Learning To Navigate

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I just figured out that Nathan I spend only 3 nights a week in the same place. Two of those nights are after one of us has pulled an all night hospital shift. To say that cancer is tough on marriage is an understatement. We pass like ships in the night and when we are together we are exhuasted physically and emotionally. Tonight I ask for prayer for Nathan and I. We need grace for this new life and the battle we find ourselves in.

Phoebe seems to be doing well so far with this round of chemo. We are just coming in to the scary part of her chemo cycle where all of her blood counts drop and her neutrophils get squashed so the next few days we will really be watching her closely. She is doing well with her new bi-pap machine at night. This helps expand her lungs beyond her limited ability and gives her a break from having to work so hard to breathe. We have also noticed a small improvement in her muscle strength since she has been on the machine, presumably because she is conserving her energy by not exerting herself so much to breathe. She seems happy and playful and is doing great with all of her therapies. Her sodium levels have been high and she has had some vomiting, but on the whole, she look good. She spent an hour and a half in the playroom today and has been asking to use the “big-girl-potty” and those two things tell me that her energy level is great!

Today, as part of her chemotherapy she was scheduled to receive a drug called Vincristine. Vincristine takes a big toll on muscle strength and since her respiratory status is so weak and her diaphragm muscles so puny right now, we held off. Neurology is going to assess her to see if we can pinpoint the origin of her muscle weakness. It is typical for chemo patients to be weak, not typical to lose their entire ability to walk and breathe well. In other words, the Vincristine does not usually cause this degree of atrophy and her respiratory status in particular is very concerning. Please pray that we would be able to get to the bottom of this. We do not want to deviate from her chemo protocol, but we do not want to give her a drug that will completely knock out her ability to breathe on her own lest we find ourselves back in ICU with Phoebe on a ventilator again.

The boys are doing well. Today it was Averic’s turn to go to the hospital with me and he climbed in bed with Phoebe and played games and watched Veggie-Tales  with her all morning. It was sweet to watch. I think it’s less overwhelming for her to have only one brother there at a time and it also allows them to have some special one-on-one time together. Nathan is with Phoebe tonight and I am with the boys. The weather has been beautiful lately and it makes me want to go on vacation. It has been difficult to have a very small radius of operation…I get nervous thinking about being far away from the hospital and yet I wish we could all just go away somewhere together and have fun. Fun is not the same now because life has an under-current of constant concern that dogs me constantly.  The only time I am free from that is when I sleep, and even then my dreams are often cancer ridden. This is another area I need prayer for.

We trust that we will see His goodness in the land of the living, we see it all the time, we do not doubt Him, we just grow weary in this stretch and need a new way to navigate this treacherous landscape.

Thank you all for coming in to the trenches with us,

~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.

14 responses »

  1. don’t ever feel bad asking for prayer for this stuff:-) I am praying for you tonight as I go to bed that you will have a peaceful night and that the Lord would renew you and Nathans strength! Praying for freedom from worry/fear and for intimacy between you guys in the midst of not being able to be together! Loving you all and praying for you tonight:-)

  2. Scarlett had vincristine, too. She was lucky not to have too many complications from that specifically, but the one side effect I heard about most was bone and joint pain. I hope the docotrs can get some answers soon so that you are back on the protocol schedules ASAP.

  3. Amey, I am no medical expert in any shape or form. But I do have a question. In several post you mentioned Lumbar Punctures. I am not exactly sure what they are but I vaguely recall it having to do with spinal fluid and such. Is it possible that during one of those procedures her nerves to her legs and possibly her abdomen were effected? My father had an epidural as part of a surgery he had and as a result had some neuropathy on his left side almost as if he had had a stroke. It was never confirmed but it wasn’t present prior tho the surgery.

    Regardless I know how difficult it is caring for someone who is ill on a 24/7 basis. You and Nathan are doing a great job and yes you both need to pay attention to your relationship. My prayers are for the both of you to have quality time together even if it is in bits and peices. “this too shall pass” and God will see you both through this. He is doing a good work in your family and in those you come in contact. You are amazing in your faith and the love you have for the Lord and for those around you. May you continue to feel God’s blessing and stand in awe of the small miracles that occur around you daily. My prayers are continous Your situation has reminded me how important it is to stay in communication with the Father and include Him in every moment of our lives., Thank you.

  4. We have had some sickness going through our house recently, just little normal childhood viruses. However, the first few hours of trying to figure out what they have or what is going on has kind of stressed me out. Then, I remember you and little Phoebe. I can’t imagine having that feeling constantly. I know that a mother’s (or father’s heart) can only endure this with the grace of God. May He bless you and give you the strength and courage you need to go through this valley. And I am still praying for complete healing of little Phoebe! He is bigger than all of this!

  5. Dear Amey and Nathan,

    These two scriptures are hard for me and perhaps for you:

    2 Corinthians 12:9-10 (NIV) “But he said to me, “My grace is sufficient for you, for my power is made perfect in weakness.” Therefore I will boast all the more gladly about my weaknesses, so that Christ’s power may rest on me. That is why, for Christ’s sake, I delight in weaknesses, in insults, in hardships, in persecutions, in difficulties. For when I am weak, then I am strong.”

