Her Light Continues to Shine

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It’s been a good day. As I type, I’m watching Phoebe make Play-Dough cookies and say “BEEP! BEEP! BEEP!” as she mimics her med machine. I can’t believe this is the same girl I was trying to soothe at 6:30 this morning while she was hallucinating and crying and agitated. The antibiotics are working and she is feeling better by the hour as she recovers from the C-Diff infection in her bowels.

Monday afternoon her fever was 106 and wouldn’t come down, she hadn’t had a bowel movement in several days, and she had quit urinating. Her tummy blew up and was hard and she was miserable. Given her most recent diagnosis of tumor recurrence, one of the first presumptions was that the tumor on her spine had compressed the nerves that control her bladder/kidneys/bowels. And often, people will quit urinating when close to death and we were told that she was actively dying.

When she became inconsolable and then lethargic we feared the worst, but knew we had to get her bladder emptied and take some pressure off. This is what we did at the hospice center in East Texas. While there, it became apparent that she needed more assistance than was available at that moment, so we went on to Dallas. An obstruction was found in her bowel and a tube placed down into her stomach to remove air and fluid that had built up and give her some relief. During this time she had a couple of diapers that concerned me. We were familiar with c-diff but Phoebe had never had it.

They cultured her for C-Diff and it was positive, and it made itself quite apparent over the next several hours with trip after trip to the bathroom. The antibiotics were started and immediately her tummy deflated and got soft again. Poor baby. She has been sleeping a lot and yelling at her brother, Averic when she sleep-talks. This of course makes all of us laugh. Today, the swelling in her face and eyes went down considerably and she perked up several times and laughed and smiled and played.

What a relief.

Phoebe got to travel in an ambulance today. We had a consult with a radiation oncologist at the radiology clinic to discuss radiating the tumor on her spine to give her some relief if the tumor was pressing on her nerves and causing discomfort. Based on the location of the tumor, which is really more of a nodule at this point, he thinks her recent back pain has been due to the C-Diff infection rather than the tumor itself. We will evaluate again after the c-diff infection is cleared up.

There are some other options in the future for using radiation as a palliative measure for tumor induced pain she might encounter, but I don’t feel like discussing those tonight, or with the general public. We get a lot of well-meaning advice, but honestly in our position, advice can be offensive at times. It implies that we have not done enough research, or looked at other treatment options, or considered other ways to see Phoebe healed. None of this is true. We researched our hearts out for treatment options and locations, we made phone calls, yes, even to Burzynski, we juiced , we used supplements, we looked into Gerson, we made ourselves crazy trying to make the best decisions for Phoebe. So, please, do not share advice. The cancer road is littered with “what if’s” and we just can’t go there anymore.

It looks like we’ll be headed home tomorrow and trying to work out a relationship with hospice that will best meet Phoebe’s needs and the needs of our family. Our hope is for her to be at home as long as possible, manage her pain in a way that enables her to enjoy life, and try to do as many fun Phoebe-things as we can. I don’t have the time or energy for the details just yet, but God’s peace and presence are with us in a real way and it is awesome to behold. Phoebe is precious as ever and I am so thankful she is feeling better tonight. My prayer is that her birthday party will happen in grand fashion when she is feeling up to it.

Thank you to all of you who have been visiting, praying, sending balloons and cards, cleaning our house, watering our garden and taking care of our animals. And thank you to those who have taken our boys out for some fun to give them a break. Our friends, fellow YWAM’ers and church family are a lifeline for us and we love you all.

With gratitude, Amey, for all of us, especially the Phoebster

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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.

37 responses »

  1. This little light of mine! Wonderful news!

    Sent from my iPhone Cheri Perry 1-888-249-9919 You can get everything in life you want if you just help enough other people get what they want. ~Zig Ziglar 1927-2012 Rest in Peace dear friend!

  2. What good news you have shared tonight! I love hearing that her Phoebe-essence is back and she’s making Play Dough cookies and beeping with her machine! There has always been something extra-special about Phoebe. As you said, her light contines to shine – that Phoebeness she was born with is exactly who she is. She’s sweet, sassy (in the best girly way!), loving, beautiful, smart, opinionated -especially with her brothers, and all things girl! It was a joy to have been part of the “Is that baby ever going to come?” group, and has been an honor to pray for her, and for you and Nathan, the boys…your entire family. I (we) will continue to pray for you on this difficult road you travel each day. And, about advice from others, you have all the advice you need in your hearts, given to you by a Loving God, who gave a perfect little girl to the perfect family for her. He has blessed you richly.
    Love and prayers,
    Carol and Tom

  3. Praying constantly for Pheobe and your wonderful family! Never doubt that You have done everything possible for your sweet girl! We can all see you have done the best you could! God bless you all during these days before the miracle healing, however the Lord does it.

  4. Please know that folks, in AZ, who’ve never met you but have heard about Phoebe’s story and believe in the power of Prayer are keeping her and all of you in our prayers. You are her parents and at the end of the day, you and Nathan know better than anyone what to do for Phoebe. Keep trusting the LORD to lead you and give you wisdom to make the decisions you face – regardless if others agree or understand 🙂 What a special family all of you make. GOD Bless You !

