Chemo: Round Two (Feb. 21st, 2012)

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Thank you all for your guest-book posts. I read them and cry and feel uplifted and fought for, it’s awesome.

Her Creatinine #’s are lower than they were yesterday which is a good sign. Based on her input/output the doctor thinks her hydration is good. Her vitals look good as well, however, Phoebe continues to be very nauseous and is having a very difficult time keeping anything down. She also is extremely ‘out of it’ and sleeping around the clock in between short periods of being half awake. They are not happy with this, and want to see her more lucid and being able to interact well.

The doctor thinks we are dealing with an infection she is fighting off, which would not be surprising with the illness we had at home last week. As diligent as we were, I’m sure it’s impossible to keep ourselves completely germ free.

They also acknowledged that she just had a particularly harsh round of chemotherapy and that, combined with an infection, combined with blood counts dropping makes for an intense situation in her body. Dr. Bowers was right when he told us that we will feel like quitting at the end of this 12 weeks. I can’t imagine, so I won’t. I’ll just stay here in the present. When I start to think about her going through 17 more months of chemo it is overwhelming.

Tonight her Daddy is with her and I’m glad for both of them, I think they both needed some time together. I had a nice school day with the boys and spent some time planning out the next several weeks of lesson plans. Doing normal things is therapeutic..mopping, doing laundry, everyday drudgery is a welcome respite from the intensity of the hospital right now. Tonight I will enjoy a quiet evening at home with the boys and pray fervently for my girl who seems so down.

I am so thankful for those of you who have stocked our freezer with homemade meals. I can’t imagine mustering up the energy to do much more than put a frozen pizza in the oven right now!

Thank you all for standing in the gap for our family and our Phoebe.

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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