Still No Sizures (Jan. 6, 2012)

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It’s 2 am and the EEG electrodes have still not detected any seizures. We praise God for that. They are still trying to regulate her sodium levels that are out of whack because of the Diabetes Insipidus and that has proven difficult, which I am told is pretty typical in the first 72 hours. After the first 72 hours the patients body will usually determine if the Diabetes Insipidus is going to be a temporary after-effect of the surgery, or if it will be a long term issue needing ongoing treatment with shots and-or nasal hormone therapies. Please pray that it will regulate back to normal. She has agitated a couple of times with purposeful movements which is good. I was a little disappointed to see that she still showed tremors during those movements. I was hoping those would resolve. I have a lot of questions for the neurosurgeon tomorrow about the Primary motre centre for shivering and the Anterior hypothalamus preoptic area. The thalamus is a major area connected to her surgery, and I am praying that this tremor will not be a permanent disability. I am afraid of the answers. Please pray. I may be getting ahead of myself, but research at least helps me know what questions to ask which is how we ended up in the hospital in the first place. The prayer request now is NO MORE TREMORS, healing in the hypothalamus, total reversal of Diabetes Insipidus. We thank each and every one of you and they way you are lifting her up as if she were your very own.

Phoebe intubated and resting after her seizure.

8:18 am-MRI and No Seizures: Phoebe made it the entire night with no seizures! This lets them know that her seizure yesterday was almost certainly due to the sudden drop in her sodium levels. This morning we are waiting for the team that will come and remove all of her electrodes so she can go to her MRI. There are so many different types of doctors involved in Phoebe’s case that it seems to take a while for everyone to coordinate so that she can be approved and prepped to go downstairs for her MRI. She will have a whole team of people taking her down because she has so much equipment monitoring her various systems. Trying to be patient and wanting some answers from that MRI. I didn’t get much sleep last night because I was on hyper-alert of course, but I’m glad that Nathan got to sleep with our 3 boys at the Ronald McDonald House. Looking forward to having some clothes and toiletries brought from Lindale today. I only packed clothes for 2 days when we came to the hospital last Sunday, thinking that at worst she might have something like Meningitis.

We feel so blessed to have friends who are taking care of those practical needs for us, and a big thank you to my friend Stephanie Franke who has taken my boys to play with her kids nearby for a couple of days. Our church family has been a great support, providing a hotel room our first 3 nights here and getting our meals. I share this, because many of you have asked if we had enough support. And to that, I say a resounding yes! We have been SO taken care of. Thank you all for your prayers and concern. One of the neurosurgeons just came in and I asked him about the possibility of damage to the hypothalamus. He said that we need to remember that her brain is very “angry” for lack of a better word, and that she just had deep, center of the brain surgery, that touches many brain centers and it will take some time for everything to “reboot”. He said he is not concerned at all about the tremors and that they are pretty typical of someone recovering from this type of surgery. I am pleased with that answer, but tired of the roller coaster of emotions each day brings. Hoping she gets her electrodes off soon so we can get to her MRI. Thanks ya’ll for following Phoebe’s story, reading the guest-book each day is a highlight for me.

11:15am-In the MRI: She’s in the MRI, please pray that she remains stable during the exam and that we get good results. The MRI will be the detailed screening letting the surgeon know exactly how much of the tumor they got, how much remains, (because he does expect that “crumbs” will be left), and what type of chemo regimen is needed. Praying that he is pleased with the results and that no more surgery is needed.

4:12 pm-Waking Up Slowly: We still have not heard the MRI results but Phoebe is looking good. She came out of the MRI heavily sedated since the exam required that she be completely still. Now they are not sedating her at all, but waiting for her to wake up on her own. This is the tough part, because her hands are strapped down and she will struggle against the tube down her throat as she becomes more lucid. They said she will need to be very awake for 20 minutes straight before they can remove the tube, otherwise we risk her being unable to breath on her own and they would have to intubate her again. I don’t know if I will be able to handle the 20 minutes that she will be gagging and struggling and trying to pull tubes and crying. Please pray for her with that (and me). They did say that she will not remember any of this which is good. So, now we wait to see how she wakes up and if she tremors or not. I expect she will tremor for a time, but please pray that passes quickly. I really want to see her have a peaceful night. The plan for tonight is for me to go to the Ronald McDonald House with my boys while Nathan and my Mom stay up here and keep an eye on Phoebe. We have a wonderful nurse named Abby who is extremely attentive to Phoebe and whom we love. We have had a wonderful experience with the nurses and doctors here so far. I’m off to see Phoebe now for a few minutes while she attempts to wake up. I am hoping to put a video up of her awake whenever that may come. Thank you everyone for your prayers for our girl.

6:06 pm-Waking Up: She’s waking up and doing well so far. They are wanting to see her be fully alert and responsive for 20 minutes before they remove the tube. Please pray that that comes soon. Great MRI report that they are extremely pleased with what they saw and that the pituitary gland shows no damage so they expect that the Diabetes Insipidus will NOT be a long term issue! Okay, going back in with my girl. Keep those prayers coming, I feel like I am witnessing a very beautiful thing.

9:28 pm-Ronald McDonald House: I am at the Ronald McDonald house tonight and thankful to have some “normal” time with my boys. On the other hand, I am torn..I want to be there for Phoebe as she continues to slowly awake. Getting use to leaving her somewhere else when she is sick is so counter-intuitive and will take some time to feel okay about I suppose. Nathan and Mom are on Phoebe duty tonight at the hospital and I trust them completely. Mom will text updates throughout the night and let me know if she wakes up enough for the tube removal. They expect her wake up very slowly because she was on several, high dose anti-seizure medicines that take considerable time to wear off. She seems to be regulating her body temperatures well and they are getting closer to finding the perfect balance of Vasopren for her sodium issues. I am going to sleep tonight hopeful that I will get to see her blue eyes open and recognizing me tomorrow. Goodnight everyone. Thank you all for being a part of this journey.

11:01pm-A Tribute of Phoebe:

For those who want to get to know who Phoebe really is, here is a precious little slideshow that my hubby put together. A look into the personality of Miss Phoebelicious and the whole Fair brood. Be prepared to be overwhelmed by adorableness! And her parents are pretty cute too!  😉

Enjoy!

http://www.youtube.com/watch?v=AVCMOiWC_SA

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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