Happy To Be Here

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The instuctor nurses have been calling and coming by today and you know what that means? We are being prepped to go home for the weekend! It is still undecided, but we are headed in the right direction with good, level sodiums, successful oxygen weaning and a little Miss who keeps asking for milk and to get out of bed. She hasn’t passed her swallow exam quite yet although she IS swallowing sips of water and small bites of applesauce for her speech therapist. I’m not sure what qualifies as a “pass”, but in my opinion she’s doing great! I will be glad when I can fulfill her request for milk!

While Phoebe was in ICU it was discovered that she had a large cavity in one of her teeth. Apparently chemo does a number on the teeth alongside everything else it does, and dental issues are not uncommon. None of my boys have ever had a cavity, so it was a little sad she should have such a large one at such a young age. On Thursday she will go to the OR for sedation and removal of the tooth. This procedure could be a set-back for going home if she has difficulty with sedation or the procedure itself. Also, her fluids will have to be turned off the night before and any time Phoebe’s fluids are altered, her sodium tends to swing out of healthy range.

Please pray for everything to go well with the procedure and that the endocrine team will handle her fluid situation with wisdom so that she will stay on track with her stable sodium levels.

The tentative start date for the next round of chemo is next week sometime. Phoebe’s healing mouth will play in to that equation, but otherwise she is doing well enough to begin her next round. I feel a heaviness even thinking about starting this all over again. She is finally coming back to us and manifesting her sweet, silly self and we have to knock her back down. This is the heartbreaker with chemo. If we had the luxury of waiting longer, we would, but AT/RT is sneaky and fast and not something to be trifled with. All of Phoebe’s residual issues from her bout with sepsis are reversible, the loss of muscle tone, the swallow reflex, the fatigue…the only thing in Phoebe’s body right now that can’t wait to be dealt with is the cancer, so here we go again.

And I’m happy to be here. Because to be here means I’m not the Mom I saw weeping the other day on the patio, clenched fists wringing out the grief of saying goodbye to her 7 month old that fell head first out of the grocery cart. And I’m not the mother who has just taken her child home on hospice care. To be here means that I’m not keeping vigil at the bedside of my septic daughter waiting to see how things will shift. To be here means that we get the opportunity to fight again. Living in the ICU for 3 weeks lends a certain amount of perspective to our situation, and turns any self pity I might harbor into gratitude that we are where we are today.

Getting to take Phoebe home for a few days and have everyone under the same roof at home would be amazing and a great morale booster for all of us. I keep imagining her face as we stroll her out into the sunshine for the first time in three months and it brings tears to my eyes every time. I pray that is a sight I get to behold very soon!

~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.

16 responses »

  1. Praying for you Phoebe for a safe tooth removal, healthy levels and a reunion back home this weekend:)!! We love you an will continue fighting right along with you…

  2. I’m praying that the sun will be shining the day she gets to see her pretty bedroom. I hope it’s soon. Thanks again for sharing your journey and helping me to also remember to put my life in perspective. Love to you all Fair family.

  3. Amey, as always, your words touch the part of me that immediately springs forth prayers to the Father. I’m happy you are there, too…and my heart aches for those other mamas who wish they were where you are right now. That being said, prayers for the dental procedure to go well, for Phoebe’s levels to be just where they need to be and that your trip home to be a complete family is just on the horizon. And because the Father cares about every detail, I’m also asking Him for a beautiful day of sunshine that day which will reflect the Son shining in each of you. You have said many times what a blessing the various folks’ words of encouragement are to you all…that is a two-way street. Being part of the prayer team for you all is a blessing and a privilege beyond any words that I could say. I’ve shared Phoebe’s story with one of my Nicaraguan friends whose little boy has cancer and she is now joining me in praying daily for Phoebe…as a matter of fact, she asked about her today. Phoebe is touching the world!

  4. Praying, praying, praying. Please Lord give Amey, Nathan, Phoebe and her Mighty
    Defenders, the Brothers, their hearts desire to be at home for a few days, to be “average” and have sweet fellowship together. Praises for all You have done, will do and want to do. We plead the promises You have made for comfort, strength and courage. Thank you Lord.

  5. We are praying in agreement with you sweet Amey we love the new pictures and the video is precious. We love you all.

  6. Home, home, home!!! Praying for sweet time at home together for you all! For a tiny little miss to fall asleep tucked up in the frilly, pink goodness of her own bed!!! For time in the yard with sun and smiles! Jesus please let it be so!

  7. Such a beautiful little girl! Praying that your family is together for the weekend and you enjoy every moment together! The sun will shine brighter when that happens! I am already praying for the doctors and nurses if Phoebe starts chemo again next week. Thinking and praying for your family always.

  8. Amy,
    The teeth do take a beating, especially with the lack of eating. The gums take a beating, also. It’s amazing how much we learn from our trials and tribulations. Phoebe’s permanent teeth will fill in the gap, in time.

    I’m praying that Phoebe is stable enough to go home, even for just a day out. It would do you all good.

    Prayers,
    Anita

  9. Praying that she gets to go home soon for a few days! Also praying that her tooth removal goes well.

    Jennifer B

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