Post-Move ER Visit

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Tonight finds us in the E.R. with Phoebe. This is the first time we have made the trip from Lindale to Dallas for an E.R. trip since our move on Monday. Phoebe finished a very strong round of chemo last week and it has completely knocked her counts down. Over the past few days we have been trying without much success to unpack boxes and get settled in our new home in Lindale because Phoebe has not been feeling well and has needed constant attention. Nathan took her in for a blood transfusion on Tuesday and she felt a little better when she came home that night, but in the past few days she has become progressively more weak and started showing deep, dark bruises on her injection sites.

We called the Oncologist today to talk about Phoebe’s symptoms and he felt that Phoebe almost certainly needed a platelet transfusion and that we should come to Dallas. The only part of Phoebe’s treatment that will be done in Tyler is her regular weekly labs. Or, should an emergency arise, she would be taken to Trinity Mother Francis hospital in Tyler, stabilized and then transported to Children’s in Dallas for treatment. They simply do not treat pediatric oncology patients in Tyler and Phoebe receives continuity of care here at Children’s so we will be driving back and forth quite a bit.

Tonight was a bit rough. I brought Phoebe in around 5:30 pm and five hours later she had had two separate nurses try and fail to access her port. Blood was all over her dress and we were both in tears. Phoebe is always so brave during these times and she was done crying before I was.  Seeing her hurt and the endless pokes and the feeling sick and weakness and vomiting and mucositis and all the effects of the chemo just does me in. At times I feel like I’m losing my ability to bear up under the stresses of chemotherapy and it’s effects on Phoebe. I feel incapable of seeing her suffer any more. If I only had an ounce of the grace Pheobe possesses through all of this… She is such a miracle and a delight.

Around 11 pm we finally got one of our favorite Hem/Onc nurses to come to Phoebe’s room in the ER and access her port. Nurse Julie was quick and kind and had that port giving blood within seconds. I really am so impressed with the Oncology nurses and many of them feel like friends. I was so thankful for Julie tonight and so was Phoebe. Phoebe’s labs came back showing that her platelets were extrememly low and her sodium was a high 159. So, we are being admitted for an overnight stay to receive platelets and get her electrolytes regulated. As I write, it is 1 am and we are still in the ER waiting for a room to come open.

We are enjoying our house so much and I really wish I could post about that tonight, but I am too tired. We have been so blessed by our friends and family and church family and we are looking forward to being all settled in. Thank you all for praying for us and for Phoebe. I will be able to update more frequently when we have internet access at our house.

~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.

8 responses »

  1. We are thinking of you and praying and loving you. Praying that this stay isn’t too long and that when she gets those platelets, she takes a quick turn for the better. Love you and carrying you in our hearts today.

  2. Praying for a very quick turn around for you guys, for Phoebe’s levels to stabilize and for a renewed strength for all of you. God Bless You.

  3. Amey, your family is so strong of faith in God! Thank you for the courage and inspiration — Phoebe is such a little trooper, adorable and good! Prayers from my deepest heart for you all. Joy comes in the morning, always !!

  4. Sweet Mama, my heart aches with yours. We have been praying and passing on the prayer requests too. Love you dearly, Charise

  5. Dear Amey, I so admire yours and Nathans bravery and strength. You are such a
    beautiful example for everyone who knows you..As is Little Miss Phoebe. Wish
    there were miracle cure we could all pray for but Phoebe is in Gods hands and
    not ours. I admire your strength .
    Love, Gerry V

  6. Pray everyday ,several times a day for little miss Phoebe. So sorry you all are going through this journey. Prayers for you to receive Peace, Strength and most of all Comfort from Gods healing hands. God bless you all and we will continue to pray.

  7. All I can say is, I am so sorry you and Precious Phoebe have to endure so much pain!!! I am praying and love you both!!!

    ________________________________

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