  5. Our prayers, as always, are with you guys! I know that you guys are doing all you possibly can for sweet Phoebe! May God guide you as you make these difficult and trying decisions! God Bless you, Brenda Rhodes-Sent from my iPad

  6. I just recently came across your story and I was telling my husband all about your daughter tonight and her battle with cancer. My husband works in the medical field, so he asked, “have they tried the Ketogenic diet, it has been shown to slow cancer growth”? to which I replied, “I don’t know, but she seems very smart by her posts, and she is able to fully explain all the medical/cancer info. So I would think she is the type of person that would have researched every possibility.” It is interesting that you ended up posting about this very thing. Glad your little girl is feeling better tonight. Praying healing for her in Jesus name!

  7. Thank you for a very honest and real update. I’ve been praying for Phoebe and am thankful to gear she is beginning to find some relief from the recent struggles. Praying today bring lots of smiles and memorable moments.

  8. Dear Amey, I’m sorry. I never wanted to make you feel that way. I only hoped to help when I asked about the doc in Houston. I’m sure that you & your husband are awesome parents. You are brave & courageous & I admire what you do for your daughter everyday. I pray for quality time with Phoebe & for her pain to be gone. I’m sure it’s very hard to make decisions but I know that yours are the right ones. God bless you & your family. God is sweet & I know He holds you all close. Love & blessings, Elaine

    • No worries Elaine, it wasn’t targeted at anyone specific. It’s just overwhelming to get so much advice at a time like this. A lot of people follow Phoebe’s story, so you can imagine the number of e-mails we get.

  9. I’ve traveled your road and know the fear and exhaustion you’re experiencing. I pray God heals your baby and gives you strength and comfort.
    Barbara

  10. Nathan and Aimee, I am not sure you remember me but I came over and looked at repairs on your home and help you get the right people for repairs. We have always kept up with Phoebe online , prayed for her and felt the need to send you a message. Nothing I can say would be sufficient for what your family is going through and your precious princess . I would however like to offer up anything we can do to help with your home or even if the boys can come over for some firearm training to get their minds on something else for a moment I would love to do so , you are in our prayers daily , Ray Barron

  11. Continued prayers for Phoebe and your entire family!! And I commend you for your comments about asking for people to not give advice!! This is your family and you do what you see fit them!!

  12. Prayers and hugs. Thank you for sharing your moments with others. The photos of you holding Phoebe are especially precious.

  13. Well Phoebe you are looking so good. Looks like its about time for another manicure with pretty new nail polish! So glad you feel better!
    You have the best parents in the whole world and you are such a blessing to so many but especially to your mommy and daddy.

  14. I continue to hold all of you in prayer. Thank you for sharing your story with all of us. That little gal of yours has a special place in my heart.

  15. I would still love for your family to come out to Sharkarosa and play with the animals. I work there and my daughter is the Director of Animal Operations. We could either bring some animals to you or your family could spend the day there, my treat. Just let me know. We have all been following you since our friend Emily weathers told us about Phoebe! Love and prayers in INK~ candy

  16. Of course her light is shining! God beams through this little girl. Continually in prayer for Phoebe and your family. Only God knows when He will bring her home to Him. I know you are enjoying life with Phoebe to the fullest every day. All of you continue to be an inspiration to the world through this season and challenges us to trust, obey and love each day in whatever season we are walking through. Thank you for sharing your life and Phoebe so that we can pray for a cause much bigger than us.

  17. So relieved and happy to learn that your sweet girl is feeling better. All of you are continually being lifted in prayer. (Love the snuggle picture and Phoebe’s hair!) May God bring you many sweet times and lots of smiles this evening. Blessings, Kathy Sanders

  18. Continuing to lift all of you up… Thank you for keeping us updated to whatever extent you are able or feel appropriate.

  19. We continue to pray for the Holy Spirit to fill you with the strength and peace you need, and for Phoebe’s pain to be under control and for a miraculous healing. I can’t tell you how much your posts mean to me. I have experienced many of the same thoughts and feelings that you have through your journey, but am not as eloquent a writer as you! Your words are so touching and real and I appreciate your sharing your road with all of us. I know you already know, but it was always a comfort for me to remember that no matter what choices we made medically, no matter if the Dr.’s did it all right, or all “wrong”, our daughter’s outcome was ultimately in God’s hands and her life was already planned out for a purpose – for His own glory. Know that Phoebe has done that – she has indeed brought glory to God and we are blessed for it. Our family & Trinity Presbyterian Church of Northern Kentucky are praying for you all…

  20. Who is that behind those Foster Grants? Don’t know if you remember that commercial. Likely before your time! I love the photo of her getting in the ambulance. Praying daily for wisdom, courage, peace, living in the moment. The bestest party ever as well. Love to all.

  21. I pray for all of you daily though we’ve never met. This is the day that The Lord has made…bless you for rejoicing in your struggles.

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