Round 3 Tomorrow…

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Phoebe begins round 3 of her protocol tomorrow. I dread the oncoming days..watching her skin break down, the vomiting, the lethargy, reading the print-outs showing that her neutrophils are diminishing. Lord Jesus, please let this go well.

She had a wonderful day with her Daddy and her Mammaw. She colored, sat in her stroller, had physical and occupational therapy, blew bubbles. They do not think she has pneumonia, only that the spot on the x-ray is a tiny area of collapse because she is so weak and not expanding her lungs in full. The extra oxygen has been what she needed to bring her heart rate down and stop her body from feverishly working to breathe. She is also receiving a “just-in-case” seven day dose of antibiotics.

The next four days she will receive her chemotherapy infusions and in 7-10 days her blood counts should be down to zero. If she tolerates the chemo well enough and her sodium is level and maintainable at home, we will get to bring her home at the beginning of next week until her next round. This hasn’t happened yet, the stabilizing of the sodium levels soon after chemo, so I will not be in any way surprised if it doesn’t this time.

I don’t have many words tonight, just a fragile feeling and the bracing-myself type of dread that comes the night before a new round of chemo. Please pray for Phoebe. I know you are, and I thank you. I never rightly know where to thank people individually. In my former life I would have sat down and hand-written thank you notes, but time and energy fail me. So, please, to all of you who beseech the Lord on Phoebe’s behalf, who pray for our family, who make beautiful blankets, and send “I Love Neutrophils” t-shirts, to those who send generous donations for Phoebe’s care, and those of you who send cards and letters of encouragement, to those who send books and cancer information and resources, and those who make and send delicious home-made food, those who come to photograph Phoebe and our family, thank you, from the bottom of our hearts, thank you! You uphold us, you lend us your strength and walk the extra mile with us.

Holding on to the hem of His garment tonight,  ~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.

23 responses »

  1. Thank you for letting us be a part of this journey with you. We will continue to pray and storm the heavens with you. Blessings on you and Nathan and the boys, and especially Phoebe!

  2. Yes, thank you for sharing your heart with us. I would feel the same like you do. Just aware of the storm but still in front of it! God will be your guide. You have overcome storms with him on your side already that were so hard that there were almost no more words to pray – just worship. God is always there and his heart is breaking too.
    Phoebe is such an amazing girl! God must had a blast in creating her. She is sweet and strong, tough and cosy and a miracle!! So many people like us you have reached by heart and it´s our pleasure to walk the extra mile! Take courage and let´s go for round 3! LOL
    Chris

      • The optimism takes our family through life already (our girl is born handicapped – deaf) and his has a long way to get her speaking. She is still learning and God showed us how to live on his grace everyday. Of course is this not compareable with the Fair´s family story but we know ups and downs have been plenty of times to the hospital and Luisa had brain surgeries too. God was always there he carried us all through it! He was whispering in my ears when I got harsh news and he was holding my hand when I was sitting in front of surgery. He was strenghten my husband and giving us grace.
        And guess what – by today Luisa can speak pretty well. She is a bit late compared to kids same age but she´s taking on.
        This is what Phoebe will do one day – live her life outside the hospital! God is good!

  3. Oh dear Amye, no thanks are needed. I count it a blessing to pray for Phoebe and her family, and to have access to her story. How wonderful that so many are supporting the Fairs in so many ways. I promise to ferverently pray for Phoebe as the chemo begins again. What a long, hard road you all are traveling. Your courage and faith amaze me. God will continue to give you strength. I pray your little Sweetness can return home soon!

  4. I just wanted to be sure to send my prayers to Phoebe and the entire family. I will continue to pray for strength, energy and health for everyone there who is donating their time and energy to such a precious little girl. Thank you for taking the time to keep us updated. In my thoughts and prayers always…

  5. Praying for Phoebe and family to experience a smooth ride with round 3 … Sending hugs, strength & comfort to all of you! I will be praying hard and often ….

