ICU: An Emotional Day….


Phoebe has had an emotional day and and so have I. Benjamin came down with fever and vomiting yesterday and then I started getting sick and when I woke up this morning, my throat was swollen, I had no voice and my face felt like it was going to explode. So, I didn’t get to see my girl today and from what I hear she had some weepy spells which in turn made me have some weepy spells not being able to do anything for her. We are a mess.

Ben is feeling better today and Nathan and I are battling this nasty cold or whatever it is. Phoebe has also had a fever today and they are taking more cultures. So far all of her cultures have come back clean, leading them to believe that she is still having some central fever.

Her chest and lungs have been very congested and she has not been able to cough it up the way she needs to because her muscle tone is out of shape and her lung capacity so diminished. They had her sitting up in her physical therapy chair for several hours today in hopes that being more upright would enable her to breathe more deeply and strengthen her lungs.

She is still having a lot of withdrawal symptoms and the weepy spells are all a part of that. She has mouthed “yes” and “no” but still doesn’t have a voice because of the irritation from the ventilator. She also turned the pages on her Grammy’s Nook book tonight to look at a story and that is encouraging.

To be quite honest, one of the doctors in the ICU came into her room a couple of hours after they removed the ventilator, assessed her while she was breathing erratically and her eyes were half mast and distant and stated that he thought the tumor was causing her to be like that and maybe this was her “new normal”. I flipped out. His comments have been the cause of a lot of tears these past 2 days and even though he recanted what he said after he assessed her again later and realized that she had a clear MRI ten days ago, it has left me shaken.

They are now saying that everything she is experiencing is from being on opiate pain killers and sedatives for an extended period of time and having withdrawals. She recognized her brothers today in a picture and whispered their names, so I know she is “there” and that the doctor was off in his assessment, but there is always the underlying fear of the tumor and his words planted a seed that I’ve been trying to dig up for the past 2 days.

I am praying that I wake up feeling better tomorrow. I am so afraid to get her sick on top of all her struggles right now, and yet she needs me and that feels horrible. If her groggy state continues she will have an MRI on Mon or Tues. They are expecting to see her wake up and become more interactive as these drugs leave her system although it will be some time still before she is weaned from the methadone altogether. The other important issue, is that she will start coughing for herself and controlling the secretions in her lungs so that her breathing can become clear and steady. If she clears up her breathing we will get to move back down to the Oncology floor on Tuesday.

Please pray for all the things I mentioned above and for our family to get well so that I can return to my girl.

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.

16 responses »

  1. Amey, I have to be very careful in saying this, but i have lost 2 brothers, a husband, mother and father and more. Bottom line….I do not believe the Drs. tell you everything they know. You have to be really strong and a bit pushy. My brother choked to death a few years ago on a piece of steak at a restaurant. His wife was 7 months preg. with another 4 yr old. They never let us know how bad he was until it was too late. Sorry, but I just see a big strength in you Amey and you may have to push your weight around a bit in a kind and loving way… if that makes sense. Also make friends with nurses that perhaps will tell you more than they should. This is how I found out more that I wished I would have known a couple days before.
    I was not so cool and the end and grabbed the Dr. by his lab coat and almost screamed…”What would you do if this was your brother?!”
    That’s all I have to say for now. You and Nathan MUST be in the “know” at all times. Perhaps make that extremely clear.
    We are still praying and believing each day that Phoebe will grow up to be an amazing Godly woman with many years left to be “your little girl!”
    Mary (Cally’s Mom)

  2. I’m so sorry Sweetie. We are praying for every one of you. Quick healing and Holy Spirit power and strength and comfort. Love you dearly.

  3. Praying for healing for the Mom, the Dad, the three Boys, and for Phoebe. Such a hard battle these past few weeks, so much strength and courage in all of the Fair soldiers. So many valley’s to go thru and so many victories won. Dear Father continue to take them through the climb out of this valley to witness your glory on the mountain peak. Keep them in your strength and allow your glory to shine through them as Phoebe comes out of the drug induced place she has been into comfort and security of those who love her. Restore positive attitudes, laughter and joy. Keep your angels of protection around each of them and the caregivers who are involved with them. Let Your Love and grace be recognized and received.

  4. Phoebe is a miracle in the making. So honored to be a prayer partner in this journey. Keep your mind focused on Jesus and not on the doctors comments. Praying for you to be restored to perfect health quickly and for Phoebe to make incredible progress this week.

