9th Round of chemo

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Phoebe started her 9th round of chemo today. This round is the same as the last; one push of chemotherapy through her port this morning, followed by oral chemo each night through her ng tube (here at home) for 5 days, and four weeks until her next chemo. This was a pretty uneventful round the last go round so I am praying for the same this time. Her hair has started coming in and she has the sweetest little downy fuzz all over her head. Our oncologist said it wouldn’t be like that for long because she starts the “hard stuff” again on round 10. That reminder was deflating to say the least. It has been so nice to have a semi-normal life these past few weeks, with lots of time at home and very few ER visits. I wish we were in the home stretch…I wish she was done with Doxorubicen..the worst of the worst. But on we go..

I don’t think I’ll ever get past how wrong it feels to inject poisonous medicine into my daughter. Tonight when I was administering her chemo through her ng tube I was again overcome with how counter-intuitive it is. Catch 22.

Phoebe has been so sweet lately, singing and laughing at her brothers and cousins, enjoying herself. It’s been good for my soul, for everyone’s. Her at-home physical therpy sessions have begun and yesterday Phoebe crawled over to the couch where her Grandad was sitting and STOOD UP on her feet! COMPLETELY unassisted! Nathan yelled for me to “hurry!” and I couldn’t believe my eyes when I saw her! She was tilted to the side and unable to bear her full weigth on her left foot since it turns in badly, but she had taken the initiative all by herself and pulled herself up! So today during her physical therapy session she did lots of assisted walking and pulled herself up tp standing two more tmes. I am so proud of her. She is working so hard, and at last it feels like walking again is within reach. I am thanking God for the small, everyday miracles….they are a lifeline for us right now. Progress of any kind, means so much.

The other day we were at Barnes N Noble and Nathan caught Phoebe in one of her “moments” when she burst out in song. We thought you would appreciate seeing her in all her glory. And nevermind my jabbering in the background. I didn’t realize he was videoing at the time. 🙂

Sweet Girl….

and here are a few recent pics….

The Dallas SWAT team signed this poster on the wall and had it framed and sent over for the boys. They LOVE IT!

Phoebe and Mommy fall asleep..

Deacon and Phoebe share a book at Barnes N Noble..

Thank you all for your continued prayers and support, letters, e-mails, care packages…we are blessed to be loved and cared for by so many.

~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.

12 responses »

  1. What an awesome God we serve! Even in the bad times Phoebe seems to know that God is still in control!!! She is such a fighter…Praise God for that!!

  2. So glad Phoebe is doing so well. She is a trooper and has some pretty special parents on her team. God bless you all and may His hand continue to be with you.

  3. Amey, I can’t tell you the struggle I had taking treatments! It seemed so wrong to walk in on my own and allow them to put poison in my veins and to put myself on the table for radiation when everyone else had to get out of the room and shut the big 18″ thick door so they would not be harmed. I had scriptures I was quoting but it seemed so wrong. Then one day my mother-in-law called and said we need to be praying for the drugs to be successful in killing the cancer. That helped a little, but there has to be another way! Still praying for you guys!

  4. No one in my life has had an impact on my faith as powerful as this little girl. I can’t explain it. Her life is the best sermon I have ever heard. Jesus is in her, and I almost have to turn away from the brightness.

  5. Amey, thank you for sharing your family with us. I look forward to hearing from you through your posts and am always thankful when there is not much to report but the beautiful pictures you post of your family. There are no words to express the many ways Phoebe’s story has changed me. I am so happy I met Emily and DeeDee through leadership. They brought Phoebe to us so she could change our lives.

  6. Praying for peace and comfort during this round of chemo. Love these new pictures. Phoebe appears to be so happy being with her brothers. They are good medicine for her. Love to all, Pat Williams, a grandmother in Tuscaloosa

  7. I love listening to her sing and talk! She’s such a happy little girl and I continue praying for her and all of you each day. Big hugs to you all 🙂

  8. It’s good to see her asking for a drink! Goodness, the things you learn to appreciate.

    And it took me a couple of listens to notice her saying, “like a dining room the sky”. You go, girl!

  9. Bob recently preached several weeks about suffering, focusing on the sovreignty of God. Which means facing the idea that God sends suffering into our lives, not just allows it. As people wrestle with that idea, I mentally refer them to you guys. Causing pain, injecting danger into the life of one that you would clearly give your life to protect. Because there is a bigger enemy that Phoebe cannot see or grasp.

    One more small way that God has used your horrible ordeal for His kingdom. Even as I write that, my heart cries, “Unworthy.”

  10. 9th round. How many rounds of chemo will there be at this point, Amey? I know you’ve mentioned it before. I just can’t remember exactly. 12 maybe?

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