Watching and Waiting

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Phoebe was receiving platelets to get her count up when she had the reaction and turned white. She was taken for an emergency CT scan to check for tumor regrowth and they reported that they “did not find anything scary” on the scan. While she was being taken up to ICU her eyelids and lips started swelling up demonstrating that she was having a reaction, most likely to the platelets. They discussed intubating her, since her airway was also swelling but Nathan asked them to hold off and they put her on the bi-pap machine instead. She was given Benadryl and a stress dose of her steroids and the swelling started to come down immediately. She sat up and talked and smiled for a bit then went to sleep and is napping now.

They are giving her broad spectrum antibiotics and watching her closely for signs of infection. Everyone is most concerned about the weakness in her diaphragm because it is so ATYPICAL of what they usually see with kids in Phoebe’s situation. But then, Phoebe tends to be atypical. So, for now we are watching and waiting to see if she continues to improve. Her blood pressure is a little higher, and her other numbers look good. We are praying that this is just a reaction to the platelets and that this is just a little blip.

Thank you all for continuing to pray!

~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.

14 responses »

    • Praise God! LOTS of prayers keep coming from us and we anxiously await each update. We will continue to pray that Phoebe deals with each step of this fight and has the best possible outcome along the way.
      The Anderson Family

  1. Praise the Lord! Praying that this is just a little “blip” in the road!

    Thanks for keeping us updated, Amey!

    Blessings,
    Peggy

  2. Like others, I’m also glued to my computer waiting for updates . . . this one is encouraging . . . I will continue to pray hard for her to have the strength to come out of this phase quickly, for her medical staff to stay on top of the situation and for Phoebe to get the rest she needs to keep on fighting.

  3. I am praying like crazy for this precious little girl. She has become Pheobelicious to me as well. Kiss her on the head for me and tell her that Arkansas is praying for her to feel lots better!

    God Bless You!!!!!
    Renee

  4. Scarlett got hives every time she had blood or platelets. It is listed as her only allergy. They can pre-medicate before giving blood products with Benadryl (and Tylenol when she is neutropenic to prevent any transfusion-related fevers).

  5. How scary! I’m hoping its just an allergic reaction and nothing more…..my prayers are with you all. Thanks for the updates.

  6. We’ve been there…not exactly where you are, but our 17 month old has/had malignant neuroblastoma and did 4 rounds of chemo after surgery to remove a tennis ball sized tumor from his 26 pound little body. We were in ICU for 12 days and in the hospital lots more days than that over and over again. Hang in there, we are praying for you and your precious baby girl. Our little guy turned 2 in February and is tumor free. We monitor him very closely and we aren’t totally in the clear, but we are so thankful for every day.

  7. Beautiful baby girl, you amaze me constantly with your strength!!! I pray that your counts continue to rise and that your blood pressure continues to improve. You are such a gift from above and I pray for your complete healing here on Earth daily!!! I will also pray for your dear, sweet mommy ~ that she can get some good rest without the invasion of cancer thoughts. She loves you and your brothers so very much and deserves some good sleep! God be with you sweet love!!!

    Sending love and prayers from PA!
    Kendra
    C.O.L.E.’s Prayer Team
    http://www.colesfoundation.org

  8. Good call, Dad! Praying this is just a little bump in the road and you’ll be out of ICU in no time. Love you, Lu

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