Farmish Thoughts and Round 5 Tomorrow

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So much to catch up on, where to start?

Round five of Phoebe’s protocol begins tomorrow. This marks the LAST ROUND in the induction phase ie: the really yucky part! After this round Phoebe goes on “maintenance” and although I don’t understand exactly what that means, I know that it means that this is where things are supposed to get better. I’m hoping it means more uneventful stays at home and a more predictable life with a girl who feels good! This past week with Phoebe home and feeling good has been wonderful.

Today we wanted to do something special that Phoebe would enjoy since she goes in-patient tomorrow, so we decided to take a trip to the farm in Waco @ http://worldhungerrelief.org  where we lived last year during our agriculture training. We moved out of our farm apartment December 17 and fifteen days later Phoebe was diagnosed with her brain tumor.

The World Hunger Relief farm is the backdrop to all my memories of a healthy Phoebe, so I wasn’t sure how I would feel about being back. In my mind’s eye I see her scooting around on her pink tricycle there, blonde curls aglow in the sunshine. I see her on Nathan’s shoulders as he stands by the fence throwing dinner left-overs to the pigs. I see Averic pulling her around in her red wagon while she squeals with delight. I imagine her bare little feet on the gravel road. The farm is the last place life was normal. And today it was perfect, being there. We were welcomed back into the fold with open arms and Phoebe relished being loved on by people who are so familiar to her. I could see her spirit swell and all I felt was joy for the moment, not loss for days gone by.

In true farmie form, our farm family prepared an impromptu meal of grass-fed burgers and farm fresh salad and we had sweet fellowship together. The boys found their little friends and took off running; they checked up on the old fort, visited the goats and made themselves at home all over again. It was spectacular to see them in their element, to see them having so much fun. Today was a gift, and Phoebe felt great. It was the perfect exclamation point on a wonderful two weeks at home!

Nathan and I also really enjoyed our weekend away at the home school conference. The workshops this year were particularly relevant to areas where we needed some light in our lives and we came away renewed and with new resolve in several areas. Benjamin met us at the conference for the chess tournament on Saturday and was pleased to win 6th place for his age group. I got to see both of my mother’s on Mother’s Day and enjoyed a lovely lunch out and beautiful flowers from my father-in-law. I could not have asked for a better weekend.

So, here we go with Round 5 tomorrow. Phoebe will have an Echocardiogram then she will receive her intrathecal (spinal) chemotherapy injection and be admitted to the Oncology floor. Tomorrow evening her IV chemo will start and continue over the next four days. This round she will be staying through the weekend so we can get her feeds through her ng tube on a schedule rather than her being on continuous feeds. This will allow her to be detatched from her pump at intervals throughout the day and also give her more of an opportunity to eat table food.

Praying for a smooth round and feeling grateful to God who sustains my girl…..

~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.

11 responses »

  1. *long sighhhh*…. smile… envisioning and remembering those very scenes you described here, and feeling a deep thankfulness for your day at WHRI. Oh, wish, I wish we could have been there. To see the kids there again, and to see the men “feed the pigs” together – and to sit together in the sunlight and watch Phoebe happy as can be. I am SO GLAD you visited the farm, and I will always be thankful for the time each of us had there.

    I’ll be thinking of you all this week in the last yucky round of this first phase. May there be grace upon grace for each day and each moment, and health and comfort for Phoebe girl.
    Love you, dear friend! ~Lacy

  2. So happy to hear about the weekend! She looks so precious with that smile at the table- such a sweet little girl. Will pray for a smooth chemo and smooth sailing in the chemo world from here on out…praying this gives you peace of mind for the months ahead. Phoebe is such a fighter and she knows all the love and support that follows right beside her! Hope you all get rest tonight and will be thinking of you all day tomorrow. We love you Phoebe and continue fighting and praying right along with you!!!

  3. I will be praying for an uneventful round 5. Thanks for keeping us posted and I’m so glad you had some time with Nathan and in Waco. Love to you all

  4. Can’t believe it’s up to round five. Seemed to take forever! So glad to hear of your great day at the farm and the pictures speak for themselves. We love seeing Phoebe drawing with water colour -wonder how precious littel Phoebsters pictures will be one day? Priceless! We will be praying for a smooth, fast round five with plenty of new options and people you will meet at the hospital! We pray for a fast healing of Phoebes muscles so she will be soon able to walk, jump and run! Blessings all over,
    Chris

  5. I work at a wildlife park in Piloit Point ..I would love to have your sweet family out! We have baby lemurs and with the new Madaskar movie coming out , I think the kids would LOVE it…pm me at dac1387@ swbell.net!

  6. So glad for everyone at the farm. I know you were able to relax a bit knowing Phoebe was being doted over & the boys were getting some rejuvenation as well. Always good to “get away” & so glad God’s grace allowed you to bask in the present rather than linger too long in the past. Hugs & prayers for the coming week.

  7. We were all so glad to see you and Phoebe and the boy’s at the Farm! Thinking of you this morning as you go in for another round. Much love,

  8. So happy that she is doing much better! I pray for her everyday and feel the emotion of all of your writings. Phoebe is amazing and a testament to all of us who stand in the gap with her…

  9. Still Praying and thanking God for this Supernatural MIRACLE…thanks for the update….<3 you all…

  10. So thankful that you had a wonderful week and awesome mothers day! Sounds as if you all were being fed and ministered from the angels and your friends to get you ready for this next round. You all can do it, because we know God is with you through it all!! God Bless!!

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