Mindful of The Miracle..

Standard

I won’t lie, today was tough. I hated every second of packing her bag to go back to the hospital, and watching Nathan wheel her out to the car to leave. I went back inside and cried. I cried while I made her bed, I cried while I put away her neubulizer, I cried while I picked up her little palet off the living room floor, I cried when I picked up her socks from where I tossed them on the floor last night. I held Averic and cried, I talked to myself and tried to keep busy with cleaning up. I hate cancer.

Then Nathan called from the hospital: she was in a good mood, she said “hi” to everyone as she was wheeled down to her room on the oncology floor, she seemed okay with being there. Her heart rate was in the 180’s, not acceptable. Her Oxygen saturation dipped repeatedly down into the 80’s, not acceptable. And her chest x-ray showed a little spot on her lung that could be pneumonia, not acceptable. I felt relived. Not that she was sick, but that we did the right thing for her and brought her back.

They commented that they were glad we brought her in because she only has 2 days until her chemo begins and she needs antibiotics in her system for 48 hours at least before being able to start that up. The Oncologists are uncomfortable waiting any longer to start round 3  because AT/RT is so agressive, so it is important that we nip any type of infection in the bud NOW and get started.  They will of course, wait until she is in a good, stable place before starting her chemotherapy, lest we have a repeat of her sepsis situation.

When I arrived at the hospital she was in good spirits, coloring and playing with playdough. She sat in her stroller for a while and watched cartoons and played ball and then she drifted off to sleep in bed. The antibiotics have been started and hopefully we can get that junk out of her lungs. I am sad that my girl is no longer  in the next room, and sad that our four days didn’t go as planned. And I am thankful for the magical time we had with her yesterday here at home. I look forward to the day we can take her to the zoo again and go places as a complete family.

It’s so easy to see clearly now, to be present in each moment of my life fully cognizant of what is happening, what miracles are passing before my eyes. Strange, I know, but I can look at each person in a room now, or even just my children and understand that in order for them to be there, laughing, interacting, living, going about the day, a million little miracles are happening in their body each second. The last 2 days Nathan and I have juggled the administering of seventeen medicines for Phoebe just to make her body work the way ours work. The human body testifies to His magnificence. I am in awe of the beautiful and intricate way He has woven us together and purpose to thank Him more for the delicate balance that He orchestrates in my body (and everyone’s) each day.

Phoebe is a miracle indeed and she has helped me to see that we all are. Living, breathing, co-creating, made-in-the-image of God, miracles. Let us not waste the gift or ignore the Giver who is worthy of our lives. Phoebe fights on for what we already posess.

“And the Lord God formed man of the dust of the ground, and breathed into His nostrils the breath of life; and man became a living being.”  Genesis 2:7

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.

21 responses »

  1. I’m so sorry you had to take her back, but happy that they will be able to treat this infection before it gets too bad. I’m grateful to God that you all had a wonderful day on Saturday, and I know that there will be many more good days to come. Love the picture of Phoebe and her dog, how cute is that? My prayers will be with you all, God’s peace and blessings to your family.

    C.O.L.E. Prayer Team – http://www.colesfoundation.org
    Debby Mooney, St. Louis, MO

  2. Hi Amey,
    This roller coaster ride is very tough and I just ache for you and your family. Phoebe is resting in the hand of our Lord and He is looking after her. It’s just so hard to give that control over to Him.

    I am glad that her transition back into the hospital was not traumatic for her and she is comfortable there.

    Praying for wisdom for the doctors and for Phoebe’s body to be able to fight this infection. Praying for the Lord’s hand and hold her gently and His healing breath to blow health and life into her body.

    Praying and praying,

  3. Wow. You have no idea the impact your family has had on my life. The grace and strength you are walking in is truly remarkable. You have helped me see the bigger picture of the miracle life truly is and I have a new gratitude to live each day to the fullest and enjoy every gift Jesus has given us even more. Our family continues to pray for your precious Phoebe. We look forward to the day that you get to take your sweet girl to the zoo..we will rejoice with you!! (and maybe we might even get to meet ya there someday..) Lots of love and prayers from the Rowland family.

  4. Praying for your beatuiful baby girl and for the meds to work prior to her chemo, for no sepsis and peace and comfort for you all.

