Just Another Jewelry Party Night

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It’s kind of nice coming to post here in the evening and not having much new information to report. It reminds me that life “out of the woods” is much more simple than the past few weeks have been. Phoebe is making small improvements each day and that helps me rest easy when I am home with the boys. I even forgot my phone in the other room a couple of times today and I NEVER do that anymore. My phone is usually glued to me just in case there is there is a change in Phoebe’s status or an emergency.

Phoebe had lots of visitors today that kept her awake and interacting which is GREAT because she is asleep now and I am thinking *maybe* I will get some sleep too. I won’t hold my breath though…I know Phoebe and her wooly ways! She will wake up for her nightly jewelry party just as soon as my breathing gets rhythmic with slumber. I have a feeling about this.

Her sodium is in a good place and will hopefully stay that way. Her oxygen has been tapered off again and she is holding her own, and…drumroll please…she ATE APPLESAUCE and DRANK WATER! Go Phoebe!! She can swallow again! Her food of choice, spaghetti, will have to wait, but she passed the swallow test and now we challenge her a little more each day in her eating and drinking.

Her sodium seems to be a in a better place today and that just leaves her lungs and of course regaining her physical strength and walking. Her lungs are still very small which only allows her to take short breaths and work harder to oxygenate her body. They shrunk down and got smooshed up while her body was so full of fluid and she was lying down in bed for so long intubated. She really needs to take deep, long breaths and get them to expand and open up, but it’s not something we can ‘make’ her do. Getting up and walking would do wonders for her lungs and this is why her physical therapy is so important, but it could take some time. Or we could see a miracle..could you pray for Phoebe to walk? And for her lungs to go back to their normal capacity? She is SO close to being approved to go home with just a few more baby steps!

Well, just as I suspected Phoebe has shaken off her sleep and is ready to visit. Jewelry party here we come!

~Amey

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.

7 responses »

  1. Incredible news, way to go Phoebe!!!!! So nice to hear both mommy and Phoebe had a good day. We continue praying and fighting right along with you. Enjoy your night together!!! ~The Williams Family
    And Sunah really wants to see Phoebe, she keeps talking about her and we pray for her each night before we go to sleep! She always says her name with a smile:)

  2. We are so very thankful that Pheobe is improving. Our prayer is that she will recover completelyand that she will get to go home soon. Earl and Virginia Love

  3. We´ll pray for our next miracle!! Go Phoebe!!! We´re so proud of you!!! Lulu just started her early morning “horse” party! I hope you can soon go home – it would make such an difference. We will pray hard for this! LOL
    Chris

  4. Applesauce and water! She’s on her way! I think she’s figured out nights are her best play time without so many interruptions and with Mom. It’s probably her Best therapy!
    Praying for continued improvement in every way.

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