that trouble my heart and make me feel heavy and He speaks to each and every one of them in His word. I would be anchor-less without Him.

So tonight as we ride the sodium roller coaster and Phoebe refuses to drink and my husband is lonely for time with me but sleeping here with Phoebe, I will just have to bring those things to Jesus..no, drag the weight of them to His throne and lay them down at His feet because they are too heavy.

Tonight Phoebe begins the red medicine called Doxirubicen that will turn her urine and possibly her tears, red. Nathan and His Mom are taking the night shift and his Dad and I will be with boys. Thank you all for continuing to read, to pray, to stand, to walk this road alongside of us.

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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