D6, Gilda’s Club, Day 10



Phoebe made the move out of ICU and back down to the oncology floor today. She’s back to telling the nurses that the beeping machines are annoying, so I know she must be feeling better! It appears that her “blip” was indeed a reaction to the platelets although the she didn’t really present in the typical way that people do when they have a reaction. First she got very lethargic, then she turned white and her lips were as pale as her face so they took her for an emergency CT scan to check and see of there was tumor growth in an area that might cause obstruction. The CT was clear but while she was in the CT her eyes and lips started swelling up. She had some red splotches but no hives which is usually the first indicator that an allergic reaction is taking place. The Epinephrine was administered alongside a stress dose of steroids and immediately the puffiness receeded and she returned to normal.

A stress dose of steroids means an all night party since she can’t sleep, and Phoebe had lots of fans visiting her room during the wee smalls last night. Her favorite ICU nurses stopped in to play and others who know and love her came by. When I got there this morning there were still streamers hanging from the ceiling!

Deacon came with me today and spent all day with his sister. He was in hog heaven. I love seeing them together. He climbed right up in her bed, took his shoes off and they colored, put stickers on each other, played with play-doh, sang songs and talked. It warmed my heart to watch them banter back and forth like little people do. She was so content with him and I’m sure it was nice for her to have someone her size in bed with her. He never got bored, never complained, just enjoyed his sister and being there with me. It was a good day.

Tomorrow we are going to “Gilda’s Club” for the first time. Gilda’s Club is a program that Gilda Radner started to connect families afected by cancer. We will go to an informational meeting while the boys go to a Magic Show they’re having for the kids. We are looking forward to meeting other families walking through cancer with their children and will hopefully become more familiar with the resources available to us during this time. They have get togethers, zoo days, parents night out, family picnics etc. We have been blown away by the incredible people here in our neighborhood, and I expect that God has more wonderful friendships awaiting us as we connect with other cancer families.

Thank you all for standing watch with us these past 24 hours. It was a sudden and scary shift, and we are grateful to be on the other side of it. Phoebe is already on day ten of her chemo cycle, on day 14 her immune system will start revving up again! FOUR more days until we can take a big, deep breath and say “whew!”.


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.

11 responses »

  1. Such a great day! I loved the video. Phoebe is such a precious little angel…..loved the end when she said “all done”….so cute!! Praying she’ll get to come home again soon.

  2. Thanks for your post. Love the video….I loved the “all done.” Love hearing about her and Deacon enjoying each other’s company. Good medicine for both the little people. The Gilda’s Club sounds wonderful….so many different ways God is providing for you. God at work as only He can be….Praying on….so glad she is better…

  3. Our amazing Miss miracle was having an all night Party again! We are soooooo glad to hear that the incident yesterday went smooth by. And we we’re glad to hear that the doc’s we’re really fast in reacting! We wil have the next days on our special focus to pray that they will pass without any other reaction or infection.

  4. Thank you FATHER!! Phoebe is very special and I wonder about her not showing in the typical way is God’s way of saying, “Hey, don’t worry I AM looking after her.”

    I am so glad she had a good day and Deacon was able to come and play.

    Continuing to lift you all up and pray and pray.

  5. Phoebe is a wonder, always, isn’t she?! I love seeing her pics, although I’ve got to make time to view all the vids. Big prayers, always, for a little Phoebster! Hugs, from TX.

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