It’s been a busy couple of days. We ventured out of town this weekend to visit my parents in North Texas and at bedtime the first evening was when we realized we had left Phoebe’s water pump charger at home. It never fails, we end up out of town without an important medicine or in this case a battery charger that we desperately needed. We decided that we would try to make a go of it by just using the pump at night when she needs continuous water through her ng tube and we would manually push water into her tube through a syringe every fifteen minutes for her two day bolus’. Fun.

Everything was going according to plan until the 2nd night when I dropped Phoebe’s DDAVP vial on the kitchen floor when I was drawing up her bedtime dose. It smashed to pieces and I was fortunate to be able to get the last few drops out of the smashed bottle, enough for her bedtime shot dose. But DDAVP is what regulates her kidneys and urine output so she MUST have it every twelve hours. Which led to a midnight conversation with our endocrinologist in Dallas and a prescription fill at a 24 hour pharmacy 45 minutes away. Take note: if your child has cancer, living near a 24 hour pharmacy is a must. Nathan was going to leave early in the morning to fill the prescription before her next shot was due, but at 2 am her water pump battery began to beep letting us know it was dying. Phoebe can’t make it through the night without a water bolus, so we either had the option of setting our alarm for 15 minute intervals and pushing water through her tube for 6 hours straight or Nathan driving her the hour and  15 back to Dallas to plug her pump in.

So, At 2 am my husband; the best father in the world, loaded Phoebe up and drove 45 minutes to Denton to pick up her DDAVP med and then home to Dallas to hook her up to her water pump. At 7 am she spiked a fever and at 8am it hadn’t abated, so off to the ER he went with her. This man deserves a Gold Medal in being a servant hearted husband and father..Phoebe was given antibiotics as a precaution and then admitted when her sodium level came back high because they wanted to regulate her sodium for her MRI today. So, Nathan’s Dad came and got the boys and I in North Texas and I traded places with Nathan at the hospital.

Without making a long story even longer, I’ll just say that I spent my night arguing with the new resident doctor about water levels and trying to get Phoebe’s saline bolus switched from 1/2 normal to 1/4 normal and sneaking Sprite to her. At 6 am when all of their efforts failed and her sodium was going UP rather than down (which is the whole reason we were admitted in the first place) he finally let me run the show. I told him I wanted 70 mls in her ng tube water bolus and her IV saline reduced and I proceeded to give her water pushes through her syringe when no one was looking. This is such an uncomfortable  position to be in sometimes, but I have discovered that she suffers when I don’t advocate for her. Who knew we would have to be so “on our toes” in Phoebe’s care  regarding even the medical side of things? I find that most doctors will say “You obviously know your child better than we do, BUT we want to do x,y,z and see if that works” and when I already know AND TELL them that we have tried x,y and z before and it doesn’t work and they don’t listen, what do I do then? Grrrrrrrrrrr.

So, at long last, her sodium is on the down swing thanks to the help of a nurse that knows me and Phoebe well. She told the resident to hand over the reigns 🙂 Lol. I am not trying to sound prideful, but it really IS true…when it comes to managing Phoebe’s Diabetes Insipidus, we do a better job than the residents on the floor. End of rant.

Right now Phoebe is in the playroom painting with her friends who have Leukemia. I have missed being around the other cancer parents here. There is an instant, overwhelming connection with a parent who has a little one with cancer. The woman I met today has been walking through chemotherapy with her 3 year old daughter since 2010. Incredible. The other sweet family we always encounter in the halls has a 1 year old with 2 separate types of Leukemia. She is now on experimental drugs. My heart aches and swells in this place. I want to wrap those parents in a big hug and cry with them, but I rememeber my reaction when others have done the same to me. At times, the veil is so thin between maintaining composure and completely going over the edge and pity from others can shatter you into a thousand tiny little fragments. So, I maintain my composure with them so that they may maintain theirs. We both understand.

It is noon now, and soon Phoebe will be be taken down  and prepped for her MRI. She will be intubated and sedated and it will take 2 hours to complete the procedure. She will also receive her intrathecal (spinal) chemotherapy injection for this next round. We will have results shortly after the MRI. Please pray that she does well with the entire procedure and of course for No Evidence of Disease.  MRI days hold a lot of anxiety and also a lot of joy when the results are clear. But we also understand the gravity of these test results should they be bad. Thank you all for standing with us.


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. Amey, you and Nathan are AWESOME!!! Nathan does need a Gold Medal and so do YOU!!
    Thank you for feeling that you can “rant” whenever you need to. Prayers on the way for Phoebe to be safe during the testing/treatment and for comfort and peace for you, Nathan, the boys and all of the family during the wait! We will be anxiously awaiting to hear the results!
    Post when your heart allows. {{HUGS}}

  2. Praying for little Phoebe today and for ALL OF YOU! Please dear Lord let there be good results from the MRI today and no side affects from the procedure

  3. Luv u Phoebe Fair!!!! We pray for clean MRI results and very minimal side effects from your next chemo round;) praying and fighting and will check for updates. Stay strong mom and dad- just as you have been all weekend! Get some rest these next few hours! Love – The Williams

  4. Don’t EVER stop advocating for you will always know her better, so don’t feel bad or prideful. Praying for good results and great recovery from anesthesia.

  5. Praying for good numbers and especially good news about sweet Phoebe. Our God can do it. Love to all, Pat Williams, a grandmother in Tuscaloosa

  6. Phoebe is looking more and more like herself. This is a good picture, and I can see that sweet smile I remember. Good to see her looking so good, and WALKING!! Praise God for that, and for every small and big victory. Praying for you all today, and trusting the Lord with you. Love, Lacy

  7. Amey, you are a rock and you are so right to advocate for your precious Phoebe. So thankful she has you and Nathan as her parents. Praying for your precious girl while she gets her MRI and the results. This photo of Phoebe is so precious!!! She looks like a doll. Lifting you all up right now, and praying God’s perfect peace surrounds you and your sweet family. Much love and prayers from VA. Nadya 🙂

  8. Oh Phoebe, you are so cute! We are praying for you all today…may your strength be renewed and peace overwhelm you. Keep stickin’ to your guns, Amey!

  9. Dear Amey and Nathan,
    Oh dear, it is so hard to have to be a parent and a physician at the same time. And yet, that is the position you are in. So hard. I’m so thankful a nurse finally stood up for you and let you do what you do better than anyone in the world — take care of Phoebe.

    Will be praying for a good report from the MRI. love the sweet picture, I so much feel like I know Phoebe,

  10. Praying for a good MRI report and a smooth and easy treatment. Phoebe looks wonderful. She’s such a beautiful little angel ….

  11. You do have an amazing husband and you are equally AMAZING Mrs. Fair!! Praying for a clean MRI and that God will continue to give you wisdom on Phoebe’s care.

  12. Yes, Nathan is amazing. What a gift! Oh, Amey, we cry with you and although I can’t ever understand the depth of ache you experience I do ache with you. I love you Sweet Friend. I am interceeding for ALL of you. Love you all and BIG HUGS FROM CALI!

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