  6. Hold on sweet Amey…God sees your heart and sees your pain. Just hold on to the words your daughter spoke to you weeks ago. Mommy I am a Miracle……God is walking with you. And many of us is are holding u up in prayer. Rest in that. Let Jesus and all of us carry you in those time of weary…..what a fitting week. Jesus went to the cross for all of this. Hold on. We know you are. Joy comes in the morning. It’s coming! Cont to pray each day.

  7. Prayers galore today as we head for this next step in Phoebe’s care. My the Lord’s presence be felt and may there be angels among you to comfort you!~ May Your light shine for Christ so that others can see Your strength – Amey and Nathan – I cant imagine how people do anything in life with out the presence of God in their lives – but if you can be in instrument of His Peace and Comfort – may others seek you, and ultimately – our Lord Jesus! Expecting and praying for miracles as we bang on the doors of heaven today on Phoebe’s behalf! Love and prayers from IL ~ Marcy ~

  8. You take my breath away! Whenever I read your words your heart just SHINES through. You’re a mom-warrior. There is nothing like the total sacrifice of oneself for your child’s well-being. You are at the very epicenter of that battle…giving your all for your baby and your family and your God. We stand in awe of the glory of God that shines through your family in the midst of this battle. Don’t thank us ~ We thank you! Thank you for shining the light, asking for our prayers, giving your all, and for throwing yourself on the Rock (Matt. 21:44)! You will NOT be crushed.
    May the Lord bless you and keep you, the Lord make His face to shine on you, and be gracious to you. The Lord lift up his countenance on you and give you peace. Num. 6:24-26

  9. Isaiah 43:1-3
    DO NOT BE AFRAID – I will save you. I have called you by name – you are mine. When you pass through deep waters, I will be with you; your troubles will not overwhelm you. When you pass through fire, you will not be burned; the hard trials that come will not hurt you. For I am the Lord your God, the holy God of Israel, who saves you.

    At the foot of the cross we kneel and hold precious, beautiful Phoebe up for the Lord’s healing touch. May you feel His strength and comfort and know that you are not alone.

  10. Most things get less scary after you have had some experience with them. Not so chemotherapy. But Phoebe is in a good place – the palm of a very big Hand. Keep on walking.

  11. praying for you…listening to you and relating with the former life of not being as busy. We continue with many doctor appts, and therapies and we are grateful as you are for the ‘good’ we could not have seen before. Praying for you this week Momma as you walk through all of this as a family. I will be blowing prayer kisses your way when I drive my April 11 for our next appt. Love to you all! My Victoria has something special she is doing for you. I can’t wait until I can bring it to you. My Alissa is making packages with donated sllightly used barbies and new barbie clothes she and her girl friends are sewing and small sacks of cars for boys for Phoebe and all her friends on the oncology floor. I will call Allison in social services and find out how many kids there are. I love how my kids are learning to love both from our situation being there and now the honor to pray for all of you and love you with special ways of care. Maybe I will be able to bring your gifts when I come..if they are done I will do it!
    .

  12. “Come to me, all you who are weary and burdened, and I will give you rest. Take my yoke upon you and learn from me, for I am gentle and humble in heart, and you will find rest for your souls. For my yoke is easy and my burden is light.” Matthew 11: 28-30

    This verse came to me as I read your post today! All I know is to give it to Jesus and He will take the burden from you. I am praying Amey and know God is listening!! God bless

  13. So many blessings in disguise in our daily lives. I needed to be reminded! As is says in the old testament , there is a time for everything, tears included. I can not imagine how you feel going through all this. I can only pray for you to have courage and strength and most of all comfort. Blessings on all of the Fair Clan. Extra prayers these next few weeks that this round of chemo will be easier than the ones previous. May God’s healing be evident so that you may rejoice in His good work!

  14. Praying for Phoebe Girl from the top of her head to the soles of her feet. Before, when I have said that, I never really thought about the soles of feet needing prayer. Now I know better.

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