ICU: The Marathon

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My Ronald McDonald House bracelet is tattered and about to fall off. I have kept it on my wrist since the first unbelievable week of Phoebe’s ordeal in January. I’ve been reluctant to take it off, I don’t know why..maybe keeping it helps me believe that this is all still new and not really my life. Like this is something we’re just going through that will be over soon and life with Phoebe can resume as normal.

But I know better. The bracelet will fall off, the clothes in her closet will be too small for her to wear when she actually gets to wear clothes again, her hairbands and clippy bows will sit in the bathroom drawer for a long time to come, obsolete without hair to fix up. I hate that time is just moving on, that I brought her to the hospital January 1st terrified that she had Meningitis only to find out she had a brain tumor. I brought clothes for a two night hospital stay. Now I’m reminded daily that this is a marathon, not a sprint. I want the sprint.

This morning when I arrived at the hospital Phoebe looked dehydrated to me. Her eyes were sunken in, the skin on her face was flaky and she looked more sleepy than usual. Her heart rate had been high last night and continued on into the 180’s today. I suggested last night that I thought she needed more free water since her sodium was also on the high side. They disagreed.

Today they decided to give a little free water but I still thought it wasn’t enough. I mentioned dehydration again. So the day went, physical therapy came and Phoebe was fussy, a bit resistant and hard to wake up and engage, her sodium climbed a few more numbers, her heart rate continued at 180 even after Morphine. I kept putting all the facts next to each other and coming up with dehydration as the cause for her elevated heart rate. Before I traded shifts with Nathan I talked to our nurse and expressed my opinion one last time that she was dehydrated.

Nathan just called to tell me that her sodium had shot up to 162 and they decided to give her the maximum amount of free water because she’s dehydrated. Her heart rate is down now from 180 to 155. It’s frustrating to me that she had to spend last night and today struggling to engage, struggling with her physical therapy, struggling with her heart rate because of something so easily remedied. It’s hard to see what the problem is and not have the authority to fix it, especially when it comes to taking care of my own child. These are the little details of our days that wear me out. These are the things I think about while falling asleep and the concerns that bolt me upright in the morning texting Nathan at the hospital to see how she did through the night. Oh to be consumed with all these details is wearisome. How can this be a marathon? How can there still be so far to go?

I don’t want to be ungrateful for the opportunity to fight. Some families don’t even have that option. Some cancers are terminal without an option for a life-saving treatment. I am grateful for the chance to fight, and yet I am battle weary. The highs are much higher than I anticipated, and the lows are much lower than I expected. This is why I’m so thankful people are praying for us. I feel like the only thing I can pray these days is “help her Jesus”…”please Lord”. At a time when I would expect to pray a lot, all of my words fail me, and only pleas are left.

I am relieved that Phoebe’s heart rate was not an indicator of something more serious going on and that she will feel better as her body re-hydrates. Tomorrow morning she has an upper GI test and Barium enema to check her intestines and GI tract to make sure she doesn’t have any strictures or narrowing in the bowel that would cause her tummy to bloat up. Please pray for peace for her as she has the procedure. The tests will be lengthy and she needs grace.

Thank you everyone for loving our girl and praying for our family.

~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.

17 responses »

  1. God is the God of all comfort…And Jesus wept…I have no doubt that He weeps now with you…but not in fear certainly. He had no fears when He wept at Lazarus’ tomb….He knew what He was about to do…yet He wept. I love this….Our griefs, losses and fears are real to Him….He does not just sit in heaven and say “Get over it.” But come here all you who are weary and heavy laden and I will give you rest. Praying that He gives you rest….He understands the facts of the weariness…As your days so shall your strength be….We can do all things because He is in us, He is our strength. You are able to do what He wants you to do….not always all we want to do but His promise is that all He calls you to do He will enable…weariness is not a lack of faith…it is the reality of a human frame…Praying for strength for the marathon.

  2. I believe that when prayer condenses down to, “Oh God,” and nothing else, those may be the real-est prayers of all. Love you guys.

    • Amey-I agree with Judy. Those few times when all my heart could cry out was “Oh GOD” in brokeness were the times I knew heaven was touching earth where both realms filled me.

  3. Wow I agree with Kristen (above)! God is with you and in you! He will sustain you and give you hope! My heart aches for the pain on the long “miles” of this marathon you are running. Perservere and know you are all being lifted up to God Almighty!! Love to sweet Phoebe!

  4. Amey,
    Thank you so much for your willingness to share ALL of the ups and downs. The highs are so encouraging, and the lows are so important because they guide our prayers in depth and detail. Because of your willingness to bare your soul, we feel as though we are on this journey with you! I met Nathan and Phoebe once, and never met you or the boys, yet I feel as though I know you all. This helps me be specific as a watchman, and encourages the vigilence of all prayer warriors! Love to you all from Waco, and love and grace to sweet Phoebe!
    Cindy

  5. We stand with you in prayer, agreement and encouragement. I pray in Jesus’ name for God’s blessings , comfort, and power to be with you! As always praying for God to Heal phoebe and remove all signs of the cancer once and for all.

  6. Praying for you Amey. Keep fighting on behalf of Phoebe the medical staff just don’t quite know what to do with someone so informed 🙂 hopefully they will soon discover you to be a coleague of sorts. Marathons are hard so just set little goals they help keep you moving. Just one step at a time friend, one step at a time.

