No News Is Good News!

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It’s 12:26 am and Phoebelicious is sitting next to me in bed watching Veggie Tales. Special permission for such things gets granted to cherubic, fuzzy headed girls in this family. It’s been so nice to have her home again albeit, a lot of work. Thankfully we have our dear friend Jocelyn here to help and she has been a huge blessing. We have a rotating “Phoebe night duty” schedule where either Nathan or I sleep with Phoebe and then one of the 3 of us usually sets an alarm to give meds and/or check on Phoebe and the night duty person to make sure everything is okay.  It’s working pretty well so far although I think we’re getting spoiled by having an extra pair of hands around!

We have not taken her out to public places yet because she is neutropenic, but have spent our time at home, going on walks with Phoebe in the stroller or watching the boys jump on the trampoline in the backyard or taking her for bike rides with the little bike-trailer attached. And of course Veggie Tales, who can forget that? Today we had to take her in for a physical therapy assessment and it was decided that she will begin receiving in-home PT, OT and Speech therapy rather than have her inpatient for those during her home time. I can’t imagine having to go inpatient at another facility in between chemo treatments and I was really nervous that they might prescribe that. In the future she might need inpatient PT, but for now we are goign to have it at home.

Tomorrow we take her in for an Echocardiogram and to have her labs drawn and make sure all of her levels are still good. It is so nice to have Jocelyn here to home-school the boys while we run around to all of these appointments. Sure, one of us could stay back with the boys, but it is so much easier to get her in and out of the car with her ng tube and attached bag and all of her stuff when two people are there. I have been praying about a helper of some sort for the future, but am not sure if/how I want to go about that yet. My hope is that we will get into a groove now that chemo is becoming a little more manageable and we won’t need one.

Life is good, and Phoebe under our roof is great. Having her here at home and doing so well has given me enough of a breather that I am starting to find  interest in the things I am usually interested in again. I feel like life since January didn’t leave a big reserve of energy for me to draw from when I was not tending to Phoebe, and it is nice to have enough free space in my mind again to think about things other than cancer. I have been catching up with the election news, pouring over curriculum catalogues, reading up on the benefits of  juicing and feasting on self-sufficient living articles in my Mother Earth News magazine. I am thankful for the “exhale”…and praying for more of that where I can find it.

It’s not normal life, but it’s as close as we can get right now and I am seeing God’s provision around every little corner. The way He provides help just when I am reaching exhaustion point, or how an on-call doctor volunteers to drive to our house to replace a clogged ng tube, or what my children are learning through all of this. He is in it all even when I am too tired to recognize Him there. He never sleeps..

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. That just brought tears to my eyes, so moving! Your all such an incredible family and it sounds and looks as though you have an entire football team caring for not just Phoebe but all of you!! Each person takes their own position and runs with it. I love to see her sitting up and smiling in all these photos. Will continue to pray for excellent numbers, and steady progress and so many resources at your fingertips! Thank you for sharing-you just made my day:) we love you Phoebe and will continue praying and fighting right along with you.

  2. Looking good …. Thanks for sharing. Daily prayers for strength & energy & health & happy days ahead for ALL of you!

  3. Just look how God is working in Phoebe! Awesome!! Praying and praying for health and for clear direction as to how to get extra help. It is a weary job and I am glad you see that you need an extra set of hands around to help.

    Always praying,

  4. This type of “no news” really is the most wonderful, since the Phoebster is always in my heart. Have a great week!

  5. So glad to hear “no news” – it IS good news!! So greatful to God for these days! Be sure you keep your prayer tank full – l’ll help with that!!

  6. What a blessing it is that God has “given” you Jocelyn to know your kids so intimately and love them so and that she can be there for you now. I’m thankful for her for you. 😉 And, I love that you have a felt a little margin over the last couple of weeks to think about things that aren’t cancer related… and I’m thankful that Phoebe gets to be home for her therapy! What a good post! Praying for the decisions to be made and for the tests coming up! Love you!

  7. Dear Amey. I love you. Reading your writing reminds me why. I just love you. It’s wonderful to hear about your time at home with your whole family, with help as well. It’s good to hear about your mental free space… sorta feels like, welcome back, Amey. 🙂 I’ve missed you. Like you said, it’s not normal life, but if there are curriculum cataloges involved, something feels right. 🙂 I spent time reading my Mother Earth News last night waiting for a nasty storm to pass before bed. Wish we could feast on them together, but in a way, we are. Before you know it, I’ll hear that you’ve got laying hens in the backyard hoping neighbors won’t mind. 🙂 Thanks for the update. Love you ~Lacy

  8. You are learning to praise Him in the storm, and rest in His arms!! Life is a learning experience in good times and bad, and I think you are learning that, just as we all do. I am so thankful you are having a little time to be Amey and do some things you want to do. I hope Nathan is able to do that too. Phoebe needs her mom and daddy, but she needs her mom and daddy to be at their best. It’s hard to be your best when you are running on “fighting” mode all the time. “Resting” mode is kinda nice too!!

  9. Amey we are totally thrilled to see the new pictures of your precious baby girl at home with all of you. I know the feeling of being free from hospital life for a breather and it is heavenly… Phoebe looks really good. Home life sure seems to be great medicine for her. God is so good and we praise HIM right along with each of you for the miracles he has done for Phoebe and will continue to do. Praying for good test results this week… God Bless And Keep Each Of You Under HIS Strong Arms Of Protection.

  10. Thank You for the update on Phoebe and Your Family. I am Happy to Hear of These Precious Moments You are Enjoying as a Family Now that You Are All Back Home. You Are All In My Prayers. The Lord Bless You All.

  11. Amey,
    When you mentioned Phoebe’s little feet pointed downward, I remembered that years ago when I was practicing nursing, we used to put soft tennis shoes on patients, even in bed, to prevent “foot drop”. I hesitate to insert unasked for advice ( the WORST kind), but i felt I should mention that maybe you could ask the physical therapist to evaluate her feet. ( They probably already have– you seem to have such an outstanding team of drs, nurses, and therapists). Please forgive me if I am out of line in mentioning this, and know that my intention was only to help.
    God bless you all,
    Kay

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