Beads of Courage

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A couple of weeks after the brain surgery, a woman came to our room in the hospital. “Do you participate in the Beads Of Courage program?” she asked as she handed me a booklet. I skimmed the pages as she explained the beads and looked over the heavy-weight paper in my hand reminescent of a scantron. Little bubbles to be shaded in beside things like “blood transfusion” and “hair loss”, “neutropenia” and “received antibiotics”. I scrolled down the long list of procedures and events; “received a PICC line”, “port accessed”, “mobility issues”, “physical therapy”, “speech therapy”…..and the list went on.

“Each time she has one of these procedures, fill in the bubble and she can trade her completed card for the beads she’s earned.” As the door closed behind the woman, I sat down and back-logged every procedure Phoebe had experienced up to that point. The next week we traded her filled-out card for a baggie full of beautiful beads. Red for blood transfusions, black for nights spent in-patient, yellow for every poke she had received, a little bald head with a face that represented hair-loss, rainbows for physical therapy, and the big, beautiful, smooth brown bead that Phoebe chose to symbolize her tumor resection surgery. I strung them on the black cord and tied them onto her IV pole. The kids on the oncology floor wheel their IV poles through the halls and proudly display their Beads of Courage. They wear them like badges of bravery.

Each one of these beads represents the strength that these pediatric cancer kids has had to muster up at such a tender age. I hate it that Phoebe has hundreds upon hundreds of these beads. I love it that she has a material way to mark her brave journey.

And the bead she chose for her surgery….

 

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.

22 responses »

  1. Amy, I hope all is very well. I havent seeing you all in a long time. I will visit soon. Beautiful story. So touching to the soul.

  2. Such a beautiful way to show how much beautiful strength Phoebe has! Phoebe you are my real life super hero! If you could design your very own super-hero cape, what would it look like?
    Leisa Chancey (Stephanie VanDyke’s mom, Bella’s g-ma).

  3. I am so sorry that Phoebe has to go through all these proceedures, but like you I love this idea to share her courageous journey in a beautiful way. Praying for less beads in the future!

  4. Since my friends son was diagnosed with cancer, I have been amazed by the all of wonderful people that have started programs such as this to help these kiddos get through their fight of this horribly disease. Like you, on one hand it breaks my heart that there is even a need for such services. But on the other hand I thank God every day for the wonderful people that start and keep theses programs going in order to bring a little joy into these lives of these sweet babies. God Bless and I am praying for your sweet baby girl as she fights this monster we call cancer.

  5. What a neat way to show the strength and courage Phoebe has had through all of this! I was amazed at how long it was and continue to pray for your family!

  6. And each moment dear Amey and Nathan – you exemplify pure courage, love, trust, boldness, bravery, perseverance and love beyond measure to your precious daughter Phoebe, to your family, all of the medical staff and to those of us who read your posts as you walk beside Phoebe. Together your beads of courage radiate through Phoebe’s smile and life! I will use beads as a memory focus to continue to pray for Phoebe, you and your family.. Thank you for sharing your journey !

  7. Thanks so much for sharing. I have to admit a few tears were shed when I realized how many she has collected. What a beautiful way of displaying courage and hope!

  8. Amey,
    How sadly beautiful. The beads are almost bigger than Phoebe. But what a powerful way for little kids to count small victories over their cancer. Thank you for sharing them with us.
    Kay

  9. What an awesome idea! Phoebe looks really good right now and looks like she’s getting back to her healthy self. She’s such a sweetheart and such a brave little girl. Love and blessings to you all.

  10. WOW!! I am smiling and crying all at the same time! Phoebe, I LOVE your Beads of Courage and all that it and YOU stand for!!! 🙂
    Thank you, Amey, for sharing!
    Blessings,
    Peggy

  11. It is overwhelming to see her bravery and what you have all endured together represented so. I have read every post you’ve written and followed your journey daily from the first text you sent me, and still I was shocked seeing her battles quantified in this way. For just a second I could feel the miles of road you’ve walked so far, and it made me weep. I love you all so much and can’t wait to see which bead she picks to symbolize her TRIUMPH over this thief called cancer.

  12. Amey, each and every bead is a testimony to Phoebe’s courgage and the Lord’s keeping power. I can see Precious Phoebe happily wearing them. Without a doubt in my heart, it is Phoebe who is leading the Fair Family through this whole thing. Her little heart is obviously hand and hand with her Heavenly Daddy and first love…

    Love and prayers,
    Kathy

  13. Hi this is Ashley from Beads of Courage, your post is simply beautiful. We would be honored to share with our Facebook followers if you would be ok with it. Just let me know.

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