  5. Well, first off, I am glad that our hope is not in man but God alone. God decides the “new normal” which I believe will be better than she ever has been before. Because that is the God we serve. He created that little body, so he sure knows how to put it back together again! The way HE intented it! We silence the voice of the evil one that would try to discourage you and your family! It is moments like these that people are going to be blown away by God, including that doctor! God, we trust you for a COMPLETE healing in Phoebe! God, heal the Fair family speedily! God, complete your work! Amen. We love you Fair family!

  6. It is a shame that some doctors sometimes must forget how impacting their words may be. I’ll be praying that God gives all the healthcare professionals incredible wisdom, and that their hands are His hands as they care for Phoebe. Praying for healing and peace/strength for you all.

  7. Hi Amey,
    Thanks for putting up this blog. I was wondering if you could add in a ‘follow me’ or ‘subscription’ link so we can have the updates delivered to either a blogspot address or into an email account. Thanks!!

    Praying and praying for Phoebe!!

  8. You are doing a great job despite the circumstances.
    I encourage you to keep proclaiming the blood of Jesus over her and every verse for healing over her.
    We are praying Phoebe thru as well.
    God bless you and your family!

  9. Hope you get to feeling better Amey so that you can be with your little girl. My prayers continue for ALL of you.
    *God is Good*

  10. Hello-I just wanted to let you know that a complete stranger in Colorado is deeply concerned and praying for your little one. I first began reading your story on Harmoni’s FB page for Eva-Camille; and I read their story because they are a friend of a friend. Anyway, I’m not sure if it helps in any way at all to know this, but I just wanted you to know that I am praying for your sweet girl, and my heart aches for you in this journey, and it rejoices with you in the victories. I also have a 2 year old, about to turn 3, and I just feel for you so much. I also have an 8 year old and a 5 year old. Just wanted to quickly let you know that I am praying, believing, hoping right along with you.

  11. Praying for strength, peace, comfort and healing. This journey will be a marathon not a sprint, so keep faithful. The doctors and nurses are on your side and want Phoebe to be healed as much as you do.
    Much love to you all ❤

  12. Dear Amey!
    I just saw your blog posted on a friend’s website. You don’t know me, but I serve the same Living God and Miracle Maker! I write this as I sit in the NICU next to my 4 week old granddaughter who is a testimony of God’s ability to perform miracles!! She is scheduled to come home in a few days!

    My heart goes out to you and my prayers are interceding for you as you walk this unexpected journey of grief, tears and triumph. May God grant you the grace and strength each moment as you accomplish His purposes. I pray that you see His relentless kindness each step of the way and that each of you grow in grace and favor as you marvel at the way God meets each of your needs on a personal and intimate level.

    My prayers will continue for you!
    A sister in Christ,
    Marian Groff from PA

  13. Dear Fair Family,

    The LORD is near to the brokenhearted. He has not lost sight of you, and He is the complete expression of love within you. He will not stop doing good to you, for you are his treasured possession. He desires to establish you with all his heart and soul, and wants to show you great and marvelous things. He is your greatest encourager, and the Father who comforts you in all your troubles. As a shepherd carries a lamb, so he is carrying you close to his heart. One day he will wipe away every tear from your eyes, and take away all the pain you have suffered on this earth. In Messiah his love for you is revealed. Cling relentlessly to Him, and know His peace and His presence. He will never abandon you nor forsake you. Sharing in your sorrows and your joys. Affectionately, Maria White

  14. Yesterday at Church, much of the message was about Hebrews 11. It always gets me when I really look at the HEROES of faith that I so admire in the Bible and what God either allowed to happen to them or flat out put them through. If I ever complain again let me read Job 1-2 and curse myself for even thinking I had it bad in the first place! I know that the road to knowing this mysterious God of ours is wrought with heart ache, suffering, and hardship, and in the midst of our trials it is SO confusing. But when it comes right down to it, it’s because He loves me so much that He is willing to do whatever it takes to get my eyes off of me and on Him. That’s where I see you guys. I don’t envy your situation, but I must admit I am in search of the kind of relationship with God that only something like this can bring. I wonder what MY ‘Phoebe’ situation will be when it comes and how I will respond. I’m really encouraged by how the Lord is bringing you through this because I see how He loves you so fiercely. Blessings to you guys and we are praying for you in PHX, AZ.

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