The Day After: Phoebe has a Seizure (Jan 5th, 2012)


6:53 am: Nathan and I returned from the hotel around 6 this morning. It was so hard to leave last night, but we are realizing that in order to be there for Phoebe, we have to take time to sleep. Her grandmothers kept watch through the night. Phoebe has had fevers off and on all night and has dozed off only a couple of times. As a Mom, this alarms me, to see her shaking and shivering and to see her awake for so long after such a major surgery. I wish she would rest. They will take her in for her MRI in about an hour and we are really thankful for that because we were originally told we might have to wait until later in the afternoon which would be difficult since Phoebe can’t eat or drink from now until then. We are concerned about how she’s acting, and the fevers, and are praying that we get to see the neurosurgeon very soon to ask some questions.

Fancy girl (2011)

Please stand with us for our baby girl, as a parent, it is so difficult not to be able to just pick her up and hold her and keep her warm. During the night they also gave her a hormone to regulate an issue that she’s having called Diabetes Insipidus. The tumor was pushing on her Hypothalamus which regulates the hormone that controls urine output and kidney function, so she is moving fluid through her body too quickly and that makes her sodium levels high. This is often a situational issue like gestational diabetes that resolves when the body goes back to it’s regular state, but it could also be a long term effect of the tumor that has to be regulated with hormones the rest of her life. So, lots to be prayed for today. 1) That her MRI would go well and that she would not have a bad reaction to the anesthesia 2) Good MRI results 3) For the fever and tremors to stop 4) For Phoebe to sleep 5) For brain swelling to go down and good healing going on in there 6) That the Diabetes Insipidus would abate and her hypothalamus would return to normal. Thank you so much for your prayers.

12:21 pm-Phoebe Has Seizure: We were just in the room with Phoebe and the nurses were taking a blood sample from her foot when she started seizing. The seizure lasted several minutes and she had to be given anti-seizure medicines to stop it. They intubated her and took her down to have a CT scan to see if there is any bleeding on the brain. They suspect it was a large drop in her sodium due to the Diabetes Insipidus that caused the seizure and assured us that with brain surgery this is not that uncommon. It felt VERY uncommon to us, because this is all new. It was sheer panic, tears, etc. for a good 45 minutes. We need strength. I am spent with crying. Thank you all for staying on guard with us in prayer.

1:44 pm-Seizure Update: The Dr. just came to report that there is no change in Phoebe’s brain scan from yesterday, so no bleeding, which is very good news. But, she is still having some tachycardia which could indicate that she is having some internal seizures. Right now we need to pray that her heart rate would return to normal, that her sodium levels would regulate and balance and that her body temperature would normalize. Her heart rate is 154 right now and it needs to be around 120. Her sodium is at 138 and it needs to be about 145. Thank you all for praying…

6:17 pm: It was a scary afternoon, but we are in a good place now. Phoebe is still intubated, her sodium is being more closely monitored and doing well, her heart rate is down into the safe numbers and she is sedated. Her fevers totally abated once she was sedated and given fluids. Her body was just trying to regulate too many things at once, and her tremors were keeping her awake and actually causing the fever. So, the seizure situation actually revealed that she needed sedation in order to allow her to get some more help regulating her body functions. She is sleeping, and peaceful and still responsive, moving around when people mess with her and breathing partially over the tube.

The neurosurgeon showed me her before and after CT scans and the difference was incredible. He is very pleased with her progress and feels strongly that we are just looking at the cause of the seizure (which was 30 minutes long) as the Diabetes Insipidus. Just to be certain, they are doing an overnight EEG test on her brain to detect any further seizures. Please pray NO SEIZURES will be detected, and that the DI was the real cause, since it is easy to fix. Feeling hopeful, and very encouraged by the neurosurgeon who sees this stuff all the time. This is new to us..but not to them. Thank you for your continued prayers…today was a rough one..

11:16 pm-To All Of Phoebe’s Friends Around The World: I wanted to take a moment to thank you on behalf of Amey, Nathan, little Phoebe and all of the family. It has been humbling and inspirational to see nearly 10,000 hits and countless amazing messages of hope, support and, most importantly, prayers for this most precious child. It is impossible to express how very much your support has meant to the family. Please continue sharing Phoebe’s page and praying without ceasing! We know God hears us!

Last night, I was honored to get some time with baby Phoebe and Amey (my very bestest friend of 27 years). Phoebe had spiked a high fever and was shaking tremendously from the anesthesia from surgery. It was very difficult to witness such a precious angel in that state. But I also saw the most touching, beautiful sight I have ever seen. One that moved me to tears. In the midst of her trembling and aggravation with tubes, two year old Phoebe asked her mommy to sing with her. Amey leaned over the bed, put her face close to Phoebe’s, Phoebe began to run her fingers through her mommy’s hair and, in the most beautiful voices I’ve ever heard, they began to sing “Holy, Holy, Holy”. It’s one of Phoebe’s favorites and she sang every word. Words can’t begin to describe how truly wonderful that was to witness. It was the inspiration for a poem I wrote for Amey when I got home last night. Her sister, DeDe asked me to share it here:

Angel in the Flesh
Have you ever seen a cherub’s face With dimples deep and sweet? Have you seen an angel in the flesh With tiny hands and feet?I have been blessed to meet one And stroke her golden curls. Her mommy’s little princess, Her daddy’s little girl. With lips as pink as roses And eyes of baby blue, She’ll own your heart in no time I know this to be true.Right now this little angel Needs all your prayers and love Her family needs the comfort Of the Father up above. The enemy invaded And planted cells so black We need all to stand against him And make him take them back. Saints from all around the world Are hearing Phoebe’s cries We’re ready to fight this battle Right by her family’s side, I know this path is scary I know this road is long But Jesus will sustain you When you feel you can’t be strong, God knew what He was doing When He chose her mom and dad Better parents you will not find There’s just none to be had, So keep your eyes on Jesus Stand tall down on your knees He knows how much we love her He hears our every plea, Call us when you need us We all are here for you An army of believers Lifting up our Phoebe Lou!

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.

Leave a Reply

Fill in your details below or click an icon to log in: Logo

You are commenting using your account. Log Out /  Change )

Facebook photo

You are commenting using your Facebook account. Log Out /  Change )

Connecting to %s