MRI Tomorrow

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We have had a great weekend with Phoebe at home. She has felt pretty good and had a lot of energy. She still complains of some pain from her urinary tract infection, but she receives her last dose of IV antibiotic tomorrow and I am praying that the infection will be knocked out completely.

I got to enjoy a morning out with a dear friend on Saturday while Nathan’s parents stayed with kids. We took in a local craft fair and when I walked out of the building I was so excited to see the Carter Blood Care bus parked in the parking lot. Finally I could give blood!

Seeing so many bags of blood drip into my daughter over the past several months has given me a new perspective on just how important it is to donate. I always say a little prayer of thanks for whomever’s blood it is, that Phoebe is receiving when she needs it.

If you see a Carter Blood Care Center or bus near you and would like to donate in Phoebe’s name, her account # is SPON051556. Donating in Phoebe’s name will give us a discount on paying for blood products for her. Thank you to those of you who have donated already.

Phoebe and the boys spent much of their weekend with their cousins who are home from Africa on furlough. It is always fun to see Deacon with his cousin who was born just five days after him. They are two peas in a pod and it warms my heart. Deacon asked me today why Phoebe is “the special one” and it broke my heart. I know he feels like her shadow at times and I try to be purposeful about spending special time with him, but her needs are so great that it is often out of balance. These are the kinds of things I really need grace for because I struggle with guilt over things I can’t control.

This has changed our family in ways I can’t even describe just yet, and I often worry over how the boys will process this as they get older. I have to remind myself that God will use this time and Phoebe’s illness for good in the lives of my boys and that He will be faithful to walk them through it. Before cancer at least there was the illusion that I was doing a pretty good job of meeting everyone’s needs as a Mom. Now I must totally depend on God to see the needs that I am too tired notice, or to busy to sense.

Anyway, what I really came to say tonight, is that Phoebe has an MRI in the morning. This is her standard, scheduled scan for her chemo protocol and although we don’t expect to find any new growth it is always a little nerve-wracking waiting for the Dr. to come meet with us over the results.
Please pray that Phoebe will not be so nauseous this time around. Poor baby has spent the last two MRI appointments vomiting for the rest of the day due to the anesthesia. If she gets to go in at 10 as she is scheduled, then we should have the results around 1 or 1:30 or so. Last time she got bumped back a couple of hours which is always possible, so we just won’t know until we get there.

Thank you for praying for our girl!

-Amey

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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. Glad road here you had a good weekend!
    Oh dealing with this stuff js hard on the whole family. Praying for your boys and this scan! God is giving you the extra measure to deal with this.

    Praying.

  2. I can only imagine how hard it is to be there for everyone! I can however imagine what it’s doing for them, those boys see endless love and you are teaching them how to stay together as a family and whoever needs the most care, gets it. They will be loving, caring and respectful men and hopefully they will realize that it’s not always about us- it’s about others! Not only do you tell them that, but your showing them!! And Phoebe will be forever grateful, and someday I am sure there will be those moments you can all look back on and have a good laugh. Just remember how loved you all are and how many people are out there praying for you. And someday- we will all meet and our babygirls can play together:) praying and fighting from Colorado!!!

  3. Let Deacon know that he is the special one because there are very few big brothers who can handle the responsibility of taking care of and watching over a baby sister who is so sick- maybe that will help. Praying for you all!

  4. Amey, you had a well deserved “get away” Saturday morning 🙂 I am happy that you were able to “run away” and have some much deserved “YOU” time! Praying that the MRI turns out perfect and God grants you comfort during that “long” waiting time for results. Praying that Phoebe is not sick this time. Extra special prayers for Deacon that he may understand he is SPECIAL, too!
    Blessings,
    Peggy

  5. So Wonderful you had some much needed time away on Saturday. Praying that the MRI results are good and Phoebe is not sick from the anesthesia this time. Be Blessed and have a Marvelous Monday!

  6. Following your family throughout this journey, I am always impressed with the your faith, love, and committment to the Lord, to each other, and to the people that God has put in your life to journey with you. The enemy will always question who you are, who God is, where God is, why He is “doing this to you”, etc. When I met Nathan on our mission trip to Gulfport after Katrina, the Lord told me that he was a man after His heart, and I have watched to see how your lives/ministries would unfold. You guys are great parents; never forget that this journey is shaping your entire family for God’s purposes. My cousin’s nine year old has Down Syndrome, and her other two children have also questioned why their brother is the “special one”. As they are getting older, we are seeing the fruit of God’s work in their hearts. Their hearts of compassion and mercy are far beyond those of other children.

    Allow God to take your boys through this difficult time His way, with NO GUILT for whatever you may feel is lacking on your part. You are awesome, amazing parents…. Your boys will rise up and call you blessed!

    In the words of a kids worship song that my kids used to sing, “And if the devil doesn’t like it, he can sit on a tack!”

    Love you and praying for you! Carol

    Sent from my iPhone

  7. Praying for your guilt to subside! I know what you mean though! Our 15 yr old son DJ was in an accident in July that resulted in having his left leg amputated and 50% of his body chemically burned and various other issues . We have 3 other children , 14 & 13yr old girls and a 9 yr old son who have been super in the recovery process, and super supportive and helpful but i always feel like my time is with DJ for dr appts.

  8. Amye,
    I am so glad to here that the cousins are together! What a special time for all. Prayers for Phoebe as she undergoes her MRI this morning. I know you are a great mom and each of you children feels special, in turn. What a wonderful blessing to have parents do dedicated to The Lord and his work. Let not your heart be troubled. John 14:1

  9. Dear Sweet Amye, I can now see your struggle in my own precious daughter. Nicki is so dedicated to tiny Gabiel and his needs and her commitment to him. I am blessed to be able to be here for Conley. But as a mother myself you do the best you can and that’s the best you can! So don’t doubt yourself, you are amazing and such an inspiration. My love to Nathan and those adorable boys. Kisses for Phoebe. Mrs. H

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