Maintenance Phase~

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We are already home after two days of in-patient chemo and we will return to clinic tomorrow and Friday for two more “pushes” of chemo as well as labs.  So this is what maintenance phase is like? Wow! And the only reason we were in-patient for two days is so that Phoebe wouldn’t miss out on physical and occupational therapy while we wait for her home health therapies to get set up. Chemo is now an out-patient afair!

All day long people who have worked with Phoebe throughout the past 5 months were stopping by her room to peek in and say good-bye. Many of them watched and waited with us during those touch and go days in the ICU and seeing Phoebe as she is today was such a tremendous joy for them. Just watching their faces and seeing how much change they were seeing in her felt so good.

Saying goodbye to her Physical therapists and her Occupational therapist was bittersweet. Phoebe regularly asks ‘Where’s Erin?” or “Where’s Brittany?” when we are at home, so accustomed is she to having them be a part of her daily life. These people have become a part of our family and we are so grateful to have such a wonderful team of loving healthcare professionals  for this journey. They love Phoebe and we in-turn love them!

I’m sure we’re not completely free of the Oncology floor forever, but it sounds like from here on out most of our hospital time will be spent in the clinic in the infusion room or getting labs done.  It’s hard to believe we are out of the induction phase, there were times it felt like we would never be able to leave the hospital and care for Phoebe at home without all of that equipment and constant monitoring and the safety of doctors nearby. But here we are, and feeling so carried by God through it all.

We have so far to go still, 9-10 months of chemotherapy and lots of clean MRI’s to be had, but at least in some way it feels like more of life is happening at home now. Right now we are trying to get Phoebe back to eating table food and drinking fluids by mouth exclusively rather than taking formula by ng tube. She is now only on formula and water at night and off the backpack for the entire day. Her sodiums of course have been swinging around due to all of these fluid changes and the chemotherapy, so please pray for us as we try to get that all balanced out again. I have wished so many time that I could have a test kit for Diabetes Insipidus to test her sodium like the blood sugar tests that exist for sugar diabetes, but apparently it takes an act of congress to get approved for one of those…so we just have to wing it. I don’t get it.

The boys are doing great and Deacon is almost completely healed. Nathan and I are hanging in there although I can’t ever remember feeling more exhausted in my life. This is a different kind of exhaustion and it seems regardless of the amount of sleep I get, I feel wiped. I think we could both use prayer for that.

I almost forgot the highlight of my entire day, and I wish now that I would have taken video! I got to see Phoebe go from lying flat on her stomach to pulling herself into the crawl position and then pushing herself up to sit on her bottom all by herself! The new neuropathy medicine she is on really seems to be improving her ability to withstand more weight on her extremities. I was so proud and we had a big clapping, whooping and hollering session over that! I can’t wait to see her take her 2nd first steps!

I’ve always loved this one of Phoebe and Nathan…..

Thank you all for staying on the journey with us…we are tired and full of HOPE~

~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.

15 responses »

  1. My beautiful friends, I am praying for strength in your weariness, deep sleep and body, soul and mind rest. We are so glad to hear that Phoebe will be at home and we are praying for God’s covering in the midst. We are constantly praying for healing! Love you dearly!

  2. Amey, we are so very thankful to God for the amazing progress and we continue to pray that things continue to go smoothly for your family. Althought we don’t post often, know that we pray daily for Phoebe and your entire family. Don’t forget to take a little time for yourself now and then. God bless!

  3. Sweet little bean 🙂 You have done it! You have survived the induction phase!!!! So excited to hear she’s weaning from the tube, that her strength is improving and that Deacon continues to heal well. Praying for rest sweet friend! ❤

  4. So many prayers for you all! You are so loved and thought of by so many of us that you don’t even know. I love the updates and it brings such tears of joy and pain….praying you have a “normal” family life and that Phoebe is running around soon and that all levels are well. Peaceful rest will come with it all, I just have to believe it. Your post about her friend last night kept me up all night and I’ve been praying for that family. We love you Phoebe and will continue praying and fighting right along with you!!!!

  5. Just for tell you, that Phoebe is beautiful as an angel, and she’s every day in my little prayers, and I think of her in the mass a lot. You are a blessed family by God, and I send kisses for all from France !

  6. Praying hard for strength and progress for all of you ….. So happy to hear that family life is slowly but surely returning to the Fair household!

  7. Hey if there is anyone that can get Congress to act it would be you. You have a mountain mover on your side. Hope to see the boys and Nathan this weekend. And it would be my best birthday present ever if I could finally meet Miss Phoebe and wonder woman!!!!! So thrilled to hear such positive news. Loving thru Fairs, Mrs. H

  8. Aimee, I know we’ve never met but I feel as if I know you. Our family has your precious Phoebe on our prayer board and are prayIng and believing with all out hearts for a complete healing. I had to share with you a dream I had a few nights ago. In my dream I saw Phoebe a few years older with a full set of long, beautiful curls. She was laughing and playing with her brothers while a tv screen was scrolling family pix of you guys. A pic came up of her with no hair..the pic caught her eye..as she looked at the screen she let out the biggest belly laugh and said “Mamma! Look at me with no hair!!” That was my dream. Simple but so sweet. We are standing with you guys. We are believing with all our hearts that this trial will soon be a distant memory. It is so very evident to us all that Jesus is with you. His Grace is sustaining you. Weeping may endure for the night..but joy comes in the morning!!

  9. Having spent 2 months in the hospital, in congestive heart failure, getting a new heart valve… I know the closeness that comes to the hospital staff…one nurse sat beside my bed CRYING and begging me to get well after my 2nd surgery there! I know the fear of leaving that security and going home to do things on your own….. with a little reassurance from family. However, 20 (TWENTY) YEARS later, I am still going… there are weak times, but I am 57 years old NOW! So PHOEBE, I know if this OLD lady can do it, YOU have some amazing days ahead!!! What a wonderful example of what a Christian should be your entire family has been! GOD has SHINED in your life’s story!!! Continue going forward, Phoebe…and bring the rest of the family along with you for the jouney… GOD BLESS YOU all, and THANK YOU for letting me come along!

  10. What a wonderful post to read this morning. With tears in my eyes I’m praying for you to feel rested and for Phoebe to continue to be able to be at home as much as possible. That she’ll be able to soon eat and dring without any help from the ng tube and that the chemo treatments continue without a hitch. Such great news to hear, praise God!

  11. Rest will come back to you one drop at a time, and one day you will be surprised to realize you’re not exhausted. The Lord will watch over your life. He will watch over your coming and going (and you guys do a LOT of coming and going!) now and always.

  12. Dear Amey,
    Praise God! I am so happy with you that the induction phase is over. What a relief. Days spent in the ICU, on the oncology floor, in the hospital cafeteria… hopefully over for the most part. I love thinking of everyone saying goodbye at the hospital. A happy goodbye! I’m thankful for those people there you had to walk this journey with. A whole new kind of friends, I’m sure. Looking forward to hearing of Phoebe’s journey back to full time eating and walking on her own. Last time you mentioned wanting her emotions to level out a bit – has that happened? If not, take heart, young girls can be overly emotional without Phoebe’s journey. You wouldn’t believe the year I’ve had with Judah. I will pray for her emotions as well as her healing journey. Love you!!!

  13. Wonderful news! I am so glad to hear that things are moving smoothly and Phoebe is gaining strength AND Deacon is almost healed! Woot!

    Praying for strength and rest and the continued presence of God in your lives.

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