ICU: Waiting for Phoebelicious (Feb. 24th, 2012)

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6:50 pm:

Right now we are doing a whole lot of waiting for Phoebe. She has been asleep still for most of the day and her mental status has not improved much over all, but we have had some bright spots. Last night in the middle of the night she said very clearly. “I want some milk Mom” and today she asked for her computer but didn’t play with it for long. She also played with stickers with her Mammaw for a few minutes. These are good signs.

She had a blood transfusion today to help her hemoglobin and received platelets as well. Her heart rate climbed back down into the 130’s-140’s after the transfusion and all of her numbers started falling into place, it was beautiful to see. Her sodium is still high, and they are working on bringing that down slowly. She had an abdominal ultrasound today which we have not heard the results on yet and tomorrow she will have a CT of her chest and possibly a lumbar puncture to test for Meningitis.

The doctor was very pleased with the progress she made today and wants to see her continue to wake up a bit more by tomorrow as her electrolytes come more into balance. Her sleepiness is the biggest concern. She just can’t seem to pull out of it although her cognitive abilities don’t seem to be diminished at all. She played with my hair today and said “snuggle me Mom”, and her eyes followed me around the room. That was so good to see and is such an improvement from yesterday.
At this point we are praying for “just an infection”, or “just sepsis” as crazy as that seems. The alternative is a bad MRI that shows tumor regrowth or metastasis of cancer cells throughout her Cerebro-Spinal fluid. Any of these issues could account for her sleepy mental state.

Nathan and I are here together this weekend and my Mom took the boys home with her for some fun in the country. They were excited for a change of pace and it has been so good for Nathan and I to get some together with Phoebe. We have had some tough conversations today about what the different diagnoses’ would mean and some wonderful dialogue about how we see the Lord working through Phoebe’s life right now.

Your theology really gets a work out in a crisis like this, and it has been good to realize that what we believe about God and His goodness has not changed in the midst of all of this, but only been strengthened and  purified. I hope to share in more detail about that in one of these posts, but tonight I am wiped out. The last two days have been pretty intense and I am running on fumes and your prayers. Lots of tears today, and a roller coaster of emotions. Thank you for lifting us up!

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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