Phoebe Home and Other Thoughts

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Phoebe got to come home last night. Her sodium levels finally came down to a normal number and she is feeling better. Unfortunately, her body is still having a difficult time absorbing enough potassium. Her kidneys are dumping rather than absorbing the potassium and yesterday her Magnesium was low as well. She received IV Magnesium and we were sent home with more potassium supplement.

It is possible that the heavy duty antibiotics Phoebe received for her UTI could have caused this kidney damage. If that is the case, then it is expected that this malabsorption issue will eventually correct itself. If this is from the chemotherapy, then it could be permanent. Please pray for the former.
Phoebe goes in Tuesday for her next round of chemo.

From time to time people implore us to stop chemotherapy. Know that is a thought that crosses our minds quite often because the side effects are so nasty and often permanent. But, lots of people live with ADD and kidney issues and even endocrine issues; zero people live with untreated AT/RT tumor cancer in their brains and bodies. Unfortunately we have the task of chosing between some horrible options. These are decisions no one ever expects to have to make.

On the other hand, Phoebe is not elegible for radiation (a standard part of her chemo protocol) because of the location of her tumor site. Her tumor was seated in the part of the brain that controls your emotions, personality, hunger and thirst and pituitary function. If we were to treat with radiation, we would no longer have “Phoebe”.

We are thankful that radiation is not an option because then we don’t have to live with the possibility that we damaged our daughter in a way that changed who she was fundamentally. The choices that parents of brain tumor patients/cancer patients are forced to make are heart wrenching. Nothing can prepare you for these types of ethical decisions, especially with your own child.

When Phoebe’s chemotherapy treatment is completed in February or March, many of these horrible side effects will abate and her body will have time to heal. Barring a miracle, we will have to deal with her endocrine issues for the rest of her life, but we’ll take it.

Thank you all for praying for our girl and for expressing your concerns. Please know we have wrestled this through and continue to wrestle with these decisions on a daily basis.

Looking towards the finish line,

~Amey

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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.

20 responses »

  1. Please at least give Dr Bruzynski a call, in Houston. He treats all kinds of cancers, often after the conventional treatments have failed, and does so with alternative methods. If nothing else, he might be able to suggest some things like Immunocal or other supplement to lessen the negative effects of the chemo. I have done quite a bit of research in this area (on my own, for personal reasons) and believe in the body’s innate ability to heal itself given the proper nutrients and support. If nothing else, just make sure you have explored ALL of your options, not just the ones the particular drs you are seeing tell you about. Budwig, Laetrile, Vitamin C therapy, Gerson…there is even a method that uses baking soda with amazing results by a dr in Germany (I think it’s Germany?) Lots of stuff out there and some, sadly, with higher success rates than chemo.

    • Valleygirl, We gave Dr. Burzynski a call when Phoebe was first diagnosed. He has a 0% success rate with AT/RT Brain tumors, as do all of the others you mentioned. And baking soda is no match for a cancerous cell that grew into the size of a baseball in 90 days.

      • I know that people who suggest alternative treatments do so only out of caring and concern, but I wish they would put themselves in the shoes of the people who love and care about Phoebe in a way no one else can and understand that distractions from the route you’re following are just that. You already have so much demanding your focus that it’s almost unkind to suggest you explore anything else. Moreover, you’re obviously intelligent parents who have done due diligence in learning about Phoebe’s cancer and its treatment. You’ve chosen the one (likely the ONLY one) that’s shown promise. We who watch and wait, pray and hope should do that, give support when we can and respect your choices. You’re doing an amazing job.
        With love and hope,
        Melissa J.

  2. Amey & Nathan, we do not know what all you go through with these decisions you guys have to make. I can not imagine what it is like. But I know that you guys pray and ask God for his wisdom on everything concerning Phoebe and her care. I am so glad that you are Phoebe’s parents and you take great care of her. I pray that God would be with you and give you the right decision and wisdom you need. Love you guys and be encouraged. You guys are great parents to all your kids.

  3. Praying as you lean on God for wisdom for these decisions. It is tough but you are tougher with Him. Praying…

  4. Dearest Family,

    Please know we pray for you daily. My heart ached just now even more so when I read this Amey, I firmly believe in this saying from Mother Theresa, “words that do not give the light of Christ increase the darkness”. I can only assume that you received some words that were not life giving. From reading each and every post over this journey you have all been on I KNOW one thing for sure, you are a family devoted to the Lord and to your family. I can hear from your hearts that you have prayerfully labored over these decisions and that not one of them have been easy. I wish some of us could shield you form the pain of misguided words. You do not need to carry that as well. I pray your heart is lifted today, That you find time to rejoice and that you hear only His warm and tender words of affection, love and comfort for you all today. Please rest in the nook of His loving embrace. Praying for you..

