Crazy Day

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At 8:45 this morning Phoebe went into a seizure. She was watching cartoons on the couch with her brothers when Averic noticed that she was suddenly silent and foaming at the mouth. He ran to tell us and we immediately called 911. The seizure lasted for about 8 minutes with Phoebe unresponsive and locked in a sideward gaze while she coughed intermitently and shook.

I knew immediately that her sodium had gotten too low. Last week her sodium numbers were extremely high; 166, 161 and so on, so we consulted with her endocrine team and began giving her more water and increasing her DDAVP dose (the shot of hormone that makes her kidneys hold on to fluid). Last night we went up one more time on her dose and apparently it pushed her over the edge into the danger zone.

We were taken to the ER in Tyler where her labs were drawn, showing that her sodium was 129; eleven points lower than the 140 which is considered perfect. Her Potassium and Magnesium,which are all tied in to her sodium level, were also very low.

Shortly after the seizure Phoebe began to come around although her speech was a little slured and she “zoned out” from time to time. After a couple of hours she was back to her normal self and told the nurse she was “going home to see Sadie (her dog) and Matilda (her cat). I love this girl.
Unfortunately, Sadie and Matilda will have to wait, because we are now at Children’s Medical Center in Dallas.

Because of Phoebe’s tenuous electrolyte issues and her past grand mal seizures, CMC sent their Care Flight Helicopter to Tyler and Phoebe got to take her first helicopter ride! Her sodium level is now 134 and climbing as we have removed her normal water feeds and she is only getting what she drinks herself. Hopefully we will be moved down to the oncology floor tomorrow or Tuesday when she is all leveled out. Just in time to start chemo.

Poor baby has done a lot of hospital time lately. Most of all, Please pray for her stamina and that her joyful little heart will remain so.

-amey

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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.

13 responses »

  1. Oh dear Phoebe! Prayed with tears today. Really, my mind has no words, but my heart has been crying out for you guys all day. Just letting you know that we love you all and are praying for you constantly.

  2. Praying for your joy as well. You are such an inspirarion to so many. Praying for your joy, strength and total and complete healing for phoebe.

  3. Amey, just read this after the end of the prayer service in Newtown. The President read the names of all the children. I wept, then I read of poor Phoebe in seizure, feared the worst. I’m so glad she is doing better, but sorry she has to go right back to chemo. Poor Darling.

  4. Amey and Nathan,
    You both, Phoebe, and your entire family are never far in my DAILY thoughts and prayers.
    marilyn in TN

  5. She is a real pillar of God and Grace….You are all so blessed with this child of God in your hands…I hope all of you are blessed with half her strength…XXOO

  6. I am praying all her levels return to normal and that chemo will be miraculously smooth. I am also praying that Phoebe returns home with you soon,so you can spend a peaceful, joyful Christmas all together in your new home!

  7. We continue in our daily prayers for Phoebe and for you. We continue to believe in her complete restoration. Lord, restore balance to Phoebe’s system. Return her home today to see Sadie and Matilda.

  8. Morning, Amey, As I prayed for you and your family this morning before reading this, I prayed that you would be safely tucked in under His wing. Praying that you would be aware of God’s presence and the protect His wing offers you. That you will be able to rest in this place that is anything but restful. Dear Lord, please, please we cry out to you for your sweet angel, Phoebe. May your hand of healing be on her body the very hand that calmed the seas. Please Lord bring your calm, peace and provision.

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