  5. Hey Amey,
    Do you remember me? I am Debbie Phillips from Hawaii, and I am praying, praying, praying! I am a breast cancer survivor, and I am different than most people, as you are with Phoebe, as most people, do not have to go through cancer. Alot do, but most people don’t. I know the ups and downs, but unlike most people, and you are finding it out too, that you feel safest in the hospital. And I did too. That is where the nurses and doctors, helped me, and kept me alive, and let me know everything is OK, and if i needed anything, the hospital staff, would take care of everything. That is where I could rest, and also play.

    I want to tell you you did the right thing Amey. My precious Phoebe, as my own, prayers go out to her. Love your family, and concentrate on the all the great times you have had with her!

    Your boys will understand, and want, just like you and Nathan to do the right thing for their sister!

    Rainbows of love are coming your way, and I am glad she is being taken care of by a loving staff and doctors

    Praying for her fever to go away, and her sodium levels to level out, and this cancer to go away.

    Hang in there Amey, Phoebe, your 3 boys, and Nathan are my new HEROS! Take care! Love Debbie Phillips

  6. We continue to pray for you all, our heart aches for Phoebe and pray that she is better soon. Thank you for the update, wish I had more to say but I am a little speechless right now, so sorry for your pain.

  7. I thank God for the joy you experienced this weekend with your whole family home. And I have to tell you that as I follow your posts daily, I am constantly reminded to enjoy every moment of play with my own two kids, relish each smile and laugh they give me, and thank God for giving (lending) them to me. Life is so precious.

    Lots of love from your friends in Africa, right now in mexico on vacation.

  8. We are continuing to pray for healing and strength in sweet Phoebe. She has stolen ALL of our hearts and we love her dearly. We are upholding your entire family in prayer and we know our God is going to do great and mighty things through and in this. He is using you guys already. In the midst of such trials and tribulations. In your transparency you minister to us! Bless you in abundance!

    Love you so much,
    Charise

  9. As I sit here watching the curser blink over and over I still can’t come up with the words to describe how your story and this testimony unfolding before your eyes has greatly impacted my life. I’ve never seen such strength in a time where most would be weak. Your Faith has uplifted me. I spent all weekend reading your posts like it was a book. I’ll be keeping Phoebe in my prayers from now on.

    Much love,
    Heather, New Braunfels, TX

  10. Let the peace of God rule in your hearts this night. We call upon the Heavenly Host that Phoebe may rest under their protection.
    From your New Tribes fellow warrior.

  11. As I type this, I lay in a hospital room seeking to find that miracle in another son. You guys have been such an inspiration to our family. Thank you for your faithfulness and transparency. Because of your lives, the Harvey’s are challenged, excited about life, and grateful for the heart God has given each one of you Fairs.

  12. I shed more tears when you had to take her back too, Amey… there will be a day at the end of this marathon that she will be home. I’m so glad that Phoebe had the grace to go back and not feel sad… what a blessing and soothing to a loving mama’s heart. We are back in the hospital with you today in prayer and thought. I carry you all with me. I love you

  13. Dear Amey,
    Your post made my cry today. Thank you for everything you share. I love the picture of you pushing Phoebe in stroller in the yard in the sunlight. What gorgeous weather you had. I was also so pleased to hear that Phoebe was in a good frame of mind back on the Oncology floor. Such a precious sweet deary. I do not have the intense layer of grace nor the new sense of sight for life that you do right now… but I am hearing you and working to be mindful of the many miracles all around me each day, and to say thank you to our Creator. Right now, 10 paper boats with scribbly red smiley faces on them, and my kids smiling and making clicking sounds are my immediate miracles to whisper a thank you for. I will be thinking of you and your family this week, praying for you and for Phoebe Lou with her next round this week. I would like to request that you post your home address again for those of us who have a hard time relocating it. Loving you and staying connected daily…
    Lacy

  14. Praying today, Monday, has been a “high” on the every changing roller coaster of life. I hope Phoebe is doing better after a day on antibiotics. May He continue to bless and keep you in the palm of His hand.

    Janet

    COLE’S Prayer Team

  15. This picture with the doggie nestling up to Phoebe and her baby doll has to be one of the sweetest pictures I’ve ever seen! I’ve been praying for sweet Phoebe, and will continue.

    Linda Robinson

Leave a Reply

Fill in your details below or click an icon to log in:

WordPress.com Logo

You are commenting using your WordPress.com account. Log Out /  Change )

Google+ photo

You are commenting using your Google+ account. Log Out /  Change )

Twitter picture

You are commenting using your Twitter account. Log Out /  Change )

Facebook photo

You are commenting using your Facebook account. Log Out /  Change )

Connecting to %s