  5. None of those decisions can be easy! I know you are asking daily for God’s guidance and wisdom, and that is the best advice to take! He knows Phoebe inside and out, and He knows what she needs so don’t second guess yourselves. Hang in there Amey and Nathan, you are an awesome example of really exceptional parents! Blessings and love to you and your family

  6. I’ve been watching sweet phoebe’s journey through Ian for quite some time and marvel at your faith and her strength. Any decision you make is in love. When you keep making them through prayer and love, you’ll never have to second guess yourself and be confident that every thing you’ve done is correct.

  7. I completely understand what you are going through and you are doing a wonderful job! How blessed you are to know that no matter what decisions you or the doctors make, the ultimate outcome is in God’s hands! You are being an amazing, loving, steward of the gift God has given you (Phoebe), but she is His and His plans and purposes will be carried our in all of your lives. I often find comfort in this knowledge since we have also had to make these difficult decisions for our daughter, Hannah. Today she is a 5+ year cancer survivor. Yes, we will track her physical health very closely for the rest of her life and I find myself feeling sorrow that she has kidney damage and possible future endocrine, fertility, and dental issues – to name a few. However, we are blessed to have enjoyed 5 more years with our her and that she is an adorable 7-year old, that loves everyone, especially the Lord.

    May God continue to bless you and give you peace, comfort and healing for Phoebe.
    Mei Ling Rumping
    cp: hlrumping

  8. We pray continuously for wisdom for the medical team and for all those who must make decisions in Phoebe’s care. So grateful that God has provided you all for Phoebe and we know He is in control of her future. He is faithful.

    Blessings,
    Joe & Tina Harris
    Athens, TX.

    “As you therefore have received Christ Jesus the Lord, so walk in Him, rooted and built up in Him and established in the faith, as you have been taught, abounding in it with thanksgiving.” Colossians 2:6-7

  9. Amey, Nathan,
    I Was praying and felt an impression that a day of deliverence will come, and it is not going to be too long in the scope of things.
    In the depths of darkness have hope.

  10. God bless you all. May God completely heal your precious Phoebe. I pray for that often.

    Your posts are so well written. I am so sorry for all you and Phoebe are going through. I think you are making the right decisions. God be with you all, strengthen, encourage, give grace, rest, and all that you need. He is there for you! He is there for Phoebe!

    Love and hugs,

    Mary Garborg

  11. Amey,
    Don’t give up or give in!!! You are almost there!! God IS a God of miracles..you
    have seen this already. There are so many people praying for you all. We will see this through with you.
    Blessings and love from Houston.

  12. My prayers ALWAYS go out to you and Phoebe! Never would I question what you are doing for her is the right thing. You seek God in everything you do, and I can’t even begin to know or understand all the details and just the ‘living’ of all you are going through with precious Angel Phoebe on a daily basis. God bless you and I pray for her strength, your strength and someday her amazing testimony! I love your family!

  13. No one can know how you feel and how terribly difficult it is for y’all to deal with whatever happens at any given time with Phoebe’s health, your boys, your LIFE, but one thing is certain, you guys are in constant communion with God and are relying on Him as you go through this journey. We are so privileged and honored to be able to pray with and for you.
    Carol & Tom

  14. This you know …
    You lift up your eyes to the hills, knowing from Whom comes your help.
    Your help comes from the Lord, who made heaven and earth.
    He does not allow your foot to be moved; He keeps you, and He does not slumber. He neither slumbers nor sleeps.
    The Lord IS your keeper;
    The Lord IS your shade at your right hand.
    The sun shall not strike you by day, nor the moon by night.
    The Lord preserves you from all evil; He preserves your soul.
    The Lord preserves your going out and your coming in, from now, and even forevermore.
    Amen.
    Psalm 121

  15. For the last 9 months since I heard about your journey and began following your Caring Bridge site, I have prayed for you both to have the strength and energy that only the Lord could provide. I had not really thought about how difficult it would be to make the numerous decisions you have faced, but also that so many would question those decisions. I will add to my prayers ones for wisdom in these decisions and the grace to restrain from letting loose on these people who continue to meddle. I know that part has to be very difficult at times too. You have been an amazing inspiration to me of how to keep looking toward God and His faithfulness in the midst of suffering. Thank you for your times of transparency. I know it’s hard, but the Lord is using you to bless others!

  16. I know you know this, but we love you. We ALL, out here in blogosphere, just love you. When we say the right thing and you feel better, it’s because we love you. When we say the wrong thing and you feel worse, it’s because we love you. You handle it all so well that I know it doesn’t even need saying.

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