Isaiah 43:2 (Feb. 6th, 2012)

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6:31 pm:

Phoebe’s Daddy is with her tonight and I am at home with our boys. She has had another rough day, and I suppose this is par for the course but it’s still shocking. Chemo is just shocking.

Her tummy pain is still her most consistent complaint and has been from the very beginning before she was even diagnosed. It’s still confusing why we can’t seem to help her in that area. I don’t fully understand it and no one seems to be able to explain it well. She is on Adivan (sp?) and Zofran  and rotates those 2 constantly to help with nausea and she gets Morphine when she is in a lot of pain.

Her sodium is 153 and they are aiming to bring it down slowly which seems to be happening. Her potassium level was low today so she is getting that through her IV as well as some IV nutrition. She pulled out her feeding tube AGAIN today and had to go through the whole horrible ordeal of having it replaced. She started receiving some formula through it but her tummy started swelling and getting hard so they stopped it.

She is not in good enough shape to have surgery to move the port so they are holding off on that until her platelets are in a better place. Her oxygen levels have been fine today which is the good news although we still need to see her lung puff back up. She was able to sit up in her PT chair today for a little while, but did not feel well enough to get up.

I have felt so helpless today being at home where I can’t see her, or help her, I know she has her Daddy..it’s more about me needing to see her with my own eyes and be there if she needs me. I know I can’t be there every night, we usually only get about an hour or 2 of sleep on a night at the hospital, but being home without her just holds an emptiness.

Tonight, I am clinging to this verse that someone posted for me today:

Isaiah 43:2  When you pass through the waters, I will be with you; and  through the rivers, they shall not overwhelm you; when you walk through  fire you shall not be burned, and the flame shall not consume you.

Praying that we will not feel consumed by this fiery trial, and that His strength will be made perfect in our weakness. Praying that my sweet little bug can find relief tonight from her tummy troubles and rest peacefully. Praying that I will have the strength to give these 3 little boys what they need from their Mom.

Thank you all for your kind words and prayers, they speak to us more than you know..

 

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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