Praying for Pendulum (Jan. 9, 2012)

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5:59 am-SIADH: Phoebe is in a condition called SIADH where her body is holding on to water and therefore diluting the sodium. They cannot over-correct this or else she could be thrown into a very bad place. The Tolvaptan medicine they gave her last night after her seizure has not worked yet. They gave her another dose. It is 6 am…her body needs to let go of fluids to her sodium concentration can go up. Please pray now more than ever..we are the thick of it.

9:00 am-Still Waiting: We’re still waiting for her sodium to go up. There is a vast difference in Phoebe when her sodium level is at 127 rather than 125; she talks, is alert, initiates conversation. At 125, she is silent, fixates on something and is distant. It’s hard to believe that just 2 points can create such a contrast. Please pray that she will move up slowly in her sodium numbers, until then, we are on a very nerve-racking seizure-watch where one of us has to be watching and evaluating her at all times for pre-seizure behavior. She tends to get really sleepy, then agitated right before the seizure.

I realized this morning that I posted under Nathan’s name when I wrote about getting the call at the Ronald McDonald house that Phoebe was seizing. Lack of sleep will do that to you. I can feel the exhaustion, but I don’t know how to leave her again after that. I know God is in control, whether I am here with her, or whether I am at the RM house sleeping or showering, but I can’t bear the thought of her needing me and me not being here. I look at pictures that we have put up in her room, pictures taken just a month ago some of them..and think “how did we get HERE from there?”

I realized the other day that I haven’t seen her run for several weeks, no doubt because of the lethargy and general discomfort she was feeling, but I miss her sweet little lopsided jog. I miss holding her and giving her a bath. I miss just being able to enjoy her without this constant cloud of hyper-concern that rules my every waking moment. I know we are not the first parents to walk this road and we have been so encouraged by the families who have contacted us who have been in our shoes. We are blessed by all of the kind offers from friends and family to help carry the load in one way or another, and we are encouraged by the guest-book posts that we read and cling to, each day.

I know you are all standing with us, and I sincerely hope the next time I post, it’s to share that Phoebe’s sodium levels are on the rise and we are climbing out of the woods. Love to you…

12:14 pm-Urgent Prayer Needed: Please Pray right now. Phoebe  has some signs that indicate seizure is coming, we need heart rate to lower and sodium to rise. Thank you!

1:02 pm-Seizure Staved Off: I think we just saw Phoebe brought back from the brink of seizure with French Fries. No, I’m not kidding..they sent us a tray of salty potato chips, Goldfish crackers and french fries to feed her to try to help get her sodium up…and it worked. Her sodium level had dropped down to 122 and Phoebe was getting cloudy and her heart rate up. She asked me to pray for her and I did, and when I was done she said “read my Bible Mom”, so I did. We read about Paul commending Phoebe to the church in Rome in Romans Chapter 16 and we talked about how Phoebe was a helper to many and how our Phoebe is helping many people right now, by spurring them to prayer and moving them towards a closer walk with God. It was a special time. For about an hour we sang to her, rubbed her feet and talked to keep her with us.

Shortly after that, her sodium level was 124. Just as I was writing this, I got a call that her sodium was down to 111. I ran out of the waiting room down to her room and she looked perfectly fine. If her blood sodium had dropped from 124 to 111 that quickly, she would have certainly been in serious danger and a full throttle seizure. Sure enough, they retested her and her level was 127!!!!!! That is GREAT! She is now on her 2nd bowl of French Fries and I am hoping we have found the perfect combination. Rejoice with us at that 127 and please pray that it will continue to rise!

3:19 pm-Happy Moment: Phoebe has had a bath and in clean pj’s! Her sodium level is 130. She is currently in her mama’s arms being rocked. Thank you for all your prayers! We are blessed to have so many people lifting us up in this storm. Her Sodium is 139!!!

6:34 pm-Praying for Pendulum: Phoebe is steadily going up in her sodium numbers – a huge answer to LOTS of prayers on her behalf. Her sodium level is now at 132, which is great EXCEPT, we need it to slow down. A steep shift in sodium either up or down can be too difficult for the body to assimilate. She was 122 this morning and that kind of shift can be quite a swing. She has done very well, but is a little distant right now. So, please pray for the pendulum swings, that they would find a happy medium and just camp out there for a while instead of swinging wildly back and forth. We are assured that this is quite typical of a brain surgery patient, and that we will just have to ride the storm out and wait for her brain to regulate all these things again. While we wait, her little body needs strength to keep up with all the crazy changes, her “thermostat” needs to figure itself out again and get her fever under control, and after all that salt, she is thirsty but still off fluids. We count today a huge answer to prayer, and are so thankful for all of you who are a part of the journey with us. We are not out of the woods yet, but we can see the clearing. Love to you all..

 

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.

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