Easter Update

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Phoebe had a good day and that means I had a good day. Going to church on Easter Sunday as an incomplete family was not my favorite, but all of us spending the day in her hospital room afterward was great. She looks so clear in her eyes now that the Methadone and Valium are weaned down so low. Her speech is more clear and she initiates conversation, even tells the nurse “that’s annoying!” when her monitor beeps insistently. We blew bubbles and colored and played with her new bracelets, we walked the halls in her pink stroller all dressed up in her Hello Kitty hair bow and we sat for a time in front of the fire place in the lounge. But my favorite part of the day was when Phoebe and Deacon got into an argument. I LOVED THIS because it means Phoebe is feeling herself! Deacon was coloring with a marker and Phoebe took it from him, “Mine!” she scowled. “No, Phoebe, I’m using that!” said Deacon. “Mine Deacon!” she said again, furrowing her brow..and so it went for a minute or so. And I just watched, and smiled. Her spirits are high and her personality is emerging again, but her physical strength is very diminished.

Physical therapy was tough today. She wants to stand up and she can’t. Each day we hold her under her arms and lift, and wait to see if she will hold some of her own weight with her legs, and each day she has no strength and crumbles back into the chair in tears. We try again and again, and she cries again and again. She braces herself, even scoots forward on the chair she is so ready to stand and play and go places, and it is heartbreaking to watch her feel so sad when her legs don’t work the way she so desperately wants them to. This weakness is a mystery to the doctors. She was intubated for a couple of weeks yes, and that would cause some weakness, but they now suspect that her breathing issues are because of a weak diaphragm and no one can explain that. Steroids also cause muscle weakness, but not usually to this degree, so once again Phoebe is unique.

She has had some vomiting the past day and a half and her white cell count is high so please pray against any type of infection. She has not had fever and she seems to be feeling great which are good signs, but we are entering in to the low count part of her chemo cycle when she will be very vulnerable. At this point in her cycle she is no longer allowed to have visitors outside of the immediate family, the infection risk is too high.

The pulomonologist has Phoebe on a bi-pap machine at night to help gently push air into her lungs and help expand them and she is doing very well with that. She is actually sleeping at night and awake during the day and we are not quite sure what to do with ourselves. Just when we had gotten used to the 3 am party hour, she changes the game. Her lung x-rays look better already and her breathing seems improved, so we are glad to be doing something to improve her respiratory status.

As always, it’s a mixed bag…in many ways she is doing great, in other ways she still struggles. Please keep Phoebe in your hearts and prayers these next few days as things get sticky. We are praying for smooth sailing and an uneventful neutropenic time.

~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.

8 responses »

  1. Happy to hear that the Fair Family had a BLESSED Easter….even the argument….that had to be music to your ears!
    Praying God continues to strengthen Phoebe thru this next week!
    Thanks again, Amey, for the update. Love to hear how Phoebe is doing!

    Blessings,
    Peggy & Mike

  2. Such a mix, you’re right. Phoebe is such a fighter in so many ways and I pray that those little muscles start fighting right along with her. Breaks my heart to think of her struggling but makes me happy to hear about all the positive things she’s doing as well. Sunah has asked for Phoebe so many times and each night as we pray – she continues to smile when we say her name an then she wants to tell me the entire story as to why Phoebe is in the hospital and then Sunah doesn’t understand why we can’t go see her.
    I thought about you all today as we hunted for Easter eggs and sat down to eat – I hope your next Family holiday all together happens soon! I’m so sorry your having to go through this time. Your posts are so important to us and dear to our heart. We continue praying and fighting, and love you Phoebe Fair!!!
    The Williams Family

  3. You always see the bright spots whent things are so hard. This is encouraging for all of us facing struggles that pale in comparison. I know you are thankful for those little normalcies; a little bickering, the Hello Kitty jewels, and all of you just being together. I pray that Phoebe gains strength and continues tolerating the chemo well. I hope to soon read that she is home for longer and longer periods! Bless you and your family. Sherry Jordan

  4. Happy Easter Fair Family! Thank you for the report and know that you are in our daily prayers!

    Much Love From Washington State!

  5. It was good hearing a nice report on Phoebe. I will pray for the strength to return muscularly and for her progress in her PT sessions. I will praise God for her accomplishments and continue to ask Him to heal her completely. She looks beautiful! Much love from the Anderson family

  6. Praying for strength! It is so nice to hear Phoebe is doing so well, what a strong fighter she is!

    Thanking and praising God for what He is doing in her body so far. Continuing to seek health.

    Praying and praying,
    <

  7. So thankful for some good news with her lungs and her will to be a little fiesty!! 🙂 But will keep her in our thoughts and prayers and the next few days are crucial to her. I am praying too for her muscles to be strengthened so that she might be able to get up and around. I know she would love to be able to walk around instead of being taken around in a stroller. We hold on to the promise that God is our healer and He is holding on to Phoebe with both hands. God bless!! Shawna

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