Tomorrow is the day, if all goes well!

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Deacon plays with Phoebe

She didn’t need the tooth extracted! She is however the owner of a shiny new silver cap and two little fillings. The Methotrexate lumbar puncture went well and she is being watched closely for any ill effects although none are expected. She also had a hearing test while she was sedated and she has no sign of hearing loss so far! Aside from the Methotrexate injection which makes me nervous, it was a day of good reports. It is much easier to recover from the light dental work she received than an extraction and now I don’t have to worry about that healing up before her next round of chemo knocks out her immune system.

She is on track to come home tomorrow if she continues to do well tonight. Her sodium levels have been stable, even with the change in her fluid status for her sedation. Her breathing went very well while she was sedated and she came off the vent right when the procedure was finished. Things went BETTER than expected which is a nice change.

I spent this evening cleaning the house from top to bottom and sanitizing everything in sight. It was a bad day for germs in the Fair household. Phoebe’s room is ready for her and the welcome banner the boys made is hanging from the mantle. I wonder what she’ll think coming to this house where we now live that she has never seen? I put all her familiar stuffed animals and toys out where she will see them first thing when she comes into her room. I want her to know this is where she belongs and to feel at home.

Then there’s the part of me that is absolutely terrified of not having her every move detailed on a monitor I can look at. I have gotten used to knowing how many times her heart beats every minute and how much oxygen her body is absorbing. And what will I do without the sodium tests? Oh me. That is my prayer request tonight; that I would not be overcome with worry the whole time she is here or be unable to really enjoy this time because I am waiting for certain disaster. I know it won’t be simple, but I would like it to be as stress-free as possible.

We are looking forward to seeing Phoebe outside, seeing Phoebe with her dog Sadie, seeing Phoebe in her new room…I am holding my breath and praying she remains stable enough for discharge.

Thank you all for your love and support and for taking the journey with us,

~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. Best of luck to you and your family!!! I hope that your weekend is full of joy and that it is all you have hoped it would be. I am so happy that all of the prayers are working! I have been reading your posts faithfully and actually look forward to your posts with eagerness, knowing that things have been looking up for you!!! Thank you for your willingness to share in your journey (even though I am a complete stranger)! It reminds me of how precious life truly it! As I read your blog I am reminded to not take a moment for granted, because life is full of twists and turns and we are uncertain of what path we are headed. All we can be sure of is that God will guide us, and I am so happy to hear that your path looks to be taking you home! Praying that things continue to go well so that she can enjoy seeing her new room!

  2. We keep praying and you keep trusting Amey, Phoebe will be fine – No – she will be great at home!!! Trust God – he will be your heart monitor and you have already so much medicine input that you guard Phoebe so well. You will see signs on her if she´s not doing good!
    I hope so hard that you will have your first Family Night together in the new house!!!! I dare to shout it out loud already but I will when you get to go home! So long I will keep my excitement low.
    So sleep well Miss little Miracle and family and get packed for tomorrow!!!
    We already pray for angles around and in your house that nothing wiil harm you and all will guard you! Get rest Amey for the flood of neighbors wanna see the little girl!

  3. So glad Miss Phoebe gets to go home soon! It took us a while to adjust to Scarlett being off monitors, too, and now, we’re adjusting to not seeing doctors as often. Eventually, you will get used to the new Phoebe, and the new way to be her mom. You’ll be extra careful for a while, but eventually, she’ll just be her, and you’ll be at ease. Fingers crossed that you are all home tomorrow!

  4. Excited to hear about all the little miracles today! Will continue to pray that all goes well through the night so that little Miss Phoebe will be able to go home for the weekend. Praying that as she comes home you will have the Peace that passes all understanding fill you so that you will be able to enjoy every precious moment.

  5. Amey, I have been chatting with God a lot the past couple weeks. I am so excited for your Phoebster to check out her new diggs. What I am especially happy about………..Phoebe gets to have a bit of time with her sibblings……some unmonitored time…….that will do everybody some good.. It will help your boys out, I think. Just the positive outlook that things are going in the right direction. I pray that all goes smoothly…….just take baby steps. You’ve known what to do for quite a while……..in fact, you could teach some newby nurses how to manage Phoebe. It’ll be allright. God will be there the whole time. Prayers.

  6. We will be praying for you all today. I so hope that Phoebe can come home! I will especially be praying that it will be a time of sweet moments and no extra stress. I pray that Jesus will take away all the fear in a way that only He can.

    Love and prayers everyday!

  7. Amey, I know you will be thinking about all those things you mentioned in your last post when Phoebe comes home but you’ll soon realize that she’s in your home and you’ll push those thoughts to the back of your mind and just enjoy being with her outside of the hospital. I pray for a joyous reunion at your home for your family to be with Phoebe. I’m so excited I’m shaking and I have tears in my eyes. I love the beautiful pictures you post of Miss Phoebe, what a beautiful and prescious girl she is. Have a wonderful homecoming!

  8. I am so glad to hear that Phoebe didn’t need the tooth extracted!

    Turn your worrying into praising God. He is with you always and He will guide and direct you in the care of Phoebe. Trust in Him.

    Praying and praying Phoebe will be able to go home and that all will be well with this set of chemo treatments.

    <

  9. I’m praising God for Phoebe’s recovery and good day yesterday! You will have that peace that passes understanding when she is home with her family. Because you trust Him with all your heart, you do not lean on your own understanding and He is directing your path and will continue to do so! Rest in Him! Praise the Lord!

  10. I know the mother ❤ is to be concerned, but we know that in Is.26:3 God says He'll keep you in perfect peace as your mind stays on him, cause you trust un Him…We know you are trustng in Him as we all agree for a fear free weekend and lots of fun with our Phoebe……

  11. I am new to your mailing list. My daughter was a “ywam-er” and she asked me to join her in praying for Phoebe and you (and your family). Oh, how adorable and precious is lil’ Phoebe! My heart aches for all that she and you are going through. I LOVED reading of her prophetic word: “I’m a miracle.” I’m believing this with you and am thankful to be joining your prayer team.

    The verse that comes to mind now is Isaiah 40:11 ~
    He tends his flock like a shepherd:
    He gathers the lambs in his arms and carries them close to his heart;
    He gently leads those that have young.

    May you rest well, Amey, while Phoebe is home, knowing that Jesus holds her in His arms, close to His heart. Praying for all of you ~ .

  12. Sister, you know more about her medical needs than anyone else. You’ve learned the lingo, become keenly astute to her whims & signs, and location doesn’t phase God. ALL GOOD (I know, easy for me to say…my only comparison would be bringing home a newborn for the first time & watching him the whole time…touching him, doing the water on the finger in front of the nose test, etc. to make sure he was still breathing), but He’s carried her this far. Praying for you all, as I imagine sleep will be difficult for you this weekend, but what a blessing for our girl to be home. Let us know how it’s going and know WE LOVE YOU ALL DEARLY!!! Can’t wait to see some pics & video of her reaction when she saw her room. Hugs!!

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