    James 1:2-8 (NLT) “Dear brothers and sisters, when troubles come your way, consider it an opportunity for great joy. For you know that when your faith is tested, your endurance has a chance to grow. So let it grow, for when your endurance is fully developed, you will be perfect and complete, needing nothing. If you need wisdom, ask our generous God, and he will give it to you. He will not rebuke you for asking. But when you ask him, be sure that your faith is in God alone. Do not waver, for a person with divided loyalty is as unsettled as a wave of the sea that is blown and tossed by the wind. Such people should not expect to receive anything from the Lord. Their loyalty is divided between God and the world, and they are unstable in everything they do.”

    I have trouble depending only on God without concern for all the trials of this world and this life. But I also have trouble resting because He has given me the capability or the endurance or the desire so I want to do everything I can do and then let Him do the rest. But sometimes, He wants us to stop being so strong, maybe to grow us up or maybe to more fully rejoice in His strength instead of our own.

    Matthew 11:28 (NIV) “Come to me, all you who are weary and burdened, and I will give you rest.”

    God, I feel like You are yearning for us to come to you and climb up on Your lap, rest our head on Your shoulder and let You rock us just like the loving parent You are and you have taught us to be. Help Amey and Nathan to allow themselves to rest in You and allow You to provide even when they can still do it themselves. Bless their time together and help them to connect in ways they haven’t thought about before. Help them to be the children for a while, knowing that You are in control. Help them to decide to come to the end of their strength and endurance before they are forced to so You can step in and give them the gift of Your power. Please, Lord, stay close to Phoebe as she enters her weakest and carry her through supernaturally and show that it is Your power! Thank You for being who You are and for being our everything. In Jesus precious name I pray, Amen.

  6. Amey I will pray all that you ask for your family and for Phoebe, but I want you to consider a divine paradox: Jesus is literally there in that room, watching Phoebe with delight, then weeping when she struggles with pain and discomfort, as He does when the doctors confer in the hall, thinking they’re out of earshot. He made her to fill her with His love; now she is filled with disobedient cells, toxic medicines, and suffering. He offers us no calculus to make sense of it; Only He understands it. When our little girl died, there was no making sense, no bargaining. But over the years, God has spoken profoundly about loss and compassion, things He always has, He who could have freed the Baptist from jail, Lazarus from death. He has even watched me throw things around and curse my life and Him, without cutting me off, or telling me to shut up. He’s amazing.

  7. As your prayer warriors we’re honored to stand up for you and your family! We will pray for the needs you mentioned and anything else God will put on our heart! This is the reason why God raised us. God has the plan – he put so much urge on my and all the Communities heart! Your family is constantly on our mind – that’s for sure God’s work! He will be strengten you and be yours and Nathans hiding place. We pray for love, comfort and grace to flood your family! Have courage – if he is for us you will not stumble or fall! He is the Almighty One, God of Peace and Love -and you are his children (like we are). He will heal Phoebe and send you off, far away from the hospital -One Day!
    LOL. Chris

  8. Praying for you all Amey. Please, don’t ever worry about requesting specific prayer requests or for being heavy. We are here to support and intercede for Phoebe and your family. We want to know how best to pray for you.

    Praying and praying,

  9. Please dont ever feel the need to apologize for your feelings. What you are going through is huge – catastrophic on so many levels. Those of us who are praying want to know EXACTLY how to pray, in order to help you and your family come through this trial with strength, and in order to see prayer answered directly! We are His body, and we cannot intercede effectively if you are not transparent. I feel honored when you trust us with your deepest struggles, and when my heart breaks for you (which is often!), I can pray for you with great fervency. As a mom, I am compelled to support you in prayer because you are living through one of my greatest fears. And I feel priveleged to be on your support team. 🙂

  10. Dear Amey, prayers are being lifted up all over the globe for you and your precious family. We have an amazing, awesome God, who can do exceeding abundantly, far more than we could ever ask or even think.

    yours in Him

  11. Amey and Nathan, I am praying for you guys. I know you know this already but just to affirm you in it, a required part of your job is to take care of each other, even though you feel it rips you away from the boys and Phoebe and makes you feel guilty. You take care of them by taking care of each other too. It is ok to compartmentalize your life bit, and pretend to be ok (even thought you know you aren’t) with each other. I am praying for you both and for some joy and “fun” even while in the valley. I admire you both so much!

  12. We are always praying. You’re never alone.We believe in his victory
    “And the peace of God, which passeth all understanding, shall keep your hearts and minds through Christ Jesus.”
    Philippians 4:7

  13. Amey, thank you so much for being real and sharing what it’s really like to go through this with your family. Your realness helps us to see how God has met you right where you are, and shares Hope with the hurting reading your words. We are so thankful for the internet, and the ability to join you praying for Phoebe and your entire precious family. The last few days caring for my husband after surgery has me thinking and praying for you even more. Your faith has inspired me (and so many others!) to rely on God even more than we think we can. To trust Him with all the hard stuff in life. You are an inspiration! Know you are covered in prayers for your marriage, family, and especially your precious Phoebe. We love you all! 🙂

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