ICU: Hope

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I am still at home. I planned on visiting my girl today, but the nurse advised it was better to stay away and that I couldn’t touch her if I came up, so I stayed back. I think it would have upset her to have me in the same room but be unable to touch her. I am praying that I wake up tomorrow symptom-free!

Phoebe and the boys after the goat had twins. This was just a few weeks before the tumor was discovered.

She is having more withdrawal symptoms: agitation, restlessness, inability to sleep, but that is to be expected as her body to adjusts. She otherwise seems content and is improving each day. She will speak if you ask her to repeat after you, but otherwise it seems like her throat bothers her too much talk and she doesn’t have much of a voice when she does from the vent being in her throat for so long.

Our oncologist said that her breathing pattern is back to normal, it’s just labored and is most likely a result of her swollen tummy (yes, still dealing with that tummy) and her congestion. We have been concerned about her stomach issues from the get-go because Phoebe’s main complaint in the weeks before she was diagnosed with the tumor was her tummy pain. About a week after her brain surgery, her abdomen started bloating and it has continued to do so off and on, causing her to take shallow breaths which in turn caused a partial lung collapse. Now we are still dealing with this stubborn issue and are hoping to get some answers.

We will have a meeting on Thursday with the ICU team and Phoebe’s Oncology team to discuss her transition back to the Oncology floor. Her doctor has mentioned that we will be able to take Phoebe home for a bit after she gets more stable and I get giddy just imagining her here in our home! Today in the car Deacon said “Why do I always have to sit back here alone?”. His older brothers were paired up in the front seat and it’s not always that way, but it reminded me  how much Deacon’s life has changed in the past 2 months. He and Phoebe were the dynamic duo and I know he misses his playmate.

Tonight at dinner Deacon offered the prayer; “Dear God, please help Phoebe have a good day and be good and please touch her.” It was so sweet. Nathan said he thinks Deacon’s prayer life is almost entirely devoted to Phoebe. He misses her so, and I miss her for him. I know when she comes home the boys are going to be climbing over each other to play with her and show her her room and all the beautiful blankets and toys that people have sent to her.

I can’t even imagine bringing her home! I hate seeing her unused car seat in the garage every time we pull up to the house, and the empty seat in our van. What an incredible feeling it will be to have all four of my babies in the car at one time! I have so much expectation  it makes me nervous to hope she can come home because I don’t want to feel let down again. BUT, I will not fear bad news! God has taken good care of her and I am so grateful that I am writing about Phoebe coming home, instead of sepsis on this blog tonight!

We have MUCH to be thankful for! Thank you for your prayers and posts these past few days, sometimes they reduce me to tears the words hit home so well.

~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. I love this in the blog format! And I love the pictures even more! Thinking about you and Nathan and the munchkins all day every day. Praying always. Love you tons!

  2. My heart feels with you Amey, the mother heart for her child never ceases to amaze me…..God is sooo good to give us that compassion and love for our children..I know your faith is strong in Him..I just want to share a quick memory with you. My daughter weighed in at 1# 11oz….Dr. said no hope for her, I told them God will take care of her…one night they told me she had lost 3oz, making her 1#8oz . All of a sudden I had a quickening of fear, I reached in my purse and pulled out my Bible, it opened to Is 26:3″ YOU WILL KEEP HIM IN PERFECT PEACE WHOSE MIND IS STAYED ON YOU: BECAUSE HE TRUST IN YOU” I’ve never forgotten that verse since!!!!! Janetta was in the hospital 85 days , when I got to bring her home she was 4#11oz (PERFECT) God is no respecter of person , He did it for this mother and He’ll do it for you Amey……God is sooooo goood, am praying everyday for Phoebe and all of your family…have a blessed week:)

  3. Hi Amey,
    Praying you will feel better tomorrow and will be able to see Phoebe. I can just imagine how much you ache to be with her. God is good and there are reasons behind everything. I hope and pray He will reveal them to you soon.

    Praying and praying,

  4. Praying that God will give the doctors wisdom for the pesky tummy trouble.
    “But if any of you lacks wisdom, let him ask of God, who gives to all generously and without reproach, and it will be given to him.” James 1:5
    “When I am afraid, I will put my trust in You.” Psalm 56:3
    Love the photos of those sweet little hands and feet gettin better! Praying….

  5. Good morning,
    We are so glad that Phoebe is doing better all in all. Nevertheless we keep on praying strongly that the doctors will find the reason for all this tummy trouble. It is so weared that it keeps on bugging and hurting Phoebe all the time!!! So we will concentrate on it that God will give wisdom and knowledge!
    I am excited to hear that she might move soon down to oncology floor. This will make it so much easier for you all!
    Amey, when you were writing about all your feelings with having an empty car seat and a room full of toys waiting on her I felt so much touched and reminded. At one point I was so afraid about Luisa´s future and how her life is going to be. Of course we were never in your and Phoebes shoes. We are talking here about how much she would be dissabled. I dared to think positiv to be not dissapointed in the end. But I was shown by the Lord to step out in faith – dreaming and whishing whatever I want for my girl.” I have not given you a spirit of fear” is what I´ve heard.
    Nowadays, three years later more than I ever dreamed of became true! Luisa is dissabled but the Lord turned it all to good. She is so special in the view of people. All the people that know her story can´t believe where she is standing now. In about one year she will probably go to an regular school!
    The people blame it on us – the parents – we blame it on the Lord! He is doing a miracle in her and we recognized how specific and special he has created her and her gifts.
    Phoebe is created very special too. And as you know has the Lord many people burdend like me to pray for her. I have never ever felt so much drawn to prayer than in her case. He has mighty plans for her and for your family. I keep on repeating but maybe you need to hear it again.
    Bless you Fair Family and have a good night sleep. We will guard and pray.
    Chris

  6. Amen to all of those thoughts. May her tummy get smaller avery day. And Amey, that picture says it all about your kiddos. I love it.

  7. I think you should get Phoebe’s car seat out if the garage, sanitize it and put it in your car. She will be home before you know it! Walk by faith not by sight. Don’t let fear crowd your heart…
    Praying for tummy resolutions and withdrawal symptoms to subside.
    XO

  8. I will continue to pray, but being specific about her going home. I know we serve an Awesome God knowing how Phoebe is doing! Working as a respiratory therapist, I am very well aware of how God totally took care of her through the Sepsis and even from the beginning of this journey. Praying for you to be symptom feel, so that you can see her tomorrow.

    In His Service,
    Susan

  9. 1Peter5:10
    I could not copy this verse from my phone but it made me think of you. God bless your family. I know that Phoebe will have a wonderful story to share after all of this.
    Still praying,
    Marsha Perry

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