Chemotherapy Bumped (Feb. 15th, 2012)

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10:33 am:

Phoebe’s sodium is at 138 which is PERFECT and it has been in the mid-to-high 130’s the last few tests which means she is stabilizing! She has had two good nights of sleep and has been up in her bed playing and coloring. She even made a trip to the play room yesterday!

Taking a nap

She had an x-ray last night to check her feeding tube placement and see if they detect anything new in regards to her tummy. We’re still waiting for the report on that. Thank you all for praying her through. Still hoping to see her tummy get nice and soft again and the fevers to stop.

2:40 pm:

I spoke too soon..sodium is back in the 150’s. I think I’ll quit posting the sodium levels because they change so frequently. Please just continue to pray for that very frustrating issue. She looks good today and is having fun with her Mammaw and Aunt Jenni! I’m hoping to post some pictures later when we have time.

9:35 pm:

Round 2 of Phoebe’s chemotherapy has been bumped up to tomorrow because there is a shortage of the intrathecal (spinal) drug called Methatrexate that they use and they want to make sure Phoebe gets her dose. A drug shortage is something that has never effected me personally, but this particular one really makes me nervous. The shortage was on the news the other night and we have read several articles, so we knew it was happening but did not realize how quickly we would be effected by it. Please pray for that!

Phoebe has had a great couple of days enjoying her higher blood counts and her immune system being a bit more intact. She has been sitting up almost the entire day, coloring, blowing bubbles, playing with Legos and just enjoying herself. I am trying to focus on the fact that Round 2 means we’re closer to the end of this first very intense 12 weeks of chemo. Usually around day 8-10 after the round starts is when her cbc numbers will drop and we will go through what we just went through again.

That is the roller coaster.

Tomorrow morning while I am waiting for her to come out of her lumbar puncture, I will give thanks that we are able to have the medicine she needs, that we are able to receive such great care and that we are one step closer to the end of chemotherapy. I am so grateful for these doctors and nurses that have invested their lives into caring for these children with cancer…what an incredible way to serve others, what a weighty gift to walk out.

Our mailman has been run ragged over the past two days with all the mail and care packages we have received. I don’t have time to thank you all individually right now, but THANK YOU! We have received blankets, and toys for all of our kids, baked goodies, prayer shawls, handmade cards and Valentines, jammies for Phoebe and myself..the list is endless. We love you, our mailman might feel otherwise. 🙂

Thank you all for being on Phoebe’s team! We are so thankful for each and every one of you both for your prayers, and the many ways you have reached out to us and blessed 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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