  7. Yes you are warriors and yes the battle is ongoing! If you are interested in history you will find out that most of the time a battle was won by little things going on the side. Motivation, rumors, food, the ground where the troops hit each other and so on. The German wall fell caused by a rumor one of the secretaries spread out! Can you believe this? So anyway – you are in there and it´s heavy and it´s getting weary on a day to day base. The cool thing is that God is ahead of you and goes abfront!
    I am amazed what wisdom he is giving you already in medical concerns. My future prayer will be fro nurses and doctors to see what you can see.That they get your wisdom and sight! That they will be able to see the “whole” aspect of Phoebe´s symptoms and appearance. This is a gift not every nurse and doctor has but it seems like you got it!
    We keep praying and sometimes my heart is overflowing too so that my words need not to come – God knows it already and praying in the spirit is powerful as well!
    Rest know well and may tomorrow be a good day for Miss Miracle in grace and peace.
    Chris

  8. Yes, I agree with Chris and Rayleen. My prayer is for God’s wisdom to break through those hospital walls and staff. I’ve seen for weeks that it is coming through you. I’ve just heard a great teaching on blessing, so I’m going to be blessing Phoebe’s doctors and nurses so they can come in line with God’s will and wisdom concerning Phoebe. And, yes, I believe they will begin to recognize you as Phoebe’s anointed mother who has not medical training, but God’s anointing and wisdom for this precious child. Blessings on you as well, Amey!

  9. Praying for our God to lavish His love and grace on your whole family and provide strength to make it through this day…one day at a time. As a mom of two small girls myself, my heart aches with you. I appreciate your transparency; it helps me to pray accordingly. Hang in there. You can do this!!

  10. We’ve been studying Romans in our Bible study class and I am reminded of Romans 8:26. When we don’t know what to pray and all we can do is cry out to God, the Spirit is interceding for us. We will continue to pray God will give the staff caring for Phoebe wisdom to know what is right for her.

  11. Amey & Nathan-
    I have experienced being bone weary in the battle. The cried prayer of “oh God” that to my intercessor’s heart just didn’t seem to be enough & yet it was perhaps the most pure prayer I have ever prayed. Your analogy about the sprint vs a marathon, reminded me of a time in my own life when God told me just that, “you can’t sprint a marathon.” the tactics and training are different, the running style is different.

    I thank you for sharing with us. We are praying.
    As I read other comments , they already summed up what I felt in my spirit….”come to Me Amey & Nathan who are heavy laden, 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 weary souls.

    God knows…..not only does he know the battle, but he knows how bone weary you are. May His rest overwhelm you today as He covers you all with His protective wings.

  12. No one your child better than you! Way to go to insist on them looking into hydrating her! I know you’re weary! God knows more! Nothing slips past Him! I pray for grace for ALL of you and peace! Also, that with every hour of sleep you receive two hours of rest! May He hold you ALL in His arms!

  13. Amey, one the prayer warrior on my distribution list sent this to me and asked I forward to you.

    Ileana Mansfield

    ===================================
    I am sad to hear the story about your daughter. 7 ½ years ago, my son was diagnosed with leukemia. He then had a secondary issue in which he was again treated with chemotherapy. He had a very unusual case and many, many complications. We were basically statues at Children’s Medical Center Dallas for over 4 years. It is a marathon, and we continue to deal with long term effects. The biggest issue we face right now is his cognitive difficulties. We work with him for 1 hour every day helping him in this area (this is in addition to his regular school homework).

    I know how hard this is and the helpless feelings, etc. I had to make peace that I was doing the best I could and that my son was receiving the best care. That is all we can do as parents.

    It is not easy, but it will get better, and you are not alone.

    Tanya Quinn

  14. It is the MOST frustrating thing to know there is a problem and no one will listen!!! I don’t pretend to imagine what you are going through, but I do know what it’s like to be someone’s medical advocate. I know the fine line you have to walk between being assertive and being “pushy”, of knowing in your heart that these people caring for your loved one are doing their best, and DO want what’s best for your loved one, but also knowing that they are missing something that is obvious to you. So very sorry that they didn’t listen to you…the power of a mother’s intuition should never be ignored.

  15. Amey,
    As I share your story and ask my friends to join in prayer they often post on my wall thinking it links to yours. I just wanted to pass along some of their messages to you. My prayers are with all of you throughout every day. I pray the Lord brings complete healing to Phoebe and continued strength to you.
    Mellissa

    Rose Platzer- Barker
    Amey,
    You don’t know me but I think about you and your family often. I am praying I your little miracle! You came to my mind when I was doing Devos and I thought I would pass on this reminder from Joyce Meyer. Blessings to you this day!!

    The Lord Is Your Strength

    We must realize that part of Satan’s plan for end-time believers is to make us weary. Daniel 7:25 gives a vivid description of a vision the prophet Daniel received regarding the last days: “And he ‘shall wear out the saints of the Most High'” (AMP).

    But God wants you to be encouraged. Romans 8:37 (AMP) gives Christians this good news: “Yet amid all these things we are more than conquerors and gain a surpassing victory through Him Who loved us.” ‘More than conquerors’ means that before trouble ever starts, we already know who wins. I like that, don’t you?

    We can purpose in our hearts to maintain such an intimate relationship with God through prayer and His Word that we are constantly being strengthened by the power of His promises. Intimacy with God produces strong Christians who can outlast the devil!

    Live your life totally confident in God’s strength and have no fear of the trials that can produce weary warriors and fainting saints. Remain strong ‘in Him’ and in the power of His might.

    Prayer Starter: God, You alone are my strength. I won’t let Satan make me a weary Christian, but I’ll remain strong in my intimacy with You

    Glenda Ade
    My niece Amy Rai lives a cross I believe your parents. I have been following your blog that Mellissa my other niece has been reposting. I pray for you and your family daily. I can’t even imagine what all you have been threw. But I know the lord is watching over you and your family. I am so waiting for the blog that says Phoebe is going home and she is fine.

    Linda Breeden Kuizinas
    Thanks so much for sharing this beautiful story of faith, hope and miracles.

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